The Autistic Place

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)