Translated by Hunter Mclean
A text co-written with Mélanie Ouimet, founder of the Neurodiversity Salon (http://neurodiversite.com/) and the Facebook page Neurodiversity- Autism and other forms of intelligence, autistic person and editor for the Huffington post.
The idea that the autistic continuum is too large and too broad is a topic of discussion that frequently comes up in the world of autism. We often hear that there are too many major differences between different individuals with autism.
This series of three texts will attempt to lay the groundwork on this issue by addressing the medical history of autism, the progression of assessment criteria and diagnostics, and the inclusion of autistic people.
In the DSM-4, autism is classified as PDD and is subdivided into several categories: Autistic disorder (classical autism or Kanner), Asperger’s disorder, PDD non-specific, Rett Syndrome and childhood disintegrative disorder.
These categories were used to define autistics according to different criteria:
1) Alterations in social interactions
2) Alterations in communication
3) Restricted interests
Asperger’s syndrome was an autistic disorder without alterations in communication and without delay in the development of language.
Since these two categories did not represent all possible cases of autism, non-specific PDD was created for persons who did not meet the criteria for autism disorder but had similar difficulties.
Finally, Rett Syndrome and the disintegrative disorder of childhood are degenerative neurocognitive diseases, that is to say that the child has a typical development until a certain age before regressing. Two diagnoses have been removed from DSM-5 since they have nothing in common with autism except some subjective and stereotyped manifestations.
The term « light » also appeared to describe Asperger’s syndrome compared to the classical autistic disorder since Asperger syndrome has only two criteria compared to three for autistic disorder.
In sum, with subjective criteria and practical cases not found in the three categories of autism, the speakers had to qualify themselves autistic. Thus, the term « high level » was born to refer to autistic persons with no intellectual disability but with the criteria for autistic disorder. The term « light » also appeared to describe Asperger’s syndrome compared to the classical autistic disorder since Asperger’s syndrome has only two criteria compared to three for autism disorder.
However, as the practical cases did not always meet these criteria, combined with the new scientific findings, the categorization of autism was modified with the DSM-5.
DSM-5 (2013 to present) includes autism (Autistic Disorder, Asperger’s Syndrome and non-specific PDD) under the name Autism Spectrum Disorder (ASD).
Thus, researchers recognize that the DSM-4 categories are in fact a single medical condition with different levels for both diagnostic criteria: communication and social interactions, and restricted or repetitive behaviors, activities and interests. Significantly, alterations in communication are now universal to all autistics (including Asperger’s). Thus, according to the qualitative severity of the alterations to the criteria and the need for support and accommodation, autistics are classified as « low (highly altered or great need) at high level (weakly altered or low need) » for each criterion. An autistic can therefore have all possible combinations of low and high level ranging from matching for both criteria or low levels for one criterion and high level for the other. Thus, this representation on a spectrum and personalized for each autistic person allows the theory to respect the practice.
Finally, Dr. Laurent Mottron hypothesized that the spectrum of autism would be co-mposed of three categories of autism: syndromic, prototypic and asperger. This hypothesis is the result, among other things, of several studies based on objective and quantifiable tests.
Autism is not the source of the considerable support needed by autistic people, but it is the specific syndrome combined with intellectual disability that necessitates it.
Syndromic autism accounts for about 15% of autism diagnoses. These « autistics » are called heavy cases. However, it is not a matter of autism properly speaking: their cognitive functioning differs from that of prototypical autism. Autism is not the source of the considerable support needed by syndromic autistic people, but it is the specific autistic syndrome, combined with a distinct intellectual disability that necessitates it.
Prototypic autism accounts for about 70% of diagnoses. It represents nonverbal autism or with a delayed use of language to communicate and its axis is on perception and the sensory.
Finally, Aspergers, about 15% of diagnoses, are autistic as described by Asperger, i.e. autistics with an overdeveloped capacity for vocabulary and language and difficulties in coordination or motor skills.
For prototypical autism or Asperger’s, it is the development of the brain and the use of different areas of the brain that influence socialization and communication, specific interests as well as the peaks of performance of each category.
In conclusion, autism, until recently with Dr. Mottron and his team, was evaluated on subjective and qualitative criteria, by non-autistic professionals with non-autistic concepts and theories to qualify the autistic. In short, it is as if one were to ask a sighted person to assess « blindness » about the ability of a visually impaired person to walk, jump or have eye contact in a discussion. This situation has created significant and detrimental deviations for autism and these will be the subject of the second part.
NeuroTribes. The legacy of autisme and the future of neurodiversity, Steve Silberman, (Penguin books 2016)
L’intervention précoce pour enfants autistes. Nouveaux principes pour soutenir une autre intelligence, Laurent Mottron, (Mardaga, 2016)
Sur le spectre-volume 1, Magazine du groupe de recherche en neurosciences de l’autisme de Montréal, 2016, http://www.autismresearchgroupmontreal.ca/SurLeSpectre/Sur_le_spectre_no_1_2016-04.pdf