The concept of neurodiversity divides the community of autism

At the annual meeting of the International Society for Research on Autism (INSAR) in Montreal, Canada, this week, one of the topics likely to be widely debated is the concept of neurodiversity. It divides the autism community, but it's not mandatory.

The term "neurodiversity" has gained popularity in recent years, but was used for the first time by Judy Singer, an Australian social scientist, herself autistic. Atlantic in 1998.

Neurodiversity is linked to the more familiar concept of biodiversity, and both are respectful ways of thinking about our planet and our communities. The notion of neurodiversity is very compatible with civil rights advocacy for minorities to gain dignity and acceptance and not be pathologized. And while the neurodiversity movement recognizes that parents or people with autism may choose to try different interventions for specific symptoms that may be causing the suffering, it challenges the hypothesis by default that autism itself is a disease or disorder that must be eradicated, prevented, treated or cured. .

Many people with autism, especially those with intact language and no learning disabilities to defend their rights, have adopted the neurodiversity framework, coining the term "neurotypical" to describe the brain of the majority and considering autism as an example of diversity as a whole. of all possible diverse brains, none of which are "normal" and which are simply different.

They argue that in highly social and unpredictable environments, some of their differences may manifest themselves in the form of disabilities, while in more autism-friendly environments, disabilities may be minimized, allowing children to become disabled. other differences of flourishing as talents. The perspective of neurodiversity reminds us that disability and even disorder can be related to the person-environment fit. To quote an autistic person: "We are freshwater fish in salt water. Put us in fresh water and we will work very well. Put us in salt water and we fight to survive. "

There are also those who, while embracing certain aspects of the concept of neurodiversity applied to autism, argue that the serious problems faced by many autistic people fit better into a more classical medical model. Many of them are parents of autistic children or people with autism who struggle in any environment, who have almost no language, who have serious difficulties in their lives. learning, who suffer from gastrointestinal pain or epilepsy, who seem to be anxious for no apparent reason or take it to themselves. or others.

Many who adopt the medical model of autism are calling for the prevention and treatment of serious disabilities that may be associated with autism. On the other hand, those who support neurodiversity see in such language a threat to the existence of autistic people, which is no different from that of eugenics.

No wonder this concept causes such divisions. However, I argue that these views are not mutually exclusive and that we can integrate both by recognizing that autism is extremely heterogeneous.

Before talking about heterogeneity, a technical term refers to terminology: the term "disorder" is used when an individual exhibits symptoms that cause dysfunction and whose cause is unknown, while the term "disease" is used when a disorder can be attributed to a disorder. specific causal mechanism. The term "disability" is used when an individual is below average on a standardized operating measure and when this causes suffering in a particular environment. In contrast, the term "difference" simply refers to the variation of a trait, such as having blue or brown eyes.

So what is the huge heterogeneity of the spectrum of autism? One source of this is in language and intelligence: as I have indicated, some people with autism do not have functional language and have significant developmental delay (which I would consider as disorders), others have lighter learning difficulties, while others have a medium or excellent difficulty level. language skills and average or even high IQ.

All individuals in the autistic spectrum share common social communication difficulties (both are disabilities), difficulties coping with unexpected change (another disability), a love of repetition, or a "need for similarity" ", Unusually narrow interests, and hyper-hypo-sensory sensory disturbances (all examples of difference). Autism can also be associated with cognitive strengths and even talents, especially with regard to attention and memory for details, as well as a strong desire to detect patterns (this are all differences). The way in which these manifest themselves is likely to be strongly influenced by language and IQ.

The other source of tremendous heterogeneity is that autism is often accompanied by concomitant conditions. I mentioned gastrointestinal pain or epilepsy (both examples of disorders and sometimes diseases), dyspraxia, ADHD and dyslexia (all examples of disability), as well as the Anxiety and depression (two examples of mental health problems). This is just a partial list. A recent study shows that 50% of people with autism have at least four concurrent illnesses (including language or learning disabilities) and over 95% of children with autism have at least one disease in addition to autism.

The interest of this for the debate on neurodiversity is that if we get into the wide range of features that we see in autism, we will find differences and handicaps (both compatible with the framework of neurodiversity), and we will find examples of disorders and even diseases. which are more compatible with a medical model than a neurodiversity model.

With respect to scientific evidence, there is evidence of both neurodiversity and disorder. For example, at the genetic level, about 5 to 15% of the variance in autism can be attributed to rare genetic variants / mutations, many of which are the cause not only of autism, but also of severe developmental delays ( disorder), while about 10 to 50% of the variance of autism can be attributed to common genetic variants such as single nucleotide polymorphisms (SNPs), which simply reflect individual differences or natural variations.

At the neural level, some areas of the autistic brain (such as the amygdala, in childhood) are larger and others (such as the posterior section of the corpus callosum) are smaller. These are evidence of difference but not necessarily disorder. Early proliferation of the brain is another sign of difference, but not necessarily disorder.

Post mortem studies on the autistic brain reveal a larger number of neurons in the frontal lobe, suggesting that there could be reduced apoptosis (or pruning of neuronal connections) in the brain. autism, but again, it could simply be evidence of difference rather than disorder. On the other hand, structural differences in the linguistic areas of the brain in people with low verbal ability are likely to be a sign of disorder.

Functional MRI studies (fMRI) sometimes show more or less significant brain activity during different tasks. Again, this can be interpreted in terms of difference and disability, but not of obvious trouble. On the other hand, when people with autism have demonstrable epilepsy with a clear electrophysiological signature, it is a sign of disorder, or even illness.

At the behavioral and cognitive levels, people with autism have both differences, signs of disability, and disorders. For example, young children with autism may be looking for non-social stimuli longer than social stimuli, and autistic people may show their best performance on the IQ tests of the Block Design subtest, perhaps reflecting their strong ability to pay attention to details and disassemble complex information. in its components.

These are just differences consistent with the neurodiversity model. Aspects of social cognition reflect the areas of disability in autism and are often the reason why they seek and receive a diagnosis. But if an autistic person has severe learning difficulties or is very low verbal (defined as less than 30 words), it can be said to go beyond neurodiversity and is more compatible with the medical model.

In summary, all the terms "disorder", "disability", "difference" and "illness" apply to different forms of autism or concurrent conditions. Neurodiversity is a fact of nature; our brains are all different. It is therefore useless to be a negationist of neurodiversity, any more than to be a denier of biodiversity. But by examining with precision the heterogeneity of autism, we can find that sometimes the model of neurodiversity fits very well with autism, and that sometimes the disorder / medical model is a better explanation.

What's interesting in the neurodiversity model is that it does not do the pathology and does not focus disproportionately on what the person is struggling with, but rather adopts a more balanced vision to pay attention equal to what the person can do. In addition, it recognizes that genetic variations or other types of biological variation are intrinsic to the identity of individuals, to their sense of self and to their identity, which must be respected in the same way as any other form of diversity, such as than sex. But to encompass the full spectrum of autism, we must also leave room for the medical model.