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:
American Psychiatric Association
DSM-IV-TR Criteria for Autism
Autism Spectrum is diagnostic criteria 299.00 in the DSM-IV Revised, 2000.
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):
World Health Organization
The ICD-10 Criteria for Autism
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.
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.
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.
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.
F84.8: Other pervasive developmental disorders
F84.9: Pervasive developmental disorder, unspecified (PDD-NOS, not otherwise specified)
Asperger's Syndrome
Characteristics of Asperger’s syndrome as listed by Wing (1981), quoted in Bowler (2007):
Testing for Asperger’s
Asperger’s scales and instruments used to evaluate children:
Asperger’s scales and instruments used to evaluate adults:
Mental Health Professionals
Lack Consensus on Autism Definition
Because autism is mentioned specifically in various disabilities-related laws and regulations, schools are expected to know what autism is and make accommodations available accordingly. A pragmatic approach is likely to be supported by parents and students, as well. Psychologist Alexander Durig (1996) observes that parents and clinicians working with students diagnosed as autistic are less concerned with the causes of autism than they are they best treatments.
As the history of the diagnosis illustrates, some students diagnosed with autism are not 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. The challenge will be determining at what point a diagnosis reflects such a minor condition as to not be a significant disability.
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.
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
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.
Depending on state laws, which might attempt to define autism in the absence of a clear federal definition, a school might be forced to adopt a definition of autism that embraces a particular view of the disorder. 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.
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.
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.
The Waterhouse autism categories are:
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.
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)
American Psychiatric Association
DSM-IV-TR Criteria for Autism
Autism Spectrum is diagnostic criteria 299.00 in the DSM-IV Revised, 2000.
- 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)
- qualitative impairment in social interaction, as manifested by at least two of the following:
- 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
- failure to develop peer relationships appropriate to developmental level
- a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people, (e.g., by a lack of showing, bringing, or pointing out objects of interest to other people)
- lack of social or emotional reciprocity (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 )
- qualitative impairments in communication as manifested by at least one of the following:
- delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime)
- in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others
- stereotyped and repetitive use of language or idiosyncratic language
- lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level
- restricted repetitive and stereotyped patterns of behavior, interests and activities, as manifested by at least two of the following:
- encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
- apparently inflexible adherence to specific, nonfunctional routines or rituals
- stereotyped and repetitive motor mannerisms (e.g hand or finger flapping or twisting, or complex whole-body movements)
- persistent preoccupation with parts of objects
- qualitative impairment in social interaction, as manifested by at least two of the following:
- Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years:
- social interaction
- language as used in social communication
- symbolic or imaginative play
- 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):
- Qualitative impairment in social interaction, as manifested by at least two of the following:
- 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
- failure to develop peer relationships appropriate to developmental level
- a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g. by a lack of showing, bringing, or pointing out objects of interest to other people)
- lack of social or emotional reciprocity.
- Restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:
- encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
- apparently inflexible adherence to specific, non-functional routines or rituals
- stereotyped and repetitive motor mannerisms (e.g. hand or finger flapping or twisting, or complex whole-body movements)
- persistent preoccupation with parts of objects.
- The disturbance causes clinically significant impairment in social, occupational, or other important areas of functioning.
- 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.)
- 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.
- Criteria are not met for another specific Pervasive Developmental Disorder or Schizophrenia.
World Health Organization
The ICD-10 Criteria for Autism
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)
Asperger's Syndrome
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
- 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.
- Narrow interest (at least one of the following):
- exclusion of other activities
- repetitive adherence
- more rote than meaning.
- 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
- 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
- Non-verbal communication problems (at least one of the following):
- limited use of gestures
- clumsy/gauche body language
- limited facial expression
- peculiar, stiff gaze
- Motor clumsiness:
- poor performance in neurodevelopmental test.
Testing for Asperger’s
Asperger’s scales and instruments used to evaluate children:
- ASAS or Australian Scale for Asperger’s Syndrome (Garnett and Attwood 1998)
- ASDI or Asperger’s Syndrome Diagnostic Interview (Gillberg et al 2001)
- ASDS or Asperger Syndrome Diagnostic Scale (Myles, Bock and Simpson 2001)
- ASSQ or Autism Spectrum Screening Questionnaire (Ehlers, Gillberg and Wing 1999)
- CAST or Childhood Asperger Syndrome Test (Scott et al. 2002; Williams et al. 2005)
- GADS or Gilliam Asperger Disorder Scale (Gilliam 2002)
- KADI or Krug Asperger’s Disorder Index (Krug and Arick 2002)
Asperger’s scales and instruments used to evaluate adults:
- ASQ or Autism Spectrum Quotient (Baron-Cohen e al. 2001b; Woodbury Smith et al. 2005)
- EQ or Empathy Quotient (Baron-Cohen and Wheelwright 2004)
- The Reading the Mind in the Eyes Test (Rutherford, Baron-Cohen and Wheelwright 2002)
- FQ or Friendship Questionnaire (Baron-Cohen and Wheelwright 2003)
- ASDASQ or Autism Spectrum Disorders in Adults Screening Questionnaire (Nylander and Gillberg 2001).
Mental Health Professionals
Lack Consensus on Autism Definition
Because autism is mentioned specifically in various disabilities-related laws and regulations, schools are expected to know what autism is and make accommodations available accordingly. A pragmatic approach is likely to be supported by parents and students, as well. Psychologist Alexander Durig (1996) observes that parents and clinicians working with students 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)A search of university requirements reveals that some universities accept a physician’s diagnosis, as well. There is no clear national legal requirement covering the qualifications of a health professional providing the diagnosis of “autistic” on behalf of a university student.
As the history of the diagnosis illustrates, some students diagnosed with autism are not 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. The challenge will be determining at what point a diagnosis reflects such a minor condition as to not be a significant disability.
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: 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
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)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)It is true that autistic students likely to gain admission to colleges and universities are generally categorized as high-functioning autistic (HFA) individuals. But 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). 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.
Depending on state laws, which might attempt to define autism in the absence of a clear federal definition, a school might be forced to adopt a definition of autism that embraces a particular view of the disorder. 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 spectrumIt 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.
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)
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.Universities seeking pragmatic definitions of autism might consider physical causes a justification for accommodations. Using a physical definition, or set of definitions, for autism would certainly provide legal legitimacy for accommodations and special services while also allowing universities to set limits on the types of services provided. Pragmatism calls for balancing what might be an ethical desire to accommodate every student 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.
…. 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)
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)
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….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.”
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)
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:
(Durig, 1996, p. 102)
- 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