Diagnosing Autism: DSM and ICD

Understanding Diagnostic Criteria for Autism

The leading diagnostic guides for autism are the Diagnostic and Statistical Manual of Mental Disorders (DSM), published in print and electronically by the American Psychiatric Association, and the International Statistical Classification of Diseases and Related Health Problems (ICD) of the World Health Organization (WHO). The ICD offers more categories under the umbrella of autism.

Both diagnostic tools are clinical, philosophical, legal, and political. Courts throughout the world use the guidelines in these manuals to determine mental fitness, for example. The Americans with Disabilities Act (ADA) and the Individuals with Disabilities Education Act (IDEA) use the DSM to define some disabilities, including autism.

The more serious the symptoms, the more likely the individual is diagnosed with classical autism. Those with severe symptoms, but able to function with minimal assistance, are often categorized as high-functioning autistic. The least extreme cases, but likely the most common, are categorized as Asperger’s Syndrome or having a pervasive developmental disorder, not otherwise specified (PDD-NOS).

Potential Medical Classifications

Stella Waterhouse (1999) developed categories of autistic disorder based on possible causes. The definitions are not in wide use, possibly because the DSM and mental health professionals tend to be focused on symptoms. The Waterhouse autism categories are:

• perceptual autism (linked to a damaged limbic system)
• perceptual Asperger syndrome (linked to frontal lobe problem)
• reactive autism (limbic system)
• reactive Asperger syndrome (frontal lobe)
• induced autism (limbic system)
• induced Asperger syndrome (frontal lobe)
• secondary autism (caused by accident or illness)

Until physical causes can be determined with confidence, symptomology will remain the primary diagnostic criteria for autism and other pervasive developmental disorders.

DSM-IV-TR Criteria for Autism

AMERICAN PSYCHIATRIC ASSOCIATION

Autism Spectrum is diagnostic criteria 299.00 in the DSM-IV Revised, 2000.

1. A total of six (or more) items from (A), (B), and (C), with at least two from (A), and one each from (B) and (C)
   
   1. qualitative impairment in social interaction, as manifested by at least two of the following:
      
      1. marked impairments in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body posture, 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 to other people)
      4. lack of social or emotional reciprocity (note: in the description, it gives the following as examples: not actively participating in simple social play or games, preferring solitary activities, or involving others in activities only as tools or “mechanical” aids )
   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 two 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

Asperger’s Syndrome

The DSM-IV does not include Asperger's Syndrome within the diagnostic matrix for autism, but both appear as developmental disorders. Diagnostic criteria for Asperger’s disorder according to DSM-IV-TR (American Psychiatric Association 2000):

1. Qualitative impairment in social interaction, as manifested by at least two of the following:
   
   1. marked impairment in the use of multiple non-verbal 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 to other people)
   4. lack of social or emotional reciprocity.
2. 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, non-functional 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.
3. The disturbance causes clinically significant impairment in social, occupational, or other important areas of functioning.
4. There is no clinically significant general delay in language (e.g. single words used by age two years, communicative phrases used by age three years.)
5. 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.
6. Criteria are not met for another specific Pervasive Developmental Disorder or Schizophrenia.

Additional AS Criteria

Characteristics of Asperger’s syndrome as listed by Wing (1981), quoted in Bowler (2007):

• More common in boys
• Normal age of onset of speech
• Impaired non-verbal communication
• Flat intonation and absent or large, clumsy gestures
• Impairment of two-way social interaction
• Repetitive activities and resistance to change
• Poor motor coordination
• Clumsy, odd gait and posture
• Circumscribed interests with good rote memory for facts on narrowly defined or unusual topics
• Bullied at school because of perceived eccentricity

The Gillberg diagnostic criteria for Asperger’s syndrome (Gillberg 1991):

1. Social impairment (extreme egocentricity) (at least two of the following):
   • difficulties interacting with peers
   • indifference to peer contacts
   • difficulties interpreting social cues
   • socially and emotionally inappropriate behavior.
2. Narrow interest (at least one of the following):
   • exclusion of other activities
   • repetitive adherence
   • more rote than meaning.
3. Compulsive need for introducing routines and interests (at least one of the following):
   • which affect the individual’s every aspect of everyday life
   • which affect others
4. Speech and language peculiarities (at least three of the following):
   • delayed speech development
   • superficially perfect expressive language
   • formal pedantic language
   • odd prosody, peculiar voice characteristics
   • impairment of comprehension including misinterpretations
     of literal/implied meanings
5. Non-verbal communication problems (at least one of the following):
   • limited use of gestures
   • clumsy/gauche body language
   • limited facial expression
   • peculiar, stiff gaze
6. Motor clumsiness:
   • poor performance in neurodevelopmental test.

The ICD-10 Criteria for Autism

WORLD HEALTH ORGANIZATION
The International Statistical Classification of Diseases and Related Health Problems, Tenth Edition, 2006
(http://www.who.int/classifications/apps/icd/icd10online/ accessed 6 December 2006)

Note: The ICD uses “International English” for spelling and grammar.

F84: Pervasive developmental disorders: A group of disorders characterized by qualitative abnormalities in reciprocal social interactions and in patterns of communication, and by a restricted, stereotyped, repetitive repertoire of interests and activities. These qualitative abnormalities are a pervasive feature of the individual's functioning in all situations.

Use additional code, if desired, to identify any associated medical condition and mental retardation.

F84.0: Childhood autism: A type of pervasive developmental disorder that is defined by: (a) the presence of abnormal or impaired development that is manifest before the age of three years, and (b) the characteristic type of abnormal functioning in all the three areas of psychopathology: reciprocal social interaction, communication, and restricted, stereotyped, repetitive behaviour. In addition to these specific diagnostic features, a range of other nonspecific problems are common, such as phobias, sleeping and eating disturbances, temper tantrums, and (self-directed) aggression.

Autistic disorder; Infantile: autism or psychosis; Kanner’s syndrome;

Excludes: autistic psychopathy ( F84.5 )

F84.1: Atypical autism: A type of pervasive developmental disorder that differs from childhood autism either in age of onset or in failing to fulfill all three sets of diagnostic criteria. This subcategory should be used when there is abnormal and impaired development that is present only after age three years, and a lack of sufficient demonstrable abnormalities in one or two of the three areas of psychopathology required for the diagnosis of autism (namely, reciprocal social interactions, communication, and restricted, stereotyped, repetitive behaviour) in spite of characteristic abnormalities in the other area(s). Atypical autism arises most often in profoundly retarded individuals and in individuals with a severe specific developmental disorder of receptive language.

Atypical childhood psychosis; Mental retardation with autistic features

Use additional code (F70-F79), if desired, to identify mental retardation.

F84.2: Rett's syndrome: A condition, so far found only in girls, in which apparently normal early development is followed by partial or complete loss of speech and of skills in locomotion and use of hands, together with deceleration in head growth, usually with an onset between seven and 24 months of age. Loss of purposive hand movements, hand-wringing stereotypes, and hyperventilation are characteristic. Social and play development are arrested but social interest tends to be maintained. Trunk ataxia and apraxia start to develop by age four years and choreoathetoid movements frequently follow. Severe mental retardation almost invariably results.

F84.3: Other childhood disintegrative disorder: A type of pervasive developmental disorder that is defined by a period of entirely normal development before the onset of the disorder, followed by a definite loss of previously acquired skills in several areas of development over the course of a few months. Typically, this is accompanied by a general loss of interest in the environment, by stereotyped, repetitive motor mannerisms, and by autistic-like abnormalities in social interaction and communication. In some cases the disorder can be shown to be due to some associated encephalopathy but the diagnosis should be made on the behavioural features.

Dementia infantilis; Disintegrative psychosis; Heller's syndrome; Symbiotic psychosis

Use additional code, if desired, to identify any associated neurological condition.

Excludes: Rett's syndrome ( F84.2 )

F84.4: Overactive disorder associated with mental retardation and stereotyped movements: An ill-defined disorder of uncertain nosological validity. The category is designed to include a group of children with severe mental retardation (IQ below 35) who show major problems in hyperactivity and in attention, as well as stereotyped behaviours. They tend not to benefit from stimulant drugs (unlike those with an IQ in the normal range) and may exhibit a severe dysphoric reaction (sometimes with psychomotor retardation) when given stimulants. In adolescence, the overactivity tends to be replaced by underactivity (a pattern that is not usual in hyperkinetic children with normal intelligence). This syndrome is also often associated with a variety of developmental delays, either specific or global. The extent to which the behavioural pattern is a function of low IQ or of organic brain damage is not known.

F84.5: Asperger's syndrome: A disorder of uncertain nosological validity, characterized by the same type of qualitative abnormalities of reciprocal social interaction that typify autism, together with a restricted, stereotyped, repetitive repertoire of interests and activities. It differs from autism primarily in the fact that there is no general delay or retardation in language or in cognitive development. This disorder is often associated with marked clumsiness. There is a strong tendency for the abnormalities to persist into adolescence and adult life. Psychotic episodes occasionally occur in early adult life.

Autistic psychopathy; Schizoid disorder of childhood

F84.8: Other pervasive developmental disorders

F84.9: Pervasive developmental disorder, unspecified (PDD-NOS, not otherwise specified)

Defining Autism: Historical Challenges

Mental Health Professionals Lack Consensus on Autism Definition

Because autism is mentioned specifically in various disabilities-related laws and regulations, public and private service providers are expected to not only know what autism is, but to make accommodations available accordingly. A pragmatic approach is likely to be supported by parents. Psychologist Alexander Durig (1996) observes that parents and clinicians working with children diagnosed as autistic are less concerned with the causes of autism than they are they best treatments.

Parents and experts are not as interested in a theoretical claim to what Autism really is, as much as they are interested in the development of treatments, therapies, and curricula that will streamline the social experience of people with Autism. But the development of such therapeutic treatments may be mired currently in controversy precisely because no one can agree on what Autistic perception in is the first place. (Durig, 1996, p. 11)

As the history of the diagnosis will illustrate, the children diagnosed with autism are not all suffering the severe disability traditionally associated with the word. The history of how “autism” evolved to mean something less debilitating demonstrates how definitions do drift and change with time.

No single diagnostic method is endorsed in this paper, but a pragmatic approach to providing services argues against using a strict definition of autism to determine appropriate accommodations. As Schiappa (2003) writes, being pragmatic does not mean scientific findings are ignored, but that we admit that adopting scientific knowledge is a values-based choice. A university requiring a psychiatric evaluation might be viewed as pragmatic, limiting legal liability while also controlling the number of students receiving accommodations for various disabilities. The history of autism diagnosis presented includes some arguments for and against accepting various definitions of disability and does reflect the biases of the author of this paper.

History

What most mental health professionals consider mild autism today was first described in an academic paper in 1926 by Russian neurologist Ewa Ssucharewa in 1926 (Attwood 2007; Ssucharewa 1926; Ssucharewa and Wolff 1996). The first in-depth clinical case studies to use the specific term “autism” were published by Leo Kanner (1943). Kanner published case studies of eleven children with what he named “infantile autism.” Kanner’s patients had average or above average intelligence, but had difficulty engaging the social world. The patients labeled autistic by Kanner met specific criteria, while the existence of other mental health conditions explicitly precluded the label. According to Grinker (2007, p. 49) Kanner saw himself in these children. The children preferred order and isolation. They were sensitive to particular noises and other sensations. And like Kanner, all were concrete thinkers. As a result, Kanner’s criteria for autism create a narrow definition, meant to apply to a select group of individuals.

The definition of autism as a distinct condition first appeared in the DSM-III in 1980. Kanner’s basic criteria remained in place, though mental retardation no longer precluded a diagnosis of autism. Mental retardation is now associated with nearly half of autism cases (Grinker, 2007; Yapko, 2003). Individuals with autistic traits but of average or above average intelligence are now more likely to be labeled as having Asperger’s Syndrome.

A contemporary of Kanner, Hans Asperger, also studied individuals with social and language impairments (Asperger, 1944). While Kanner published in English, Asperger’s work remained in German until 1991 when translated by Uta Frith. Though Lorna Wing had written about Asperger’s studies ten years earlier (Wing, 1981), these papers were not widely circulated, so mental health professionals in the United States were largely unaware of these case studies. Asperger’s patients were less impaired than Kanner’s, but they were also similar enough that today clinicians consider “Kanner’s Classic Autism” and “Asperger’s” two extremes of the same diagnosis. Unlike Kanner, Asperger did not establish criteria for the disorder he observed. The criteria used for Asperger’s Syndrome are still evolving.

Although the original descriptions of Asperger were extremely detailed, he did not provide clear diagnostic criteria. In London, in 1988, a small international conference was held on Asperger’s syndrome, with speakers who had begun exploring this newly discovered area of the autism spectrum. One of the results of the discussions and papers was the publication of the first diagnostic criteria in 1989, revised in 1991 (Gillberg 1991; Gillberg and Gillberg 1989). (qtd in Attwood, 2007, p. 36)

Even this short historical background reveals the problem facing universities: autism, a condition recognized as a federal disability, is a condition without a stable definition. This instability existed before what might be one of the strangest stories of a definitional shift occurred. We would like to imagine that a book of definitions used by a group of health professionals to categorize individuals would be an example of near-perfect editing. As readers, we probably anticipate minor errors, but certainly we do not anticipate such an error changing a definition so greatly that potentially thousands of lives are affected. And yet, that is precisely what happened due to a seemingly minor error in the 1994 edition of the DSM (Grinker, 2007, p. 140).

A single word changed, “and” became “or” in a checklist, and the definition of autism was altered and expanded in ways likely unimaginable to Kanner or Asperger.

The publication of the DSM-IV-TR corrected this error and autism was restored to the intended, narrower definition the editors of the DSM had adopted in 1993 and had expected to see in print in 1994. For at least six years, and probably longer, clinicians used the “wrong” definition of autism. A definition with a single error in typesetting affected more than research data — this definition affected the lives of individuals. With the “explosion” of people categorized as autistic between 1992 and 2000, closely paralleling the period during which the broader definition of autism was in print, it is reasonable to infer a causal relationship between the definition and the “epidemic” of autism.

To explain the sudden increase in diagnoses of autism, we might ask if clinicians rely on the DSM as the arbiter of definitions. By the time the DSM-IV was published, 14 years after the DSM-III, a generation of mental health professionals had been trained, even conditioned, to assume the inviolable nature of definitions in the DSM editions. If the DSM checklist suggested an individual was autistic, few individual clinicians would question the diagnosis (Grinker, 2007).

Current Definitions

Pragmatism allows a community to choose a definition that is contextually appropriate. In the case of a federally recognized disability, however, there is a necessity to select a legally defensible definition, as well. The definition, a collection of symptoms, must be as narrow or as broad as the community and disability specialists can defend ethically.

Current definitions of autism have shifted from the DSM-IV-TR to more service-oriented definitions; clinicians apply the term autism to a broader set of students in order to obtain various social, educational, and treatment services for those students. Mental health professionals in the United States have moved beyond the criteria of the DSM-IV to use “Autistic Spectrum Disorders” to describe a range of symptomologies. The use of Autism Spectrum appears to have originated at the London conference of 1988. It could be said that the editors of the DSM, though selected by other APA members for their specialized knowledge, have “lost control” of the word autism and its meaning.

More than 100 books have been published on Asperger’s Syndrome since 1988, most of these for parents of K-12 students (Attwood 2007). Between 2005 and 2006, nearly 300 general audience titles on autism were published (Grinker 2007). These books do not adhere to the DSM-IV-TR, but instead use a variety of terms and descriptions to define autism. Bogdashina (2006) suggests the characterizations found in these books of autism as a spectrum moves beyond clinical definitions.

As autism is a spectrum disorder and its manifestation varies from individual to individual, it is no wonder, therefore, that many ‘non-official’ but widely accepted descriptions have emerged: high-functioning autism (HFA), low-functioning autism (LFA), ‘mild autism,’ ‘moderate autism,’ ‘severe autism,’ ‘autistic traits,’ ‘autistic tendencies.’ It is necessary to note that these terms are subjective. There are no clinical definitions of words such as ‘high-functioning autism,’ ‘low-functioning autism,’ ‘mild’ or ‘severe’ autism. However, because autism is so wide ranging, professionals may use terms like these to describe where on a continuum they believe an individual’s abilities may lie. (Bogdashina, 2006, p. 27)

As some clinicians and advocates push for the broadest definitions of autism, the public might begin to question the seriousness of the diagnosis. Gifted autistic individuals perceived as successful academically, such as Temple Grandin and Stephen Shore, complicate public perceptions of autism. Universities will have to deal with these perceptions when deciding which autistic students qualify for accommodations. Humorist Garison Keillor drew upon the broadening definition of autism in a 2007 column.

When I was a kid looking up at the movie screen, I could read the text faster than it scrolled up from the bottom of the screen — “Once upon a time, in a land faraway, in a beautiful castle in the forest” — and I took this to mean that I was smart. It came as a huge relief to be smart, since dumb kids were scorned and teased, and to demonstrate my smartness, I learned facts from the World Almanac and I developed prowess as a speller. By the time I was 10, I had won the label of Brain. This was easier back then: If you wore glasses and were self-absorbed, they took it as brilliance. Nowadays I might be labeled autistic (Keillor, 2007).

Society will be asked to accommodate those diagnosed as having High-Functioning Autism, Asperger’s Syndrome, or a Pervasive Developmental Disorder. Individuals with diagnoses of AS or PDD-NOS are characterized by only minimal symptomologies. While there might be some social difficulties or physical awkwardness, the average to above average intelligence of these individuals allows them to function in classrooms and society with minimal difficulty. It might be that the word autistic is being used to describe people once called geeks or, as Keillor’s column suggests, “brains.” Keillor’s equating autism with his focused academic pursuits illustrates one risk of broadening diagnostic criteria. It is most likely not pragmatic to accept the broadest definitions of autism being advanced by some mental health experts. For example, Durig suggests most people have autistic traits.

[W]e might consider the notion that there is not actually such a thing as Autism as much as there is a phenomenon of Autistic perception that is experienced in varying gradations. In current terminology, a person with Autism is actually a person with very strong Autistic perception. (Durig, 1996, p. 98)

High-functioning autism (HFA) is not a DSM-IV-TR sanctioned diagnosis. Clinicians assign this label to individuals who demonstrate autistic traits at an early age but possess a “Full Scale IQ” above 70 (Attwood, 2007; Bogdashina, 2006; Yapko, 2003). For universities attempting to define autism, Bogdashina (2006) and Wing (1996) complicate matters by adding subgroups with names that might be misconstrued by any faculty or support staff working with students. These two clinicians subdivide autistics as “aloof,” “passive,” “active,” and “stilted.” These terms are not clinical, though. Wing’s definitions stress the “inappropriate” behaviors of autistic individuals, again without defining what constitutes inappropriate.

What Attwood and other clinicians fear is the codification of a definition developed by academic researchers seeking to narrow the criteria for a diagnosis of autism. In particular, some advocates fear the exclusion of milder forms of autism, such as Asperger’s Syndrome. Attwood argues against this exclusionary definition.

Clinicians in Europe and Australia are taking a dimensional or spectrum view of autism and Asperger’s syndrome rather than a categorical approach (Leekham et al. 2000).

… As a clinician, I do not think that academics should try to force a dichotomy when the profiles of social and behavioural abilities are so similar and the treatment is the same. Unfortunately, a dilemma for the clinician is whether a particular diagnosis – autism or Asperger’s syndrome – enables the child or adult to have access to the government services and benefits that he or she needs. … Some clinicians may write reports with a diagnosis of autism or High Functioning Autism rather than the more accurate diagnosis of Asperger’s syndrome so that the child has access to resources and the parents do not have to resort to litigation. (Attwood, 2007, p. 45)

It is litigation, seemingly suggested by Attwood and many advocacy groups, that must concern public and private organizations. Supplying services to the disabled has a cost, as does litigation. This tension is precisely why many in mental health research, as opposed to clinicians, would prefer to locate an unmistakable cause behind the symptoms known as autism. However, even if we could definitively identify autism as a medical condition with a precise cause, there would be value judgments behind the reason for making the diagnosis and providing services. Szasz (2003), resistant to popular definitions, admits “the concept of disease contains an element of value judgment” (23).

It is possible to debate the scientific rigidity of the mental health professions, and this debate is ongoing. Grinker points to not only Thomas Szasz, but Michel Foucault and Erving Goffman as skeptics, even when it comes to defining autism as a disorder (2007, p. 115). Some people claim diagnoses are words assigned to those who are merely different; diagnoses become tools to control the population. If this is the case, then words like “autistic” are meant to remove individuals from society until these people can be “cured” or “treated” to be more acceptable to the dominant culture. Words become grounds for exclusion, labels we assign to those outside norms.

Autism, as currently defined, might be more than one physical condition. In time, this might necessitate more than one name for the symptoms. If, as Szasz and others suggest, autism and other disorders should have precise, physical definitions, we are far from that goal. Szasz is often skeptical of diagnoses made based on the DSM-IV.

Bogdashina explains the symptom-based definition of autism as the best option we currently possess. This is not to suggest “autism” is one disorder or even one set of symptoms. Instead, it is a reminder that we cannot point to a single cause and declare to know what autism is.

At present there are no medical tests like brain scans, x-rays or blood tests that can identify autism. The diagnosis is made on the basis of certain behavioral manifestations. (Bogdashina, 2006, p. 29)

According to several neurological studies and genetic surveys, there is a physical component to autism, suggesting that Szasz and other skeptics could be countered. Szasz certainly expects any disease or disorder to have a demonstrable cause. At present, that is simply beyond our capabilities. However, as Kamran Nazeer (2006) writes, there is a great deal of evidentiary support for the genetic link theory.

[S]tudies suggest that the risk for siblings of autistic individuals is higher than the risk for anyone else. The concordance rate for monozygotic twins, that is, twins who share all of their genetic material, is estimated at around 60 percent. The rate for dizygotic twins, that is, twins who share half of their genetic material, is around the same as for other siblings.
…. It gets worse. The loci for autism on the genome have not been pinpointed but some analysis suggests that between three and ten genes are involved in autism, and other interpretations have it that as many as a hundred genes might be involved. If the higher estimates are accurate, this means that many more people have some, or even a plurality, of the genes for autism than display the symptoms for it. Autism is caused by rare mutations among these – up to one hundred – genes. (Nazeer, 2006, p. 198-9)

Using a physical definition, or set of definitions, for autism would certainly provide legal legitimacy for accommodations and special services while also allowing limits on the types of services provided. Pragmatism calls for balancing what might be an ethical desire to accommodate every individual diagnosed as autistic with financial, cultural, and political limitations. Using physical, causal definitions of autism provides one possible avenue for considering services. Stella Waterhouse (1999, qtd Bogdashina 2006) developed categories of autistic disorder based on possible causes. The definitions are not in wide use, possibly because the DSM and mental health professionals tend to be focused on symptoms. The Waterhouse autism categories are:

• perceptual autism (linked to a damaged limbic system)
• perceptual Asperger syndrome (linked to frontal lobe problem)
• reactive autism (limbic system)
• reactive Asperger syndrome (frontal lobe)
• induced autism (limbic system)
• induced Asperger syndrome (frontal lobe)
• secondary autism (caused by accident or illness)

The likelihood is that a physical condition would not be challenged in the courts by those wishing to restrict access to services. Also, physical definitions of autism imply only limited success with treatments or therapies, allowing the courts to establish constraints on what services and accommodations will be deemed “reasonable” under the Americans with Disabilities Act. Those therapies appropriate to frontal lobe impairments might be provided, while more experimental therapies might not be.

Other Autism Definitions

While mental health professionals in the United States and most of Europe use the DSM and the ICD when diagnosing conditions, France and a handful of former French colonies continue to use a separate collection of diagnostic manuals. For children and young adults, the French Classification of Child and Adolescent Mental Disorders is the preferred reference manual. The CFTMEA was updated in 2000 by the Fédération Française de Psychiatrie (FFP). The CFTMEA is very different from the DSM and ICD in that it reflects a French bias against psychiatry as opposed to psychology (Grinker, 2007).

The DSM checklists tend to be applied as if they are precise measures for disorders. The organization and language of the DSM encourage adherence to its diagnostic model. By comparison, the French classification model is relaxed and mental health professionals in France tend to resist applying precise diagnoses (Ribas, 2006). The French mental health establishment has not readily accepted the American definition of autism as a result of this bias. Many French psychologists consider autistics to be manipulative psychotics.

It thus becomes easier to recognize the terrible suffering from which autistic people are protecting themselves, and consequently already to tolerate slightly better the shattering echo that it stirs in us as we share their lives and the tyranny they are compelled to exercise over those around them....

Some teams in France use a Lacanian theory that has placed an interesting emphasis on the specific difficulty that autistic people have in assuming a subject position. (Ribas, 2006, p. 25)

It is difficult to imagine any organization in the United States adopting narcissistic psychosis as a definition of autism. At the other extreme, some definitions put forth in the United States and internationally attempt to make autism a universal, but variable, condition. These definitions make autism a style of perception, nothing more than an alternative way to analyze sensory and intellectual inputs. Durig puts forth such an alternative, as mentioned previously. He classifies those students with some social discomfort and intellectual rigidity under the label “slight autism.”

We ought to be able to assess schoolage children and youth for slight Autism, because many students may have fallen through the cracks in the system when slight Autism was either perceived as a learning disability, something close to it, or just altogether completely misunderstood….
Several of the following five behavioral characteristics might be identifiable in a slightly Autistic person:

• Difficulty expressing oneself in formal social contexts
• A predilection for collecting things, especially things that are out of the ordinary
• Eccentric behavior and attitudes
• An ability to sever interpersonal relationships easily
• A predilection for repetitive behaviors

(Durig, 1996, p. 102)

With the ADA and other legal mandates naming autism specifically as a disability, making expansive numbers of individuals eligible for accommodations is likely to be fiscally impossible. It is also likely to cause a backlash among those advocating for students with other disabilities. It is possible the definition of autism will be returned to a more conservative criteria in reaction to perceived abuses of the word by politicians, school districts, advocates for autism awareness, and, most importantly, mental health professionals.

Autism is Better Than…

Mental health professionals face a variety of pressures when applying a label to an individual. In some instances, the criteria for autism are met so clearly that clinicians applying the word to a child are unlikely to question themselves. However, there are many occasions when a mental health professional does consider the definition of autism along with its ethical, moral, and practical implications (Attwood, 2007).

A brief discussion of individuals diagnosed with autism who are not going to enter college and universities does highlight how the concept of autism and the autism spectrum might be expanding for cultural reasons. Consider instances when the label of autistic seems to help a desperate parent. If a child is mentally retarded he or she might also meet the criteria for autism. But what if the child is definitely mentally disabled, but not clearly autistic? According to Grinker (2007), it is not uncommon for a child to still be labeled autistic because there are emotional and financial benefits to the parent. While most experts believe there is no cure for autism, nor is there any evidence that a classic case of autism improves over time, it seems to give parents hope and comfort to hear the diagnosis of autism instead of retardation (Ozonoff, Rogers & Hendren, 2003).

Such a diagnosis also has financial benefits because in some states an autistic child is eligible for state aid and special education resources unavailable to a child with retardation. Federal regulations, which are discussed later in this paper, have been influenced by advocacy groups, leading to aid for autistic children that is not available to all groups with mental health issues. The diagnosis of autism is then reported to the local schools, the state, and the federal government. In this way, the definition of autism begins to include lower-functioning individuals when statistics are reported. This is but one way in which the rate of autism appears to be increasing.

Insurance companies are also more likely to cover certain treatments and benefits if the child is autistic (Attwood, 2007; Grinker, 2007). Speech therapy, play therapy, and behavior modification are often covered by insurance policies if a child is autistic, but not if a child is mentally retarded. The broad definition of autistic means the insurance company might not have an indication of the severity of a particular case, while there is little doubt of the severity of mental retardation.

Still, there is a cultural bias against labeling students as autistic. As a result, some clinicians will use only the Asperger’s Syndrome or PDD-NOS diagnoses, recognizing that these will still be considered under the heading of autism by most institutions.

It is important to acknowledge that the PDD-NOS diagnostic classification is sometimes employed when a diagnostician is simply reluctant to use the Autistic Disorder label. In fact, in one study 176 children with Autistic Disorder were judged to not be significantly different from 18 children with PDD-NOS on any neuropsychological or behavioural measure (when nonverbal IQ was controlled; Rapin et al., 1996; cited in Filipek et al., 1999). (Brock, 2006, p. 6)

Rates of Autism

Diagnostic Rates

Studies have shown that 1 in 150 people are autistic (the CDC's Autism and Developmental Disabilities Monitoring ADDM have shown these statistics). This rate is higher than previously reported. However, the study does not address the controversial question as to whether or not the rates of autism occurrence are increasing, only diagnoses.

According the data at fightingautism.org rates autism rates have been continuously increasing over the past seventeen years. In 1992 there were approximately 15,580 children aged 6-22 with autism; fifteen years later as of 2007 that number exponentially grew to 258,305. In 2000 a new set of data for the age range of 3-22 was recorded, and showed a similar exponential trend. In 2000 there were approximately 93,650 children with autism—this number grew to 297,739 seven years later.

Research has been able to compile statistics for autistic children in each of the fifty state. An autism prevelance report that was published by the Minnesota Public School system showed that as of 2003:

• There were 5,838 children in Minnesota with autism
• There was a 27% annual growth rate for autism from 1992 to 2003
• Approximately 1 in 113 children had autism

(Studies that provide similar information for the other 49 states can be found at: http://www.fightingautism.org/idea/autism-prevalence-report.php)

By monitoring the rates of autism, researchers can get better insight to potential causes. Recent published data shows autism rates are increasing at an alarming rate. In the 1970s the incidence of autism was less than three children per 10,000 today that rate has risen to over thirty children per 10,000. The controversy over these rates is due to the fact that some believe the drastic increase is due to the fact that there have been more studies, and more attention has been paid to autism compared to the past.

Autism Rates compared to Other Disabilities in Children

According to the data published by the CDC:

• Autism occurs in approximately 1 in 500 children
• Downs Syndrome occurs in approximately 1 in 800 children
• Juvenile Diabetes occurs in approximately 1 in 400 children
• Childhood cancer occurs in approximately 1.5 in 10,000 children

The Challenge of Counting

Autism is an “epidemic,” if we accept the rhetoric of advocacy groups. But what is the real rate of autism? Is there an actual epidemic or are we more aware of autism and autistic traits that have existed for centuries? These are questions that can only be explored if we are able to establish a uniform methods for counting cases of autism.

Does autism affect 1 in 300 children? Or maybe it is 1 in 166? The most recent public service campaign by the Autism Society of America claims a rate of 1 in 150.

Today, the most widely accepted conservative estimates, which is to say, the lower estimates, are as follows: Autistic Disorder (13 / 10,000), PDD-NOS (21 / 10,000), Asperger’s Disorder (2.6 / 10,0000), which gives a combined rate of 36.6 / 10,000, or about 1 in 300.

... The less conservative and current best estimate for the whole range of autistic disorders, including cases of
autism that may be diagnosed by clinicians and recorded in the IDEA child counts, but which may not meet DSM criteria, is about 60 in 10,000, or 1 in 166. In these less conservative estimates, Asperger cases account for between 14 and 19 percent of the total autism spectrum population. (Grinker, 2007, p. 163)

When we seek a precise rate of autism, we have to concern ourselves with the politics as much as the science. The diagnostic criteria used to identify autism need to be uniform, or the rates established are meaningless, scientifically. Yet the question of defining autism is incredibly political.

Higher rates of autism increase pressure on “science” and “government” to do something, anything, to deal with the perception of an epidemic.

Data collection can reveal patterns of diagnosis. Questions are then raised about concentrated reports of autism. Are there geographical causal links or are regional diagnostic practices resulting in rate differences? Are the patterns ethnic? Economic?

Employing a uniform definition of autism becomes essential for both scientific data analysis and equitable distribution of public resources.

There should be no doubt that the diagnosis of autism is increasing at an astonishing pace. Does this mean there are more cases or that we are better at detecting autism? Has awareness of autism increased the number of students screened for autism spectrum disorders?

It could be a mix of both higher actual rates and better diagnostic criteria. Unfortunately, only time can answer what is responsible for the rate increase. There is little doubt, however, that historical rates of autism are not accurate.

• Cultural biases against autism resulted in fewer reported cases in the past;
• Diagnostic criteria for autism disorders have improved substantially since 1994; and
• Public awareness of autism has increased a willingness to have children assessed by clinicians.

If criteria for the diagnosis change, or if we develop genetic screening for some forms of autism, rates from surveys we currently accept will be rendered meaningless.

The truth is that no one knows the exact rate of autism world-wide, in the United States, or even within a single state. The statistics we have are improving, but they will be revised for years to come.

Rett's Syndrome

Rett Syndrome is a childhood neurobiological disorder commonly affecting females. Rett's Syndrome is also known as Rett's Disorder.

The loss of motor functions of the entire body is the major trait of the disorder and can even affect speech and eye movement. Early onset can be identified by problems walking or crawling and a lack of eye contact. As the disease progresses, the patient will lose function of their hands as well as the ability to speak completely. Although Rett's can be an incredibly debilitating disease, people with Rett's have been known to have reasonably long productive lives. It is important to note though that because it is such a new disease discovery, little is known about specific life expectancies.

Being a recent discovery does not mean the disorder itself is new. Improvements in both genetic screening imaging technologies have allowed researchers to detect and follow the progression of Rett's in children.

The treatment of Rett Syndrome is just that: treatment. Because there is no cure for the disease, all of the treatments focus solely on the management of symptoms. Occupational and physical therapy is used and will usually help slow the loss of muscle control. Medication can help with motor skills as well as the treatment of scoliosis which is also typical of someone with Rett's Syndrome.

Potential Causes

NOTICE: This page is not meant for debate. Please take any discussions to The Autistic Place forums.

Difference and Cause

If there are observable differences among ASD individuals, then it seems likely that there are different underlying causes of the traits we classify as “autism.” Some scientists point to a list of causes indicating how these differences might originate.

We are beginning to find genetic markers for ASDs. As Barry R. Tharp, M.D., writes in Autism Spectrum Disorders:

We assume that autism is a syndrome with many etiologies.... This lack of a single etiology behooves the physician to initiate a thorough neurologic and genetic evaluation after making the diagnosis of autism spectrum disorder. Approximately 10%-20% of children with autism spectrum disorders (ASD) have a definable neurodevelopmental genetic syndrome; this number is likely to increase as more sophisticated chromosomal analyses become clinically available (Shevall et al. 2001). (Ozonoff et al., 2003, p. 111)

The list of suspect causes is lengthy. Each cause might affect a different part or parts of the nervous system, especially brain functions. With so many underlying causes for what we label as ASDs, a spectrum of symptomologies exists. Scientists locating conditions that correlate with autism are careful to avoid any claim that they have located a cause, because the research will likely take decades to find all the factors involved. Some of the factors under consideration include:

• Chromosomal syndromes:
  • Fragile X
  • Angelman syndrome
  • 15q duplication
  • Down syndrome
  • de122q11
  • Ring 20
  • Rett disorder
• Neurocutaneous syndromes:
  • tuberous sclerosis
• Syndromes without known chromosomal abnormality:
  • Sotos
  • Smith-Lemli-Opitz
  • Moebius
  • CHARGE association
• Congenital/acquired infections:
  • cytomegalovirus
• In utero drug/chemical exposure:
  • thalidomide
  • valproic acid
• Inheritied metabolic disorders (unknown)
• Miscellaneous:
  • hypoxic-ischemic encephalopathy

Vaccine Debates

If you are interested in the "Vaccine Debate" and similar issues, we suggest visiting Web sites dedicated to those topics. This AutismWiki is primarily for issues of education, life skills, and succeeding with autism. It is an unfortunate aspect of autism activism that the vaccine debate often overshadows issues of education. We hope to be one place where the debates do not dominate content.

While most medical studies and research journals suggest vaccinations are generally safe, there are groups and individuals who are skeptical of these findings.

Sites Considered Anti-Vaccine

(Alphabetical, not by popularity of Web site or size of organization)

• Mercury Exposure (http://www.mercuryexposure.org/) - site dedicated to exploring the risks of mercury in the environment
• The National Autism Association (http://www.nationalautismassociation.org/)
• Safe Minds (http://www.safeminds.org/)

Americans with Disabilities Act

See Also

• http://www.ada.gov/taman3.html

Legal Rights of Students

The legal rights of students with autism spectrum disorders change as the student ages. Younger students have "more" rights, while adult college students tend to have far fewer protections.

Early Childhood Education

Early Childhood Education

Suggestions

For Students

For Parents

For Instructors

Kindergarten and First Grade Education

Kindergarten and First Grade Education

Suggestions

For Students

For Parents

For Instructors

Lower Elementary Education

Lower Elementary Education (Grades 2-3)

Suggestions

For Students

For Parents

For Instructors

Elementary Education

Elementary Education (Grades 4-6)

Suggestions

For Students

For Parents

For Instructors

Middle School / Junior High Education

Middle School / Junior High Education

Suggestions

For Students

For Parents

For Instructors

High School (Secondary) Education

High School (Secondary) Education

Suggestions

For Students

For Parents

For Instructors

Vocational Postsecondary

Vocational Education

Suggestions

For Students

For Parents

For Instructors

College and University Education

The transition from high school to college can be a challenge for any student, but there are unique challenges for students with autism spectrum disorders (ASDs). Information for this document has been assembled from a variety of sources, with personal experiences also used to expand on the advice.

College and University Settings

College and university settings are quite unlike the K-12 settings students and their families encounter. These institutions are covered by the Americans with Disabilities Act, which is notoriously vague. In general, a campus must provide physical accommodations and "reasonable" access to resources. Unfortunately, there are few regulatory guidelines or legal precedents. In terms of the physical environment of a campus, it is best to select a campus that "feels right" for the student with an ASD.

Personal Responsibility

Everything from personal hygiene to taking medications become matters of personal responsibility while on a college or university campus. Students with ASDs should begin developing independent life skills as early as possible, definitely before starting college.

Social Environment

The social norms of college can be challenging for students with ASDs. A student with an ASD can establish social connections by joining:

• Organizations focused on a specific academic discipline.
• Organizations catering to special interests, such as a hobby.
• Online communities linked to the campus.

Living Arrangements

The choice to live on campus, near campus, or at home is an important decision that should be made by students and families together. Students with ASDs do not always realize how different it is to live with strangers, or even friends from high school, versus living among family members. Family members learn to accept routines and behaviors that might seem odd to others, for example.

Living on campus in a standard dormitory arrangement has several potential benefits, including group activities and the presence of resident advisers (RAs). Having student advisers present can help students negotiate the challenges of sharing space. Some colleges and universities have adult mentors living among students. These mentors might be adult staff or even "faculty in residence."

Some campuses offer "singles" within dormitories or campus-owned apartments. These rooms are generally more expensive and, when they do exist, tend to be rare. If single occupancy rooms exist, sometimes the disability services can help a student with special needs receive preference in any housing assignments or lotteries. Unfortunately, there are seldom enough single occupancy rooms to meet the demand.

Living alone or with friends, near campus, allows a student the ability to select an apartment that is appropriate to the student's needs. Off-campus housing tends to be quieter with greater privacy. On the other hand, there are no resident advisers or other mentors to help students adjust to the college experience.

Suggestions

The transition to college is never easy. It helps to plan ahead.

For Students

Do not apply to a campus you cannot tour in advance. You need to know that your needs will be met by the campus.

Be willing to consider a less-prestigious campus if the services and atmosphere are healthier for you. Successfully completing your degree is the most important objective and that is most likely when a campus supports your needs.

As mentioned in this document, you need a calendar system.

For Parents

Your student might not like the advice, but ask for weekly updates and, if at all possible, check on the student's work habits.

Some private universities will allow students to share grades and progress reports with parents. The federal Family Educational Records Privacy Act limits what instructors can share with parents when a child is 18 or older. Still, many schools have forms for students to complete granting parental access to academic records.

For Instructors

Attend any autism awareness conferences or training sessions offered by your campus.

Selecting a School

Selecting a School

Students with autism disorders need to carefully consider their options when considering school to which they will apply. Though overall academics and specific programs are important factors, students with ASDs need to also think about factors others might overlook.

Location

The location of a campus matters more than incoming students realize. Most people have difficulty with extreme change, but this can be exacerbated by an ASD. If a student is accustomed to a particular type of environment, radical change might be a poor choice.

Transportation Options

If the student either does not or is uncomfortable driving, then there are several considerations. Many individuals with an ASD have not ridden mass transit, and therefore do not know if public transportation is a potential problem. Try riding a train or bus before moving to a campus where mass transit is a part of life.

• A campus with sufficient on-campus housing might be preferable, so no commuting is required.
• An urban setting might be acceptable if the student does not mind mass transit.
• Not all campuses are "bike friendly" all year, and some lack sufficient bike paths.
• Most campuses have their own transit system, regardless of campus location.

Weather

Because students with ASDs are sometimes hypersensitive to clothes, temperatures, and light, the climate of a campus location can be important. Disability services experts can relate stories of students with frostbite because gloves were uncomfortable. Arizona State University has warned students with ASDs of the risks associated with heat stroke. Sometimes physical risks cannot overcome issues of comfort for the student with an ASD.

Distance from Home

Many students get "homesick" from time to time, especially during their first year at a university. Proximity to home can be important for the student with an ASD when the familiar is needed to reduce stress. The student might not need to return literally to home, but might need familiar scenery on occasion. Sometimes, simply remaining in a region that is familiar is sufficient.

The Right Size

Most autism specialists suggest a small campus population might be better for students with ASDs (Shore, p. 203). The reasons cited include individualized attention from disability services and the security of close-knit social groups. Even a large campus might have smaller "residential colleges" or similar arrangements, which are to foster a sense of community.

Some students with Asperger's Syndrome have indicated that larger campuses offer the benefit of "blending into the crowd" with less pressure to conform to a set of cultural norms.

Reputation for Tolerance

Some schools are more accepting than others. Touring a campus, it is easy to determine how diverse the population is.

Diversity is not the only factor when considering how tolerant of neurodiversity a university is. "Tolerance" of some students with ASDs can be interpreted as tolerance for "bookworks" and "geeks." Some universities are known for having such unique student bodies. A student with special math or science interests might fit in much better at MIT or CalTech than he or she did in high school.

Conflict Resolution

Hopefully no student needs to deal with conflict resolution, but being different can lead to conflicts with other students and even faculty members. The conflict resolution system varies from campus to campus. Because professors can declare a student disruptive for behaviors common among students with ASDs, it is important to know what would happen in the event of a complaint.

• Conflict resolution that is led by students is unlikely to appreciate the nature of autism spectrum disorders.
• Mediation processes that circumvent disability service personnel can be problematic.
• Procedures that fail to provide an advocate for students with special needs should be avoided.

Presence of ASD Specialists

Research universities are more likely to have autism researchers and specialists than smaller campuses. If there is an autism institute or research center on a campus, it is likely the disability services are well trained and prepared to assist students with ASDs. University counseling services on campuses with autism specialists tend to have excellent neuropsychology counselors.

Sources

Beyond the Wall: Personal Experiences with Autism and Asperger Syndrome, Second Edition

Graduate Studies

Graduate Studies

Suggestions

For Students

For Parents

For Instructors

Epidemic: Political Call to Action

Epidemic or Not?

The word “epidemic” is frequently misused in public debates. Using the term incorrectly is similar to declaring a “war” on every problem facing humanity: a war on poverty, war on crime, war on illiteracy, and so on.

Yes, mentioning the “autism epidemic” attracts media attention, but it there a real epidemic in scientific terms? Traditionally, an epidemic appeared suddenly, killed indiscriminately, and then vanished as suddenly as it arrived. Some medical historians and epidemiologists suggest an epidemic has to affect ten or even 20 percent of a population to earn the designation.

Oxford American Dictionary
epidemic (n) A disease that quickly and severely affects a large number of people and then subsides.

Is there an autism epidemic? Scientifically, no. But public policy and debates are not based on scientific accuracy. We should not have to resort to hyperbole to explain that autism is a serious problem.

The word “epidemic” is devolving and losing its essence thanks to politicians abusing it. Now, any serious, wide-spread problem is an epidemic, even if it is not a contagious disease that could decimate a population.

Terms for Autism

Self-Identifiers

Individuals diagnosed with autism spectrum disorders do not agree on which terms and phrases are best, or least offensive, for ASDs.

Autistic Person or Person with Autism?

Aspie, Autie, Aspergian…

Asperger, Hans

== Hans Asperger ==

=== Life ===

=== Career ===

=== Publications ===
Asperger, H. 1991 (1944). "Autistic Psychopathy in Childhood." Trans. Uta Frith. p. 37-92 in Frith, ''Autism and Asperger Syndrome''

== Asperger's Syndrome ==
Asperger's Syndrome is named for Hans Asperger, [[Autism:Asperger Syndrome|Asperger's Syndrome]]. The disorder is similar to high-functioning autism (HFA) symptomatically and in appearance.

=== Asperger's Case Studies ===
The case studies written about by Dr. Asperger...

Attwood, Tony

Baron-Cohen, Simon

Bettelheim, Bruno

Fombonne, Eric

Frith, Uta

Grandin, Temple

Kanner, Leo

Lovaas, O. Ivar

Rimland, Bernard

Bernard Rimland

=== Life ===

=== Career ===

=== Publications ===

1964 Infantile Autism: The Syndrome and Its Implication for a Neural Theory of Behavior

1976 Modern Therapies (with Virginia Binder, A. Binder)

1998 Biological Treatments for Autism and PDD (with William Shaw, Lisa Lewis, Bruce Semon)

2001 Tired - so Tired!: And the "Yeast Connection" (with William Crook, Cynthia Crook)

2003 Vaccines, Autism and Childhood Disorders: Crucial Data That Could Save Your Child's Life (with Neil Z. Miller)

2003 Treating Autism: Parent Stories of Hope and Success (with Stephen M. Edelson, Ph.D.)

2006 Recovering Autistic Children (originally published as Treating Autism) Second Edition (with Stephen M. Edelson, Ph.D.)

Shore, Stephen

Wakefield, Andrew

Wing, Lorna

Lorna Wing

Although groundbreaking and influential, Wing herself cautioned in her 1981 paper that... ''"It must be pointed out that the people described by the present author all had problems of adjustment or superimposed psychiatric illnesses severe enough to necessitate referral to a psychiatric clinic ... (and) the series described here is probably biased towards those with more severe handicaps."''

=== Life ===
Born: October 7, 1928.

English psychiatrist and physician

=== Career ===

As a result of having an autistic daughter, she became involved in researching developmental disorders, particularly autism spectrum disorders. She joined with other parents of autistic children to found the National Autistic Society (NAS) in the United Kingdom in 1962. She currently works part-time as a consultant psychiatrist at the NAS Centre for Social and Communication Disorders at Elliot House. She lives in Sussex, England.

Wing is the author of many books and academic papers, including Asperger's Syndrome: a Clinical Account, a 1981 academic paper that popularised the research of Hans Asperger and introduced the term Asperger's syndrome.

=== Publications ===
This list of works is not in the accepted Chicago/Turabian or APA format for The Autistic Place.

<b>Papers</b>

Wing, L. & Gould, J. (1979), "Severe Impairments of Social Interaction and Associated Abnormalities in Children: Epidemiology and Classification", Journal of Autism and Developmental Disorders, 9, pp. 11-29.

Wing, L. (1980). "Childhood Autism and Social Class: a Question of Selection?", British Journal of Psychiatry, 137, pp. 410-417.

Wing L. (1981). "Asperger's syndrome: a clinical account". Psychol Med 11 (1): 115–29. PMID 7208735. Retrieved on 2007-12-29.

Burgoine, E. & Wing, L. (1983), "Identical triplets with Asperger's Syndrome", British Journal of Psychiatry, 143, pp. 261-265.

Wing, L. and Attwood, A. (1987), "Syndromes of Autism and Atypical Development", in Cohen, D. & Donnellan, A. (eds.), Handbook of Autism and Pervasive Disorders, New York, John Wiley & Sons.

Wing, L. (1991), "The Relationship Between Asperger's Syndrome and Kanner's Autism", in Frith, U. (ed.), Autism and Asperger Syndrome, Cambridge, Cambridge University Press.

Wing, L. (1992), "Manifestations of Social Problems in High Functioning Autistic People", in Schopler, E. & Mesibov, G. (eds.), High Functioning Individuals with Autism, New York, Plenum Press.

Wing L, Potter D (2002). "The epidemiology of autistic spectrum disorders: is the prevalence rising?". Ment Retard Dev Disabil Res Rev 8 (3): 151–61. doi:10.1002/mrdd.10029. PMID 12216059.

<b>Books</b>

<b>1964</b>, Autistic Children

<b>1966</b>, Physiological Measures, Sedative Drugs and Morbid Anxiety, with M.H. Lader

<b>1969</b>, Children Apart: Autistic Children and Their Families

<b>1969</b>, Teaching Autitistic Children: Guidelines for Teachers

<b>1971</b>, Autistic Children: a Guide for Parents

<b>1975</b>, Early Childhood Autism: Clinical, Educational and Social Aspects (editor)

<b>1975</b>, What is Operant Conditioning?

<b>1988</b>, Aspects of Autism: Biological Research (editor)

<b>1989</b>, Hospital Closure and the Resettlement of Residents: Case of Darenth Park Mental Handicap Hospital

<b>1995</b>, Autistic Spectrum Disorders: an Aid to Diagnosis

<b>1996</b>, The Autistic Spectrum: a Guide for Parents and Professionals

<b>2002</b>, Smiling at Shadows: a Mother's Journey Raising an Autistic Child (with Junee Waites, Helen Swinbourne).

== See Also ==

== References ==

External Resources: NAS.org.uk : National Autistic Society

U.S. General Organizations

This directory features support organizations in the United States for individuals with autism and their families.

National Organizations, United States

• Autism Society of America - http://www.autism-society.org

Alabama

• Autism Society of Alabama - http://www.autism-alabama.org

Arizona

• ASA Pima County (Tucson) chapter - http://www.tucsonautism.org
• Greater Phoenix Chapter Autism Society of America - http://www.phxautism.org

California

• Autism Society America, Los Angeles chapter - http://www.asa-la.org
• Autism Society of Orange County - http://members.tripod.com/asaoc/Index.htm
• The Autism Society of Orange County - http://www.asaoc.org
• Families for Early Autism Treatment (FEAT) of Northern California - http://www.feat.org
• Foothill Autism Alliance (FAA) - http://www.foothillautism.org
• North County San Diego Chapter, ASA - http://www.nccasa.atomicshops.com
• San Diego County Chapter, ASA - http://www.sd-autism.org
• Ventura County Autism Society - http://www.vcas.info

Colorado

• Autism Society of Boulder County - http://www.autismboulder.org
• Colorado Chapter, ASA - http://www.autismcolorado.org

Connecticut

• Autism Society of Connecticut (ASConn, ASA) - http://www.autismsocietyofct.org
• Connecticut FEAT - http://www.ctfeat.org

Delaware

• The Autism Society of Delaware - http://www.delautism.org

Florida

• Autism Society of Florida - http://www.autismfl.com

Georgia

• Greater Georgia Chapter, ASA - http://www.asaga.com

Hawaii

• Autism Society of Hawaii (ASA) - http://www.autismhawaii.org

Idaho

• Autism Society of America, Treasure Valley Chapter - http://www.asatvc.org

Illinois

• Autism Society of Illinois - http://www.autismillinois.org
• Autism Society of Southern Illinois (ASOSI) - http://www.asosi.org

Indiana

• Autism Advocates of Indiana - http://www.aaiwalk.com
• Autism Society of Indiana - http://www.autismindiana.org
• Indiana Resource Center for Autism - http://www.iidc.indiana.edu/irca

Iowa

• The Autism Society of Iowa - http://www.autismia.org

Maryland

• Howard County Autism Society (ASA) - http://www.howard-autism.org

Massachussetts

• Autism Society of America, Massachusetts Chapter - http://www.geocities.com/asamasschapter
• Friends of LADDERS (FOL) - http://www.ladders.org/friends.php

Michigan

• Autism Society of Michigan - http://www.autism-mi.org
• Macomb County Chapter of the ASA - http://www.macombasa.org

Minnesota

• The Autism Society of Minnesota - http://www.ausm.org

Nebraska

• Autism Society of Nebraska - http://www.autismnebraska.org
• FEAT of Nebraska - http://www.featofnebraska.com

New England (General Region)

• Asperger's Association of New England (AANE) - http://aane.autistics.org

New Jersey

• Asperger Syndrome Education Network (ASPEN) - http://www.aspennj.org

New Mexico

• New Mexico Autism Society (ASA) - http://www.nmautismsociety.org

New York

• AHA/AS/PDD of Long Island - http://www.aha-as-pdd.org
• Albany ASA - http://www.albanyautism.org
• Bronx Chapter of the ASA - http://www.albany.edu/psy/autism/bronx.html
• CNY ASA - http://www.cnyasa.org
• FEAT of Northern New York - http://www.albany.edu/psy/autism/feat1.html
• Fulton and Montgomery County Autism Support Group - http://www.albany.edu/psy/autism/fmcasg.html
• New York Families for Autistic Children (NYFAC) - http://www.nyfac.org

North Carolina

• The Autism Society of North Carolina - http://www.autismsociety-nc.org

North Dakota

• Fargo Moorhead Famlies for Early Autism Treatment (FMFEAT) - http://fmfeat.tripod.com

Ohio

• Autism Society - North Central Ohio Chapter (ASA) - http://www.ncoc-asa.org
• The Autism Society of Greater Cincinnati - http://www.autismcincy.org
• Autism Society of Ohio (ASA) - http://www.autismohio.org
• Autism Society of Ohio Tri-County Chapter - http://www.triautism.com
• Central Ohio Families for Early Autism Treatment (COFEAT) - http://www.cofeat.org

Oregon

• Autism Society of Oregon - http://www.autismoregon.com

Pennsylvania

• Autism Society of America, Harrisburg Area Chapter - http://www.autismharrisburg.org
• The Autism Society of Pittsburgh - http://www.autismsocietypgh.org

South Carolina

• South Carolina Autism Society - http://www.scautism.org

Tennessee

• The Autism Society of Middle Tennessee - http://www.tnautism.org
• East Tennessee Chapter, ASA - http://www.asaetc.org

Texas

• Autism Society of Collin County (Texas) - http://autism-ascc.org
• Autism Society of Greater Tarrant County - http://www.asgtc.org
• Families for Early Autism Treatment (FEAT) Houston - http://www.feathouston.org
• FEAT - North Texas - http://www.featnt.org
• Texas Gulf Coast ASA Chapter - http://www.asa-tgcc.org

Virginia

• Autism Society of America - Virginia Peninsula Chapter - http://www.peninsulautism.org
• Northern Virginia chapter of the ASA - http://asanv.org

Washington

• Autism Society of Washington - http://www.autismsocietyofwa.org
• Families for Early Autism Treatment (FEAT) of Washington - http://www.featwa.org

West Virginia

• Autism Society of West Virginia - http://www.geocities.com/autismsocietyofwv

Wisconsin

• Autism Society of Wisconsin - http://www.asw4autism.org

Canadian General Organizations

Canada, National

• Autism Society Canada - http://www.autismsocietycanada.ca

Alberta

• FEAT Alberta - http://members.shaw.ca/feat.ab/FEAT.html

British Columbia

• Autism Society of B.C. - http://www.autismbc.ca
• Families for Early Treatment of Autism (FEAT) of B.C. - http://www.featbc.org

Labrador/Newfoundland

• Autism Society of Newfoundland and Labrador - http://www.autism.nf.net

Manitoba

• Autism Society Manitoba - http://www.autismmanitoba.com
• Manitoba Families for Effective Autism Treatment - http://www.mfeat.ca

Nova Scotia

• Autism Society Nova Scotia - http://www.autismsocietynovascotia.ca
• Society for Treatment of Autism - http://www.nsnet.org/autismns/index.html
• Valley Autism Support Team - http://www.nsnet.org/vast

Ontario

• Autism Ontario - http://www.autismontario.com

Quebec

• Autisme Montréal - http://www.autisme-montreal.com
• Fédération; québécoise de l'autisme et des autres troubles envahissants du développement - http://www.autisme.qc.ca

Saskatchewan

• SASKFEAT - http://www.saskfeat.com

Research Organizations

Professional Organizations for Researchers

American Pediatric Society / Society for Pediatric Research - The Society for Pediatric Research encourages young investigators who are engaged in research that is of benefit to children.

Association for Behavior Analysis International - ABA International is a nonprofit professional membership organization with the mission to develop, enhance, and support the growth and vitality of behavior analysis through research, education, and practice. The association has an autism special interest group.

American Psychiatric Association - The American Psychiatric Association is a medical specialty society of more than 35,000 U.S. and international member physicians. Its research webpage has information about the association’s research activities as well as training and funding opportunities.

American Psychological Association - The American Psychological Association (APA) is a 150,000-member scientific and professional organization that represents psychologists in the United States. The Science Directorate works to communicate, facilitate, promote, and represent psychological science and scientists.

American Public Health Association - The American Public Health Association is the oldest and largest organization of public health professionals in the world, representing more than 50,000 members from more than 50 occupations of public health. Its Mental Health Section and Epidemiology Section may be of particular interest.

Association of University Centers on Disabilities - The Association of University Centers on Disabilities is a network of interdisciplinary centers advancing policy and practice for and with individuals with developmental and other disabilities, their families, and communities. The association’s Developmental Disabilities Research Centers represent the world’s largest concentration of scientific expertise in the fields of intellectual and developmental disabilities.

International Society for Autism Research - The International Society for Autism Research (INSAR) offers membership to individuals engaged in academic or research activities (full members), graduate students and post doctoral researchers (student members), and others vested in the study of autism. INSAR hosts the annual International Meeting for Autism Research.

Society for Epidemiologic Research - The Society for Epidemiologic Research (SER) provides a forum for sharing the latest in epidemiologic research. The SER is committed to keeping epidemiologists at the front line of scientific developments.

Society for Pediatric and Perinatal Epidemiologic Research - The Society for Pediatric and Perinatal Epidemiologic Research fosters reproductive, perinatal, and pediatric research, including the study of factors that affect maternal health and the health and development of children, from conception through adolescence.

Society for Public Health Education (SOPHE) - For a complete listing of professional organizations for educators, researchers, and professionals. SOPHE is an independent, international association of health education professionals and students that promotes healthy behaviors, communities, and environments. SOPHE provides guidance in the form of a code of ethics; standards for professional preparation, research, and practice; professional development; and public outreach.

Society for Research in Child Development - The Society for Research and Child Development promotes multidisciplinary research in the field of human development, fosters the exchange of information among scientists and other professionals of various disciplines, and encourages applications of research findings.

University Programs Specializing in Autism

The universities listed offer specialized training for autism professionals. Some of these programs are highly specialized, especially those with a medical emphasis.

Most colleges and universities with a teacher education program offer special education certifications. These are important, but because they are offered at so many institutions we are not listing generalized special education programs unless there is a specific autism certificate or degree program.

== California ==
=== University of California, Davis ===
The [http://www.ucdmc.ucdavis.edu/MINDInstitute/ UC Davis M.I.N.D. Institute] (Medical Investigation of Neurodevelopmental Disorders) is an international, multidisciplinary research organization dedicated to understanding the causes and developing better treatments and ultimately cures for neurodevelopmental disorders. The institute is primarily a medical and biological sciences research center, '''not an educational services center'''.

=== University of California, Los Angeles ===
The [http://www.autism.ucla.edu/ UCLA Center for Autism Research and Treatment] (CART) was founded in 2003. UCLA CART is part of the [[Law:USA|STAART Network]].

=== University of California, Santa Barbara ===
The [http://kady.education.ucsb.edu/autism/ Koegel Autism Research & Training Center] at UCSB is a research, training, and education center. Graduate students tend to focus on therapies for autism. Postdoctoral fellowships are available for researchers.

== Michigan ==
=== Central Michigan University ===
The [http://www.cse.cmich.edu/SPE/autismgradcert.htm CMU Graduate Certificate in Autism] is a 18-credit certificate for graduate students seeking additional expertise in the field of autism. The certificate is offered through the '''Department of Counseling and Special Education'''. There is also an autism endorsement for special education teachers, offered separately.

== Minnesota ==
=== Hamline University ===
Hamline University offers an [http://www.hamline.edu/gse/academics/certs/asd.html Autism Spectrum Disorders Certificate Program] that goes beyond the standard special certifications for special education teachers. Credits earned in the ASD certificate program may be applied to a Master of Arts in Education.

== Pennsylvania ==
=== West Chester University of Pennsylvania ===
[http://www.wcupa.edu/SPARC/ West Chester University of Pennsylvania AUTISM/SPARC] (Southeastern Pennsylvania Autism Resource Center) is a service-oriented center.

== Texas ==
=== University of Texas at Austin ===
The UT Austin [http://www.edb.utexas.edu/education/ College of Education] offers both Ed.D and Ph.D programs in '''Autism and Developmental Disabilities''' that provide advanced training in the design, implementation, and evaluation of evidence-based services to individuals with autism and related developmental disabilities.

== Washington ==
=== University of Washington ===
The [http://depts.washington.edu/uwautism/ University of Washington Autism Center] provides diagnostic evaluations and multi-disciplinary intervention services for children with autism spectrum disorders. The Autism Center also provides a wide range of professional training opportunities.

== West Virginia ==
=== Marshall University ===
The [http://www.marshall.edu/coe/atc/ West Virginia Autism Training Center] provides training, information and support to West Virginians with autism, their families, educators, and other persons.

Glossary

Names, Terms, and Acronyms

When compiling this guide, we decided to list an acronym if it is more commonly used than the full phrase for which it stands. This guide is not a dictionary, though it should help most visitors read academic literature about autism.

This Glossary of Terms is provided as an overview of the names and terms appearing in autism research literature.

- A -

ABA (Applied Behavioral Analysis) - [tt] intensive one-on-one therapy based on a system of incentives and rewards. As of 2007, the most common therapy for severe autism. Associated with O. Ivar Lovaas

ADD / ADHD (Attention Deficit [Hyperactivity] Disorder) - [diag] sometimes comorbid with autism spectrum disorders; some individuals with Asperger’s Syndrome are initially diagnosed with ADHD

APA (American Psychiatric Association) - [org] professional organization for psychiatrists in the United States

ASA (Autism Society of America) - [org] the largest and best known autism advocacy organization in the United States. visit autism-society.org

ASD (Autism Spectrum Disorder) - [diag] any of a group of disorders / personality types defined by specific characteristics in the DSM or ICD. see Autism Diagnostic Criteria

AS or AD (Asperger’s Syndrome / Disorder) - [diag] a mild autism spectrum disorder, usually without language impairment but with mild to extreme social difficulties

Asperger, Hans - one of the first to describe mild forms of autism

assessment - [diag] similar to a diagnosis; an evaluation to determine is an individual has a specific condition. Some schools offer “assessments” that are not the same as diagnoses.

ASQ (Autism Screening Questionnaire) - [diag]

ASSQ (Asperger’s Syndrome Screening Questionnaire) - [diag]

Auditory Processing Disorder - [diag] often comorbid with autism spectrum disorders; often expressed as a sensitivity to sounds, especially background noises, but can also be an inability to focus on sounds

Autism Speaks - [org] advocacy organization

- B -

Bettelheim, Bruno - author of The Empty Fortress, responsible for promoting the “refrigerator mother” theory of autism. Discredited as a theorist and as a care provider by biographer Richard Pollak.

- C -

CAP (Comprehensive Autism Planning System) - [tt] an education plan for an autistic individual, with an emphasis on predictability

CARS (Childhood Autism Rating Scale) - [diag]

Central Coherence Theory - the ability to interpret a situation quickly

CLE (College Living Experience) - specialized support at a college or university for ASD students; promotes independence from parents and the ability to adapt to new settings

comorbidity - [diag] two or more conditions being diagnosed as co-existing; autism is often comorbid with other physical and psychological conditions

Cure Autism Now (CAN) - [org] advocacy organization. Now part of Autism Speaks.

- D -

diagnosis - [tt] a determination by a medical or mental health professional that one has a specific condition, disorder, or disease

DSM (Diagnostic and Statistical Manual of Mental Disorders of the APA) - [diag] guide used by mental health professionals to evaluate individuals.

- E -

eligibility - [law] legal term indicating an individual qualifies for special services mandated by law; might require a diagnosis, but not always.

Enactive Mind - the ability to enact, recreate, perceptions and experiences

- F -

Facilitated Communication (FC) - [tt] the use of an assistant to help a non-verbal individual communicate, usually with the use of a keyboard or chart of letters; discredited. Independent tests consistently suggest the facilitator leads the movements and “communication,” but rare examples of “focus assistance” seem possible.

Fombonne, Eric - epidemiologist responsible for peer-reviewed statistical measures of rates of autism

- G -

GFCF (Gluten Free, Casein Free Diet) - [tt] diet some suggest reduces the symptoms of autism; scientific literature on the topic is minimal and inconclusive

Grandin, Temple - professor of animal behavior known for her autobiographical books on autism

- H -

HFA (High-Functioning Autism) - [diag] generally used to describe autistic individuals with significant social and linguistic impairments, but roughly of average intelligence

hidden curriculum - the social lessons learned in academic settings; social values conveyed by teachers and other students

- I -

ICD (International Statistical Classification of Diseases and Related Health Problems) - [diag] see ICD Web Site and ICD-10 Online

IDEA (Individuals with Disabilities Education Act, 1975) - [law] see Legal Mandates

IDEIA (Individuals with Disabilities Education Improvement Act, 2004) - [law] see Legal Mandates

IEP (Individualized Education Plan/Program) - [law] see Legal Mandates

IQ (Intelligence Quotient) - [diag] number used to predict the ability to learn, often indicative of pattern recognition skills

- K -

Kanner, Leo - one of the first to document autism and describe it as a unique disorder or range of disorders

- L -

Lovaas, O. Ivar - leading proponent of ABA therapy

- M -

MAPS (Magill Action Planning System) - [tt]

mental retardation - [diag] often comorbid with classical autism; generally diagnosed when IQ is estimated to be 65 or lower on a 100-normed scale; current estimates are that half of ASD individuals have reduced intellectual abilities

MIND (Medical Investigation of Neurodevelopmental Disorders) - institute at the University of California, Davis, dedicated to researching autism and developmental disorders. Visit
M.I.N.D. Institute

- N -

NIMH (National Institute for Mental Health) - one of the National Institutes of Health (U.S.). Visit NIH Home Page

- O -

OCD (Obsessive Compulsive Disorder) - [diag] sometimes comorbid with autism spectrum disorders, but clinicians differ on if this is autism resembling OCD or if OCD exists apart from the autism symptoms

OSEP (Office of Special Education Programs) - [law] U.S. Dept. of Education office created to oversee special education

OSERS (Office of Special Education and Rehibilitation Services) - [law] U.S. Dept. of Education office

- P -

PBIS (Positive Behavior Interventions and Supports) - [tt]

PCP (Person-Centered Planning) - [tt]

PDD-NOS (Pervasive Developmental Disorder, Not Otherwise Specified) - [diag] disorders associated with autism; range from severe to similar to Asperger’s Syndrome

PECS (Picture Exchange Communication System) - [tt] use of photo or illustration flashcards to communicate

PTSD (Post-Traumatic Stress Disorder) - [diag]

- R -

RAD (Reactive Attachment Disorder) - [diag] a failure to form emotional attachments to primary care givers by five years of age; should not be confused with developmental disorders [ICD-10 94.1 and 94.2; DSM-IV 313.89]

RDI (Relationship Development Intervention) - [tt]

Rett’s Disorder - [diag] disorder caused by mutations in the gene MECP2 located on the X chromosome; almost exclusively affects girls, as male fetuses with the disorder rarely survive to term. Often included in texts as an autism spectrum disorder [ICD-10 84.2]

Rimland, Bernard - author of early text on autism, Autism: Syndrome and Implications for Neural Theory of Behavior

- S -

Sensory Integration Therapy - [tt] therapy meant to reduce sensitivity to external stimuli

SIB (Self-Injurious Behavior) - ranges from minor slapping of hands against the body to serious harm to the self

social cognition - the ability to understand social contexts and respond to them appropriately; autistic individuals demonstrate impaired social cognition

SWPBS (School-Wide Postive Behavior Supports) - [tt]

- T -

Theory of Mind (ToM) - ability to understand and interpret the actions of others; a theory of empathy

- V -

Verbal Behavior Intervention - [tt]

- W -

Wechsler Adult Intelligence Scale (WAIS) - [diag]

Wechsler Intelligence Scale for Children (WISC) - [diag]

WHO (World Health Organization) - [diag] visit WHO Online