Michael Ritter conducted the first twin study of autism and estimated an incidence of 4.5 per 10,000, a very low number. Other researchers replicated this, becoming the oft-quoted baseline against which all future autism prevalence estimates would be compared in the coming decades.
Lorna Wing in Britain realized that the study left out most children likely to fall on the Asperger side of the spectrum. She had Hans Asperger’s paper translated from German to English and realized that Asperger had seen the same thing in his Vienna clinic that she was seeing. They were kids that nobody knew what to do with. They didn’t fit into Kanner’s narrow box. They were highly intelligent, but couldn’t pick up subtle social signals from the people they were talking to.
No diagnostic label on the books would enable them to access psychiatric services. There were many shades and hues along the autistic continuum, and all autistic people seemed to benefit from the same highly structured and supportive educational approaches, just as Asperger had predicted. Some children remained profoundly disabled, while others blossomed in unexpected ways when given an accommodating environment and special consideration by their teachers.
Infantile autism was added to the DSM-III in 1980, removing the swamp of schizophrenia, and establishing it as the core of a new category of “pervasive developmental disorders”. Autism was framed narrowly in terms of its two cardinal signs: “pervasive lack of responsiveness to other people” coupled with “resistance to change”. The onset was specified as before 30 months,” which ruled out virtually all the kids who would be later diagnosed with Asperger’s syndrome.
To accommodate kids who suffered a loss of skills after 30 months, there was “Childhood-Onset Pervasive Developmental Disorder” (COPDD). It was described as being even rarer than autism. Few clinicians bothered with the ill-conceived diagnosis.
Lorna then introduced a new diagnostic label – Asperger’s syndrome – as autism had so many negative connotations. She then wrote a case series in 1981. She changed the continuum to the autism spectrum, indicating that the continuum shades imperceptibly into garden-variety eccentricity – all the features that characterize Asperger’s syndrome can be found in varying degrees in the normal population.
By recasting the DSM criteria, children were excluded from support to get access to education, behavioural therapy, insurance reimbursement, and other essential services. By the end of the decade, however, the startling rise in diagnoses – and the alarms in the media that autism had become an epidemic – took all by surprise.
In the 1987 DSM-III-R, the word infantile was finally gone for good, and the COPDD diagnosis was also dropped. Crucially, the non-negotiable checklist had been replaced by a banquet of options to pick and choose from: at least 8 of the following 16 to include two items from A, one from B, and one from C. This ensured that fewer children would slip through the diagnostic net. The descriptions of these behaviours were also made less absolute. The new criteria could be applied to a larger and more diverse population. This triggered a significant rise in diagnoses, as it was better at picking up on cases of autism at every level.
However, PDD-NOS was subthreshold autism. It quickly eclipsed autistic disorder to become the most commonly used PDD diagnosis. Like Asperger’s syndrome, it was an autism diagnosis that didn’t contain the word autism and thus was more readily accepted by parents and healthcare workers. By the end of the process, autism had been transformed into something that Kanner would have barely recognized.
Estimates of autism prevalence began to increase worldwide after the publication of the DSM-III and DSM-III-R. This was no surprise to Lorna Wing: awareness of autism among professionals was dramatically growing at the same time that the boundaries of the condition were expanded, realigning themselves with the reality of the spectrum, to 1 in 100 children. In England, between 1990 and 2000, cases increased by an astonishing 22% on average per year and would never level off again.
A similar evolution was taking place in the USA, prompted by amendments to the Disabilities Education Act. Clinicians applied the diagnosis more readily and increased awareness among school teachers and staff. Few parents could afford Lovaas’s forty hours of ABA a week to achieve “full recovery”.
Assessment tools. TEACH introduced the Child Autism Rating Scale (CARS) in 1980, which was particularly good at distinguishing autism from other forms of developmental delay, such as intellectual disability. The scale was highly reliable and consistent, and its scores matched well with the assessment by other means. New raters could be trained in a single one-hour session. CARS also provided an accurate picture of the child’s strengths, which is crucial for developing an appropriate education plan. The second edition of CARS was introduced in 1988 and was easier to use and could be used to diagnose teenagers and adults.
An international team introduced the Autism Diagnostic Observation Schedule (ADOS) to assess communication, social interaction, and play in children and then extended it to teenagers and adults.
The clinical population was changing enormously, but the clinical outcome barely changed – 50% of the autistic population are mute and remained that way. Even high-IQ autistic adolescents sustained rudimentary social relationships. The outlook looked relentlessly monochrome.
Asperger’s syndrome knowledge was still in its infancy as it shaded into subclinical eccentricity – was it truly a mental disorder or a common personality type? Asperger’s was a disorder of social impairment subject to social context.
The term Aspie would become a badge of honour and defiant pride within a decade. The genie of autistic intelligence was poised to escape the bottle in which it had been trapped for 50 years. Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS) and Asperger’s syndrome were added to the manual in 1994, in the DSM-IV. This resulted in more families gaining access to services.
The DSM-IV was an international smash that earned $100 million. It was a 900-page behemoth that found its way everywhere. Instead of requiring that a child display impairments in social interaction, communication, and behaviour before getting a diagnosis of PDD-NOS, the criteria substituted the word “or” for “and”. This typo went uncorrected for 6 years, and about 75% of children identified as not having the disorder (true negatives) were incorrectly identified as having it, creating a true autism epidemic and a statistical nightmare.
DSM-5. After 14 years of deliberation, in May 2013, the American Psychiatric Association published the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders, the primary text for diagnosing mental disorders. The previous edition, DSM-IV, included the diagnostic characteristics and criteria for Asperger’s Disorder as an expression of Pervasive Development Disorder (PDD).
The first noticeable change in DSM-5 is that the APA has dispensed with Roman numerals in the title. The second change is dispensing with the term Pervasive Developmental Disorder, which is replaced with the term Autism Spectrum Disorder (ASD). This broad term is preferred by clinicians and academics worldwide and illustrates the point that the diagnosis of mental disorders is not an exact science and that there is an evolving conceptualization of disorders such as autism and Asperger’s syndrome.
Although the eponymous term ‘Asperger’s syndrome has been in clinical and common usage since the early 1980s, the DSM-5 replaced this simple term with the new diagnostic category of Autism Spectrum Disorder Level 1, without accompanying intellectual or language impairment, a much more lengthy and cumbersome term. The rationale is that ASD can be conceptualized as a dimensional rather than a categorical concept and that a single umbrella term of ASD, with specific information on the level of expression, is more accurate and consistent with the literature and clinical experience.
Thus, DSM-5 merges the different subtypes of PDD into a single category of ASD on the assumption that they cannot be differentiated from one another, and the criteria, especially for Asperger’s syndrome, are not consistently applied across different clinics and treatment centers.
In clinical practice, most use ASD level 1 (Asperger’s syndrome) so that parents, teachers, and therapists can use a term that is often understood by the general public. It is also used to seek more information from the Internet, published books, and research articles before 2013.
Collapsing three dimensions of ASD into two. DSM-IV had three diagnostic dimensions for PDD: a quantitative impairment in social interaction, a qualitative impairment in communication, and restricted and repetitive behaviour. DSM-5 combines social and communication. DSM-5 has effectively reduced the 12 symptoms of PDD to seven symptoms of ASD.
DSM-5 uses stricter diagnostic criteria than DSM-IV, so fewer children and adults receive the diagnosis using DSM-5—the range is 9-52% less, with a median of 32%. The consensus is that the DSM-5 criteria should be relaxed. The most frequent reason is that they did not have symptom A2 (deficits in nonverbal social communication) or that they had only one of the four categories of criterion B.
Removal of the term Asperger’s syndrome from DSM-5 will negatively affect the self-identity of adults who have benefited from the term, created self-support groups, and accessed literature and Internet support groups based on common characteristics and experiences. The majority of adults with ASD and their families want to maintain the term.
The term Asperger’s syndrome generates a mostly neutral understanding and attitude in the general community and media. They are less likely to reject that diagnosis due to a negative preconception or a perception of having a severe or debilitating mental disorder. When an adult who has previously had a diagnosis of Asperger’s syndrome begins describing him or herself as having autism, they may not be believed, as the general population considers the term autism to be associated with severe disability.
Parents of school-age children could be reluctant to contemplate a diagnostic assessment for autism, as it implies very high support needs and a very limited prognosis.
Society may gradually change the concept of autism to reflect the dimensional characteristics in DSM-5, but this will take decades. Some people may, therefore, remain undiagnosed and ineligible for appropriate support, treatment, understanding, and services.
This book and High-Functioning Asperger’s
Autism Spectrum Disorder Level 1, without accompanying intellectual or language impairment, is lengthy and cumbersome. ASD level 1 is hard to relate to. If Asperger’s is not available, some clinicians use Autism Spectrum Conditions (ASC) as the corresponding label. Autism Disorder implies that there is only an abnormality.
I have arbitrarily decided to use the label Asperger’s – no autism, no syndrome, no disorder, no condition, no ASD level 1 – it seems the simplest term that everyone can understand and relate to. Asperger’s is abbreviated to AS in this book.
By definition, all have normal intellectual and linguistic ability.
The IQ (ignore discussions of IQ for the moment) necessary to be high-functioning Asperger’s is thought to be about 120, the threshold IQ for genius. Having a higher IQ is unlikely to have additional benefits. This ignores other “intelligences” for which genius is possible but not measured on an IQ test.
The International Classification of Diseases (ICD). Published by the World Health Organization, the ICD-11 (the eleventh edition) provides an alternative text and diagnostic criteria for Autism Spectrum Disorders, which continues to include the subtype of Asperger’s syndrome.
