Introduction

What is the TAP Guide to Autism?
The Autistic Place Guide to Autism is a guide meant for educators, parents, and students. It is not a general purpose guide to autism, though a great deal of general interest information is included.

Why Target Education?
Educational settings are highly regulated, especially the K-12 system in the United States. Understanding how autism spectrum disorders are defined by these regulations and to which services students are legally entitled should help our readers.

The Autism Spectrum

Many people assume that “autism spectrum disorder” (ASD) is a phrase from medical texts or an official psychiatric diagnosis from the Diagnostic and Statistical Manual of Mental Disorders. Neither is the case at the present time. The use of “spectrum” began with clinicians and educators who found that individuals with different diagnoses had some similarities.

One version of the traditional spectrum is as follows:

Because Rett’s and Disintegrative Disorder involve a measurable loss of brain function, as revealed by magnetic resonance imaging (MRI), some have argued that these conditions are physically different from autism disorders. This is an area open to debate, however.

As Olga Bogdashina reminds us, every autisitc individual is different, whether we use the spectrum metaphor or not:

The ways in which any of the features are manifested vary from one child to another, and for the same child different aspects of the behavior pattern may vary at different ages. Usually no one person has all the characteristics at the same time or at the same degree of severity. (Bogdashina, 2006, p. 26)

Some autistic children sit silently, others are more likely to scream and run about a room. There is no one “autism” parents and educators must address, just as no two “neurotypical” children are the same.

For many parents, educators, and clinicians, the term “spectrum” refers primarily to the social and linguistic skills of ASD individuals. At one extreme, we find the child apparently isolated from the world. At the other extreme we have gifted students with curious preoccupations. Both might be considered “autistic” — though there’s little doubt they experience their worlds, especially social interactions, differently.

Clinicians and education experts use several terms to describe spaces along the autism spectrum:

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)

The terms adopted by clinicians, officially endorsed by the American Psychiatric Association or not, are attempts to capture individual differences. An ASD individual might be an example of “classical autism” or a gifted student with Asperger’s syndrome, able to “blend in” with peers.

Asperger’s specialist Tony Attwood has written about the different ways clinicians and researchers discuss ASDs. As Attwood notes, there is an ongoing effort by the psychiatric field to refine definitions and understandings of ASDs.

There was a recognition in both diagnostic manuals [ICD-10, World Health Organization 1993 and DSM-IV, American Psychiatric Association 1994] that autism, or Pervasive Development Disorder, is a heterogeneous disorder and that there appear to be several subtypes, one of which is Asperger’s syndrome. (Attwood, 2007, p. 36)

Psychologist Alexander Durig’s 1996 book Autism and the Crisis of Meaning asks if there are gradations of autism. This book was published just as clinicians were beginning to adopt the spectrum metaphor.

Traditionally, we have viewed individuals as either Autistic, high-functioning Autistic, or normative. But does the gradation from Autistic to high-functioning Autistic have to stop somewhere?... In other words, could there possibly be some people with strong Autistic perception who are so high functioning that they have always appeared, for the most part, normative to others? (Durig, 1996, p. 99)

Durig’s Typology of Mind States

Durig has taken the spectrum notion further by suggesting what we consider autism is merely a “differed” way of perceiving the world. Individuals might have an “autistic perception” that gives them different insights.

[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)

Durig’s conclusions are thought provoking. What if the underlying conditions causing what we consider “autism” are liniked to other characteristics?

The possible existence of slight Autism may explain a wide range of phenomena that are often chalked up to learning disabilities, mental illness, sociopathy, eccentricity, tempermental [sic] creative genius, or saintliness. (Durig, 1996, p. 102)

There is little doubt that dozens of “spectrums” comprise human behavior. We could, and have, developed dozens of scales describing our traits. If these scales help us understand and appreciate each other, then scales serve an important purpose. Individuals with ASDs are different. Placing a person’s traits on a scale is merely a way to explain those differences.

We must never forget that people aren’t scales, numbers, and other measures. When we treat a student as a composite of scores instead of an individual, we lose sight of the things that matter most.

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

HFA vs. Asperger’s Syndrome

Can we group developmental disorders together, as a spectrum? The Autism Society of America explored this issue in 2006:

Some professionals and families believe that the definition of autism should be inclusive of diagnoses such as Asperger’s and other Pervasive Developmental Disorders. Proponents of this view may argue that since there are no biological tests for either autism or Asperger’s, it is difficult to determine a diagnosis. They may further extend their argument into the service arena, as schools, insurance companies and social service agencies all use diagnostic guidelines for eligibility criteria. To obtain services, an individual must meet guidelines which usually do not recognize Asperger's as a form of autism. The family or individual, therefore, is unable to receive services because he does not possess the correct label.

Those who believe Asperger’s is not a form of autism cite the current DSM-IV which clearly states that Asperger's is a distinct diagnosis. They argue that by creating a distinction between autism and Asperger’s, one paves the way for more appropriate education and treatment. Other professionals argue that there are significant differences in early history and outcome between an individual with autism and one with Asperger’s. (Autism Society of America Web site, 2006)

The spectrum metaphor and the myriad of diagnostic terms applied to developmental disorders has resulted in a debate: where are the boundaries between disorders?

Daniel Rosenn, M.D., developed a triagular diagram of the autism spectrum (1997). This diagram is now ubiquitous in texts and presentations on Asperger’s syndrome. Stephen Shore’s autobiography Beyond the Wall (2003) makes use of this diagram to illustrate where Shore places himself on the spectrum.

This diagram poses a problem, according to some clinicians. Rosenn and many others place HFA and AS together, implying there is no distinction. Research, however, does show a difference — but these findings depend on how autism is defined.

Some studies have found differences between individuals with diagnoses of “high-functioning autism” and those with Asperger’s syndrome. Patricia Howlin compiled the differences from various studies for comparison.

Howlin’s meta-analysis of more than a dozen studies presents the following findings:

Cognitive and Language Delays

In general, individuals diagnosed by clinicians with HFA experienced more significant language delays than those diagnosed with AS. By their late teens, language abilities are comparable between the groups.

A second distinction made by the DSM-IV concerns cognitive ability. While some individuals with autism experience mental retardation, by definition a person with Asperger’s can not possess a “clinically significant” cognitive delay. This is not to imply that all individuals with autism also have mental retardation. Some do and some do not, but a person with Asperger’s possesses an average to above average intelligence. (Autism Society of America Web site, 2006)

The cognitive delays associated with HFA are somehow overcome in time. This means observable differences between HFA and AS are more pronounced before the teenage years.

Behavioral and Psychiatric Issues

Studies analyzed by Howlin recorded a far greater incidence of psychiatric and behavioral issues among AS individuals than those diagnosed with HFA. While the HFA individuals were more rigid, literal, and socially limited, the AS individuals had learned to not only adapt but to manipulate and create with a great deal of skill.

The HFA individuals liked organized routines. Behavior issues including outbursts were usually linked to changes in routine. AS behavior issues were less defined by the studies analyzed, but included verbal and physical outbursts. Aggression might be a differentiating characteristic.

Depression is more common among AS individuals than the general population. In my own observations and experiences, AS individuals do have a greater awareness of social situations than those diagnosed as HFA. I believe it is likely that this greater social awareness leads to a greater sense of separation and isolation. Laura Schreibman offers a similar explanation for this difference:

They [AS individuals] know they have to be taught how to socialize in ways that come so naturally and effortlessly for other people. In fact, two-thirds of adolescents with Asperger’s have a secondary mood disorder. In contrast, it is more likely that a child with high-functioning autism will see his accomplishments as successes and be happy about them. (Schreibman, 2005, p. 62)

Fading Differences

Currently, it is impossible to prove AS and HFA are neurologically different. Though differences between AS and HFA individuals are observed during youth, those differences seem to fade over time. We do not know why this is.

Early-history differences are evident between the disorders, with children with Asperger syndrome showing less severity and better language ability in the preschool years than children with HFA, by definition (Ozonoff et al. 2000). Follow-up studies demonstrate similar trajectories in outcome, however…. Similarly, Ozonoff et al. (2000) found that children with Asperger syndrome required fewer years of special education and had a slightly better outcome than children with HFA, but overall found very few differences between the subtypes…. [T]he jury is still out on whether the two are functionally different… (Ozonoff et al., 2003, p. 10)

Though the performance differences fade, the distinctions found by Howlin do remain. It could be that HFA individuals learn to “mimic” normal behaviors over time, but only to the extent they match the social skill levels associated with Asperger’s Syndrome. At this time, this theory has not been tested and neurological differences between AS and HFA individuals are only now being examined.

Diagnosing Autism

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 in Education

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)

Appendices

The supporting materials...