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Autism
A Disorder  of the Central Nervous System

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Important words found on this site. Autism Disorder Central Nervous System, Infantile, Kanner, Behaviour, Sensory, Blindness, Communication, Asperger, Syndrome, Spectrum, Epidemiology, Treatment, Physiology, Neurology, Genetic, Autistic Savants, Disability, Pervasive Development Disorder, Tourette's, Fragile, Williams, Down, Tuberouis Sclerosis, Symptomatology, Metabolism, Infections, Secretin, Children, Sibling, Transition

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Autistic Savants, Disability, Pervasive Development Disorder, Tourette's, Fragile, Williams, Down, Tuberouis Sclerosis, Symptomatology, Metabolism, Infections, Secretin, Children, Sibling, Transition
 Autism

Autism is classified by the World Health Organization and American Psychological Association as a developmental disability that results from a disorder of the human central nervous system. It is diagnosed by impairments to social interaction, communication, interests, imagination and activities. The causes, symptoms, etiology, treatment, and other issues are controversial.

Autism manifests itself "before the age of three years" according to the World Health Organization's International Classification of Diseases (ICD-10)[1] Autistic children are marked by delays in their "social interaction, language as used in social communication, or symbolic or imaginative play" (Diagnostic and Statistical Manual of Mental Disorders).[2]

Autism, and the other four pervasive developmental disorders (PDD), are all considered to be neurodevelopmental disorders. They are diagnosed on the basis of a triad, or group of three behavioral impairments or dysfunctions: 1. impaired social interaction, 2. impaired communication and 3. restricted and repetitive interests and activities.[3] These three basic characteristics reflect Dr. Leo Kanner's first reports of autism emphasizing "autistic aloneness" and "insistence on sameness".

From a physiological standpoint, autism is often less than obvious in that outward appearance may not indicate a disorder. Diagnosis typically comes from a complete physical and neurological evaluation.

The incidence of diagnosed autism has increased since the 1990s. [4] Reasons offered for this phenomenon include better diagnosis, wider public awareness of the condition, regional variations in diagnostic criteria, or simply an increase in the occurrence of ASD (autism spectrum disorders). The United States Centers for Disease Control (CDC) estimate the prevalence of autism spectrum disorders to be about one in every 150 children.[5][6] In 2005, the National Institute of Mental Health (NIMH) stated the "best conservative estimate" as 1 in 1000.[7]. In 2006, NIMH estimated that the incidence was 2-6 in every 1000 [8]

There are numerous theories as to the specific causes of autism, but they are as yet unproven (see section on "Causes" below). Proposed factors include genetic influence, anatomical variations (e.g. head circumference), abnormal blood vessel function and oxidative stress. Their significance as well as implications for treatment remain speculative.

Conversely, some autistic children and adults are opposed to attempts to cure autism. These people see autism as part of who they are, [9][10][11] and in some cases they perceive treatments and attempts of a cure to be unethical.[12]

Terminology

This article uses both "autistic people" (or "autistic person") and "people with autism" (See section below in "Sociology" for "Terminology").

History

Dr. Leo Kanner introduced the label early infantile autism in 1943.
Dr. Leo Kanner introduced the label early infantile autism in 1943.

The word "autism" was first used in the English language by Swiss psychiatrist Eugene Bleuler in a 1912 issue of the American Journal of Insanity. It comes from the Greek word for "self," αυτος (autos).[13] Autism was actually confused with schizophrenia during the early stages of observation.[14] Bleuler used the term to describe the schizophrenics' seeming difficulty in connecting with other people.[15]

However, the classification of autism as a separate disorder or disease did not occur until 1943 when psychiatrist Dr. Leo Kanner of the Johns Hopkins Hospital in Baltimore reported on 11 child patients with striking behavioral similarities and introduced the label "early infantile autism."[16] He suggested the term "autism" to describe the fact that the children seemed to lack interest in other people. Kanner's first paper on the subject was published in a now defunct journal called The Nervous Child,[17] and almost every characteristic he originally described is still regarded as typical of the autistic spectrum of disorders.[18]

At the same time, an Austrian scientist named Dr. Hans Asperger made similar observations, although his name has since become attached to a different higher-functioning form of autism known as Asperger syndrome. Widespread recognition of Asperger's work was delayed by World War II in Germany, and by his seminal paper not being translated into English for almost 50 years. The majority of his work was not widely read until 1997.[19]

Autism and Asperger's Syndrome are today listed in the DSM-IV-TR as two of the five pervasive developmental disorders (PDD), which also include Childhood disintegrative disorder, Rett syndrome and Pervasive Developmental Disorder Not Otherwise Specified (or atypical autism). Health care providers also refer to autism spectrum disorders (ASD) which includes only three of those listed in PDD: Autistic disorder, Asperger syndrome, Pervasive Developmental Disorder Not Otherwise Specified.[20] All of these conditions are characterized by varying degrees of deficiencies in communication skills and social interactions, along with restricted, repetitive, and stereotyped patterns of behavior.

Characteristics

On the surface, individuals who have autism are physically indistinguishable from those without. Sometimes autism co-occurs with other disorders, and in those cases outward differences may be apparent.

Individuals diagnosed with autism can vary greatly in skills and behaviors, and their response to sensory input shows marked differences in a number of ways from that of other people. Certain stimulations, such as sounds, lights, and touch, will often affect someone with autism differently than someone without, and the degree to which the sensory system is affected can vary greatly from one individual to another. [21]

Autistic children may display or fail to display certain behaviors. In assessing developmental delays, different physicians may not always arrive at the same conclusions. Much of this is due to the disputed diagnostic criteria for autism, paired with the difficulty in constructing objective diagnostic tests. Nevertheless, professionals within pediatrics, child psychology, behavior analysis, and child development are always looking for early indicators of autism.

Key Behaviors

Some behaviors cited by the National Institute of Child Health and Human Development and listed below may simply mean a normal delay in one or more areas of development, while others are more typical of ASDs—Autistic Spectrum Disorders.[22]

Noted behaviors

  • does not respond to his/her name.
  • cannot explain what he/she wants.
  • language skills are slow to develop or speech is delayed.
  • doesn't follow directions.
  • at times, the child seems to be deaf.
  • seems to hear sometimes, but not other times.
  • doesn't point or wave "bye-bye."
  • used to say a few words or babble, but now he/she doesn't.
  • throws intense or violent tantrums.
  • has odd movement patterns.
  • is overly active, uncooperative, or resistant.
  • doesn't know how to play with toys.
  • doesn't smile when smiled at.
  • has poor eye contact.
  • gets "stuck" doing the same things over and over and can't move on to other things.
  • seems to prefer to play alone.
  • gets things for him/herself only.
  • is very independent for his/her age.
  • does things "early" compared to other children.
  • seems to be in his/her "own world."
  • seems to tune people out.
  • is not interested in other children.
  • walks on his/her toes.
  • shows unusual attachments to toys, objects, or schedules (i.e., always holding a string or having to put socks on before pants).
  • spends a lot of time lining things up or putting things in a certain order.
  • unconcerned about dangers around him/her (i.e.,standing in the middle of the street without worrying about getting hit by a car).
  • dislikes playing pretend.

Physically people with autism are typical in appearance. Some studies show that autistic children tend to have larger head circumferences[23][24] but the significance in the disorder is unclear.

Social development

Typically, developing infants are social beings -- early in life they gaze at people, turn toward voices, grasp at fingers, and smile. In contrast, most autistic children do not show special interest in faces and seem to have tremendous difficulty learning to engage in everyday human interaction. Even in the first few months of life, many autistic children seem indifferent to other people, lacking the eye contact and interaction with others that non-autistic children exhibit naturally. Some infants with autism may appear very calm; they may cry less often because they do not seek parental attention or ministration. For other children with autism, infantile development progresses normally through language acquisition. Between 18 months and 2 years, however, skills previously mastered disappear, including language and social skills.

Autistic children often seem to prefer being alone and may passively accept such things as hugs and cuddling without reciprocating, or resist attention altogether. Later, they seldom seek comfort from others or respond to parents' displays of anger or affection in a typical way. Research has suggested that, despite popular belief, autistic children are attached to their parents. Although this may be difficult for others to pick up because their particular ways of expressing this attachment may differ from the patterns of expression used by their typical peers.[25] Though social deficits are common, autistic children may vary significantly in their levels of social attachment and interaction.

According to Simon Baron-Cohen et al (1985),[26] many autistic children appear to lack a "theory of mind". Theory of mind refers to representing epistemic mental states such as knowing, believing, deceiving or imagining, and tying them together "into a coherent understanding of how mental states and actions are related."[27] This is a behavior cited as being exclusive to human beings above the age of five and possibly, to a lesser degree, to other higher primates such as adult gorillas, chimpanzees and bonobos.[28] Typical 5-year-olds can usually develop insights into other people's knowledge, feelings, and intentions based on social cues (e.g., gestures, vocal tone and facial expressions). An autistic individual may lack these interpretation skills, leaving them unable to predict or understand other people's actions or intentions.

Many children with autism experience social alienation during their school-age years. As a response to this, or perhaps because their social surroundings simply do not "fit" them, many report inventing imaginary friends, worlds, or scenarios.[29] Making friends in real life and maintaining those friendships often proves to be difficult for those with autism.

Although not universal, behavioral lability may be common, resulting in crying, verbal outbursts, or self-injurious behaviors that seem inappropriate or without cause. Those who have autism may benefit from consistent routines and environments, and they may react negatively to changes in their surroundings. It is not uncommon for these individuals to exhibit poorly modulated behaviors, increased levels of self-stimulatory behavior, self-injury, or extensive withdrawal in overwhelming situations. However, as an affected individual matures and receives specific socialization education and training, skill may be attained in the recognition of behavioral triggers and more appropriate means of coping will be available for difficult social circumstances.

Sensory system

Indicators of autism include oversensitivity or under reactivity to touch, movement, sights, or sounds; physical clumsiness or carelessness; poor body awareness; a tendency to be easily distracted; impulsive physical or verbal behavior; an activity level that is unusually high or low; not unwinding or calming oneself; difficulty learning new movements; difficulty in making transitions from one situation to another; social and/or emotional problems; delays in speech, language or motor skills; specific learning difficulties/delays in academic achievement. However, it is important to remember that while most people with autism have some degree of sensory integration difficulty, not every person who has sensory problems is autistic.

Autistic individuals may sometimes also develop obsessions or routines around foods, restricting what is eaten to certain colors, textures or types of food; alternatively they may obsessively avoid certain foods with similar characteristics.[30]

One common example is autistic hearing. An autistic person may have trouble hearing certain people while other people are perceived as speaking at a higher volume. Or the autistic may be unable to filter out sounds in certain situations, such as in a large crowd of people. However, this is perhaps a part of autism that tends to vary widely from person to person, so these examples may not apply to every autistic person. Note that such auditory difficulties fall under auditory processing disorders, and like sensory integration dysfunction, are not necessarily experienced by all people with autism or indicative of a diagnosis of autism.

Autism and blindness

The characteristics of a person with both an Autism Spectrum Disorder (ASD) and a severe visual impairment (VI) may vary from a person with just ASD or just VI.[31] Historically, many behaviors of blind children were seen as "autistic-like" but were attributed to their blindness rather than pursuing possibilities of autism.[32]

Developmental trajectories of children with ASD-VI are often very similar as those followed by children with typical autism, but the child with ASD-VI will have particularly unusual responses to sensory information. The person may be overly sensitive to touch or sound, or be less responsive to pain. Typically, touch, smell, and sound are affected the most dramatically.[33]

Communication difficulties

Some people with high-functioning autism demonstrate advanced cognitive ability, but lack the skills or are not inclined to interact with others socially. An example of this is the noted autistic Temple Grandin, who holds a PhD and is a successful developer of livestock handling technologies. She describes her inability to understand the social communication of neurotypicals as leaving her feeling "like an anthropologist on Mars." Grandin's case was described by neurologist Oliver Sacks in his 1995 book titled An Anthropologist on Mars: Seven Paradoxical Tales.

Perhaps due to their difficulties communicating with other humans, some autistics have gravitated toward working with animals. Temple Grandin's bestselling book Animals In Translation describes her observations and theories about animals, taken from her work with cattle. Dawn Prince-Hughes, diagnosed with Asperger's, describes her observations of gorillas in Songs of the Gorilla Nation. Another autistic author is Tito Mukhopadhyay, one of whose books is The Mind Tree.

Some infants who later show signs of autism coo and babble during the first few months of life, but stop soon afterwards. Others may be delayed, developing language as late as the teenage years. Still, inability to speak does not mean that people with autism are unintelligent or unaware. Once given appropriate accommodations, some will happily converse for hours, and can often be found in online chat rooms, discussion boards or websites and even using communication devices at autism-community social events such as Autreat.

Sometimes, the body language of people with autism can be difficult for other people to understand. Facial expressions, movements, and gestures may be easily understood by some other people with autism, but do not match those used by other people. Also, their tone of voice has a much more subtle inflection in reflecting their feelings, and the auditory system of a person without autism often cannot sense the fluctuations. What seems to non-autistic people like odd prosody; things like a high-pitched, sing-song, or flat, robot-like voice may be common in autistic children and some will have combinations of these prosody issues. Some autistic children with relatively good language skills speak like little adults, rather than communicating at their current age level, which is one of the things that can lead to problems.

Since non-autistic people are often unfamiliar with the autistic body language, and since autistic natural language may not tend towards speech, autistic people often struggle to let other people know what they need. As anybody might do in such a situation, they may scream in frustration or resort to grabbing what they want. While waiting for non-autistic people to learn to communicate with them, people with autism do whatever they can to get through to them. Communication difficulties may contribute to autistic people becoming socially anxious or depressed or prone to self-injurious behaviors. Recently, with the awareness that those with autism can have more than one condition, a significant percentage of people with autism are being diagnosed with co-morbid mood, anxiety and compulsive disorders which may also contribute to behavioral and functioning challenges.

Repetitive behaviors

Although people with autism usually appear physically normal and have good muscle control, unusual repetitive motions, known as self-stimulation or "stimming," may set them apart. These behaviors might be extreme and highly apparent or more subtle. Some children and older individuals spend a lot of time repeatedly flapping their arms or wiggling their toes, others suddenly freeze in position. Some spend hours arranging objects in a certain way rather than engaging in pretend play as a neurotypical child might, and becoming agitated if they are re-arranged or moved. Autistic children may demand consistency in their environment. A slight change in the timing, format or route of a routine or trip can be extremely disturbing to them. Autistics sometimes have persistent, intense preoccupations. For example, the child might be obsessed with learning all about computers, television programs, lighthouses or virtually any other topic. Some may repeat words from movies and watch certain bits over and over again. Repetitive behaviors can also extend into the spoken word; perseveration of a single word or phrase can also become a part of the child's daily routine.

Effects in education

Children with autism are affected by their symptoms every day, which set them apart from unaffected students. Because of problems with receptive language and theory of mind, they can have difficulty understanding some classroom directions and instruction, along with subtle vocal and facial cues of teachers. This inability to fully decipher the world around them often makes education stressful. Teachers need to be aware of a student's disorder, and ideally should have specific training in autism education, so that they are able to help the student get the best out of his or her classroom experiences.

Some students learn more effectively with visual aids as they are better able to understand material presented visually. Because of this, many teachers create “visual schedules” for their autistic students. This allows students to concretely see what is going on throughout the day, so they know what to prepare for and what activity they will be doing next. Some autistic children have trouble going from one activity to the next, so this visual schedule can help to reduce stress.

Research has shown that working in pairs may be beneficial to autistic children.[34] Autistic students have problems not only with language and communication, but with socialization as well. By facilitating peer interaction, teachers can help their students with autism make friends, which in turn can help them cope with problems or understand the world around them. This can help them to become more integrated into the mainstream environment of the classroom.

A teacher's aide can also be useful to the student. The aide is able to give more elaborate directions that the teacher may not have time to explain to the autistic child and can help the child to stay at an equivalent level to the rest of the class through the special one-on-one instruction. However, some argue that students with one-on-one aides may become overly dependent on the help, thus leading to difficulty with independence later on.

There are many different techniques that teachers can use to assist their students. A teacher needs to become familiar with the child’s disorder to know what will work best with that particular child. Every child is going to be different and teachers have to be able to adjust with every one of them.

Students with autism spectrum disorders sometimes have high levels of anxiety and stress, particularly in social environments like school. If a student exhibits aggressive or explosive behavior, it is important for educational teams to recognize the impact of stress and anxiety. Preparing students for new situations, such as through writing social stories, can lower anxiety. Teaching social and emotional concepts using systematic teaching approaches such as The Incredible 5-Point Scale or other cognitive behavioral strategies can increase a student's ability to control excessive behavioral reactions.

DSM definition

Autism is defined in section 299.00 of the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) as:

  1. A total of six (or more) items from (1), (2) and (3), with at least two from (1), and one each from (2) and (3):
    1. qualitative impairment in social interaction, as manifested by at least two of the following:
      1. marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction
      2. failure to develop peer relationships appropriate to developmental level
      3. a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest)
      4. lack of social or emotional reciprocity
    2. qualitative impairments in communication as manifested by at least one of the following:
      1. delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime)
      2. in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others
      3. stereotyped and repetitive use of language or idiosyncratic language
      4. lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level
    3. restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:
      1. encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
      2. apparently inflexible adherence to specific, nonfunctional routines or rituals
      3. stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)
      4. persistent preoccupation with parts of objects
  2. Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years:
    1. social interaction
    2. language as used in social communication
    3. symbolic or imaginative play.
  3. The disturbance is not better accounted for by Rett's Disorder or Childhood Disintegrative Disorder.

These are rules of thumb and may not necessarily apply to all diagnosed autistics.

Types of autism

Autism presents in a wide degree, from those who are nearly dysfunctional and apparently mentally disabled to those whose symptoms are mild or remedied enough to appear unexceptional ("normal") to others. Although not used or accepted by professionals or within the literature, autistic individuals are often divided into those with an IQ<80 referred to as having "low-functioning autism" (LFA), while those with IQ>80 are referred to as having "high-functioning autism" (HFA).[35] Low and high functioning are more generally applied to how well an individual can accomplish activities of daily living, rather than to IQ. The terms low and high functioning are controversial and not all autistics accept these labels.

This discrepancy can lead to confusion among service providers who equate IQ with functioning and may refuse to serve high-IQ autistic people who are severely compromised in their ability to perform daily living tasks, or may fail to recognize the intellectual potential of many autistic people who are considered LFA. For example, some professionals refuse to recognize autistics who can speak or write as being autistic at all, because they still think of autism as a communication disorder so severe that no speech or writing is possible.

As a consequence, many "high-functioning" autistic persons, and autistic people with a relatively high IQ, are under diagnosed, thus making the claim that "autism implies retardation" self-fulfilling. The number of people diagnosed with LFA is not rising quite as sharply as HFA, indicating that at least part of the explanation for the apparent rise is probably better diagnostics. Many also think that ASD's are being over diagnosed: (1) because the growth in the number and complexity of symptoms associated with autism has increased the chances professionals will erroneously diagnose autism and (2) because the growth in services and therapies for autism has increased the number who falsely qualify for those often free services and therapies.

Asperger's and Kanner's syndrome

Dr. Hans Asperger described a form of autism in the 1940s that later became known as Asperger syndrome.
Dr. Hans Asperger described a form of autism in the 1940s that later became known as Asperger syndrome.
Main article: Asperger syndrome

In the current Diagnostic and Statistical Manual of Mental Disorders (DSM-IV-TR), the most significant difference between Autistic Disorder (also known as Kanner's syndrome) and Asperger's syndrome is that a diagnosis of the former includes the observation of "delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years: (1) social interaction, (2) language as used in social communication, or (3) symbolic or imaginative play",[36] while a diagnosis of Asperger's syndrome observes "no clinically significant delay" in the latter two of these areas.[37]

While the DSM-IV does not include level of intellectual functioning in the diagnosis, the fact that those with Asperger's syndrome tend to perform better than those with Kanner's autism has produced a popular conception that Asperger's syndrome is synonymous with "higher-functioning autism", or that it is a lesser disorder than autism. Similarly, there is a popular conception that autistic individuals with a high level of intellectual functioning in fact have Asperger's syndrome, or that both types are merely 'geeks' with a medical label. The popular depiction of autism in the media has been of relatively severe cases (for example, as seen in the films Rain Man and Mercury Rising), and in turn many close friends and relatives of those who have been diagnosed in the autistic spectrum choose to speak of their loved ones as having Asperger's syndrome rather than autism.

The extent to which someone with higher functioning autism or Asperger's syndrome may excel is theoretically quite high. For example, Henry Cavendish, one of history's foremost scientists, may have been autistic. George Wilson, a notable chemist and physician, wrote a book about Cavendish entitled, "The Life of the Honourable Henry Cavendish", published in 1851. From Wilson's detailed description it seems that while Cavendish may have exhibited many classic signs of autism, he nevertheless had an extraordinary mind.[38]

Autism as a spectrum disorder

For more details on this topic, see Autistic spectrum.

Another view of these disorders is that they are on a continuum known as autistic spectrum disorders. Autism spectrum disorder is an increasingly popular term that refers to a broad definition of autism including the classic form of the disorder as well as closely related conditions such as PDD-NOS and Asperger's syndrome. Although the classic form of autism can be easily distinguished from other forms of autism spectrum disorder, the terms are often used interchangeably.

A related continuum, Sensory Integration Dysfunction, involves how well humans integrate the information they receive from their senses. Autism, Asperger's syndrome, and Sensory Integration Dysfunction are all closely related and overlap.

Some people believe that there might be two manifestations of classical autism, regressive autism and early infantile autism. Early infantile autism is present at birth while regressive autism begins before the age of 3 and often around 18 months. Although this causes some controversy over when the neurological differences involved in autism truly begin, some speculate that an environmental influence or toxin triggers the disorder. This triggering could occur during gestation due to a toxin that enters the mother's body and is transferred to the fetus. The triggering could also occur after birth during the crucial early nervous system development of the child.

A paper published in 2006 concerning the behavioral, cognitive, and genetic bases of autism argues that autism should perhaps not be seen as a single disorder, but rather as a set of distinct symptoms (social difficulties, communicative difficulties and repetitive behaviors) that have their own distinct causes.[39] An implication of this would be that a search for a "cure" for autism is unlikely to succeed if it is not examined as separate, albeit overlapping and commonly co-occurring, disorders.

Epidemiology

Further information: Frequency of autism and Autism (incidence).
Gender differences

There is not a clear-cut ratio of incidence between males and females. Studies have found much higher prevalence in males at the high-functioning end of the spectrum, while the ratios appear to be closer to 1:1 at the low-functioning end.[40] In addition, a study published in 2006 suggested that males over 40 are more likely than younger males to parent a child with autism, and that the ratio of autism incidence in males and females is closer to 1:1 with older fathers.[41]

Reported increase with time
The number of reported cases of autism increased dramatically over a decade. Statistics in graph from the National Center for Health Statistics.

The number of reported cases of autism increased dramatically over a decade. Statistics in graph from the National Center for Health Statistics.

There was a worldwide increase in reported cases of autism over the decade to 2006. There are several theories about the apparent sudden increase.

Many epidemiologists argue that the rise in the incidence of autism in the United States is largely attributable to a broadening of the diagnostic concept, reclassifications, public awareness, and the incentive to receive federally mandated services.[42] However, some authors indicate that the existence of an as yet unidentified contributing environmental risk factor cannot be ruled out.[43] On the other hand, a widely-cited pilot study conducted in California by the UC Davis M.I.N.D. Institute (17 October 2002), reported that the increase in autism is real, even after accounting for changes to diagnostic criteria.[44]

The question of whether the rise in incidence is real or an artifact of improved diagnosis and a broader concept of autism remains controversial. Dr. Chris Johnson, a professor of pediatrics at the University of Texas Health Sciences Center at San Antonio and co-chair of the American Academy of Pediatrics Autism Expert Panel, sums up the state of the issue by saying, "There is a chance we're seeing a true rise, but right now I do not think anybody can answer that question for sure." (Newsweek reference below).[45]

The answer to this question has significant ramifications on the direction of research, since a real increase would focus more attention (and research funding) on the search for environmental factors, while the alternative would focus more attention to genetics. On the other hand, it is conceivable that certain environmental factors (such as chemicals, infections, medicines, vaccines, diet and societal changes) may have a particular impact on people with a specific genetic constitution.

One of the more popular theories is that there is a connection between "geekdom" and autism. This is hinted, for instance, by a Wired Magazine article in 2001 entitled "The Geek Syndrome", which is a point argued by many in the autism rights movement.[46] This article, many professionals assert, is just one example of the media's application of mental disease labels to what is actually variant normal behavior—they argue that shyness, lack of athletic ability or social skills, and intellectual interests, even when they seem unusual to others, are not in themselves signs of autism or Asperger's syndrome. Others assert that children who in the past would have simply been accepted as a little different or even labeled 'gifted' are now being labeled with mental disease diagnoses. See clinomorphism for further discussion of this issue.

Due to the recent publicity surrounding autism and autistic spectrum disorders, an increasing number of adults are choosing to seek diagnoses of high-functioning autism or Asperger's syndrome in light of symptoms they currently experience or experienced during childhood. Since the cause of autism is thought to be at least partly genetic, a proportion of these adults seek their own diagnosis specifically as follow-up to their children's diagnoses. Because autism falls into the pervasive developmental disorder category, an individual's symptoms must have been present before age seven in order to make a strict differential diagnosis.

Treatment

Main article: Autism therapies

Autism is sometimes considered to be untreatable, although this point has been disputed.[47][48] There is a broad array of autism therapies with various goals, e.g. improving health and well-being, emotional problems, difficulties with communication and learning, and sensory problems for people with autism. The efficacy of each approach varies greatly from person to person.

Applied Behavior Analysis (ABA)[49] is an approach in which tasks are systematically reduced to component parts and then reconstructed through repetition and positive reinforcement. The approach also attempts to identify and analyze behaviors that are harmful or that interfere with learning to ensure they are not reinforced. Ultimately the goal is to help children to succeed and become independent socially and academically.

Causes

Main article: Causes of autism

The causes and etiology of autism are areas of debate and controversy; there is currently no consensus, and researchers are studying a wide range of possible genetic and environmental causes. Since autistic individuals are all somewhat different from one another, there are likely multiple "causes" that interact with each other in subtle and complex ways, and thus give slightly differing outcomes in each individual. Two environmental theories include the impact of vaccines on the immune system (of which a statistically significant link has never been found despite many attempts; see the vaccine theory sub-heading in the Causes of autism page for a more extensive treatment) and a more recent theory relating autism to high levels of television viewing while young.[50]

Research claims also link autism with abnormal blood vessel function, and oxidative stress. This line of research may lead to new medical therapies.[51]

Physiology and Neurology

A possible explanation for the characteristics of the syndrome is a variation in the way the brain itself reacts to sensory input and how parts of the brain then handle the information. An electroencephalographic (EEG) study of 36 adults (half of whom had autism) at Washington University in St. Louis found that adults with autism show differences in the manner in which neural activity is coordinated. The implication seems to be that there is poor internal communication between different areas of the brain. (Electroencephalographs, or EEGs, measure the activity of brain cells.)

The study indicated that there were abnormal patterns in the way the brain cells were connected in the temporal lobe of the brain. (The temporal lobe deals with language.) These abnormal patterns would seem to indicate inefficient and inconsistent communication inside the brain of autistic people.[52]

Autism appears to involve a greater amount of the brain than previously thought.[53] A study of 112 children (56 with autism and 56 without), published in the Journal of Child Neuropsychology, found those with autism to have more problems with complex tasks, such as tying their shoelaces or writing, which suggests that many areas of the brain are involved.[54] Children with autism performed simple tasks as well as or better than those without. In tests of visual and spatial skills, autistic children did well at finding small objects in complex pictures (e.g., finding the character Waldo in "Where's Waldo" pictures). However, they found it difficult to tell the difference between similar-looking people. Children with autism tended to do well in spelling and grammar, but found it much more difficult to understand complex speech, such as idioms or similes when the meaning of the phrase is figurative. They would, for example, not understand that "He kicked the bucket" meant someone had died, or were likely to actually hop if told to "hop it".

The inference from this research, according to researchers at the Pittsburgh School of Medicine, is that "These findings show that you cannot compartmentalize autism. It's much more complex.”[54]

The research from this perspective has a number of implications:

  • Autism is more than likely a global disorder which affects how the brain processes the information it receives, while complex information tends to make this more readily apparent.
  • Neurological ‘wiring’ in people with autism manifest abnormalities in the areas of the brain that communicate with each other.
  • Observed abnormalities provide a reasonable explanation for why children with autism have problems with complex tasks which require multiple areas of the brain to work together; autistic people tend to do better in tasks that only require one region of the brain.
  • The causes of autism are possibly more pervasive than previously believed; for example, more areas of the brain are affected than just those involving social interaction, communication, interests, and imagination.
  • Autism may not be primarily a disorder of social interaction; research must now take into account non-social aspects.

An enlarged third ventricle of the brain appears to accompany autism in those who are non-mentally retarded, but the reasons for this and its effects are still unknown.[55]

Genetic Component

Genetic influence comprises a significant aspect of research in the causes of autism.[56] Originally hinting toward this was the observation that there is about a 60% concordance rate for autism in monozygotic (identical) twins,[57] while dizygotic (non-identical) twins and other siblings only exhibit about 4% concordance rates.[58] A theory featuring mirror neurons[59][60] states that autism may involve a dysfunction of specialized neurons in the brain that should activate when observing other people. In typically-developing people, these mirror neurons are thought to perhaps play a major part in social learning and general comprehension of the actions of others.

Researchers from France showed that the gene called SHANK3, also known as ProSAP2, regulates the structural organization of dendritic spines and is a binding partner of neuroligins; genes encoding neuroligins are mutated in autism and Asperger syndrome. A mutation of a single copy of the gene on chromosome 22q13 can result in language or social communication disorders (see also 22q13 deletion syndrome). Though not present in all individuals with autism, the mutations hold potential to illustrate some of the genetic components of spectrum disorders.[61]

The MET gene, linked to brain development, regulation of the immune system, and repair of the gastrointestinal system, has been linked through research to autism. A mutation of the gene, rendering it less active, has been found to be common amongst children with autism. Researchers, from the Vanderbilt Kennedy Center for Research on Human Development, reported in the Proceedings of the National Academy of Sciences that the mutation in the MET gene raises risk of autism by 2.27 times.[62]

Most recently, the Autism Genome Project, an international research team composed of 137 scientists in 50 institutions, has implicated the neurexin 1 gene, located on chromosome 11, as a cause of some cases of autism.[63] DNA from over 1,600 families was analyzed in what was the largest-scale genome scan conducted in autism research at the time.

A large database showing theoretical links between autism and genetic loci indicates that the genetic influence may extend to every human chromosome.[64]

Sociology

Due to the complexity of autism, there are many facets of sociology that need to be considered when discussing it, such as the culture which has evolved from autistic persons connecting and communicating with one another. In addition, there are several subgroups forming within the autistic community, sometimes in strong opposition to one another.

Community and politics

Further information: Autistic community and Autism rights movement.

Curing autism is a very highly controversial and politicized issue. What some call the "autistic community" has splintered into several strands. Some seek a cure for autism - sometimes dubbed by pro-cure. Others do not desire a "cure", because they point out that autism is a way of life rather than a "disease", and as such resist it. They are sometimes dubbed anti-cure. Many more may have views between these two. Recently, with scientists learning more about autism and possibly coming closer to effective remedies, some members of the "anti-cure" movement sent a letter to the United Nations demanding to be treated as a minority group rather than a group with a mental disability or disease.[65]

There are many resources available for autistic people. Because many autistics find it easier to communicate online than in person, a large number of these resources are online. In addition, successful autistic adults in a local community will sometimes help children with autism, using their own experience in developing coping strategies and/or interacting with society.

The year 2002 was declared Autism Awareness Year in the United Kingdom—this idea was initiated by Ivan and Charika Corea, parents of an autistic child, Charin. Autism Awareness Year was led by the British Institute of Brain Injured Children, Disabilities Trust, National Autistic Society, Autism London and 800 organizations in the United Kingdom. It had the personal backing of British Prime Minister Tony Blair and parliamentarians of all parties in the Palace of Westminster.[66][67][68]

Culture

For more details on this topic, see Autistic culture.

With the recent increases in autism recognition and new approaches to educating and socializing autistics, an autistic culture has begun to develop. Similar to deaf culture, autistic culture is based on a more accepting belief that autism is a unique way of being and not a disorder to be cured. There are some commonalities which are specific to autism in general as a culture, not just "autistic culture".

It is a common misperception that autistic people do not marry; many do seek out close relationships and marry. Often, they marry another autistic, although this is not always the case. Autistic people are often attracted to other autistic people due to shared interests or obsessions, but more often than not the attraction is due to simple compatibility with personality types, the same as for non-autistics. Autistics who communicate have explained that companionship is as important to autistics as it is to anyone else.

It is also a common misperception that autistic people live away from other people, such as in a rural area rather than an urban area; many autistics do happily live in a suburb or large city. However, a metropolitan area can provide more opportunities for cultural and personal conflicts, requiring greater needs for adjustment.

In schools it is commonplace for autistics to be singled out by teachers and students as "unruly," though an autistic student may not understand why his or her actions are considered inappropriate, especially when the student has a logical explanation for his or her behavior.

The interests of autistic people and so-called "geeks" or "nerds" can often overlap as autistic people can sometimes become preoccupied with certain subjects, much like anyone else. However, in practice many autistic people have difficulty with working in groups, which impairs them even in the most 'geeky' of situations. The connection of autism with so-called geek or nerd behavior has received attention in the popular press, but is still controversial within these groups.[69]

Speculation arises over famous people and celebrities who are now suspected, but unconfirmed, of having autism and Asperger's syndrome. They are rumored to have most symptoms of autism or autistic-spectrum disorder. Biographers, personal physicians and media journalists continually investigate these rumors, but some say that the claims are actually libellous of their character as public figures, being singled out as "odd" or "nerdy" people.[70]

Autistic adults

Communication and social problems often cause difficulties in many areas of the autistic's life. A much smaller proportion of adult autistics marry or have children than the general population. Even when they do marry, some argue, it is more likely to end in divorce than the norm,[71] although further research should perhaps be made. Nevertheless, as more social groups form, progressively more diagnosed adults are forming relationships with others on the spectrum.

A small proportion of autistic adults, usually those with high-functioning autism or Asperger's syndrome, are able to work successfully in mainstream jobs, although frequently far below their actual level of skills and qualification. Some have managed to gain self-employment.[72]

Others are employed in sheltered workshops under the supervision of managers trained in working with persons with disabilities. A nurturing environment at home, at school, and later in job training and at work, helps autistic people continue to learn and to develop throughout their lives.

It is often said that the Internet, since it is almost devoid of the non-verbal cues that autistics find so hard to interact with, has given some autistic individuals an environment in which they can, and do, communicate and form online communities. The internet has also provided the option of occupations such as, teleworking and independent consulting, which, in general, do not require much human interaction offline.

Under the public law, in the United States, the public schools' responsibility for providing services ends when the autistic person is 21 years of age. The autistic person and their family are then faced with the challenge of finding living arrangements and employment to match their particular needs, as well as the programs and facilities that can provide support services to achieve these goals.

Many parents of autistic children also face financial difficulties as they must often pay for essential support and therapeutic services. Furthermore, autism is often linked to poverty because autistics who might qualify for financial assistance in one country are not eligible in another, because some nations do not recognize autism as a disability.[73][74][75][76]

Terminology

When referring to someone who is diagnosed with autism, the term "autistic" is often used. Alternatively, many prefer to use the person-first terminology "person with autism" or "person who experiences autism." However, it has been noted that members of the autistic community generally prefer 'autistic person' for reasons that are fairly controversial.[77] This article uses both terminologies.

Autistic savants

Main article: Autistic savant

The autistic savant phenomenon is sometimes seen in autistic people. Estimates of the prevalence of this phenomenon range between 1% and 10%.[78] The term is used to describe a person who is autistic and has extreme talent in a certain area of study. Although there is a common association between savants and autism (an association made especially popular by the 1988 film Rain Man), most autistic people are not savants and savantism is not unique to autistic people, though there does seem to be some relation.[79] Mental calculators and fast computer programming skills are the most common form. A well known example is Daniel Tammet, the subject of the documentary film The Brain Man[80] (Kim Peek, one of the inspirations for Dustin Hoffman's character in the film Rain Man, is not autistic). Bright Splinters of the Mind by Beate Hermelin is a book that explores this issue further.

Other pervasive developmental disorders

Autism and Asperger's syndrome are just two of the five pervasive developmental disorders (PDDs). The three other pervasive developmental disorders are Rett syndrome, Childhood disintegrative disorder, and Pervasive developmental disorder not otherwise specified. Some of these are related to autism, while some of them are entirely separate conditions.

See also

Look up autism, autistic in Wiktionary, the free dictionary.
  • General
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story.amanda.jpg

Amanda Baggs, who has autism, says thinking in words takes a great deal of energy.

 

Living with autism in a world made for others

POSTED: 7:28 a.m. EST, February 22, 2007

Story Highlights

Amanda Baggs, 26, is part of new generation of adults with autism
• Baggs communicates using a computer or a voice synthesizer
• 600,000 adults have autism in the U.S., according to the Autism Society of America
• No cure for autism; precise causes unknown
 

 

(CNN) -- When I walk into her apartment, Amanda Baggs makes no eye contact. She doesn't come to the door or raise her hand to greet visitors. In fact, I'm having a hard time discerning whether she even knows I'm there. I say hello and introduce myself, but she remains silent, sitting at her desk, staring out the window, rocking slightly back and forth.

Amanda Baggs is a 26-year-old woman with autism. I've been corresponding with her for weeks via e-mail. I've read her Web site, and from her I've learned a great deal about living with autism.

A video she posted recently Video on the Internet describes how she experiences the world. "My language is not about designing words or even visual symbols for people to interpret," she says in the video. "It is about being in a constant conversation with every aspect of my environment."

Admittedly, it's hard to recognize her in real life, after meeting her online persona first. (Read Dr. Sanjay Gupta's thoughts after meeting Amanda Baggs. )

I awkwardly carry on a one-sided conversation, until she grunts. My attention shifts to her computer slowly booting up. She clicks on a program. A keyboard diagram fills the screen. She begins to type at a staccato pace. We begin a conversation. I talk. She types. (Watch Amanda communicate in her own way Video)

This is the Amanda I've come to know over the past few weeks. She's highly intelligent, well read and has a great sense of humor. She never makes eye contact, but there is no doubt she is interacting with me.

Amanda is part of a new generation of adults with autism. The Autism Society of America estimates that 600,000 adults are living with autism in the United States. That number will most likely skyrocket, given the CDC's recognition of an increase in the numbers of children with autism. The newest numbers suggest that one in every 150 children has autism.

"The field as a whole has really neglected adults with autism," says Dr. Eric Hollander, psychiatrist and head of the Seaver and New York Autism Center of Excellence.

Adults with autism live normal life spans and may require long-term medication, therapy and residential placement. Hollander says the average cost of caring for an individual with autism over a lifetime can be several million dollars.

Autism treatment and research are undeniably centered on children. The goals are early diagnosis and intervention. They're aimed at reducing disruptive behaviors and eventually mainstreaming children with autism into school and society.

At its core, autism is a developmental disorder of communication. There is no cure. No one knows the precise causes, but recent science points towards a genetic component with a possible environmental trigger.

Amanda Baggs has severe autism. She didn't cry when she was born. She had to be taught how to nurse. As a little girl, she rocked her head back and forth but could speak. As she grew, she would go longer and longer without speaking, until her spoken language disappeared altogether. (Read Amanda's post to the AC 360 blog on CNN.com.)

She slowly learned how to type. Now, she relies on her computer or a voice synthesizer linked to a keyboard to interact with people. According to Hollander, "You might think that these individuals are mentally retarded or have no verbal skills, but in fact, they're not mentally retarded. They really understand what is going on and if they utilize a communication device, they can really communicate what they are thinking and feeling."

For Amanda, it takes a great deal of energy to think in words. It is not her natural state of mind. "It's like being bilingual," she types. "A lot of the way I naturally communicate is just through direct response to what is around me in a very physical sort of way. It's dealing with patterns and colors rather than with symbolic words." (Watch why "normal" communication isn't for Amanda Video)

The Internet has allowed Amanda to communicate to the whole world. While standard body language and facial expressions are lost on many with autism, she says many non-verbal people with autism have the ability to communicate with one another through autistic body cues.

Thirty or 40 years ago, life would have been different and much harder for Amanda, says Morton Ann Gernsbacher, a cognitive psychologist who specializes in autism at the University of Wisconsin-Madison. "The Internet is providing for individuals with autism, what sign language did for the deaf," she says. "It allows them to interact with the world and other like-minded individuals on their own terms." (Ask Amanda your questions about autism. )

These days, Amanda Baggs lives on her own terms. With the help of an agency, she moved from California to Vermont about a year and a half ago to be closer to a friend.

And what does Amanda think is the hardest thing about living with autism? "Having to navigate a world that is, on all levels, is built for the abilities and deficits of people who are not built remotely like me."

 
 
 
 
 

 

 

Defining Autism

 

Autism is a complex developmental disability that typically appears during the first three years of life and is the result of a neurological disorder that affects the normal functioning of the brain, impacting development in the areas of social interaction and communication skills. Both children and adults with autism typically show difficulties in verbal and non-verbal communication, social interactions, and leisure or play activities. One should keep in mind however, that autism is a spectrum disorder and it affects each individual differently and at varying degrees - this is why early diagnosis is so crucial. By learning the signs, a child can begin benefiting from one of the many specialized intervention programs.

Autism is one of five disorders that falls under the umbrella of Pervasive Developmental Disorders (PDD), a category of neurological disorders characterized by “severe and pervasive impairment in several areas of development.”

The five disorders under PDD are:

  • Autistic Disorder
  • Asperger's Disorder
  • Childhood Disintegrative Disorder (CDD)
  • Rett's Disorder
  • PDD-Not Otherwise Specified (PDD-NOS)

Each of these disorders has specific diagnostic criteria which been outlined in the American Psychiatric Association's Diagnostic & Statistical Manual of Mental Disorders (DSM-IV-TR).

Prevalence of Autism

Autism is the most common of the Pervasive Developmental Disorders, affecting an estimated 1 in 150 births (Centers for Disease Control Prevention, 2007). Roughly translated, this means as many as 1.5 million Americans today are believed to have some form of autism. And this number is on the rise.

Based on statistics from the U.S. Department of Education and other governmental agencies, autism is growing at a startling rate of 10-17 percent per year. At this rate, the ASA estimates that the prevalence of autism could reach 4 million Americans in the next decade.

Autism knows no racial, ethnic, social boundaries, family income, lifestyle, or educational levels and can affect any family, and any child.

And although the overall incidence of autism is consistent around the globe, it is four times more prevalent in boys than in girls.

Defining Autism

 

Autism is a spectrum disorder, and although it is defined by a certain set of behaviors, children and adults with autism can exhibit any combination of these behaviors in any degree of severity. Two children, both with the same diagnosis, can act completely different from one another and have varying capabilities.

You may hear different terms used to describe children within this spectrum, such as autistic-like, autistic tendencies, autism spectrum, high-functioning or low-functioning autism, more-abled or less-abled; but more important than the term used to describe autism is understanding that whatever the diagnosis, children with autism can learn and function normally and show improvement with appropriate treatment and education.

Every person with autism is an individual, and like all individuals, has a unique personality and combination of characteristics. Some individuals mildly affected may exhibit only slight delays in language and greater challenges with social interactions. They may have difficulty initiating and/or maintaining a conversation. Their communication is often described as talking at others instead of to them. (For example, monologue on a favorite subject that continues despite attempts by others to interject comments).

People with autism also process and respond
to information in unique ways.
In some cases, aggressive and/or self-injurious behavior may be present. Persons with autism may also exhibit some of the following traits:

  • Insistence on sameness; resistance to change
  • Difficulty in expressing needs, using gestures or pointing instead of words
  • Repeating words or phrases in place of normal, responsive language
  • Laughing (and/or crying) for no apparent reason showing distress for reasons not apparent to others
  • Preference to being alone; aloof manner
  • Tantrums
  • Difficulty in mixing with others
  • Not wanting to cuddle or be cuddled
  • Little or no eye contact
  • Unresponsive to normal teaching methods
  • Sustained odd play
  • Spinning objects
  • Obsessive attachment to objects
  • Apparent over-sensitivity or under-sensitivity to pain
  • No real fears of danger
  • Noticeable physical over-activity or extreme under-activity
  • Uneven gross/fine motor skills
  • Non responsive to verbal cues; acts as if deaf, although hearing tests in normal range.

For most of us, the integration of our senses helps us to understand what we are experiencing. For example, our sense of touch, smell and taste work together in the experience of eating a ripe peach: the feel of the peach's skin, its sweet smell, and the juices running down your face. For children with autism, sensory integration problems are common, which may throw their senses off they may be over or under active. The fuzz on the peach may actually be experienced as painful and the smell may make the child gag. Some children with autism are particularly sensitive to sound, finding even the most ordinary daily noises painful. Many professionals feel that some of the typical autism behaviors, like the ones listed above, are actually a result of sensory integration difficulties.

There are also many myths and misconceptions about autism. Contrary to popular belief, many autistic children do make eye contact; it just may be less often or different from a non-autistic child. Many children with autism can develop good functional language and others can develop some type of communication skills, such as sign language or use of pictures. Children do not "outgrow" autism but symptoms may lessen as the child develops and receives treatment.

One of the most devastating myths about autistic children is that they cannot show affection. While sensory stimulation is processed differently in some children, they can and do give affection. However, it may require patience on the parents' part to accept and give love in the child's terms.

What Causes Autism?

There is no known single cause for autism, but it is generally accepted that it is caused by abnormalities in brain structure or function. Brain scans show differences in the shape and structure of the brain in autistic versus non-autistic children. Researchers are investigating a number of theories, including the link between heredity, genetics and medical problems. In many families, there appears to be a pattern of autism or related disabilities, further supporting a genetic basis to the disorder. While no one gene has been identified as causing autism, researchers are searching for irregular segments of genetic code that autistic children may have inherited. It also appears that some children are born with a susceptibility to autism, but researchers have not yet identified a single "trigger" that causes autism to develop.

Other researchers are investigating the possibility that under certain conditions, a cluster of unstable genes may interfere with brain development resulting in autism. Still other researchers are investigating problems during pregnancy or delivery as well as environmental factors such as viral infections, metabolic imbalances, and exposure to environmental chemicals.

Autism tends to occur more frequently than expected among individuals who have certain medical conditions, including Fragile X syndrome, tuberous sclerosis, congenital rubella syndrome, and untreated phenylketonuria (PKU). Some harmful substances ingested during pregnancy also have been associated with an increased risk of autism. Early in 2002, The Agency for Toxic Substances and Disease Registry (ATSDR) prepared a literature review of hazardous chemical exposures and autism and found no compelling evidence for an association; however, there was very limited research and more needs to be done.

The question of a relationship between vaccines and autism continues to be debated. In a 2001 investigation by the Institute of Medicine, a committee concluded that the "evidence favors rejection of a causal relationship.... between MMR vaccines and autistic spectrum disorders (ASD)." The committee acknowledged, however, that "they could not rule out" the possibility that the MMR vaccine could contribute to ASD in a small number of children. While other researchers agree the data does not support a link between the MMR and autism, more research is clearly needed.

Whatever the cause, it is clear that children with autism and PDD are born with the disorder or born with the potential to develop it. It is not caused by bad parenting. Autism is not a mental illness. Children with autism are not unruly kids who choose not to behave. Furthermore, no known psychological factors in the development of the child have been shown to cause autism.
 

Pervasive Development Disorder
 

Asperger's Disorder was first described in the 1940s by Viennese pediatrician Hans Asperger

who observed autistic-like behaviors and difficulties with social and communication skills in boys who had normal intelligence and language development. Many professionals felt Asperger's Disorder was simply a milder form of autism and used the term "high-functioning autism" to describe these individuals. Professor Uta Frith, with the Institute of Cognitive Neuroscience of University College London and author of Autism and Asperger Syndrome, describes individuals with Asperger's Disorder as "having a dash of Autism." Asperger's Disorder was added to the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) in 1994 as a separate disorder from autism. However, there are still many professionals who consider Asperger's Disorder a less severe form of autism.

What distinguishes Asperger's Disorder from autism is the severity of the symptoms and the absence of language delays. Children with Asperger's Disorder may be only mildly affected and frequently have good language and cognitive skills. To the untrained observer, a child with Asperger's Disorder may just seem like a normal child behaving differently.

Children with autism are frequently seen as
 aloof and uninterested in others.
 This is not the case with Asperger's Disorder. Individuals with Asperger's Disorder usually want to fit in and have interaction with others; they simply don't know how to do it. They may be socially awkward, not understanding of conventional social rules, or may show a lack of empathy. They may have limited eye contact, seem to be unengaged in a conversation, and not understand the use of gestures.

Interests in a particular subject may border on the obsessive. Children with Asperger's Disorder frequently like to collect categories of things, such as rocks or bottle caps. They may be proficient in knowing categories of information, such as baseball statistics or Latin names of flowers. While they may have good rote memory skills, they have difficulty with abstract concepts.

One of the major differences between Asperger's Disorder and autism is that, by definition, there is no speech delay in Asperger's. In fact, children with Asperger's Disorder frequently have good language skills; they simply use language in different ways. Speech patterns may be unusual, lack inflection or have a rhythmic nature or it may be formal, but too loud or high pitched. Children with Asperger's Disorder may not understand the subtleties of language, such as irony and humor, or they may not understand the give and take nature of a conversation.

Another distinction between Asperger's Disorder and autism concerns cognitive ability. While some individuals with Autism experience mental retardation, by definition a person with Asperger's Disorder cannot possess a "clinically significant" cognitive delay and most possess an average to above average intelligence.

While motor difficulties are not a specific criteria for Asperger's, children with Asperger's Disorder frequently have motor skill delays and may appear clumsy or awkward.

  Characteristics

The essential features of Asperger's Disorder are severe and sustained impairment in social interaction and the development of restricted, repetitive patterns of behavior, interest, and activity. The disturbance must clinically significant impairment in social, occupational, and other important areas of functioning. In contrast to Autistic Disorder, there are no clinically significant delays in language. In addition there are no clinically significant delays in cognitive development or in the development of age-appropriate self-help skills, adaptive behavior, and curiosity about the environment in childhood.

A. Qualitative impairment in social interaction,
as manifested by at least two of the following:

  • Marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction
  • Failure to develop peer relationships appropriate to developmental level
  • A lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest to other people)
  • Lack of social or emotional reciprocity

B. Restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:

  • Encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
  • Apparently inflexible adherence to specific, non-functional routines or rituals
  • Stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)
  • Persistent preoccupation with parts of objects

C. The disturbance causes clinically significant impairment in social, occupational, or other important areas of functioning.

D. There is no clinically significant general delay in language (e.g., single words used by age 2 years, communicative phrases used by age 3 years)

E. There is no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills, adaptive behavior (other than in social interaction), and curiosity about the environment in childhood.

F. Criteria are not met for another specific Pervasive Developmental Disorder or Schizophrenia.

Diagnosis

Diagnosis of Asperger's Disorder is on the increase although it is unclear whether it is more prevalent or whether more professionals are detecting it. The symptoms for Asperger's Disorder are the same as those listed for autism in the DSM-IV. However, children with AS do not have delays in the area of communication and language. In fact, to be diagnosed with Asperger, a child must have had normal language development as well as normal intelligence. The DSM-IV criteria for AS specifies that the individual must have "severe and sustained impairment in social interaction, and the development of restricted, repetitive patterns of behavior, interests and activities," that must "cause clinically significant impairment in social occupational or other important areas of functioning."

The first step to diagnosis is an assessment, including a developmental history and observation. This should be done by medical professionals experienced with Autism and other PDDs. If Asperger's Disorder or high functioning autism is suspected, the diagnosis of autism will generally be ruled out first. Early diagnosis is also important; children with Asperger's Disorder who are diagnosed and treated early in life have an increased chance of being successful in school and eventually living independently.

Working with an Individual with Asperger Syndrome

Children with Asperger's Disorder may present a challenge for educators. While they appear capable and are good with memorization and factual information, they may be weak in comprehension and cognitively inflexible. Educators need to capitalize on their abilities, discovering their strengths and interests in order to develop their talents.

People with Asperger's Disorder particularly need assistance in developing their social and communication skills. Children and young adults who received social and communications skills training are better able to express themselves, understand language and become more skillful at communicating with others, increasing their likelihood of successful social interactions. Early intervention means a better chance for independent living and further education.

While few programs are designed specifically to address Asperger's Disorder, some of the treatment approaches used for people with "high functioning" Autism, such as Applied Behavioral Analysis (ABA) and Treatment & Education of Autistic and Related Communication of Handicapped Children (TEACCH), may be appropriate for a person with Asperger Syndrome. ABA is based on the idea that behavior rewarded will more likely be repeated. ABA is typically done on a one-to-one basis and may focus on specific behaviors and communication skills. TEACCH was developed at the School of Medicine at the University of North Carolina as a structured teaching approach that used the child's visual and rote memory strengths to improve communication, social and coping skills. Pictures and charts that show a daily schedule help the child with Asperger's Disorder to anticipate what will happen during the day. This is particularly important for children with Asperger's Disorder since they usually have difficulties with changes in routine.

Educational Issues

Because children with Asperger's Disorder may be only mildly affected, they may begin school prior to being diagnosed. During the elementary years, behavioral issues and immaturity may be a problem but academically, these children frequently do quite well. The ability to memorize information, do calculations and focus intensively serves them well. But as they move through the school system, difficulties with social skills, language and obsessive behaviors become more problematic and may leave them vulnerable to teasing from classmates.

Getting special education services may be difficult because children with AS have normal or above normal intelligence and appear capable. However, every child with disabilities is guaranteed a free, appropriate public education through the Individuals with Disabilities Education Act (IDEA). Keep in mind that IDEA establishes that an appropriate educational program must be provided, not necessarily an "ideal" program or the one you feel is best for your child. The law specifies that educational placement should be determined individually for each child, based on that child's specific needs, not solely on the diagnosis or category. No one program or amount of services is appropriate for all children with disabilities. It is important that you work with the school to obtain the educational support and services that your child needs. The first step should be a comprehensive needs assessment that will become the blueprint for your child's educational plan. Then, in collaboration with your child's school and teachers, develop a well-defined and thorough Individualized Education Plan (IEP). The IEP is a written document that outlines the child's individual educational program, tailored to his or her needs. A program appropriate for one child with Asperger's Disorder may not be appropriate for another.

While many children with Asperger's Disorder may participate in mainstream society, they still need support services. Teachers need to be informed that these children are not simply acting up or being difficult.

Counselors can provide emotional support and assist with social skills, helping children with AS to learn how to react to social cues and situations. Children with Asperger's Disorder may use a "buddy" who serves as a role model for social situations and may facilitate interactions with others by explaining appropriate behavior.

Speech and language therapists may help in the use of appropriate language and occupational therapists can deal with delays in motor development.

Dr. Stephen Bauer, a developmental pediatrician at the Pediatric Development Center of Unity Health in Rochester, New York, suggests that the most important step in helping children with Asperger's Disorder is for schools to recognize that the child has "an inherent developmental disorder which causes him/her to behave and respond in a different way from other students." Because children with Asperger's Disorder respond best to a regular, organized routine, Bauer recommends the use of charts and pictures to help the child visualize the day and to prepare him or her for any changes in advance. Bauer also emphasizes the need to avoid power struggles since children with Asperger's Disorder will become more rigid and stubborn if confronted or forced.

Adults with Asperger Disorder

The transition for individuals with Asperger's Disorder from federally-mandated services through the school system to adult services can be a challenge. While entitlement to public education ends at age 18, the IDEA requires that transition planning begins at age 14 and becomes a formal part of the student's Individualized Education Plan (IEP). This transition planning should include the student with AS, parents and members of the IEP team who work together to help the individual make decisions about his/her next steps. An Individualized Transition Plan (ITP) is developed that outlines transition services that may include education or vocational training, employment, living arrangements and community participation, to name a few.

The first step in transition planning should be to take a look at the individual's interests, abilities, and needs. For example, what type of educational needs must be met? College, vocational training, adult education? Where can the young adult find employment and training services? What types of living arrangements are best?

Post-secondary Education

Many individuals with Asperger's Disorder are able to continue their education by attending college or trade schools. This also provides an opportunity to further social interaction, particularly in areas where the individual has key interests. Be sure that the institution offers training or classes of interest to the individual. Find out what accommodations are available to address his or her special needs. Work with your young adult in selecting classes that take advantage of his or her strengths.

Employment

Employment should take advantage of the individual's strengths and abilities. Temple Grandin, Ph.D. suggests, "jobs should have a well-defined goal or endpoint, " and that your "boss must recognize your social limitations." In A Parent's Guide to Asperger Syndrome and High-Functioning Autism the authors describe three employment possibilities: competitive, supported and secure or sheltered.

Competitive employment is the most independent with no support offered in the work environment. Individuals with AS may be successful in careers that require focus on details but have limited social interaction with colleagues such as computer sciences, research or library sciences. In supported employment, a system of supports allow individuals to have paid employment in the community, sometimes as part of a mobile crew, other times individually in a job developed for the person. In secure or sheltered employment, an individual is guaranteed a job in a facility-based setting. Individuals in secure settings generally also receive work skills and behavior training while sheltered employment may not provide training that would allow for more independence.

To look for employment, begin by contacting agencies that may be of help such as state employment offices, social services offices, mental health departments, and disability-specific organizations. Find out about special projects in your area and determine the eligibility to participate in these programs. It is important to find employers who are willing to work with people with Asperger's Disorder.

Living Arrangements

Whether an adult with Asperger's Disorder continues to live at home or moves out into the community, will be determined in large part by his/her ability to manage every day tasks with little or no supervision. For example, can he handle housework, cooking, shopping, and bill paying? Is she able to use public transportation? Many families prefer to start with some supportive living arrangement and move towards increased independence.

Supervised group homes usually serve several individuals with disabilities. They are typically located in residential neighborhoods in an average family home. The homes are staffed by trained professionals who assist residents based on the person's level of need. Usually the residents have a job, which takes them away from home during the day.

A supervised apartment may be suitable for individuals who prefer to live with fewer people, but still require some supervision and assistance. There is usually no daily supervision, but someone comes by several times a week. The residents are responsible for going to work, preparing meals, personal care and housekeeping needs. A supervised apartment setting is a good transition to independent living.

Independent living means just that individuals live in their own apartments or houses and require little, if any, support services from outside agencies. Services may be limited to helping with complex problem-solving issues rather than day-to-day living skills. For instance, some individuals may need assistance with managing money or handling government bureaucracies. It is also important for those living independently to have a "buddy" who lives nearby that can be contacted for support. Support systems within the community might include bus drivers, waitresses, or coworkers.

Many people think of adulthood in terms of getting a job and living in a particular area, but having friends and a sense of belonging in a community are also important. Individuals with Asperger's Disorder may need assistance in encouraging friendships and structuring time for special interests. Many of the support systems developed in the early years may continue to be useful.

Other Resources About Asperger Syndrome

Many local chapters of the Autism Society of America have members who have Asperger Syndrome or parents of children with Asperger Syndrome. Some chapters even have special Asperger sub-groups.

 
Pervasive Development Disorder
 

The term "PDD" is widely used by professionals to refer to children with autism and related disorders; however, there is a great deal of disagreement and confusion among professionals concerning the PDD label. Diagnosis of PDD, including autism, or any other developmental disability, is based upon the Diagnostic and Statistical Manual of Mental Disorders - Fourth Edition (DSM-IV), published by the American Psychiatric Association, Washington D.C., 1994, and is the main diagnostic reference of Mental Health professionals in the United States of America.

According to the DSM-IV, the term "PDD" is not a specific diagnosis, but an umbrella term under which the specific diagnoses are defined.


Diagnostic labels are used to indicate commonalities among individuals. The key defining symptom of autism that differentiates it from other syndromes and/or conditions is substantial impairment in social interaction (Frith, 1989). The diagnosis of autism indicates that qualitative impairments in communication, social skills, and range of interests and activities exist. As no medical tests can be performed to indicate the presence of autism or any other PDD, the diagnosis is based upon the presence or absence of specific behaviors. For example, a child may be diagnosed as having PDD-NOS if he or she has some behaviors that are seen in autism, but does not meet the full criteria for having autism.
Most importantly, whether a child is diagnosed with PDD (like autism) or PDD-NOS, his/her treatment will be similar.

Autism is a spectrum disorder, with symptoms ranging from mild to severe. As a spectrum disorder, the level of developmental delay is unique to each individual. If a diagnosis of PDD-NOS is made, rather than autism, the diagnosticians should clearly specify the behaviors present. Evaluation reports are more useful if they are specific and become more helpful for parents and professionals in later years when reevaluations are conducted.

Ideally, a multidisciplinary team of professionals should evaluate a child suspected of having autism. The team may include, but may not be limited to: a psychologist or psychiatrist, speech pathologist, and other medical professionals, including a developmental pediatrician and/or neurologist. Parents and teachers should also be included, as they have important information to share when determining a child's diagnosis.

In the end, parents should be more concerned that their child find the appropriate educational treatment based on their needs, rather than spending too much effort to find the perfect diagnostic label. Most often, programs designed specifically for children with autism will produce greater benefits, while the use of the general PDD label can prevent a child from obtaining services relative to their needs.

Also within each diagnosis is the Panel of Professional Advisors' recommended definition of the Autism Spectrum and related syndromes and conditions, which are not to be used for research purposes, but rather for defining the demographics of the membership of the Autism Society of America. The Autism Society of America is not attempting to represent individuals with related syndromes or conditions who do not also have autism, but rather those where autism is present in related syndromes and conditions, and where autism is the defining syndrome, e.g., autism-aspergers. The rationale for this position is due to the unique service needs that are imperative for individuals with autism that may not be required of the cohort disability.

 

Autistic DisorderTop    
  The central features of Autistic Disorder are the presence of markedly abnormal or impaired development in social interaction and communication and a markedly restricted repertoire of activity and interest. The manifestations of this disorder vary greatly depending on the developmental level and chronological age of the individual. Autistic Disorder is sometimes referred to as Early Infantile Autism, Childhood Autism, or Kanner's Autism (page 66).

A. A total of six (or more) items from (1), (2), and (3), with at least two from (1), and one each from (2) and (3):

  1. Qualitative impairment in social interaction, as manifested by at least two of the following:
    • Marked impairment in the use of multiple nonverbal behaviors such as eye to-eye gaze, facial expression, body postures, and gestures to regulate social interaction
    • Failure to develop peer relationships appropriate to developmental level
    • A lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest)
    • Lack of social or emotional reciprocity
  2. Qualitative impairments in communication as manifested by at least one of the following:
    • Delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gestures or mime)
    • In individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others
    • Stereotyped and repetitive use of language or idiosyncratic language
    • Lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level
  3. Restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:
    • Encompassing preoccupation with one or more stereotyped patterns of interest that is abnormal either in intensity or focus
    • Apparently inflexible adherence to specific, nonfunctional routines or rituals
    • Stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)
    • Persistent preoccupation with parts of object

B. Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years:

  • Social interaction
  • Language as used in social communication
  • Symbolic or imaginative play

C. The disturbance is not better accounted for by Rett's Disorder or Childhood Disintegrative Disorder.
 

   
Rett's DisorderTop
  The essential feature of Rett's Disorder is the development of multiple specific deficits following a period of normal functioning after birth. There is a loss of previously acquired purposeful hand skills before subsequent development of characteristic hand movement resembling hand wringing or hand washing. Interest in the social environment diminishes in the first few years after the onset of the disorder. There is also significant impairment in expressive and receptive language development with severe psychomotor retardation. (Page 71)

A. All of the following:

  • Apparently normal prenatal and prenatal development
  • Apparently normal psychomotor development through the first 5 months after birth
  • Normal head circumference at birth

B. Onset of all of the following after the period of normal development:

  • Deceleration of head growth between ages 5 and 48 months
  • Loss of previously acquired purposeful hand skills between ages 5 and 30 months with the subsequent development of stereotyped hand movements (e.g., hand-wringing or hand washing)
  • Loss of social engagement early in the course (although often social interaction develops later)
  • Appearance of poorly coordinated gait or trunk movements
  • Severely impaired expressive and receptive language development with severe psychomotor retardation
Childhood Disintegrative DisorderTop
  The central feature of Childhood Disintegrative Disorder is a marked regression in multiple areas of functioning following a period of at least two years of apparently normal development. After the first two years of life, the child has a clinically significant loss of previously acquired skills in at least two of the following areas: expressive or receptive language; social skills or adaptive behavior; bowel or bladder control; or play or motor skills. Individuals with this disorder exhibit the social and communicative deficits and behavioral features generally observed in Autistic Disorder, as there is qualitative impairment in social interaction, communication, and restrictive, repetitive and stereotyped patterns of behavior, interests, and activities. (Page 73)

A. Apparently normal development for at least the first 2 years after birth as manifested by the presence of age-appropriate verbal and nonverbal communication, social relationships, play, and adaptive behavior.

B. Clinically significant loss of previously acquired skills (before age 10 years) in at least two of the following areas:

  • Expressive or receptive language
  • Social skills or adaptive behavior
  • Bowel or bladder control
  • Play
  • Motor skills

C. Abnormalities of functioning in at least two of the following areas:

  • Qualitative impairment in social interaction (e.g., impairment in nonverbal behaviors, failure to develop peer relationships, lack of social or emotional reciprocity)
  • Qualitative impairments in communication (e.g., delay or lack of spoken language, inability to initiate or sustain a conversation, stereotyped and repetitive use of language, lack of varied make-believe play)
  • Restricted, repetitive, and stereotyped patterns of behavior, interests, and activities, including motor stereotypes and mannerisms

D. The disturbance is not better accounted for by another specific Pervasive Developmental Disorder or by Schizophrenia.

 

Pervasive Developmental Disorder Not Otherwise Specified - Including Atypical AutismTop
  The essential features of PDD-NOS are: severe and pervasive impairment in the development of reciprocal social interaction or verbal and nonverbal communication skills; stereotyped behaviors, interests, and activities; and the criteria for Autistic Disorder are not met because of late age onset, atypical and/or sub threshold symptomotology are present. (Page 77-78)

This category should be used when there is a severe and pervasive impairment in the development of reciprocal social interaction or verbal and nonverbal communication skills, or when stereotyped behavior, interests, and activities are present, but the criteria are not met for a specific Pervasive Developmental Disorder, Schizophrenia, Schizotypical Personality Disorder, or Avoidant Personality Disorder. For example, this category includes "atypical autism"-- presentations that do not meet the criteria for Autistic Disorder because of late age of onset, atypical symptomatology, or sub threshold symptomatology, or all of these.

 

Other Related Syndromes/DisordersTop
  Cornelia DeLange Syndrome
Cornelia DeLange Syndrome is a relatively rare syndrome associated with autism. Individuals with this syndrome have low birth weight, delayed growth, small stature, small head size, and distinctive facial features including the eyebrows (which usually meet at the midline), long eyelashes, short up-turned nose, and thin down-turned lips. Individuals with Cornelia DeLange Syndrome have developmental delays with the greatest area being in receptive and expressive language. Additionally, they have heightened sensitivity to touch, present behavioral difficulties including hyperactivity, short attention span, oppositional and repetitive behavior, and self-injurious behavior. Because these behavioral characteristics are similar in many ways to those present in individuals with autism, "autistic-like behaviors" are listed as an associated complication for individuals with Cornelia DeLange Syndrome. (Cornelia DeLange Syndrome Foundation, 1998)

Tourette's Syndrome
Tourette's Syndrome is an inherited neurological disorder characterized by repeated and involuntary body movements (tics) and uncontrollable vocal sounds. In a minority of cases, the vocalizations can include socially inappropriate words and phrases (coprolalia). Involuntary symptoms can include eye blinking, repeated throat clearing or sniffing, arm thrusting, kicking movements, shoulder shrugging, or jumping. Stereotyped motor movements, verbal stereotypes, such as, the repetition of words and phrases, and other mannerisms have suggested a potentially more interesting association between autism and Tourette's Syndrome. (Tourette's Syndrome Association, 1998)

Fragile X Syndrome
Early descriptions of Fragile X Syndrome focused on fully affected males and their many autistic-like features. These included: poor eye contact; language delay; perseveration and echolalia; self-abuse; behavioral stereotypes (hand flapping, body rocking); sensitivity to auditory stimuli or environmental change; tactile defensiveness; preoccupation with narrow range of stimuli; and poor social relating. Prevalence rates for Fragile X Syndrome amongst individuals with autism is approximately 10 percent. (Dykens & Volkmar, 1997, pp 390+)

William's Syndrome
William's Syndrome affects about 1 in 20,000 people and is caused, in most cases, by a deletion in one of the chromosomes 7s that contain the gene for elastin. People with autism with William Syndrome often show a distinctive cognitive profile. Relations between William Syndrome and autism have not yet been widely studied; however, some of the maladaptive behaviors of William Syndrome may be described as "autistic-like." These include obsessive worrying, perseveration, difficulties relating to peers, and body rocking and other repetitive behaviors. (Dykens & Volkmar, 1997, pp393+)

Down Syndrome
Down Syndrome occurs in approximately 1 in 800 births and is considered the most common chromosomal cause of retardation. Although rare, some epidemiological studies have found subjects with Down Syndrome and autism. Although autism is rare in persons with Down Syndrome, it should be considered in the range of diagnostic possibilities for persons with this syndrome. (Dykens & Volkmar, 1997, pp 394+) When autism affects a child with Down Syndrome the effects are quite severe, and, therefore, the autism condition must be the priority condition.

Tuberous Sclerosis
Tuberous Sclerosis affects as many as 1 in 10,000 people and is characterized by abnormal tissue growth or benign tumors in the brain and other organs such as the skin, kidneys, eyes, heart, and lungs. Autistic-like symptoms were first described in patients with Tuberous Sclerosis a decade before Kanner's classic delineation of Infantile Autism. These early noted symptoms include stereotypes, absents or abnormal speech, withdrawal, and impaired interactions. Today the Tuberous Sclerosis society suggests that approximately 60 percent of its membership have autism or autistic-like behavior or symptoms. (Bassiri, 1998, Personal Correspondence) (Dykens & Volkmar, 1997, pp 395+)

Landau-Kleffner Syndrome
This syndrome has its onset in childhood and is characterized by acquired aphasia and seizures in association with abnormal EEG's. Landau-Kleffner Syndrome, often referred to as "acquired epileptic aphasia," may present autistic symptomatology. However, the primary symptom is represented by language regression. (Minshew Sweeney, & Bauman, 1997, pp 361+)

Sensory Impairments
Visually and auditory impaired individuals may also have autism. Additionally, Kluver- Bucy Syndrome (Ivey M. et. al, 1989) has symptoms similar to autism such as difficulty in receiving and processing sensory information.

Defining Symptomatology
Occasionally with autism there are certain symptoms that become defining of the individual as he/she ages. It is critical not to confuse the evolving, defining symptom as primary in nature, but rather secondary to the syndrome of autism itself. Those symptomatologies are obsessive /compulsive disorder; bipolar disorder, depressions; anxiety disorder; epilepsy; and attention-deficit/hyperactivity disorder.

Disorders of Metabolism/Infections
Other forms of metabolic disorders may have autistic-like symptomatology. These include Prader-Willi Syndrome, PKU (phenylketonuria), and Lesch-Nyhan Syndrome to name a few. Additionally, there is a theory that identifies Candida yeast infection as a culpable agent in autism. (Rimland, 1988) The majority of cases of autism however, are of unknown origin. DLH: 1999

Facts and Statistics
 
 
U

  • 1 in 150 births(1)
  • 1 to 1.5 million Americans(2)
  • Fastest-growing developmental disability
  • 10 - 17 % annual growth
  • Growth comparison during the 1990s(3):
    • U.S. population increase: 13%
    • Disabilities increase: 16%
    • Autism increase: 172%
  • $90 billion annual cost(4)
  • 90% of costs are in adult services(4)
  • Cost of lifelong care can be reduced by 2/3 with early diagnosis and intervention(4)
  • In 10 years, the annual cost will be $200-400 billion(5)
Diagnosis and Consultation

There are no medical tests for diagnosing autism. An accurate diagnosis must be based on observation of the individual's communication, behavior, and developmental levels. However, because many of the behaviors associated with autism are shared by other disorders, various medical tests may be ordered to rule out or identify other possible causes of the symptoms being exhibited. At first glance, some persons with autism may appear to have mental retardation, a behavior disorder, problems with hearing, or even odd and eccentric behavior. To complicate matters further, these conditions can co-occur with autism. However, it is important to distinguish autism from other conditions, since an accurate diagnosis and early identification can provide the basis for building an appropriate and effective educational and treatment program.

A brief observation in a single setting cannot present a true picture of an individual's abilities and behaviors. Parental (and other caregivers' and/or teachers) input and developmental history are very important components of making an accurate diagnosis.

Early Diagnosis

Research indicates that early diagnosis is associated with dramatically better outcomes for individuals with autism. The earlier a child is diagnosed, the earlier the child can begin benefiting from one of the many specialized intervention approaches treatment and education

Diagnostic ToolsTop  
  The characteristic behaviors of autism spectrum disorders may or may not be apparent in infancy (18 to 24 months), but usually become obvious during early childhood (24 months to 6 years).

As part of a well-baby/well-child visit, your child's doctor should do a "developmental screening" asking specific questions about your baby's progress. The National Institute of Child Health and Human Development (NICHD) lists five behaviors that signal further evaluation is warranted:

  • Does not babble or coo by 12 months
  • Does not gesture (point, wave, grasp) by 12 months
  • Does not say single words by 16 months
  • Does not say two-word phrases on his or her own by 24 months
  • Has any loss of any language or social skill at any age.

Having any of these five "red flags" does not mean your child has autism. But because the characteristics of the disorder vary so much, a child showing these behaviors should have further evaluations by a multidisciplinary team. This team may include a neurologist, psychologist, developmental pediatrician, speech/language therapist, learning consultant, or other professionals knowledgeable about autism.

Screening InstrumentsTop
  While there is no one behavioral or communications test that can detect autism, several screening instruments have been developed that are now being used in diagnosing autism:
  1. CARS rating system (Childhood Autism Rating Scale), developed by Eric Schopler in the early 1970s, is based on observed behavior. Using a 15-point scale, professionals evaluate a child's relationship to people, body use, adaptation to change, listening response, and verbal communication.
  2. The Checklist for Autism in Toddlers (CHAT) is used to screen for autism at 18 months of age. It was developed by Simon Baron-Cohen in the early 1990s to see if autism could be detected in children as young as 18 months. The screening tool uses a short questionnaire with two sections, one prepared by the parents, the other by the child's family doctor or pediatrician.
  3. The Autism Screening Questionnaire is a 40 item screening scale that has been used with children four and older to help evaluate communication skills and social functioning.
  4. The Screening Test for Autism in Two-Year Olds is being developed by Wendy Stone at Vanderbilt and uses direct observations to study behavioral features in children under two. She has identified three skills areas that seem to indicate autism - play, motor imitation, and joint attention.
Consulting with ProfessionalsTop
  Whether you or your child's pediatrician is the first to suspect autism, your child will need to be referred to someone who specializes in diagnosing autism spectrum disorders. This may be a developmental pediatrician, a psychiatrist or psychologist, and other professionals that are better able to observe and test your child in specific areas.

This multidisciplinary assessment team may include some or all of the following professionals (they may also be involved in treatment programs):

  • Developmental pediatrician - Treats health problems of children with developmental delays or handicaps.
  • Child psychiatrist - A medical doctor who may be involved in the initial diagnosis. He/she can also prescribe medication and provide help in behavior, emotional adjustment and social relationships).
  • Clinical psychologist - Specializes in understanding the nature and impact of developmental disabilities, including autism spectrum disorders. May perform psychological and assessment test, as well as help with behavior modification and social skills training.
  • Occupational therapist - Focuses on practical, self-help skills that will aid in daily living such as dressing and eating. May also work on sensory integration, coordination of movement, and fine motor skills.
  • Physical therapist - Helps to improve the use of bones, muscles, joints, and nerves to develop muscle strength, coordination and motor skills.
  • Speech/language therapist - Involved in the improvement of communication skills, including speech and language.
  • Social Worker - May provide counseling services or act as case manager helping to arrange services and treatments.

It is important that parents and professionals work together for the child's benefit. While professionals will use their experience and training to make recommendations about your child's treatment options, you have unique knowledge about his/her needs and abilities that should be taken into account for a more individualized course of action.

Once a treatment program is in place, communication between parents and professionals is essential in monitoring the child's progress. Here are some guidelines for working with professionals:

  • Be informed. Learn as much as you can about your child's disability so you can be an active participant in determining care. If you don't understand terms used by professionals, ask for clarification.
  • Be prepared. Be prepared for meetings with doctors, therapists, and school personnel. Write down your questions and concerns, and then note the answers.
  • Be organized. Many parents find it useful to keep a notebook detailing their child's diagnosis and treatment, as well as meetings with professionals.
  • Communicate. It's important to ensure open communication - both good and bad. If you don't agree with a professional's recommendation, speak up and say specifically why you don't.

Getting Past the Diagnosis

Often, the time immediately after the diagnosis is a difficult one for families, filled with confusion, anger and despair. These are normal feelings. But there is life after a diagnosis of autism. Life can be rewarding for a child with autism and all the people who have the privilege of knowing the child. While it isn't always easy, you can learn to help your child find the world an interesting and loving place.

Treatment

Discovering that your child has autism
can be an overwhelming experience.
For some, the diagnosis may come as a complete surprise; others may have suspected autism and tried for months or years to get an accurate diagnosis. In either case, you probably have many questions about how to proceed. A generation ago, many people with autism were placed in institutions. Professionals were less educated about autism than they are today and specific services and supports were largely non-existent. Today the picture is much more clear. With appropriate services, training, and information, children with autism will grow and can learn, even if at a different developmental rate than others.

While there is no cure for autism, there are treatment and education approaches that may reduce some of the challenges associated with the disability. Intervention may help to lessen disruptive behaviors, and education can teach self-help skills that allow for greater independence. But just as there is no one symptom or behavior that identifies autistic children, there is no single treatment. Children can learn to function within the confines of their disability, but treatment must be tailored to the child's individual behaviors and needs.

Remember, the purpose of this section is to provide a general overview of available approaches, not specific treatment recommendations. Keep in mind that the word "treatment" is used in a very limited sense. While typically used for children under 3, the approaches described herein may be included in an educational program for older children as well.

It is important to match your child's needs and potential with treatments or strategies that are likely to be effective in moving him/her closer to normal functioning. We do not want to give the impression that you will select one item from a list of available treatments. You should move forward in your search for appropriate treatment knowing that you do not have to exclude other options, and that all treatment approaches are not equal. The basis for choosing any treatment plan should come from a thorough evaluation of the strengths and weaknesses observed in the child.

Understanding Your OptionsTop
  Treatment approaches are evolving as more is learned about autism. There are many therapeutic programs, both conventional and complementary, that focus on replacing dysfunctional behaviors and developing specific skills.

As a parent, it's natural to want to
 do something immediately.

However, it is important not to rush in with changes. Your child may have already learned to cope with his or her current environment and changes could be stressful. You should investigate various treatment approaches and gather information concerning various options before proceeding with your child's treatment.

You will encounter numerous accounts from parents about successes and failures with many of the treatment approaches mentioned. You will also discover that professionals differ in their theories of what they feel is the most successful treatment for autism. It can be frustrating! But you will learn to sift through them and make rational, educated decisions on what is appropriate for your child. You live with your child every day and you know his/her needs. And in time, you will come to know his/her autism. Trust your instincts as you explore various options.

Again, please keep in mind that the descriptions of treatment approaches provided here are for informational purposes only. They are meant to give you an overview of an approach. The Autism Society of America does not endorse any specific treatment or therapy.

During your research, you will hear about many different treatments approaches, such as auditory training, discrete trial training, vitamin therapy, anti-yeast therapy, facilitated communication, music therapy, occupational therapy, physical therapy, and sensory integration. These approaches can generally be broken down into three categories:

Some of these treatment approaches have research studies that support their efficacy; others may not. Some parents will only want to try treatment methods that have undergone research and testing and are generally accepted by the professional community. But keep in mind that scientific studies are often difficult to do since each individual with autism is different.

For others, formal testing might not be a pre-requisite for them to try a treatment with their child. Even for those with "scientific" proof, we recommend that the family or caregiver investigate all options available to determine the appropriateness to their child.

Experts agree though, that early intervention is important in addressing the symptoms associated with autism. The earlier treatment is started, the better the chance the child will reach normal functioning levels. Many of the approaches described can be used on children as young as age 2 or 3. They may also continue to be used in conjunction with special education programs or traditional elementary school for children who are mainstreamed.

Programs for Children Under 3Top
  If your child is younger than 3 years old, he or
 she is eligible for "early intervention" assistance.
This federally-funded program is available in every state, but may be provided by different agencies. Contact one of the ASA chapters in your area for more specific information or obtain a state resource sheet from the National Information Center for Children and Youth with Disabilities from your state referral.

This early education assistance may be available to you in two forms: home-based or school-based. Home-based programs generally assign members of an early intervention team to come to your home to train you and educate your child. School-based programs may be in a public school or a private organization. Both of these programs should be staffed by teachers and other professionals who have experience working with children with disabilities specifically autism. Related services should also be offered, such as speech, physical or occupational therapy, depending on the needs of each child. The program may be only for children with disabilities or it may also include non-challenged peers.

Programs for School-Aged ChildrenTop
  From the age of 3 through the age of 21, your child is guaranteed a free appropriate public education supplied by your local education agency. The Individuals with Disabilities Education Act (IDEA) is a federal mandate that guarantees this education. Whatever the level of impairment, the educational program for an individual with autism should be based on the unique needs of the student, and thoroughly documented in the IEP (Individualized Education Program). If this is the first attempt by the parents and the school system to develop the appropriate curriculum, conducting a comprehensive needs assessment is a good place to start. Consult with professionals well versed in autism disorders about the best possible educational methods that will be effective in assisting the student to learn and benefit from his/her school program. Educational programming for students with autism often addresses a wide range of skill development, including: academics, language, social skills, self-help skills, behavioral issues, and leisure skills.

As a parent, you can and should be an active and equal participant in deciding on an appropriate educational plan for your child. You know your child best and can provide valuable information to teachers and other professionals who will be educating your child. Collaboration between parents and professionals is essential open communication can lead to better evaluation of a student's progress.

To learn about other services specific to your area, you may wish to contact resources in your community, such as your local ASA chapter, a local university affiliated program for developmental disabilities, the local chapter of the Association for Retarded Citizens, Easter Seals, or the local developmental disabilities council. If you decide to contact any of these agencies, please keep in mind that it may take days or weeks to find the information you need.

Evaluating ApproachesTop
  Because no two children with autism have the exact same symptoms and behavioral patterns, a treatment approach that works for one child may not be successful with another. This makes evaluating different approaches difficult. There is little comparative research between treatment approaches. Primarily this is because there are too many variables that have to be controlled. So, it's no wonder that as a parent you might be confused about what to do.

In her article "Behavioral and Educational Treatment for Autistic Spectrum Disorders" (Advocate, Volume 33, No. 6), Bryna Siegel, Ph.D., suggests thinking about "each symptom as an autism specific learning disability…" that tells "something about a barrier to understanding." Using this model, you can then evaluate what your child can and cannot do well. "…take stock of which autistic learning disabilities are present," and "then select treatments that address that particular child's unique autism learning disability profile."

Understanding these learning differences is the first step in assessing whether a specific treatment approach may be helpful to your child. Understanding a child's strengths is equally important. For example, some children are good visual learners, while another more advanced child may need written, rather than oral, cues.

Finding Treatment Programs in Your Area

Once you become familiar with the treatments that are available and appropriate for individuals with autism, you may be concerned about where they can receive these services. Treatments may be obtained through either the medical or educational community, depending on the nature of the treatment. There are also a variety of resources you can use to find qualified professionals or service providers in your area. There are several state agencies established to provide this type of information and support, including Protection and Advocacy; Developmental Disabilities Planning Councils; Vocational Rehabilitation Centers; Parent Training Centers; and Educational Resources. You should also try your local ASA chapter for tips on programs and professionals in your area.

ASA Guidelines  

The Autism Society of America's Panel of Professional Advisors has developed Guidelines to evaluate theories and practices related to autism.
Listed here are a few of the things to consider as you evaluate treatment options:

  • Will the treatment result in harm to the child?
  • How will failure of the treatment affect my child and family?
  • Has the treatment been validated scientifically?
  • Are there assessment procedures specified?
  • How will the treatment be integrated into the child's current program? Do not become so infatuated with a given treatment that functional curriculum, vocational life and social skills are ignored.

In addition, consider the following questions when asking about specific treatments (compiled by the National Institute of Mental Health):

  • How successful has the program been for other children?
  • How many children have gone on to placement in a regular school and how have they performed?
  • Do staff members have training and experience in working with children and adolescents with autism?
  • How are activities planned and organized?
  • Are there predictable daily schedules and routines?
  • How much individual attention will my child receive?
  • How is progress measured?
  • Will my child's behavior be closely observed and recorded?
  • Will my child be given tasks and rewards that are personally motivating?
  • Is the environment designed to minimize distractions?
  • Will the program prepare me to continue the therapy at home?
  • What is the cost, time commitment, and location of the program?
General Standards of CareTop  
  Treatment approaches are evolving as more is learned about autism. There are many therapeutic programs, both conventional and complementary, that focus on replacing dysfunctional behaviors and developing specific skills.

As a parent, it's natural to want
to do something immediately.

However, it is important not to rush in with changes. Your child may have already learned to cope with his or her current environment and changes could be stressful. You should investigate various treatment approaches and gather information concerning various options before proceeding with your child's treatment.

You will encounter numerous accounts from parents about successes and failures with many of the treatment approaches mentioned. You will also discover that professionals differ in their theories of what they feel is the most successful treatment for autism. It can be frustrating! But you will learn to sift through them and make rational, educated decisions on what is appropriate for your child. You live with your child every day and you know his/her needs. And in time, you will come to know his/her autism. Trust your instincts as you explore various options.

Again, please keep in mind that the descriptions of treatment approaches provided here are for informational purposes only. They are meant to give you an overview of an approach. The Autism Society of America does not endorse any specific treatment or therapy. For more information about the ASA's policy on options, click here.

During your research, you will hear about many different treatments approaches, such as auditory training, discrete trial training, vitamin therapy, anti-yeast therapy, facilitated communication, music therapy, occupational therapy, physical therapy, and sensory integration. These approaches can generally be broken down into three categories:

  • Behavioral & Communication Approaches
  • Biomedical & Dietary Approaches
  • Complimentary Approaches

Some of these treatment approaches have
research studies that support their efficacy;
others may not. Some parents will only want to try treatment methods that have undergone research and testing and are generally accepted by the professional community. But keep in mind that scientific studies are often difficult to do since each individual with autism is different.

For others, formal testing might not be a pre-requisite for them to try a treatment with their child. Even for those with "scientific" proof, we recommend that the family or caregiver investigate all options available to determine the appropriateness to their child.

Experts agree though, that early intervention is important in addressing the symptoms associated with autism. The earlier treatment is started, the better the chance the child will reach normal functioning levels. Many of the approaches described can be used on children as young as age 2 or 3. They may also continue to be used in conjunction with special education programs or traditional elementary school for children who are mainstreamed.

Early InterventionTop
  The Autism Society of America recognizes the importance of intensive early intervention for young children across the autism spectrum, including those labeled with autism, Asperger's syndrome, and other pervasive developmental disorders. While these children share a common diagnostic label, each has individual needs. Because of the individual differences among these children, the Autism Society of America supports an individualized approach that addresses the core deficits of autism spectrum disorders (e.g., communication, social, sensory, academic difficulties) and that matches each family's preferences and needs. In designing effective programs, the Autism Society of America encourages professionals and family members to consider the following components:
  • A curriculum which addresses deficit areas, which focuses on long-term outcomes, and which considers the developmental level of each child. Deficit areas include:
  • Inability to attend to relevant aspects of the environment, to shift attention, and to imitate language and the actions of others;
  • Difficulty in social interactions including appropriate play with toys and others, and symbolic and imaginative play; and
  • Difficulty with language comprehension and use, and functional communication.
  • Programs which capitalize on children's natural tendency to respond to visual structure, routines, schedules, and predictability.
  • Focus on generalization and maintenance of skills, using technology such as incidental teaching approaches.
  • Effective and systematic instructional approaches which utilize technology associated with applied behavior analysis, including chaining, shaping, discrete trial format, and others.
  • Coordinated transitions between service delivery agencies, including 0-2 programs, early intervention/preschool programs, and kindergarten environments.
  • Use of the technology associated with functional behavioral assessment and positive behavioral supports when involved with a child who presents behavioral challenges.
  • Family involvement, including coordination between home and involved professionals, an in-home training component, and family training and support.

The Autism Society of America encourages applied research to determine those interventions and approaches that are most effective for all children with autism spectrum disorders, and to encourage common usage of these practices for each child with an autism spectrum disorder, regardless of geographical location.

- Prepared by the Autism Society of America Panel of Professional Advisors. Approved: Autism Society of America Board of Directors, April 2000

Parent's Choice/Options PolicyTop
  The Autism Society of America promotes the active and informed involvement of family members and the individual with autism in the planning of individualized, appropriate services and supports. The Board of the Autism Society of America believes that each person with autism is a unique individual. Each family and individual with autism should have the right to learn about and then select, the options that they feel are most appropriate for the individual with autism. To the maximum extent possible, we believe that the decisions should be made by both the parents and the individual with autism.

Services should enhance and strengthen natural family and community supports for the individual with autism and the family whenever possible. The service option designed for an individual with autism should result in improved quality of life. Abusive treatment of any kind is not an option.

We firmly believe that no single type of program or service will fill the needs of every individual with autism and that each person should have access to support services. Selection of a program, service or method of treatment should be on the basis of a full assessment of each person's abilities, needs and interests. We believe that services should be outcome based to insure that they meet the individualized needs of a person with autism.

With appropriate education, vocational training and community living options and support systems, individuals with autism can lead dignified, productive lives in their communities and strive to reach their fullest potential.

The ASA believes that all individuals with autism have the right to access appropriate services and supports based on their needs and desires. (Adopted by the ASA Board of Directors 4/1/1995)

Learning Approaches

The behaviors exhibited by children with autism are frequently the most troubling to parents and caregivers. These behaviors may be inappropriate, repetitive, aggressive and/or dangerous, and may include:

  • Hand-flapping
  • Finger-snapping
  • Rocking
  • Placing objects in one's mouth
  • Head-banging.

Children with autism may also engage in self-mutilation, such as eye-gouging or biting their arms; they may show little or no sensitivity to burns or bruises; and may physically attack someone without provocation. The reasons for these behaviors are complex, but some professionals think that sensory integration issues contribute to them.

Communication skills, both the spoken and written word, are also an issue for children with autism. They have difficulty understanding how communication works and may have difficulty with reciprocal conversation. Many also have language difficulties, either being nonverbal throughout their lives or having delayed speech. Some children use language in unusual ways, such as repeating the words or sentences said to them (echolalia) or using only single words to communicate. Language difficulties may contribute to behavioral problems a child with autism may resort to screaming (because of an inability to use language to communicate his/her needs).

Many treatment approaches have been developed to address the range of social, language, sensory, and behavioral difficulties.

These include Discrete Trial Training (discrete trials), as part of:

Applied Behavior Analysis (ABA)Top  
  Many of the interventions used to treat children with autism are based on the theory of Applied Behavior Analysis (ABA) - that behavior rewarded is more likely to be repeated than behavior ignored. Although ABA is a theory, many people use the term to describe a specific treatment approach with subsets that include discrete trial training or Lovaas. While the terms discrete trial and Lovaas have been used interchangeably, only practitioners who are affiliated with Lovaas can be said to implement "Lovaas Therapy."

In discrete trial training, every task given to the child consists of a request to perform a specific action, a response from the child, and a reaction from the therapist. It is not just about correcting behaviors but is designed to teach skills from basic ones such as sleeping and dressing, to more involved ones, such as social interaction. Discrete trial training is an intensive approach. Children usually work for 30 to 40 hours a week one-on-one with a trained professional. Tasks are broken down into short simple pieces, or trials. When a task has been successfully completed, a reward is offered, reinforcing the behavior or task. This method is not without controversy. Some practitioners feel it is emotionally too difficult for a child with autism, that the time requirement of 30 to 40 hours a week is too intensive and intrusive on family life; and that while it may change a particular behavior, it does not prepare a child with autism to respond to new situations. However, research has shown that ABA techniques show consistent results in teaching new skills and behaviors to children with autism.

TEACCHTop
  The first statewide program for treatment and services for people with autism, TEACCH (Treatment and Education of Autistic and Related Communication Handicapped Children) was developed at the School of Medicine at the University of North Carolina in the 1970s. TEACCH uses a structured teaching approach based on the idea that the environment should be adapted to the child with autism, not the child to the environment. It uses no one specific technique, but rather a program based around the child's functioning level. The child's learning abilities are assessed through the Psycho Educational Profile (PEP), and teaching strategies are designed to improve communication, social and coping skills. Rather than teach a specific skill or behavior, the TEACCH approach aims to provide the child with the skills to understand his or her world and other people's behaviors. For example, some children with autism scream when they are in pain. The TEACCH approach would search for the cause of the screaming and then teach the child how to signal pain through communication skills.

There have been criticisms that the TEACCH approach is too structured, that children with autism, particularly high-functioning individuals, become too focused on the charts, organizational aids, and schedules, and that it discourages mainstream behavior (meaning that they may only respond to specific stimuli as taught in their curriculum and not everyday situations). Others feel that, in an environment conducive to learning, ultimately the child with autism understands what is expected and how to respond.

Picture Exchange Communication Systems (PECS)Top
  One of the main areas affected by autism is the ability to communicate. Some children with autism will develop verbal language, while others may never talk. An augmented communication program, such as Picture Exchange Communication Systems (PECS), is helpful to get language started as well as to provide a way of communicating for those children that do not talk.

PECS was developed at the Delaware Autistic Program to help children and adults with autism to acquire functional communication skills. It uses ABA-based methods to teach children to exchange a picture for something they want - an item or activity.

The advantage to PECS is that it is clear, intentional, and initiated by the child. The child hands you a picture, and his or her request is immediately understood. It also makes it easy for the child with autism to communicate with anyone - all they have to do is accept the picture.


Pivotal Response Treatment

Regarded as one of the top state-of-the-art treatments for autism in the United States*, Pivotal Response Treatment (PRT) is a naturalistic intervention model producing positive changes in critical behaviors, leading to generalized improvement in communication, social, and behavioral areas. Rather than target individual behaviors one at a time, PRT targets pivotal areas of a child's development, such as motivation, responsivity to multiple cues, self-management, and social initiations. By targeting these critical areas, PRT results in widespread, collateral improvements in other social, communicative, and behavioral areas.

The underlying motivational strategies of PRT are incorporated throughout intervention as often as possible, and they include child choice, task variation, interspersing maintenance tasks, rewarding attempts, and the use of direct and natural reinforcers. The child plays a crucial role in determining the activities and objects that will be used in the PRT exchange. For example, intentful attempts at functional communication are rewarded with a natural reinforcer (e.g., if a child attempts a request for a stuffed animal, the child receives the animal, not a piece of candy or other unrelated reinforcer). Pivotal Response Treatment is used to teach language, decrease disruptive/self-stimulatory behaviors, and increase social, communication, and academic skills.

* National Research Council of the National Academy of Sciences, 2001

Floor TimeTop  
  An educational model developed by child psychiatrist Stanley Greenspan, Floor Time is much like play therapy in that it builds an increasingly larger circle of interaction between a child and an adult in a developmentally-based sequence. Greenspan has described six stages of emotional development that children meet to develop a foundation for more advanced learning - a developmental ladder that must be climbed one rung at a time. Children with autism may have trouble with this developmental ladder for a number of reasons, such as over-and under-reacting to senses, difficulty processing information, or difficulty in getting their body to do what they want.

Through the use of Floor Time, parents and educators can help the child move up the developmental ladder by following the child's lead and building on what the child does to encourage more interactions. Floor Time does not treat the child with autism in separate pieces for speech development or motor development, but rather addresses the emotional development, in contrast to other approaches that tend to focus on cognitive development. It is frequently used for a child's daily playtime in conjunction with other methods such as ABA.

 
Social StoriesTop  
  Social Stories were developed in 1991 by Carol Gray as a tool for teaching social skills to children with autism. They address "Theory of Mind" deficits, that is, the ability to understand or recognize feelings, points of view or plans of others. Through a story developed about a particular situation or event, the child is provided with as much information as possible to help him or her understand the expected or appropriate response. The stories typically have three sentence types: descriptive sentences addressing the where, who, what and why of the situation; perspective sentences that provide some understanding of the thoughts and emotions of others; and directive sentences that suggest a response. The stories, which can be written by anyone, are specific to the child's needs, and are written in the first person, and present tense. They frequently incorporate the use of pictures, photographs or music.

Before developing and using social stories, it is important to identify how the child interacts socially and to determine what situations are difficult and under what circumstances. Situations that are frightening, produce tantrums or crying, or make a child withdraw or want to escape, are all appropriate for social stories. However, it is important to address the child's misunderstanding of the situation. A child who cries when his/her teacher leaves the room may be doing so because he/she is frightened or frustrated. A story about crying won't address the reason for the behavior. Rather a story about what scares the child and how he can deal with those feelings will be more effective.

 
Sensory IntegrationTop  
 
Children with autism frequently have sensory difficulties.
They may be hypo- or hyper-reactive or lack the ability to integrate the senses. Sensory integration therapy, usually done by occupational, physical or speech therapists, focuses on desensitizing the child and helping him or her reorganize sensory information. For example, if a child has difficulties with the sense of touch, therapy might include handling a variety of materials with different textures.

Temple Grandin, Ph.D., who herself has autism, developed a "squeeze machine" to help her learn to tolerate touching through regulated deep pressure stimulation.

Auditory integration therapy reduces over-sensitivity to sound. It may involve having the child listen to a variety of different sound frequencies coordinated to the level of impairment.

Before proceeding with any sensory integration therapy, it is important that the therapist observe the child and have a clear understanding of his/her sensitivities.

 
Facilitate CommunicationTop  
  Facilitated Communication (FC) was developed in the 1970s in Australia by an aide who was trying to help a patient with cerebral palsy to communicate. It is based on the idea that the person is unable to communicate because of a movement disorder, not because of a lack of communication skills. FC involves a facilitator who, by supporting an individual's hand or arm, helps the person communicate through the use of a computer or typewriter. It has not been scientifically validated; critics claim it is actually the ideas or thoughts of the facilitator that are being communicated. FC is very controversial and organizations such as the American Association of Mental Retardation, and the American Academy of Child & Adolescent Psychiatry, have adopted formal positions opposing the acceptance of FC.  
Complementary ApproachesTop  
  While early educational intervention is key to improving the lives of individuals with autism, some parents and professionals believe that other treatment approaches may play an important role in improving communications skills and reducing behavioral symptoms associated with autism. These complementary therapies may include music, art or animal therapy and may be done on an individual basis or integrated into an educational program. All of them can help by increasing communication skills, developing social interaction, and providing a sense of accomplishment. They can provide a non-threatening way for a child with autism to develop a positive relationship with a therapist in a safe environment.

Art and music are particularly useful in sensory integration, providing tactile, visual and auditory stimulation.
Music therapy is good for speech development and language comprehension. Songs can be used to teach language and increase the ability to put words together. Art therapy can provide a nonverbal, symbolic way for the child with autism to express him or herself.

Animal therapy may include horseback riding or swimming with dolphins. Therapeutic riding programs provide both physical and emotional benefits, improving coordination and motor development, while creating a sense of well-being and increasing self-confidence. Dolphin therapy was first used in the 1970s by psychologist David Nathanson. He believed that interactions with dolphins would increase a child's attention, enhancing cognitive processes. In a number of studies, he found that children with disabilities learned faster and retained information longer when they were with dolphins, compared to children who learned in a classroom setting.

As with any therapy or treatment approach, it is important to gather information about the treatment and make an informed decision. Keep in mind however, as with most complementary approaches, there will be little scientific research that has been conducted to support the particular therapy.

 
Biomedical and Dietary Approaches  

Because autism is a spectrum disorder and no one method alone is usually effective in treating autism, professionals and families have found that a combination of treatments may be effective in treating symptoms and behaviors that make it hard for individuals with autism to function. These may include psychosocial and pharmacological interventions.

While there are no drugs, vitamins or special diets that can correct the underlying neurological problems that seem to cause autism, parents and professionals have found that some drugs used for other disorders are sometimes effective in treating some aspects of behaviors associated with autism.

Changes to diet and the addition of certain vitamins or minerals may also help with behavioral issues. Over the past 10 years, there have been claims that adding essential vitamins such as B6 and B12 and removing gluten and casein from a child's diet, may improve digestion, allergies and sociability. Not all researchers and experts agree about whether these therapies are effective or scientifically valid.

MedicationsTop    
  There are a number of medications, developed for other conditions, that have been found effective in treating some of the symptoms and behaviors frequently found in individuals with autism. Some of these include: hyperactivity, impulsivity, attention difficulties, and anxiety. The goal of medications is to reduce these behaviors to allow the individual with autism to take advantage of educational and behavioral treatments.

When medication is being discussed
or prescribed, it's important to:

  • Ask about the safety of its use in children with autism
  • What is the appropriate dosage?
  • How is it administered (pills, liquid)?
  • What are the long-term consequences?
  • Are there possible side effects?
  • How will my child be monitored and by whom?
  • What laboratory tests are required before starting the drug and during treatment?
  • Are there possible interactions with other drugs, vitamins or foods?

Given the complexity of medications, drug interactions, and the unpredictability of how each patient may react to a particular drug, parents should seek out and work with a medical doctor with an expertise in the area of medication management.

What Medications are Available?

There are a number of medications that are frequently used for individuals with autism to address certain behaviors or symptoms. Some have studies to support their use, while others do not.

The Autism Society of America does not endorse any specific medication. The information provided here is meant as an overview of the types of medications sometimes prescribed. Be sure to consult a medical professional for more information.

Serotonin re-uptake inhibitors have been effective in treating depression, obsessive-compulsive behaviors, and anxiety that are sometimes present in autism. Because researchers have consistently found elevated levels of serotonin in the bloodstream of one-third of individuals with autism, these drugs could potentially reverse some of the symptoms of serotonin dysregulation in autism. Three drugs that have been studied are clomipramine (Anafranil), fluvoxamine (Luvox) and fluoxetine (Prozac). Studies have shown that they may reduce the frequency and intensity of repetitive behaviors, and may decrease irritability, tantrums and aggressive behavior. Some children have also shown improvements in eye contact and responsiveness.

Other drugs, such as Elavil, Wellbutrin, Valium, Ativan and Xanax have not been studied as much but may have a role in treating the behavioral symptoms. However, all these drugs have potential side effects, which should be discussed before treatment is started.

Anti-psychotic medications have been the most widely studied of the psychopharmacologic agents in autism over the past 35 years.
Originally developed for treating schizophrenia, these drugs have been found to decrease hyperactivity, stereotypical behaviors, withdrawal, and aggression in individuals with autism. Four that have been approved by the FDA are clozapine (Clozaril), risperidone (Risperdal), olanzapine (Zyprexa) and quetiapine (Seroquel). Only risperidone has been investigated in a controlled study of adults with autism. Like the antidepressants, these drugs all have potential side effects, including sedation.

Stimulants, such as Ritalin, Adderall, and Dexedine, used to treat hyperactivity in children with ADHD have also been prescribed for children with autism. Although few studies have been done, they may increase focus, and decrease impulsivity and hyperactivity in autism, particularly in higher-functioning children. However, dosages need to be carefully monitored, because behavioral side effects are often dose-related.

Increased use of medications to treat autism has highlighted the need for more studies of these drugs in children. The National Institute of Mental Health has established a network of Research Units on Pediatric Psychopharmacology (RUPPs) that combine expertise in psychopharmacology and psychiatry. Located at several research centers, they are intended to become a national resource that will expedite clinical trials in children. Five groups are specifically funded to evaluate treatments for autism, studying dose range and regimen of medications, as well as their mechanisms of action, safety, efficacy, and effects on cognition, behavior, and development. For example, the RUPP at Kennedy Krieger Institute is conducting a study on the efficacy of methylphenidate (Ritalin) in children and adolescents with Pervasive Developmental Disorders (PDD).

If you are considering the use of medications, contact a medical professional experienced in treating autism to learn of possible side effects. People with autism may have very sensitive nervous systems and normally recommended dosage may need to be adjusted. Even the use of large doses of vitamins should be done under the supervision of a medical doctor.

Vitamins & MineralsTop
  Over the past 10 years or more, claims have been made that vitamin and mineral supplements may improve the symptoms of autism, in a natural way. While not all researchers agree about whether these therapies are scientifically proven, many parent, and an increasing number of physicians, report improvement in people with autism when using individual or combined nutritional supplements.

Malabsorption problems and nutritional deficiencies have been addressed in several, as-of-yet, unreplicated studies. A few studies conducted in 2000 suggest that intestinal disorders and chronic gastrointestinal inflammation may reduce the absorption of essential nutrients and cause disruptions in immune and general metabolic functions that are dependent upon these essential vitamins. Other studies have shown that some children with autism may have low levels of vitamins A, B1, B3, B5, as well as biotin, selenium, zinc, and magnesium, while others may have an elevated serum copper to plasma zinc ratio, suggesting that people with autism should avoid copper and take extra zinc to boost their immune system. Other studies have indicated a need for more calcium.

Perhaps the most common vitamin supplement used in autism is vitamin B, which plays an important role in creating enzymes needed by the brain. In 18 studies on the use of vitamin B and magnesium (which is needed to make vitamin B effective), almost half of the individuals with autism showed improvement. The benefits include decreased behavioral problems, improved eye contact, better attention, and improvements in learning. Other research studies have shown that other supplements may help symptoms as well. Cod liver oil supplements (rich in vitamins A and D) have resulted in improved eye contact and behavior of children with autism. Vitamin C helps in brain function and deficiency symptoms like depression and confusion. Increasing vitamin C has been shown in a clinical trial to improve symptom severity in children with autism. And in a small pilot study in Arizona, using a multivitamin/mineral complex on 16 children with autism, improvements were observed in sleep, gastrointestinal problems, language, eye contact, and behavior.

Using Vitamins and Minerals

If you are considering the addition of vitamins or minerals to your child's diet, a laboratory and clinical assessment of nutritional status is highly recommended. The most accurate method for measuring vitamin and mineral levels is through a blood test. It is also important to work with someone knowledgeable in nutritional therapy. While large doses of some vitamins and minerals may not be harmful, others can be toxic. Once supplements are chosen, they should be phased in slowly (over several weeks) and then the effects should be observed for one to two months.

Dietary InterventionsTop
  Individuals with autism may exhibit low tolerance or allergies to certain foods or chemicals. While not a specific cause of autism, these food intolerances or allergies may contribute to behavioral issues. Many parents and professionals have reported significant changes when specific substances are eliminated from the child's diet.

Individuals with autism may have trouble digesting proteins such as gluten. Research in the U.S. and England has found elevated levels of certain peptides in the urine of children with autism, suggesting the incomplete breakdown of peptides from foods that contain gluten and casein. Gluten is found in wheat, oats and rye, and casein in dairy products. The incomplete breakdown and the excessive absorption of peptides may cause disruption in biochemical and neuroregulatory processes in the brain, affecting brain functions. Until there is more information as to why these proteins are not broken down, the removal of the proteins from the diet is the only way to prevent further neurological and gastrointestinal damage.

It is important not to withdraw gluten/casein food products at once from a child's diet, as there can be withdrawal symptoms. Parents wishing to pursue a gluten/casein free diet should consult a gastroenterologist or nutritionist, who can help ensure proper nutrition.

Some hypothesize that children with autism have what is referred to as a "leaky gut" -- tiny holes in their intestinal tract that may be caused by an overgrowth of yeast. Some believe that this overgrowth may contribute to behavioral and medical problems in individuals with autism, such as confusion, hyperactivity, stomach problems, and fatigue. The use of nutritional supplements, anti-fungal drugs and/or a yeast-free diet may reduce the behavioral problems. However, caution should be paid to the fact that just as antibiotics can lead to bacterial resistance, antifungals can lead to fungal resistance.

SecretinTop
  Secretin is a hormone produced by
the small intestine that helps in digestion.
The hormone can be administered and used as a single dose to diagnose gastrointestinal problems. In 1996, a young boy with autism was given secretin for an endoscopy and showed improvements in some of his symptoms of autism. Other parents and professionals who tried secretin on children with autism reported similar results, including improvements in sleep patterns, eye contact, language skills, and alertness. However, several studies funded by the National Institute of Child Health and Human Development (NICHD) in the past three years have found no statistically significant improvements in the core symptoms when compared to patients who received a placebo. It is also important to remember that secretin is approved by the FDA for a single dose; there is no data on the safety of repeated doses over time.
Education  

 When you have a child with a disability, it may seem that you've been dropped in the middle of a whirlwind of information and buzzwords.
 You'll hear things such as inclusion, behavior modification, functional analysis, IDEA, IEP, due process, evaluation and sensory integration. There are lengthy federal regulations that need to be read and understood, and disability magazines filled with one view or another about controversial issues. Some of the decisions you'll need to make may come from areas where you don't feel adequately informed. Of these important decisions, many will be in the area of education.

Educating children with autism is
a challenge for both parents and teachers.

These children are individuals first and foremost with unique strengths and weaknesses. Some may be of average to above average intelligence, while others may be below average. Academic goals need to be tailored to that individual's intellectual ability and functioning level.

Unique Needs & AbilitiesTop
  Just as there are various treatment approaches, there are multiple educational programs that provide stimulating learning environments. The Individuals with Disabilities Education Act (IDEA) is a federal mandate that guarantees students with disabilities a free, appropriate public education. The education plan for a student with disabilities can include "related services" that may encompass many of the treatments discussed in the treatments section.

The common thread in autism is the presence of a developmental disability, more specifically, a disorder of communication which manifests itself differently in each person. But whatever the level of impairment, the educational program for an individual with autism should be based on the unique needs of the student. If this is the first attempt by the parents and school system to develop an appropriate curriculum, conducting a comprehensive needs assessment is a good place to start. This evaluation will become the blueprint for your child's educational plan.

Educational planning for students with autism often addresses a wide range of skill development, including academics, communication and language skills, social skills, self-help skills, behavioral issues, and leisure skills. It's important to consult with professionals trained specifically in autism to help your child benefit from his/her school program. But keep in mind, even the most well-intentioned advice may generate inappropriate curriculum models and impair the child's ability to develop to his/her fullest potential. That's why it's important to get a wide range of opinions and keep a close eye on your child's progress or lack thereof.

Most professionals agree that individuals with autism respond well to highly structured, specialized education programs designed to meet the individual's needs. Based on the major characteristics associated with autism, there are areas that are important to look at when creating a plan: social skill development, communication, behavior, and sensory integration. Programs sometimes include several treatment components coordinated to assist a person with autism. For example, one individual's program may consist of speech therapy, social skill development and the use of medication, all within a structured behavior program. Another child's may include social skill development, sensory integration and dietary changes. No one program or diet is perfect for every person with autism. It's important to try several approaches and find the ones that work best on an individual basis.

With all of that said, parents and
professionals need to work together.
Teachers should have some understanding of the child's behavior and communication skills at home, and parents should let teachers know about their expectations as well as what techniques work at home. Open communication between school staff and parents can lead to better evaluation of a student's progress. Community goals like purchasing meals and grocery shopping should be reinforced through work at school, just as parents' goals for their child outside of school, such as the development of leisure activities, should be reinforced. Cooperation between parents and professionals can lead to increased success for the individual with autism.

Academic goals need to be tailored to the individual's intellectual ability and functioning level. Some children may need help in understanding social situations and developing appropriate responses. Others may exhibit aggressive or self-injurious behavior, and need assistance managing their behaviors. No one program will meet the needs of all individuals with the disability, so it is important to find the program or programs that best fit your child's needs. Just like with treatment approaches, educational programs should be tailored to your child's individual needs, be flexible and be re-evaluated on a regular basis.

IDEA and Your Child's Rights  

To understand your child's rights in America's public schools, it helps to start with one of the primary laws governing the education of children with disabilities: the Individuals with Disabilities Education Act  IDEA is a federal law that guarantees a free and appropriate public education for every child with a disability.
This means that if you enroll your child in public school, his/her education should be at no cost to you and should be appropriate for his/her age, ability and developmental level. IDEA is an amended version of the Education for All Handicapped Children Act (P.L. 94-142), passed in 1975. In 1997, IDEA was reauthorized (P.L. 105-17), further defining children's rights to educational services and strengthening the role of parents in the educational planning process for their children.

Getting a copy of IDEA

Copies of the IDEA law and/or regulations are available from the Government Printing Office or may be available at your public library. Your state senator may also be able to provide you with a copy. Or you can visit the Web site of the Families and Advocates Partnership for Education (FAPE) project, run by the PACER Center and funded by the U.S. Department of Education or the IDEA Partnerships Web site at http://www.ideapractices.org/ for information on the law and its regulations.

IDEA has both statutes and regulations. The IDEA statute is the governing legislation - the language of the law, and the regulations are an explanation of how the law is to be enacted. The law explains what conditions exist; the regulations explain how these conditions are applied.

Appropriate vs. IdealTop  
  Given the rights your child has to educational services, you must keep in mind that IDEA establishes the minimum requirements schools must provide. For states to receive federal funds, they must meet the eligibility funding criteria of IDEA. States may exceed the requirements and provide more services. They cannot, however, provide less or have state regulations or practices that contradict the guidelines of IDEA.

The federal regulations do not require states to provide an "ideal" educational program or a program the parents may feel is "best." The state must provide an appropriate educational program, one that meets the needs of the individual student.

Other Laws

Two other laws governing the educational rights of students with disabilities are the Family Educational Rights and Privacy Act of 1974 (P.L. 93-380), and Section 504 of the Rehabilitation Act of 1973, (P.L. 93-112).

In brief, the Family Educational Rights and Privacy Act (FERPA) protects the privacy of a student's educational records and outlines inspection and release of information. Section 504 of the Rehabilitation Act protects the civil rights of persons with disabilities. It prohibits discrimination against a person with a disability by an agency receiving federal funds.

Placement OptionsTop
  Parents need to be aware of the educational rights and the placement options available. There is not a "one size fits all" model for the education of children with disabilities. Programs that are called "autism classrooms" or "autism programs" may not provide the services and curriculum that are right for your child. Therefore, it is possible that a child with autism may not receive an appropriate education in an "autism class." The range of available placement options allows for the creation of unique educational placements for each child.

Placement options range from total inclusive settings where children with autism receive their education alongside non-disabled peers to private placement in residential programs for children with disabilities. Within that range, a wide variety of plans can be created to meet the unique needs of each student. A parent may wish to look at placement options as they currently exist for other students. By viewing current special education programs and inclusive classrooms, you'll get an idea of how other Individualized Education Plans (IEPs) have been put into practice.

Determining Placement

Determining the most appropriate placement for your child is a two-step process:

  1. Determine your child's level of functioning and associated needs by requesting an evaluation or re-evaluation through the school or an independent professional(s). This evaluation should include specific recommendations for supports, educational services and levels of treatments.
  2. In collaboration with your child's prospective teacher(s), service providers and school administrator; develop a well-defined and thorough IEP. Discuss the options for placement that meet the needs of your child. How does the school currently provide services for children with disabilities? Are there programs currently in place that can be modified to meet my child's needs? Using this information, you and the school together can determine your child's most appropriate placement.

Least Restrictive Environment

When faced with the challenge of selecting an appropriate placement for a child, parents and professionals need to understand the concept of "least restrictive environment" (LRE). The IDEA sets up procedural guidelines to ensure a free appropriate education in the least restrictive environment tailored to each child's individual needs.

The law begins with the assumption that, to the maximum extent possible, children with disabilities should be educated with their non-disabled peers. Once the child's needs are assessed and necessary services and supports are determined, the placement options should begin with the regular or inclusive classroom. Children with disabilities do not have to start in a more restrictive or separate class and then "earn" the right to move to a less restrictive placement. If it is found that a regular education classroom would not meet the child's needs, even with support services, then another option may be pursued. Keep in mind that the child with a disability must benefit from the placement. The child should not be "dumped" in a classroom where the child is not receiving an appropriate education.

The law specifies that educational placement should be determined individually for each child, based on that child's specific needs, not solely on the diagnosis or category. No one program or amount of services is appropriate for all children with disabilities. A safe educational environment is important for all children. School safety concerns are addressed in IDEA. Educational services cannot be withheld as a disciplinary remedy. While students with disabilities may be suspended for disciplinary concerns that would also apply to general education students, educational services must continue at all times, even when a student is expelled for behavior not associated with his disability.

EvaluationTop
  The first step in obtaining special education services is for your child to be evaluated. The evaluation can be done when your child is first suspected of having a disability (pre-placement evaluation) or when your child's level of functioning changes in one or more areas (re-evaluation). There are two ways in which a child can be evaluated under the regulations of IDEA:
  • The parent can request an evaluation by calling or writing the director of special education or the principal of the child's school. If you call, also put your request in writing, keeping a copy for yourself. This should be part of your routine communication with anyone concerning your child's education. Follow-up all telephone calls with a letter summarizing the conversation. This way, the other party has the opportunity to make corrections to any misunderstood information, and you have a paper trail in case of a disagreement with the school system.
  • The school system may also determine an evaluation is necessary. If so, they must receive written permission from the parent before the evaluation can be conducted.

An evaluation should be conducted by a multidisciplinary team or group of persons, which must include at least one teacher or other specialist with specific knowledge in the area of suspected disability. IDEA requires that no single procedure be used as the sole criterion for determining an appropriate education program for a child. The law also requires that the child be assessed in all areas related to the suspected disability, including but not limited to, health, vision, hearing, communication abilities, motor skills, and social and/or emotional status.

If the parents disagree with the results of the evaluation, they may choose to obtain an independent evaluation at public or private expense. A list of professionals that meet state requirements may be requested from your school, or you can choose one on your own. If the professional chosen meets appropriate criteria set up by the state, then the school must consider their evaluation in developing an IEP.

Re-Evaluation

If a child already receives special education services, the above standards apply for re-evaluation. A re-evaluation must take place at least every three years. It may, however, be conducted more often if the parent or teacher makes a written request. An evaluation may also be done in specific areas of concern. A re-evaluation of all areas of suspected need or one for particular areas may occur if a parent feels their child is not meeting the short-term objectives of the current IEP.

Parents who feel their child's placement should be changed, need to have a basis for their request. For example, a child may be exhibiting problem behaviors that were not previously exhibited. It may be necessary to reassess his placement or develop new behavior techniques to address this area. As a first step, an evaluation by a specialist familiar with autistic behaviors could be requested. The IEP can then be changed to reflect the results.

For example, a child may have an annual goal to increase her language production and comprehension skills, but is not meeting the objectives developed in her IEP for this goal. The parent may wish to request that a re-evaluation be done with a speech therapist that has knowledge of autism. It may be determined from the results that an increase in the number of hours of therapy per week is necessary.

A re-evaluation of all areas of suspected need may come prior to the scheduled annual IEP meeting. If the child has made significant progress since the last evaluation, the treatment, placement and therapy recommendations may not be applicable. A re-evaluation, addressing all areas, would become the basis for a more appropriate IEP.

Parents may suggest professionals with knowledge of autism be present at the school for these evaluations. The school does not have to use the suggested professional, but may appreciate the assistance in finding a qualified person. As explained above, if the parents disagree with the school's evaluation, they do have a right to acquire an independent evaluation.

The evaluation (school or independent) should become the basis for writing the child's IEP. The IEP must be prepared and agreed upon before placement decisions are made. The placement may not be chosen first, then the IEP written to fit the placement decision.

Individual Education Plan (IEP)  

The Individualized Education Plan (IEP) is a written document that outlines a child's education.
As the name implies, the educational program should be tailored to the individual student to provide maximum educational benefit. The key word is individual. A program that is appropriate for one child with autism may not be appropriate for another.

The IEP is the cornerstone for the education of a child with a disability. It should identify the services a child needs so that he/she may grow and learn during the school year. It is also a legal document that outlines:

  • The child's special education plan by defining goals for the school year
  • Services needed to help the child meet those goals
  • A method of evaluating the student's progress

The objectives, goals and selected services are not just a collection of ideas on how the school may educate a child. The school district must educate your child in accordance with the IEP.

To develop an IEP, the local education agency officials and others involved in the child's educational program meet to discuss education related goals. By law, the following people must be invited to attend the IEP meeting:

  • One or both of the child's parents
  • The child's teacher or prospective teacher
  • A representative of the public agency (local education agency), other than the child's teacher, who is qualified to provide or supervise the provision of special education
  • The child, if appropriate
  • Other individuals at the discretion of the parent or agency (such as a physician, advocate, or neighbor)

With the 1997 Reauthorization of IDEA (P.L. 105-17), parents now must be included as "members of any group that makes decisions on the educational placement of the child." IEP meetings must be held at least annually, but may be held more often if needed. Parents may request a review or revision of the IEP at any time. While teachers and school personnel may come prepared for the meeting with an outline of goals and objectives, the IEP is not complete until it has been thoroughly discussed and all parties agree to the written document.

Parents are entitled to participate in the IEP meeting as equal participants with suggestions and opinions regarding their child's education. They may bring a list of suggested goals and objectives, as well as additional information that may be pertinent, to the IEP meeting.

The local education agency (LEA) must attempt to schedule the IEP meeting at a time and place agreeable to both school staff and parents. School districts must notify parents in a timely manner so that they will have an opportunity to attend. The notification must indicate the purpose of the meeting (i.e. to discuss transition services, behavior problems interfering with learning, academic growth).

Parents may encounter stipulations presented by school personnel that may not necessarily be supported by the provisions of the IDEA. Some statements have included:

  • "IEPs must be a predetermined number of pages."
  • "IEPs are to be completed without parental input and only a certain number of goals and objectives are allowed on the IEP."
  • "If your objective doesn't fit into the field length on our computer program, it can't be included."

There is nothing in the federal law that supports these type of statements or stipulations. While parents should not accept misinformation concerning the IEP, you don't need to approach the parent/school relationship in an adversarial manner. It is in everyone's best interest to remember that both parents and teachers share a common goal: to develop a program that will be appropriate for the child with autism. By sharing information and knowledge, parents and schools can collaborate to develop a truly effective IEP.

The IEP MeetingTop
  After an evaluation has been done, the IEP meeting will be scheduled. As noted earlier, you are entitled under law to attend and participate in this meeting, and you must be given ample notification of the time and place. You should also request a copy of the evaluation that was done prior to the meeting so you have time to review it.

The Families and Advocates Partnership for Education (FAPE) suggests considering the following:

  • What is your vision for your child - for the future as well as the next school year?
  • What you are child's strengths, needs and interests?
  • What are your major concerns about his or her education?
  • In your child's education thus far, what has and has not worked?
  • Does the evaluation fit with what you know about your child?

While the IEP meeting is meant to develop an educational plan for your child, it is also an opportunity for you to share information about your child, your expectations and what techniques have worked at home. If for some reason you do not agree with the proposed IEP, you do have recourse. See the section, "What If You and the School Don't Agree?"

Content of the IEP

The IEP should address all areas in which a child needs educational assistance. This can include academic and non-academic goals, if the services to be provided will result in educational benefit for the child. All areas of projected need, such as social skills (playing with other children, responding to Q&A), functional skills (dressing, crossing the street to walk to the school bus safely), related services (occupational therapy, speech therapy, physical therapy), can also be included in the IEP.

The IEP should list the setting in which the services will be provided and the professionals who will provide the service. Content of an IEP must include the following:

  • A statement of the child's present level of educational performance. This should include both academic and non- academic aspects of his/her performance.
  • A statement of annual goals that the student may reasonably accomplish in the next 12 months. This statement should also include a series of measurable, intermediate objectives for each goal. This will help both the parents and educators know whether the child is progressing and benefiting from his/her education. The development of specific, well-defined goals and objectives is crucial to your child receiving an appropriate education.
  • Appropriate objective criteria, evaluation procedures and schedules for determining, at least annually, whether the child is achieving the short-term objectives set out in the IEP. (For example, "How are we judging whether intervention is successful?" "How long will my child be in this program?")
  • A description of all specific special education and related services, including individualized instruction and related supports and services, to be provided (e.g. occupational therapy, physical therapy, speech therapy, transportation, recreation). This includes the extent to which the child will participate in regular educational programs.
  • The initiation date and duration of each of the services, as determined above, to be provided (this can include extended school year services). You may include the person who will be responsible for implementing each service.
  • If your child is 16 years old or older, the IEP must include a description of transitional services (coordinated set of activities designed to assist the student in movement from school to post-school activities).
Related ServicesTop
  It is important that the child receive an appropriate education and therefore benefit from that education. Students with disabilities have a right to related services to help them learn and receive the maximum benefit from their educational programs. Related services, according to IDEA, consist of "transportation and such developmental, corrective and other supportive services as are required to assist a child with a disability to benefit from special education." These services are to be determined on an individualized basis, not by the disability or category of the disability.

If a child needs any of these "related services" to benefit from his/her education, they must be written into the IEP. Frequency and duration of services, as well as relevant objectives, should be included. Related services as defined by IDEA may include, but are not limited to the following:

  • Audiology
  • Counseling services
  • Early identification and assessment of disabilities in children
  • Medical services (for diagnostic or evaluation purposes only)
  • Occupational therapy
  • Parent counseling and training
  • Physical therapy
  • Psychological services
  • Recreation
  • Rehabilitation counseling
  • School health services
  • Social work services
  • Speech pathology
  • Transportation

The regulation does not limit related services to those specifically mentioned above. If a child requires a particular service to benefit from special education and that service is developmental, corrective or supportive, it is also a "related" service and should be provided. It does not have to be expressly listed in the regulation. Examples of these kinds of services may include a full or part-time aide or assistive technology, such as a computer.

Teacher/Staff RequirementsTop
  While the IEP goals and objectives should be child-centered, the document may also contain information regarding teacher/staff training. If the IEP team decides that additional training is required for a student's teacher, this information must be included in the text of the IEP. For example, the team may decide it will be beneficial for a teacher to take an autism course at a local university. Or it may want the school support staff to attend a two-hour seminar on autism. Personnel standards and teacher certification requirements are established by each state. For more information on the state certification requirements in your area, please contact the appropriate state education agency.
Goals/Objectives/EvaluationTop
  An IEP should include goals and objectives specific to each child's unique needs. Goals may be broad, such as "John will increase his verbal communication and comprehension," or specific, such as "This student will learn to interact more with her peers at recess and lunch." Educational objectives are tailored to a child's individual needs and based on the long-term goal. They describe the process by which the child may reach the goal and how a child's progress will be monitored.

For example:

GOAL: "Krista will increase her verbal responses to questions during the course of the year."

OBJECTIVE: "Krista will increase her verbal responses by receiving speech therapy from a licensed speech pathologist at least four times a week, in a one-on-one situation, in the resource room. The sessions will last at least 30 minutes. Krista will verbally answer questions with 85 percent accuracy, after receiving both verbal and visual cues. The speech pathologist will send weekly reports, based on record keeping, to Krista's parents as well as her homeroom teacher. This therapy shall begin September 1st and continue until June 3rd, excluding pre-determined school holidays."

The above objective specifically states:

  • The service to be provided (speech therapy),
  • The professional who will be providing that service (a licensed speech pathologist),
  • The setting in which the service will be provided (resource room),
  • How often the service will be provided (four times a week), and
  • The length of the service (30 minutes/session from September 1st through June 3rd).

The evaluation component of the objective addresses the question "How will we know whether Krista is making progress?" In this case, the speech pathologist will determine whether Krista is meeting the goal of 85 percent accuracy and send reports to her homeroom teacher and family each week. Other evaluation methods include test-taking, videotaping, peer reports, daily logs, checklists, computer printouts, and worksheets.

The above information is only one example of an objective to meet the goal of increasing verbal responses. Goals can have more than one objective. Parents may wish to review with school staff the curriculum and methods used for their child's education. Use this information as a springboard for discussion among IEP team members.

What If You and the School Don't Agree?

Within the law, there are specific procedural safeguards to protect your child's rights. If you and the school disagree on the placement, educational program or other areas surrounding your child's education, you may want to utilize one or more of the following approaches:

  • Discussion or conference with school staff. Staff may include the teachers, counselors or principal.
  • An IEP review. You may request an IEP review at any time.
  • Negotiation or mediation. Mediation is a voluntary process as described in IDEA in which a neutral third person (mediator) assists parties (parents and the school) to work together to resolve their dispute. All states must have a mediation process established that meets the requirements of IDEA, including maintaining a list of qualified mediators and bearing the cost of the mediation process. Neither party is required to use mediation. The mediator cannot force either party to accept a resolution to the dispute. If a mutually satisfactory agreement is reached on some or all of the issues, a written agreement is set forth. Discussions that occur in mediation are confidential and may not be used as evidence in subsequent proceedings. Mediation must be available as a dispute resolution option, but may not be used to deny or delay the parental right to a due process hearing.
  • Due Process Hearing. You may request a due process hearing if you do not agree with your child's identification, evaluation, or educational placement. This is a legal proceeding, and you should obtain legal advice.
  • Complaint resolution procedures. Any individual or organization may file a complaint alleging that the local educational agency has violated a requirement of IDEA. The complaint must be written and signed; it must cite the specific IDEA requirement that was violated and the facts upon which the allegation is made. The state educational agency must resolve the issues of the complaint within 60 calendar days after it is filed.

After The IEP Is Completed

Once the IEP is completed, ongoing communication between school and parents is essential to a child's success. The family and the school need to work together for the child to receive maximum benefit. The IEP is a working document that can change. It should represent a program flexible enough to respond to the changing needs and skills of the person with autism. The IEP team can meet to discuss changes or additions to a child's plan at any time. The child's parents or school representatives may request a meeting when either party feels the IEP needs to be adjusted to a child's current needs.

Support AgenciesTop
  Many parents seek out assistance from education advocates or disability advocates. To help you better understand your child's rights under federal law, and more effectively communicate with professionals regarding your child's education, each state has a federally funded Parent Training Information Center (PTI) that provides information and assistance to parents facing the educational process. PTIs are designed to teach parents basic advocacy techniques and encourage parents to become full participants in their child's education. These organizations, which are sometimes administered through other disability organizations such as Easter Seals or the ARC, can help parents gain confidence in advocating for their children's rights.

Every state also has a Protection and Advocacy Agency. Originally these agencies were set up to protect individuals with disabilities from abuse and neglect; however, their scope is much broader now. In many of the agencies, their advocacy centers around helping families obtain free, appropriate, public education for their children. State Protection and Advocacy Agencies offer training, case management, and legal counsel in many instances.

The U.S. Department of Education's Office of Special Education Programs (OSEP) can also be a resource of information on education rights. If you have a question regarding IDEA and can't seem to get an answer in your state, you may write OSEP for clarification of the law. Contact OSEP directly at the Office of Special Education Programs, U.S. Department of Education, 400 Maryland Avenue SW, Mail Stop 2651, Washington, DC 20202, 202-205-5507.

The demands of raising a child with autism are great, and families frequently experience high levels of stress. Recognizing and preparing yourself for the challenges that are in store will make a tremendous difference to all involved, including the parents, siblings, grandparents, extended family, and friends.

The uniqueness of each individual with autism makes the experience of raising a child with autism different for each family. But there are some consistent themes or issues that most families will want to be aware to be able to provide the best support to the individual and to family members.

The ASA has developed in-depth information on a variety of topics related to living with autism. The information below is by no means exhaustive, but it should help to equip families with some of the basic tools they may need to successfully raise a child with autism.

Stress on Families

Stress - something parents in general are all too familiar with. There is the physical stress from carpools, preparing meals, bathing, homework, shopping, and so on. This is compounded by such psychological stressors as parent-child conflicts, not having enough time to complete responsibilities and concern regarding a child's well-being. When a family has a child diagnosed with autism, unique stressors are added.

Sources of Stress for Parents

Deficits and Behaviors of Autism. Research indicates that parents of children with autism experience greater stress than parents of children with mental retardation and Down Syndrome. (Holroyd & McArthur, 1976; Donovan, 1988). This may be a result of the distinct characteristics that individuals with autism exhibit. An individual with autism may not be able to express their basic wants or needs. Therefore, parents are left playing a guessing game. Is the child crying because he/she are thirsty, hungry, or sick? When the parent cannot determine their child's needs, both are left feeling frustrated. The child's frustration can lead to aggressive or self-injurious behaviors that threaten their safety and the safety of other family members (e.g. siblings). Stereotypic and compulsive behaviors concern parents since they appear peculiar and interfere with functioning and learning.

A child's deficits in social skills, such as the lack of appropriate play, are also stressful for families. Individuals lacking appropriate leisure skills often require constant structure of their time, a task not feasible to accomplish in the home environment. Finally, many families struggle with the additional challenges of getting their child to sleep through the night or eat a wider variety of foods. All of these deficits and behaviors are physically exhausting for families and emotionally draining.

However, in families of children with autism this is a challenge. Scheduled dinner times may not be successful due to the child's inability to sit appropriately for extended periods of time. Bedtime routines can be interrupted by difficulties sleeping. Maladaptive behaviors may prevent families from attending events together. For example, Mom might have to stay home while Dad takes the sibling to their soccer game. Not being able to do things as a family can impact the marital relationship. In addition, spouses often cannot spend time alone due to their extreme parenting demands and the lack of qualified staff to watch a child with autism in their absence.

Reactions from Society and Feelings of Isolation.
Taking an individual with autism out into the community can be a source of stress for parents. People may stare, make comments or fail to understand any mishaps or behaviors that may occur. For example, individuals with autism have been seen taking a stranger's food right off their plate. As a result of these potential experiences, families often feel uncomfortable taking their child to the homes of friends or relatives. This makes holidays an especially difficult time for these families. Feeling like they cannot socialize or relate to others, parents of children with autism may experience a sense of isolation from their friends, relatives and community.

Concerns Over Future Caregiving.
One of the most significant sources of stress is the concern regarding future caregiving. Parents know that they provide their child with exceptional care. They fear that no one will take care of their child like they do. There may also be no other family members willing or capable of accomplishing this task. Even though parents try and fight off thinking about the future, these thoughts and worries are still continually present.

Finances. Having a child with autism can drain a family's resources due to expenses such as evaluations, home programs, and various therapies. Because one parent might give up his or her job because of the caregiving demands of raising a child with autism, financial strains may be exacerbated by only having one income to support all of the families' needs.

Feelings of Grief. Parents of children with autism are grieving the loss of the "typical" child that they expected to have. In addition, parents are grieving the loss of lifestyle that they expected for themselves and family. The feelings of grief that parents experience can be a source of stress due its ongoing nature. Current theories of grief suggest that parents of children with developmental disabilities experience episodes of grief throughout the life cycle as different events (e.g., birthdays, holidays, unending caregiving) trigger grief reactions (Worthington, 1994). Experiencing "chronic sorrow" is a psychological stressor that can be frustrating, confusing and depressing.

Sources of Stress for Siblings

There are also potential sources of stress for siblings. Not all siblings will experience these issues, but here are some to be aware of:

  • Embarrassment around peers. Jealousy regarding amount of time parents spend with their brother/sister
  • Frustration over not being able to engage or get a response from their brother/sister 
  • Being the target of aggressive behaviors
  • Trying to make up for the deficits of their brother/sister
  • Concern regarding their parents stress and grief
  • Concern over their role in future caregiving

Sources of Stress for Grandparents

Like parents, grandparents can grieve over the loss of the "typical" grandchild they expected to have. In addition, grandparents are concerned about the stress and difficult situations they see their children experiencing.

Many grandparents want to help but they often face two obstacles. First, most of them do not have the training in behavior management that is required to handle behavioral episodes. They may offer advice related to their experiences, but these may not be successful for individuals with autism. This can cause parents to become frustrated when they perceive the grandparents as not understanding their situations. Second, grandparents may not be physically able to manage the behaviors of individuals with autism. Grandparents just want to play with their grandchildren and "spoil" them to death. Unfortunately, autism prevents them from achieving either of these desires.

What Can Be Done To Address Family Stress

Luckily, parents can take action to address the stress that they experience. I acknowledge that accessing services or doing any additional tasks can be overwhelming, considering what family members are already dealing with on a daily basis. However, remember that it is only by taking action that challenges can be directly tackled. Below are some suggestions for family members to get started with in enhancing their family functioning.

Take Time For Yourself and Other Family Members.

In order to avoid burnout, parents must make time for themselves. Parents often respond to this suggestion by saying that they don't have any time to do that. However, what you need to keep in mind is that even a few minutes a day can make a difference. Some parents just do such simple things as apply hand lotion or cook their favorite dinners to make themselves feel better. Parents, just like individuals with autism, need rewards in order to be motivated. Parents who have children with autism have even more of a need to reward themselves, because parenting their child is often frustrating and stressful.

In addition to rewarding themselves, family members need to reward one another. Spouses need to acknowledge the hard work that each is achieving. Also remember to thank siblings for watching or helping out their brothers and sisters. It is also important that spouses try to spend some time alone. Again, the quantity of time is not as important as the quality. This may include watching television together when the children are asleep, going out to dinner, or meeting for lunch when the children are in school.

Families may also want to occasionally engage in activities without the individual with autism. This may include mom, dad and the siblings attending an amusement park together. Often families feel guilty not including the individual with autism, but everyone deserves to enjoy time together that is not threatened by the challenges of autism.

Network With Other Families Affected
by Autism or Another Disability

It gives us comfort to know that we are not the only ones experiencing a particularly stressful situation. In addition, one can get the most useful advise from others struggling with the same challenges. Support groups for parents, siblings and grandparents are available through educational programs, parent resource centers, autism societies and Developmental Disabilities Offices. In addition, there are now online supports available for family members.

Other Strategies to Address Stress

When it comes to reducing stress, be creative. You may want to consider one or more of the following approaches:

  • Prayer
  • Exercise
  • Deep breathing / relaxation exercises
  • Writing in a journal
  • Keeping a daily schedule of things to accomplish
  • Advocacy
  • Individual, marital or family counseling

If you or a family member is exhibiting signs of stress, you need to take action. Even if it takes the last bit of energy you have left, getting assistance can only make things get better. Yes, waiting lists, burdensome paperwork and bureaucracy can make accessing supports stressful but in the long run, it will be worth it.

Safety in the Home

Most parents and caregivers would view safety as a significant concern regarding their children in the home environment. Modifications such as placing gates in stairwells and doorways, covering electrical outlets, and using childproof locks on cabinets are some of the things many parents do to ensure safety.

For parents of "typical" children, such safety precautions are usually necessary for the first few years of childhood, after which the child develops, matures and no longer requires the use of modifications. However, for parents of children with autism or PDD (Pervasive Developmental Disorder), it is a different story. There are a myriad of additional issues to consider when addressing the safety of the individual with autism, the family members, and the home environment - often throughout the lifespan of the child.

Consider the many behaviors an individual with autism may engage in that could be unsafe: climbing, throwing, breaking, jumping, peeling, cutting, pulling down, throwing utensils, plates and cups, sweeping items off surfaces, dumping drawers and bins, and climbing out of or breaking windows. Or consider what can happen when natural curiosity and household appliances converge: putting items in appliances, flushing things, touching burners, turning hot faucets, inserting items into electrical sockets, chewing on wires, and crawling in a washer or dryer. Finally, consider the potential dangers that can result from playing with matches, lighters or fire.

Often, though, the children with autism who display such behavioral concerns do not understand the ramifications of their actions, which, at best, can be bothersome and, at worst, can be devastatingly tragic. Therefore, it becomes incumbent upon the caregivers in the home to provide both a safe environment and ways to teach their children to be safe.

This article addresses environmental and safety modifications that can be made in the home as well as steps that can be taken to prevent unsafe or inappropriate behaviors.

The following suggestions have been found to be helpful in preventing these types of behaviors and ensuring a safer environment. The suggestions range from using locks for security or limiting access to the individual to labeling every functional item and area in the home with photographs or symbols to assist in communication.

Sometimes parents balk (initially) at the idea of having to place locks on doors or cabinets, having to place alarms outside a child's bedroom, or having to label the house with PCS cards. They often say: "This is not a classroom." However, your home is indeed a natural learning environment, just like a classroom.

Establish priority areas for modification.
 Modify the most important areas first - such as the individual's bedroom, bathroom, leisure areas, kitchen, and back yard - since these are the primary areas of interaction for many children with autism. When starting, think about the room(s) in which the child spends the most time; for some children it would be a recreation/ family room, for other children it might be the bedroom or kitchen. In addition, consider the behaviors to be modified and their relationship to the environment. If the individual likes to put things in the toilet or run hot water in the bath, modifications should begin in the bathroom. If the child runs out of the house, modifications should begin with securing exterior doors with locks.

Arrange the furniture appropriately. Arrange the furniture in these areas in a way that "makes sense" for the activities the individual is expected to do. That is, if the individual will be doing "seated" activities, ensure that there are clear table surfaces and appropriate chairs. If the child frequently runs out of a room via a predictable path, arrange the furniture and close doors so that he or she is unable to escape. Limit the need for excessive movement and/or transition. Move furniture away from shelves or places where the child may climb. Keep furniture surfaces clear (if the individual is a "sweeper") and place items out of reach on shelves, in bins, or locked away. In addition, use gates or barriers to provide safety from falling down steps or limiting access to areas in the home.

Use locks where appropriate. It is important to place locks on exterior doors that provide entry or departure to and from the home. For individuals who run away or leave the home without supervision {also referred to as "elopement"), having locks on the doors can prevent them from leaving. Place locks on interior doors and cabinets where the individual should not have free access.

Some parents feel more secure when their child is locked into his or her bedroom at night to prevent "in the middle of the night" wandering. If you choose to put locks on the doors, use locks that you are able to open such as a lock with a keyhole/key, a hook-and-eye lock, or a slide-bolt. Some parents place the lock key above the doorframe of the room to have quick and easy access. If a button-knob lock is used on the outside of the door, make sure that the child does not lock you into the room with him or her. It is also imperative that you have immediate access to the room where the door is locked in the event of fire, flood, etc.

Regarding locks on cabinets and drawers, use safety locks (often plastic devices) to secure items that may be unsafe for the individual. Many parents place these locks on bathroom and kitchen cabinets to prevent access to items in the cabinets.

Safeguard your windows. If the child likes to climb out of windows, place locks on them. Hardware stores carry special locks for just this purpose. If the child breaks glass or pounds windows, replace the glass panes with Plexiglas to prevent injury. Some parents have had to also place wooden boards over windows to prevent injury or elopement.

Make electrical outlets, appliances safe. Cover or remove electrical outlets and access to electrical appliances. Use plastic knob covers {also available at hardware stores) for doors, faucets, ovens, and stove burners. Lock the door to the room or rooms with the washer or dryer, appliances or power tools to limit entry and access. Ensure that all wiring for appliances and electronics is concealed in a way that the child cannot play with the wires. Individuals with autism have both a curious interest in how things work and a pervasive "unawareness" of dangerous situations - a potentially powerful combination when it comes to electrical materials.

Lock dangerous items away
Secure items that are dangerous if ingested, such as detergents, chemicals, cleaning supplies, pesticides, medications, and small items that a child may mouth or chew, It is easy for an individual with autism to confuse a bottle of yellow cleaning fluid with juice based upon appearance, to eat pills that look like candy, or to pour / spill liquids out of any bottle (some of which may be poisonous or toxic). Place such items out of reach or in cabinets with locks. Keep the Poison Control phone number in a permanent place that is clearly in view.

Secure items/materials that are dangerous or unsafe if used without supervision, such as sharp objects/ utensils (scissors, knives, razor blades). When unsupervised, many children like to cut things (clothing, curtains, wires, books, etc.) into pieces with scissors or knives. Ensure that scissors used by the individual have blunted ends (child-safety scissors), and be sure to provide supervision when involved in cutting activities. In addition, secure items that need to be limited (i.e., candy, Nintendo, lighters, matches, TV, VCR, toilet tank covers) with a lock or ties.

Label everyday items. Place visual labels (symbols, photos, words, textures) on functional items, rooms, cabinets, drawers, bins, closets, and anything that has relevance for the child. By labeling the environment, the child may better understand what is expected and may be less likely to engage in undesirable behaviors. In addition, if the child understands the function of an item, piece of furniture, etc., he/she is more likely to use it for its intended purpose. For example, by placing visual labels on the bed for sleeping, the child may be less likely to view the bed as a trampoline. By placing labels on drawers and closets, it may reduce power struggles over being asked to put things away because the child will know where to put them.

Organize everyday items.
Organize functional items in see-through plastic bins/boxes with visual labels (symbols, photos, words, textures) so the child can see and use the receptacles. Place the bins on shelves or in places that the child can easily see and access. Once again, the more organization, order and structure in the individual's environment, the more likely it will reduce the frustration level of the child and the less likely he or she will be to display in appropriate behaviors.

Institute appropriate seating.
Ensuring that the individual is seated properly at a table or work station can help prevent behavioral concerns, such as throwing objects, knocking over furniture, self-stimulatory behaviors, and acts of aggression. For example, some children need to be seated in chairs with arms or a wrap-around style desk when doing work. Others may need to be seated in a place where they cannot escape from the table, such as against the wall or in a corner. In addition, a proper sitting posture (body at aright angle and feet flat on the floor) will help facilitate good learning and/or eating behaviors.

Use visual signs. Use dividers, tape boundaries, and signs as needed for setting expectations and limit setting. For example, the use of STOP signs on doors, drawers, furniture, and appliances has helped some children understand that these items/ areas are off limits. For children who climb on high surfaces or enter areas that they should not, STOP signs will let them know that what they are doing is dangerous. Using color tape to designate boundaries on carpets, floors, or walls can help to visually remind the child where their bodies need to remain.

Secure eating utensils and place settings.
For utensil use during mealtimes, consider tying utensils to nylon string and attaching them to the chair or leg of the table so that if the child throws the utensils, they will remain attached to the string. There have been children who have "unintentionally" thrown forks across the table and injured other family members. If the child throws or sweeps plates, bowls, and cups, secure them with adhesive Velcro and attach them to a secure placement. Use plastic or rubber plates, bowls, and cups to prevent shattering of breakable items.

Safeguard bath items/toys.
For bathing activities, have bath toys in a bag/bin away from the tub and unavailable until bathing/hair washing are competed. This will help the child focus on bathing and prevent power struggles while in the tub. You do not want a child flailing around while in a slippery bathtub since he or she or you could be injured. When the child is finished bathing/hair washing, you can then give him or her access to tub toys. Keep bath items (soap, washcloth, shampoo, sponges, etc.) together in a plastic or rubber bag/bin and accessible. Replace open-lip bottles with pump so the child will not empty or ingest the contents.

Remember fire safety.
Regarding fire safety, it is important to have lighters and matches out of reach or locked up. Place safety covers over gas stoves and oven knobs so the child cannot turn them on. Always supervise the children closely when there is an active fire in the fireplace or when there is a barbecue with open flames. Many community fire departments can provide stickers (called tot finders) for bedroom windows of children, so that in the event of afire, the firefighters can locate a child's bedroom quickly. While it may be difficult to teach an individual with autism/PDD about the dangerous nature of fire, it may be possible to teach him or her about how to behave when it comes to fire safety.

Developing social stories (with photographs, pictures, words) about smoke detectors, fire drills, fire alarms, touching fire, etc., and reading the stories to the child on a regular basis, is the place to begin. [A social story is a short, personalized story that explains the subtle cues in social situations and breaks down a situation or task into easy-to-follow steps.] In addition to social stories, the use of visual (photos, pictures) rules can assist the child in understanding what they are not supposed to do and/ or what they are expected to do. For example, "no touching the oven burners" with a photograph of the over burners with a bright red "no" symbol or STOP sign over the photograph may visually depict the rule for the child.

Consider identification options.
 It is important that your child has proper identification in the event that he or she runs away or gets lost and is unable to communicate effectively. Once a child with autism becomes mobile, he/she may decide to walk out of the home without supervision. These children often like to be outside and in motion, so leaving the home to play outside is common. Once outside of the home, the child is then vulnerable and often unable to get home or communicate where they live.

If the child will tolerate wearing a medical ID bracelet or necklace, get one (they can be found your local drug store). However, many children with autism do not like to wear jewelry, so the next best option is to place iron-on labels into each garment. Some children can be taught to carry and provide an identification card from a wallet or fanny pack. Children who are verbal may also be able to learn to show their identification cards.

Introduce Intervention Techniques to Teach Safety.
 In addition to the physical modifications to your home, you will want to introduce behavior modification techniques to teach your child how to be safe and act appropriately. There are a myriad of augmentative behavioral interventions that can be employed to do this. Examples of these interventions would be:

  • social stories
  • activity schedules
  • visual rules
  • signs / charts
  • peer and adult modeling
  • reinforcement for safe and appropriate behavior
  • consistent consequences for unsafe or inappropriate behavior

Once the individual can demonstrate safety, good judgment, competence and understanding of what is expected, many of the environmental modifications will be able to be faded out over time. Introducing the home modifications and intervention techniques mentioned above will not only help keep your child and your family out of harms way, they will also help ensure that your child is ready and able to learn and, ultimately, better able to reach his or her full potential.

Resources Most of the items and products (safety knobs for appliances, locks, etc.) mentioned above, can be purchased from hardware stores, department stores, and children's stores in your community. You can also contact your fire department to see whether they have locator stickers or other materials to foster fire safety.

 
 


 

Sibling Issues

Raising a child with autism places some extraordinary demands on parents as individuals and on the family as a whole. Prime among these demands is the lack of enough hours in the day to do all one wishes. The time involved in meeting the needs of a family member with autism may leave parents with little time for their other children.

Many parents indicate that even as they do all they can for their child with autism, they are always struggling with how best to respond to the needs of the family as a whole. They say that although their own life as an individual may be put "on hold" and a couple may share an understanding of the need to make sacrifices on behalf of their child with autism, few parents are willing to make that same demand of other children in the family. As a result, there is a continual tension between the needs of the child with autism and the other children.

This section offers suggestions to parents about ways to help the other children in the family cope gracefully and effectively with the experience of having a brother or sister with autism. Research indicates that the majority of brothers and sisters of children with autism cope well with their experiences. That does not mean, however, that they do not encounter special challenges in learning how to deal with a sibling who has autism or a related disorder.

There are special demands on siblings, and learning how to manage these demands will make their childhood easier and will teach them skills that will make them more effective and resilient adults. The most important teachers of these coping skills are a child's mother and father. The gifts you give to your youngsters in childhood will serve them immediately, and in all the years ahead.

Many of the suggestions provided here are things that parents can do within the family to help a child understand what autism is all about, to improve the interactions among the children in the family, and to ensure that brothers and sisters grow up feeling they have benefited from the love and attention we all so much need.

Explaining Autism to Children

Common sense tells us and research supports the idea that children need to understand what autism is all about. The rule of thumb: Do it early and do it often! It is important that your children know about autism and that the information you give them is appropriate for their developmental age. From early childhood, they need explanations that help them understand the behaviors that are of concern to them. For the preschool, child this may be as simple as "Rick doesn't know how to talk," while for the adolescent, it may involve a conversation about the possible genetics of autism.

The key is to remember to adjust your information to your child's age and understanding. For example, very young children are mostly concerned about unusual behaviors that may frighten or puzzle them. An older child will have concerns of a more interpersonal nature, such as how to explain autism to his or her friends. For the adolescent, these concerns may shift to the long-range needs of their sibling with autism and the role they will play in future care. Every age has its needs, and your task is to listen carefully to your child's immediate concerns.

Another key to success is to remember that children need to be told about autism again and again as they grow up. Young children may use the words they hear us use, but not understand the full meaning of those words until they are much older. Don't be mislead by a young child's vocabulary of words like "autism" or "discrete trial." That does not mean the terms have real meaning for him or her. Just as you would not expect an early conversation about the obvious physical differences between boys and girls to constitute a sufficient sex education for children five years or 10 years later, similarly, you must explain again and again, in increasingly mature terms, what autism is all about.

Helping Your Children Form a Relationship

Because of the nature of autism, it is usually difficult for a young child to form a satisfying relationship with a brother or sister who has the disorder. For example, your child's attempts to play with his/her brother are probably rebuffed by his ignoring her, fall flat because of his lack of play skills, or end abruptly because his tantrums are frightening. How many of us would keep trying to form a friendship with someone who turned her back when we spoke to her, or, even worse, seemed angry when we approached?

It is not surprising that young children may become discouraged by the reactions they encounter and seek their playmates elsewhere.

The good news is that young children can be taught simple skills that will enable them to engage their brother or sister in playful interactions. Research has shown that siblings can learn basic teaching strategies to engage their brother or sister with autism. These skills included things like making sure they had their brother's attention, giving simple instructions, and praising good play. One research study showed that videotapes made before and after the children learned these skills showed in a very touching manner that, after training, they played together more and seemed much happier than they had been prior to training.

Special Times

Along with ensuring that the child with autism is a fully integrated member of the family; it is important to remember that other children in a family need their times to be special. Families are often urged to find some regular, separate time for the children in their family who do not have autism. It may be one evening a week, a Saturday morning, or even a few minutes at bedtime each night. If your child with autism has a home-based program or exhibits serious management problems, you will have neither the stamina nor the energy to give your other child exactly the same amount of attention. It is not necessary that everything in childhood be exactly the same. What is important is the opportunity to feel special to your parents and to feel that there is an overall atmosphere of equity in your home.

Not Everything as a Family

There are activities that should be shared by all the family and times that should not. Along with having regularly scheduled special times for each child, it is also important to remember that there will be some events when one child in the family deserves to be the focus of everyone's attention. Children have told us that it is sometimes frustrating to have to do everything with their brother or sister with autism. In fact, there may be times when it may not be fair to insist that he or she be included. For example, if your child with autism cannot sit still for a school play, then it may be better if he or she stayed home when your other child performs.

Adult Siblings

Being the brother or sister of a person with autism does not end with childhood. These are lifetime relationships that mature and grow over the years. The concerns of an adult sibling will be different from those of children. For the young adult, questions may focus on their own plans to have children and concern about whether there is a genetic component in the autism of their sibling. In some cases, young adults may also feel a keen sense of responsibility for their brother or sister with autism that makes it difficult for them to leave home and begin an independent life.

It is important that parents discuss with their adult children the expectations they have in caring for the person with autism, as well as reassuring them about the legitimacy of their assuming their own role as adults.

The questions of the role of the adult child become most acute as parents age and begin to anticipate the point when they will no longer have the stamina to continue to care for their child with autism. If the person with autism is not already living outside of the home, this may be a time when placement in a group home or supervised apartment become important. In those families where such care is necessary, adult children and parents must together address the question of who will assume guardianship for the person with autism when the parents die.

It is not easy for any of us to talk about our own death, and both you and your child may shy away from the conversation. Nonetheless, your adult children need to understand the financial plans you have made, the care arrangements in place, and your own expectations for them. Having these difficult conversations will ultimately be a gift to your adult children who will know that they can honor your wishes.

Sibling Groups and Other Resources

A problem frequently reported to clinicians by siblings is a sense of isolation. An ideal means of combating this isolation is to help the sibling connect with other siblings of children with autism. Peer support groups for siblings of children with autism and related disorders are becoming more available.

The Sibling Support Project of The Arc of the United States, based in Seattle, Washington, is one example. They offer a range of information on siblings of children with disabilities, including: reading lists for children and adults, information on local sibling group meetings, information on facilitating sibling discussion groups, or online resources. Their Web site address is: http://www.siblingsupport.org/

The New Jersey Center for Outreach and Services for the Autism Community (COSAC) matches siblings with pen pals around the country as well as internationally. Online resources are also available. For example, a chat room for siblings of children with disabilities, called "SibChat," meets periodically. A final resource to consider for siblings, particularly for those who are experiencing difficulty in adapting to the disability, would be individual counseling.

Most Siblings Cope Very Well

While growing up as the sibling of someone with autism can certainly be trying, most siblings cope very well. It is important to remember that while having a sibling with autism or any other disability is a challenge to a child, it is not an insurmountable obstacle. Most children handle the challenge effectively, and many of them respond with love, grace and humor far beyond their years.


 

Religion and Autism

Below are two articles originally published in the ASA's member publication, the Autism Advocate, on the topic of autism and religion. The articles provided here relate specifically to the Christian and Jewish faiths, but many of the tips can and should be applied to all religions.

The Christian Perspective

By Terri Connolly

The church experience is often one of generational tradition for many families. Other families recognize their need for a place of spiritual refuge and nurturing for the first time in their lives when they have children or at other trying times.

Christ's example of "agape," or unconditional love, is paramount to our understanding of the role of acceptance in the church. Too many parents and siblings, as well as the individual with autism, are asked to leave or feel so uncomfortable that they lose this most precious part of their lives, and at a time when they are most in need.

The behaviors associated with autism often present challenges for the family church experience, yet I often find myself wondering: "If not church, then where can an individual be accepted exactly as they are with unlimited love and inclusion?" Families of faith need to find a church where all of its members can be nurtured. By integrating the member with autism as a regular member of the church, with resource help and community-wide education, the church becomes accessible to the whole family, and the family, in turn, is strengthened through shared faith experiences.

Tips to Supporting Inclusion

Initiate contact. lnitially, parents may want to contact the pastor or Sunday School teacher to introduce themselves and prepare them to provide a successful experience for everyone. Include information about educational goals and discuss communication methods.

Discuss your expectations. When attending a worship service, it would be wise to discuss with the worship leader what they might expect. In return, the worship leader should offer supports to the family, such as someone to stay with siblings should the parents need to leave during the worship service or to accompany the individual with autism to another comfortable place should he or she become distressed.

Be prepared. Most experienced parents know that all children and many adults become fidgety during church. Being prepared with a quiet object of concentration, such as a rubber band, pictures, books, or an object of visual focus, can be very helpful, particularly if it has religious significance to enhance the worship experience in a different way. Items that provide comfort and security at home might be made available at church.

Get acclimated. Since it is thought that many individuals with autism experience things holistically, attention should be given to the sights, sounds, and even smells within the sanctuary or classroom. A visit to the sanctuary and classroom in a church when they are empty might give the individual an opportunity to explore in ways that might be inappropriate when crowded. With special permission, one might also explore the organ or piano to prepare the individual for the sudden and sometimes loud sounds during worship.

Teach by example. The worship leader may comfortably acknowledge any distracting behavior with a simple, sincere acknowledgment. "So glad you could join our worship today, Tom," after which the worship leader continues as if Tom's participation is perfectly natural. The worship leader's acceptance is very important. Sensitivity and joint strategy planning are critical.

Develop peer partners. In order to help relationships and friendships blossom, peer partners who rotate responsibility for assistance can help to create a wide base of support for the individual while fostering a truer atmosphere of inclusion.

Help the individual feel welcome. Several adults or children should assume quiet lay leadership roles by greeting the individual with eye contact, a "Hi, Bryan," a high-five, a popular stylized handshake, or a pat on the shoulder. It is often this simple, yet critical initiation that communicates the gospel message. A kind of "underground" effort of greeting creates a wonderful atmosphere of acceptance.

Stand firm. Finally, the family should stand firm in their belief that we all have a place in the worship experience. When one member is missing, the experience of all is diminished.

Younger Children and Sunday School

In being part of the community of faith, all individuals need the opportunity for active participation. Doing what others do promotes a feeling of inclusion. For children in Sunday School, the following ideas have been successful:

Use the Bible. Encourage the child to hold the Bible open to the appropriate page. Use a bookmark or guide the child's hand to follow as others read aloud.

Ensure participation. Pass a ball or talking stick while sharing or learning parts of a memory verse. The child with autism is assured then a chance to participate with the help of another to communicate the message. A notebook from home could tell about experiences and add prayer requests, if necessary.

Rotate buddies. Remember to encourage multiple friendships and acquaintances by rotating peer escorts and buddies.

Use visual cues. Use extra visual cues, such as pictures, during a story at any age level. Quietly reword a story as needed so that it is understandable to the individual.

Encourage imitation. Encourage, but do not force, imitation of body postures, such as bowing one's head and clasping hands for prayer, standing to sing, and looking toward the person who is speaking. This will certainly vary with the individual, but it helps to create an attitude of prayer and participation.

Older Youth and Participation

Older youth and adults with autism can participate partially or fully in different ways, just as most youth and adults without autism do. Encouraging participation and service to others is important for the individual as well as the community.

The following suggestions are based on the approach that was used with a particular individual with autism:

  • Greet people with a smile, and hand out service bulletins.
  • Gather up the bulletins and papers left in the pews after the service, restoring order to the sanctuary.
  • Carry the offering plates to the safe following service.Deliver crackers and juice to the little ones in the preschool classes.
  • Collect and deliver Sunday School attendance records to the attendance clerk.
  • Assist in the delivery of cards or food to homebound individuals.
  • Participate with deacons in the packaging and delivery of food and toys to the needy during the holidays.

Christmas

Christians celebrate the birth of Christ with much pageantry, tradition, and cultural ritual. Augmenting the typical worship service adds to the richness of meaning, while making the celebration more personal.

- Talk about the spiritual aspects of the Christmas time in normal daily conversations. Describe the upcoming ritual and pageantry through simpler methods, such as through pictures, role-playing, and storytelling.

- Bring a special item that might represent some element of the holiday celebration that can be held during worship. It may be a piece of textured "swaddling cloth," a shiny star, nativity figures, or cinnamon sticks. One symbolic item brought forth at the right moment may become part of the holistic experience of celebration.

- During the service, follow along in the bulletin and prepare the individual for the moment any loud, dramatic music is to occur. Covering the individual's ears and gradually uncovering them may work. However, be prepared if does not; what is musical to one person may be cacophonous to another.

Giving Gifts - A Unique Approach

One church that I know has a wonderful celebration in early December where they gather to recognize the natural talents and spiritual gifts of its members -a bit of a twist on the gift-giving theme. From young to old, with talents that range from the artistic and musical to gifts of compassion and hospitality, many are re recognized and encouraged. It would be a wonderful tradition for any church to duplicate.

As for the individual with autism, I know of one individual who has amazing attention to visual detail, which could be displayed with examples of his or her favorite pictures. I know of another person who has the warmest smile I have ever seen. This friend also demonstrates amazing altruism, and would make a wonderful greeter.

Community Responsibility

Introduce the concept that the responsibility for every member of the congregation is a corporate, shared responsibility. This is a true fellowship. The participating and inclusion of the individuals with autism should not rest on the shoulders of one or even a few volunteers who are "trained" or ''assigned." Children and youth will need guidance to facilitate inclusion, as will many adults. Gradually, the focus of special assistance should fade as everyone accepts shared responsibility.

It takes effort and intention to help a person with autism discover his or her gifts. But in doing this exercise, we all would be challenged to focus on what the individual can do. By providing for inclusion of one individual, we meet the needs of each individual in the family by allowing their full participation in a faith community.

Terry Connolly is the mother of five children and an active member of the Highland Baptist Church in Louisville, KY. She has a Master's degree in Special Education and provides consultation and training in early childhood development.

The Jewish Perspective

By Joshua Weinstein

Before Passover, my other children enthusiastically presented me with the projects they had made in Yeshiva (Hebrew school). My heart sank when my son who has autism and attends a public school brought me his book bag, which I opened only to find the Easter egg he had painted in class. My son knows how to say the "Shema" prayer, but can also tell me stories about Santa and the Reindeer.

We have accepted that God has chosen for us to have a child with autism. When he became of school age and we sought to provide him with Jewish education, we were extremely disheartened to learn that not a single school program existed that would serve the needs of Jewish children with autism. Doesn't each and every Jewish child deserve the opportunity to receive a Jewish education to the best of their individual abilities?

-Excerpt of a letter from a parent to the Shema Kolainu School

This was my first introduction to the pain and feelings of a Jewish parent on her inability to send her child to a school of her choice that would help keep the family identity. There were no Jewish schools using ABA (Applied Behavior Analysis, an intensive behavioral intervention technique) for children with autism anywhere in the United States.

Since I founded Shema Kolainu, the first Jewish school using ABA on a one-to-one basis for children with autism in the US in 1988, we have been flooded with phone calls from heartsick parents on a daily basis. Although not a religious school, Shema Kolainu fulfills the need to learn about Jewish culture and heritage as well as focus on the bilingual needs of its students. Our programs and services are designed to accommodate a broad range of functional levels and varying degrees of disabilities. Students are taught about Jewish holidays through music and arts and crafts, to give tzedakah (charity) at circle time, to say and read the Aleph Beth (alphabet), and are taken to a matzo bakery to bake matzo's before Passover, to name a few.

The official name of our school is Shema Kolainu, which means Hear Our Voices. Hearing the voice of the child and the family means assisting the child to reach his or her potential both in an academic setting as well as a community setting. It is not enough for a child to achieve in the classroom and then not have the skills needed to be successfully integrated into their community and partake of his or her own culture and heritage. This is extremely important and beneficial for the individual with autism, the family, and the community at large.

Rituals and Individuals with Autism

Children who have autism spectrum disorders benefit greatly from consistency. The Jewish religion has practices such as daily prayer and weekly ceremonies in a synagogue. One mother told me of how her 16-year-old daughter who has autism attends synagogue each week, uses a prayer book, and even answers " AMEN" along with the congregation. A local synagogue gives a young person with autism the honor of collecting the prayer books after services.

Below are other examples of activities on which children with autism maybe encouraged to participate:

  • opening and closing the ark before the Torah (Jewish scripture) is read
  • helping the reader turn page numbers
  • assisting in preparing and setting up the kiddush (Sabbath reception)
  • helping to put away the prayer shawls after services

Familiarity with these practices from an early age promotes greater inclusion into the community as adults and helps some children to better understand their cultural and religious practices.

Special Ceremonies

Ceremonies can be a wonderful and meaningful experience for both the Child and his or her family. When a Jewish child turns 12 or 13 years old, he or she under- goes a ceremony called a Bar Mitzvah (boys) or Bat Mitzvah (girls), which symbolizes entrance into the realm of adulthood and the observance of mitzvahs (positive deeds).

A child with autism, depending on his or her functioning level, can participate in a variety of ways:

  • some may be called to read from the Torah
  • others may recite a passage from a prayer book
  • still others may recite a Bar Mitzvah speech

One family chose to make a Bar Mitzvah for their son with autism. They invited family and people who had made a difference in their son's life over the years. The mother says emphatically that this was the best decision she has ever made. Her son enjoyed the ceremony and reception, and the family felt comforted to know that they were surrounded by people who love and support them. Their son's favorite activity is to look through his Bar Mitzvah album and watch himself on the video.

Holidays

The holidays can be a stressful time for a person with autism because it is a breach in their daily routine. If a child is educated about the holidays before they arrive, he or she will be more comfortable and feel at ease. This, in turn, will alleviate much stress from the family.

It is important, therefore, to remember to apply the techniques used to involve the individual with autism in daily activities to these special activities. The individual with autism may be asked to participate at some level in many rituals or ceremonies, such as:

  • the weekly Sabbath festivities in the home
  • the Sabbath festivities at the synagogue
  • the Passover Seder
  • Chanukah candle lighting

All of these activities create a bonding between parent and child and the community at large.

Judaism and Special Children

Judaism has strong traditions regarding special children. It is said that the Chazan Ish, a great Rabbi, always stood up when a special child entered the room because he said that their souls are lofty and pure.

Even so, a local synagogue may need some guidance and sensitization to the needs of its special congregants. If there are issues that arise concerning a person with autism or other special needs, it is a good idea to set up a private appointment with the rabbi.

Issues that can arise may include a child's disruptiveness during services, inclusion into youth group activities, and fostering greater understanding and sensitivities from members of the congregation toward the population with autism.

Inclusion of people with autism and other disabilities into our community and places of worship is beneficial to us all. We can all learn a tremendous amount from them about patience, perseverance, dedication and sincerity.

When we introduce an individual with autism into a religious community and help them relate to the holidays, customs and celebrations become more meaningful to everyone. This, in turn, helps those in the community understand the child better as he or she performs certain rituals together. This brings parents and siblings closer to their child with autism and benefits both the family and everyone close to them.

It may sound cliche, but the following statement is both apt and true: "Families that pray together, stay together."

Life After High School

One of the most challenging times for individuals with autism and their families is when they must transition from the security of federally-mandated services through the public school to the uncertainty of adult services. Questions about post-secondary education, vocational training and employment must be addressed. While entitlement to public education ends at 18, the IDEA requires that transition planning begin at 16, becoming a formal part of the student's IEP. Transition planning should involve the student, parents and members of the IEP team who work together to help the individual make decisions about his/her path.

Transition Planning

The school system can be the basis for your transition planning. A student receiving special education services in public schools has regular meetings with family and school staff to address the student's Individualized Education Program (IEP). Once a student is in high school, these meetings should begin to plan for the transition from high school to adult life. The federal law, Individuals with Disabilities Education Act (IDEA), requires that transition plans be included in a student's IEP by the time he or she is 16. IDEA defines transition services as a coordinated set of activities for a student that promotes movement from school to post-school activities, including:

  • post-secondary education
  • vocational training
  • integrated employment (including supported employment)
  • continuing and adult education
  • adult services
  • independent living, and
  • community participation.

The coordinated set of activities must be based on the individual student's needs, taking into account the student's preferences and interests; and include needed activities in the areas of:

  • instruction
  • community experiences
  • the development of employment and other post-school adult living objectives, and 
  • acquisition of daily living skills and function vocational evaluation.

Some states require transition planning to begin at an age younger than 16. Check with your state department of education to confirm the age your state requires transition planning and services to begin. It is important that families and schools start planning early to ease the transition for the person with autism and increase success and independence in adult life.

Individualized Transition Plan

A key term used when developing an individual's transition services is Individualized Transition Plan or ITP. This may be written as a specific area within the IEP or as a separate document that is also agreed upon by school officials and the parents. An article in Focus, a newsletter of the Autism Society of Northwest Ohio, "Transition Planning From School To Work" suggests four components of a transition plan:

  1. The plan, including goals and services, must be based on the individual needs, preferences, and skills of the person with autism
  2. Transition planning should be oriented to life after high school, not limited to what will be accomplished before leaving school
  3. There should be a master plan which includes long range goals and a coordinated set of activities for each
  4. The services provided should promote positive movement towards a life after school

Interagency collaboration is an important part of a student's transition IEP. A school system may work with agencies such as the local Department of Vocational Rehabilitation (VR), Social Security Administration (SSA), or independent and supported living centers. These agencies may provide training or direct services to assist the school with a student's transition. Parents should strongly encourage interagency collaboration as part of the IEP.

Thinking about Transition

When thinking about transition from high school, sometimes it is helpful to start the process with a list of questions to act as a springboard for discussion. Below we have provided such a list composed by a mother whose son has autism (Autism Advocate, March-April 1996, p. 16). Some parents use similar questions when preparing for an IEP meeting. Other families like to hold family meetings with siblings and the individual with autism so that they can all share in the planning:

  • What does your child like to do?
  • What can your child do?
  • What does your child need to explore?
  • What does your child need to learn to reach his or her goals?
  • What about college (four years, community), vocational education, or adult education?
  • How about getting a job (competitive or supportive)?
  • Where can your child go to find employment and training services?
  • What transportation will your child use?
  • Where will your child live?
  • How will your child make ends meet?
  • Where will your child get health insurance?

Many people think of adulthood in terms of getting a job and living in a particular area, but having friends and a sense of belonging in a community are also important. To address these areas, we have added a few additional questions:

  • What about friendship? Are supports needed to encourage friendship?
  • Do people in the community know your son or daughter?
  • Are supports needed to structure time for recreation? Exercise?
  • Does your child have any special interests that others may share as a hobby?
  • Can you explore avenues for socializing such as religious affiliation or volunteer work?

It is also important that the transition process involves taking action. After identifying areas of interests and setting goals, one must take some active steps to meet those goals. For example, a student with autism with particularly sharp computer skills is dismissed from school early a few days a week to work with an aide at a data processing office. This position was acquired through the vocation rehabilitation office, and they continue to provide needed support. Before beginning this job, the student was taught appropriate office social skills and important office procedures such as using a time clock.

Another student who prefers to be outdoors is more suited to work with a community clean-up project than in an office. Again, this emphasizes the need to develop a plan tailored to each individual's skills and preferences. Many professionals and families believe that three or four different experiences can be helpful in assessing a student's desires and capabilities while he is still in high school. The bottom line for all students is to prepare them for their lives after high school, whether that involves employment or further education.

The National Information Center for Children and Youth with Disabilities has a Transition Summary series that helps families and students with disabilities focus on taking definite steps toward a successful transition. We have adapted a portion of NICHCY Transition Summary, No. 7, September, 1991, below.

In Junior High School: Start Transition Planning

  • Become involved in career exploration activities.
  • Visit with a school counselor to talk about interests and capabilities.
  • Participate in vocational assessment activities.
  • Use information about interests and capabilities to make preliminary decisions about possible careers: academic versus vocational or a combination.
  • Make use of books, career fairs, and people in the community to find out more about careers of interest.

In High School: Define Career/Vocational Goals

  • Work with school staff, family, and people and agencies in the community to define and refine transition plan. Make sure that the IEP includes transition plans.
  • Identify and take high school courses that are required for entry into college, trade schools, or careers of interest.
  • Identify and take vocational programs offered in high school, if a vocational career is of interest.
  • Become involved in early work experiences, such as job try-outs, summer jobs, volunteering, or part-time work.
  • Re-assess interests and capabilities, based on real world or school experiences. Is the career field still of interest? If not, re-define goals.
  • Participate in on-going vocational assessment and identify gaps of knowledge or skills that need to be addressed. Address these gaps.

If you have decided to pursue post-secondary education and training prior to employment, consider these suggestions:

  • Identify post-secondary institutions (colleges, vocational programs in the community, trade schools, etc.) that offer training in career of interest. Write or call for catalogues, financial aid information, and application. Visit the institution.
  • Identify what accommodations would be helpful to address the individual's special needs. Find out if the educational institution makes, or can make, these accommodations.
  • Identify and take any special tests (e.g., PSAT, SAT, NMSQT) necessary for entry into post-secondary institutions of interest.
  • In this is the individual's last year of secondary school, contact VR and/or SSA to determine eligibility for services or benefits.

After High School: Obtain Your Goals

  • If eligible for VR services, work with a VR counselor to identify and pursue additional training or to secure employment (including supported employment) in your field of interest.
  • If eligible for SSA, find our how work incentives apply to the individual.
  • Contact agencies that can be of help: state employment offices, social services offices, mental health departments, disability-specific organizations. What can these agencies offer?
  • Also find out about special projects in your vicinity (e.g., Projects with Industry, Project READY, supported employment demonstration models, etc.). Determine eligibility to participate in these training or employment programs.
  • Continue to work through the plan. Follow through on decisions to attend post-secondary institutions or obtain employment.

The transition process is a complex one with many decisions to be made. A student's options after high school can be increased by a good transition plan during school. When a student is given the opportunity to experience different settings and develop work appropriate skills, he/she will be able to choose the best path. A good transition plan allows parents, school officials, and agency personnel to work together to make these opportunities available.

 

 

 
 

Planning for the Future

A 1996 survey conducted by the ICR Survey Research Group showed that at least one individual in 20 percent of U.S. households is a caregiver - either part-time or full-time. Planning for the future of people with disabilities is something they and their families/caregivers must tackle - and the sooner the better.

Whether the person with special needs is 4 or 40 years old, it is imperative that families create a plan. Despite the growing number of persons with developmental disabilities in this country, less than 20 percent of families have done any planning.

Whether people with disabilities function entirely on their own or need assistance, a written directive can provide instruction for daily care, as well as unexpected and sudden contingencies.

  • How would these individuals like to be bathed and dressed?
  • What music do they enjoy, and when do they want to listen?
  • Do they have special dietary needs and requirements?
  • Who monitors their medication?
  • What activities do they enjoy?
  • How can they live with dignity, quality, self-esteem, and security?

Family members/caregivers should discuss information regarding the needs and desires of people with disabilities and compose a directive document addressing the lifestyle, financial, legal, and government-benefit issues.

Most people realize they need to plan and want to do something, but they fail for a variety of reasons. Some believe the task is overwhelming - they don't know where to find qualified professionals who understand their needs and how to resolve their concerns. And, too, the cost of professional services can be prohibitive. Families are also concerned with privacy issues. How do they overcome these obstacles and begin planning for the future?

As families begin their plan, they should first identify the people that can assist in the planning process. This should include, when possible, the family, the person with a disability, an attorney, a financial advisor, caseworkers, medical practitioners, teachers, therapists, anyone involved in providing services, and a lifetime assistance planner to act as a "team" advisor to make sure that all parts of the plan are coordinated and complete.

The planning process that financial planner Barton Stevens, ChLAP, recommends addresses four key issues affecting the life of the person with special needs. They are:

  1. Lifestyle
  2. Legal
  3. Financial
  4. Government Benefits

Lifestyle. Lifestyle planning is where the family records what they want for the future of their loved one. This information is recorded in a document called the "Letter of Intent." Although not a legal document, it is as important as a Will and a Special Needs Trust. Lifestyle issues require decisions regarding where the person will live, continued education programs, employment, social activities, religious affiliation, medical care, behavior management, advocacy and/or guardianship, trustees, and final arrangements.

In addition, detailed instructions are provided for assisting the person with the typical activities of daily living such as bathing, dressing, feeding, and toileting. Perhaps the person has a special way of communicating that only the immediate family knows and understands. It is important that this information be included. Rather than write hundreds or thousands of words describing how to do these things, it is recommended that families videotape them performing the activities of daily living, communicating, and in different social settings such as the home, school, a day care center, and so on.

Imagine how much easier and less traumatic it will be for the person with special needs and the care providers if they have detailed instructions immediately available to them rather than having to figure things out on their own. What could take weeks or months to adjust to could be shortened to a few days. The ultimate goal is to make the transition from parental care to independent living, residency in a group home, or moving in with other family members as easy as possible, bearing in mind the comfort and security of the person.

Legal. Legal planning provides for the family to state their wishes as to the distribution of their assets and appointing executors to settle their estate. In conjunction with this, a trust is usually executed to provide professional money management, trustees, guardians, maintain government benefits, and protect the assets left for the individual.

The "Irrevocable" Special Needs Trust is the most commonly used document to provide, supplemental funds for the exclusive benefit of the person with a disability. The assets are not in the name of the person, so they will not cause the loss of SSI (Supplemental Security Income) health care benefits. This Trust has proven invaluable to families regardless of the size of their estate or the amount of assets they are leaving.

Financial. Financial planning is used to determine the supplemental needs of the person. First, a monthly budget is established based on today's needs while projecting for the future. Then, by using a reasonable rate of return on principal, the family identifies how much money is needed to fund the trust. In addition, the life expectancy of the person must be considered and then the need projected into the future using an inflation factor.

Once this is done, the family must now identify the resources to be used to fund the trust. They may include stocks, mutual funds, IRAs, 401(k)s, real estate, your home, life insurance, etc. Professional management for investing the assets may be done by the Trustee, or the Trustee may hire advisors.

Government Benefits. Government entitlements play a key role in the lives of many persons with special needs by providing cash and health care benefits under SSI (Supplemental Security Income), SSDI (Social Security Disability Insurance), Medicaid, and Medicare. A basic understanding of federal and state entitlement programs is essential in order to be sure that the person gets all that they are qualified to receive, and that assets received from family members through gifts, inheritance, and litigation do not result in the disqualification and termination of government benefits or the government claiming reimbursement for benefits provided from assets received by the person.

It should be clear that each of these issues is interrelated and requires they be coordinated in the planning process. Those persons who provide advice in one particular area should be made cognizant of what others are doing. This emphasizes the importance of an organized plan.

The result of a comprehensive plan should be that it: provides lifetime supervision and care; maintains government benefits; provides supplementary funds to help ensure a comfortable lifestyle; provides management of funds; provides dignified final arrangements; and avoids family conflict.

The 10-Step Process

In order to prepare a plan in a simple step-by-step procedure without feeling overwhelmed by the process, Barton Stevens recommends that families commit to know the 10 life planning steps. If these steps are followed, the family will create a directive that addresses the lifestyle and care needs of the person.

There are 10 steps you follow to help you create a directive that addresses the lifestyles and care needs of people with disabilities. The information recorded depends on the type and severity of the disability.

  1. Prepare a life plan. Decide what you want regarding residential needs, employment, education, social activities, medical and dental care, religion, and final arrangements.
  2. Write informational and instructional directives. Put your hopes and desires in a written document. Include information regarding care providers and assistants, attending physicians, dentists, medicine, functioning abilities, types of activities enjoyed, daily living skills, and rights and values. Make a videotape during daily activities such as bathing, dressing, eating, and recreation. A commentary accompanying the video is also useful.
  3. Decide on a type of supervision. Guardianship and conservatorship are legal appointments requiring court-ordered mandates. Individuals or institutions manage the estate of people judged incapable (not necessarily incompetent) of caring for their own affairs. Guardians and conservators are also responsible for the care and decisions made on behalf of people who are unable to care for themselves. In some states, guardians assist people and conservators manage the estate of individuals. Many parents who have kids with disabilities do not realize that when their children reach 18, adults may no longer have legal authority. Choose conservators/guardians for today and tomorrow. Select capable individuals in the even you become unable to make decisions in the future.
  4. Determine the cost. Make a list of current and anticipated monthly expenses. When you have established this amount, decide on a reasonable return on your investments, and calculate how much will be needed to provide enough funds to support his or her lifestyle. Don't forget to include disability income, Social Security, etc.
  5. Find resources. Possible resources to fund your plan include government benefits, family assistance, inheritances, savings, life insurance, and investments.
  6. Prepare legal documents. Choose a qualified attorney to assist in preparing wills, trusts, power of attorney, guardianship, living will, etc.
  7. Consider a "Special Needs Trust."  A Special Needs Trust holds assets for the benefit of people with disabilities and uses the income to provide for their supplemental needs. If drafted properly, assets are not considered income, so people do not jeopardize their Supplemental Security Income or Medicaid. And, too, they don't have to repay Medicaid for services received. Appoint a trustee and successor trustees (individuals or corporate entities, such as banks).
  8. Use a life-plan binder. Place all documents in a single binder and notify caregivers/family where they can find it.
  9. Hold a meeting. Give copies of relevant documents and instructions to family/caregivers. Review everyone's responsibilities.
  10. Review your plan. At least once a year, review and update the plan. Modify legal documents as necessary.

Once you have decided to prepare a plan, find someone to help you or hire a professional planner. Referral sources are available through governmental agencies, organizations, or local support groups. "'Who will care when you are no longer there?" is an overwhelming concern people with disabilities and their families must address. Solutions are available. The next step is up to you.

 
The Criminal Justice System and Autism  

People with autism do, on rare occasions, break the law. However, the consequences for these actions should not result in incarceration, but rather, an understanding of their behavior and a review of their service needs to take place in order to ensure appropriate treatment and education to control future "malfeasance."

In a review of the demographics of individuals with a developmental disability executed in the United States since 1976, of the 31 defendants that were executed no one had a diagnosis of autism. (Perske, et al, 1997).

Why is it that when we know of cases where individuals with autism and related syndromes and conditions have been implicated in the death of others, i.e., "committed murder,” they have not been a defendant in a homicide criminal action case? There is a singular answer to this question the majority of individuals with autism do not have premeditated intentions to harm others and do not understand the seriousness of their actions and therefore should be tried accordingly.

The use of the term "accident," as it pertains to criminal activity of individuals with autism, is an apropos term. Accident connotes an unfortunate circumstance with no intended malfeasance on the part of the perpetrator towards the accident victim. With autism it is generally agreed that the majority of actions on the part of the individual that may be viewed as criminal in nature may not be intended to purposefully break the law or harm another individual.

Additionally, when individuals with autism are detained by police or otherwise confronted by the criminal justice system it is often because their actions are misunderstood, e.g., may appear to be a danger to themselves or others. However, a major culpable factor, frequently, is the lack of services for the individual with autism.

The severe impairment in social relations severely hinders individuals with autism, incapacitating them from understanding the impact of their behavior relative to social values and mores, and, in turn, the criminal justice system. To emphasize this fact the following true stories are offered:

  • Adam is a runner. At 3-1/2, he could let himself out of the house, and often did. His favorite place to roam was an area behind his house. One day his parents found him missing from the house and went out the back door to look for him. After an unsuccessful search, they went to the area in front of their house. There was Adam, walking along the yellow centerline of the street. Concerned neighbors had called the police and the parents arrived at the same time as the local police officers. Retrieving the child from the street as he screamed, "Want yellow, want yellow?" the police officers began to question the parents in a way that suggested they felt the parents were neglectful and perhaps abusive. Adam has autism. (Githens, 1997)
  • Ben loved the sound of falling water. As a preschooler he had gone to the mall one day with his parents. He ran off and made his way to the fountain in the middle of the mall. When he was finally located, with the help of mall security personnel, Ben refused to recognize either of his parents. The security personnel very reluctantly released Ben to his parents, since they had no way to verify that the man and woman were, indeed, Ben's parents. Ben has autism. (Githens, 1997)
  • Charlie was 22 and living in a group home. Because of his abilities and personality, he had been allowed to take a bus and go shopping on his own. Once he reached the store he became disoriented and began to moan and flap his arms with his elbows tucked in at his waist. The store clerks became concerned. A clerk tried to talk with Charlie, but he began to back away and moan louder. One of the clerks wondered if this was someone having a strange drug reaction and started to call the police. Just then a staff member from the group home walked into the store, spotted Charlie, and intervened. Charlie was removed from the store and driven back to the group home. The police were not needed. Charlie has autism. (Githens, 1997)
  • David is a fourteen-year-old adolescent, but has the interests of a much younger child. His favorite friends are some of the young girls on his block. He likes to jump rope with them, ride bicycles with them, and run with them when they are playing tag. One day David could not find his friends, so he began looking in the windows of his neighbors' homes, trying to find out where they were. One neighbor saw David peeking into the window of the bedroom of one of his little girlfriends. The neighbor called the police; David was arrested as a Peeping Tom and potential sexual predator. David has autism. (Holmes, 1998)

The most likely areas in which an autistic person
may encounter problems with the law are:

  • Bizarre behavior - such as severe tantrums, head-banging, and hand-flapping; these behaviors are sometimes misperceived by others as due to the influence of drugs or alcohol
  • Inappropriate social boundaries - such as approaching and/or touching strangers
  • Violating social norms - such as walking in the street, stealing, trespassing, stalking
  • Property damage - such as starting fires, throwing objects
Autism Society of America Chapters
ASA chapters are your best source of information and support. Most chapters are volunteer-led by parents, care providers, and other professionals. ASA has chapters in nearly every state reaching out to individuals with autism and their families with information, support, and encouragement. To find a chapter near you, click here.
 

AutismSource
The AutismSource database features thousands of resources with listings in all 50 states. ASA continues to add programs and users can recommend resources to be added by following the prompts on the site. Listings include physicians, psychologists, speech, occupational and behavioral therapists, schools, camps, training programs, government agencies, and much more. To access AutismSource, click here.

Access Medicaid Waiver Programs
Under this program, a parent's income is waived when determining eligibility for Medicaid. Participants in this program receive Medicaid and Waiver services. Again, waiver services available vary between states. In addition, not all states provide Medicaid Waiver Services. In the State of New York, there is a high demand for waiver respite and residential habilitation. Residential Habilitation consists of in-home programming for individuals. Contact the Developmental Disabilities Council in your state to obtain additional information or the Health Care Financing Administration (HCFA).

These programs are geared towards providing services to families who have a child living at home. It is through these programs that families can gain skills, maintain structure for their child and get a break from caregiving. Funding sources for these services vary by state. In addition, some states may not offer such services. Contact the Developmental Disabilities Council in your state to find out more information regarding these services.

Online Bookstore
Visit our online bookstore where we highlight books recommended by our members and professionals. Please visit often as the selection changes often.

Career Center
Designed in partnership with Job Target, our career center is here to assist members of the autism community in seeking employment opportunities and prospective employers/recruiters seeking qualified candidates to fill vacant positions.

Apply For Financial Resources/Benefits
Federal Old Age, Survivors and Disability Insurance Benefits - a Federal Social Security cash benefit available to someone who has contributed to the social security fund and becomes disabled. Spouses and dependent children are also eligible for benefits if the primary beneficiary becomes disabled, retires or dies. Recipients of this benefit also receive Medicare. Contact your local Social Security Offices for more information.

Supplemental Security Income (SSI)
A Federal Social Security cash benefit available to a disabled individual who warrants financial need. A parent's income is used to determine eligibility for all applicants under the age of 18. Recipients of this benefit also receive Medicaid. Contact your local Social Security Office to apply.

Special Needs Trust/Supplemental Needs Trust
A trust where the resources are not considered in determining eligibility for government benefits (551, Medicaid). Money in this trust can be used to supplement or augment services that Medicaid does not cover (e.g. vacations or extra therapies). Families should contact an attorney with experience in estate planning and developmental disabilities to set up such a trust.

Family Reimbursement Programs
Reimbursement for services not covered under other means such as Medicaid. Services reimbursed may include respite, camps, educational materials, therapies, and more. Contact the Developmental Disabilities Council in your state for additional information.

Access A Service Coordinator/ Case Manager
Families should begin their quest for resources by obtaining a Service Coordinator, otherwise known as a Case Manager. This is an individual who assesses a family's needs and links them to available services and resources. They can help with filling out paperwork and making phone calls to agencies. Sources of funding for this service can come through Medicaid as well as Early Intervention and State Developmental Disabilities Offices.

 

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