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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 serv