The world is surprisingly quiet regarding the issue of the definition of autism.
1) The fact remains that being officially identified as autistic is still called “getting a diagnosis”, implying that autism is a disorder or disease. This description needs to change.
2) Being listed in the DSM (Diagnostic and Statistical Manual of Mental Disorders) associates autism with mental disorders, when it is not. Being listed in the International Statistical Classification of Diseases and Related Health Problems (ICD) associates autism with a health disorder when it is not. There should be some other better place where autism can be listed in.
3) Having a fixed static definition (in the form of a diagnosis) does not take into account that support needs can change over one’s lifetime and that there is room for personal growth/change (e.g. many autistics’ support needs decrease naturally while female autistics may experience more sensory issues as they mature). The diagnostic criteria for autism has also changed over time. We should find a more responsive way to describe the support needs of autistic people over their lifespan and accept that autism is not always a lifelong disability.
4) Covering the entire spectrum of autism with just one diagnostic term is counterproductive. It is better to split people who can build successful mainstream careers and people who need help to perform their daily activities into separate labels to reflect different support needs. This will help prevent autistic advocates and caregivers from quarreling about the correct way to support autistics when they are actually discussing about different groups of people with different needs. It will also spare autistics with no/low support needs from unwanted discrimination by being associated with those with complex or high support needs.
5) There are at least 4 different types of autism that go beyond functioning levels. For instance, autism with accompanying intellectual disability has different genetic causes from autism alone. Neurological research has also uncovered different autism sub-types based on brain connectivity. Research is urgently needed in this area to obtain both objective neuroimaging data as well as subjective experiences so that we can learn how best to identify, define and support the different variations of autism. This is especially true for research into autistic women which has historically been neglected.
6) There are people who are better described as having an antisocial personality disorder than autism. However, since the diagnosis for the former requires the person to be at least age 18, it is possible that a misdiagnosis of autism can occur especially if the person exhibits sensory and behavioural co-morbids usually associated with autism. It is essential to foster awareness of this issue and install safeguards to prevent it. Socially destructive non-autistic people passing off as autistic will not only cause severe reputational damage to the autistic community but will also allow such people to get away scot-free for much of their bad behaviour.
7) It is possible that a person can have both autism and a personality disorder at the same time. How can society best manage and support such people?
8) Autistic children who receive early intervention may still be autistic but no longer meet the criteria of diagnosis. Decisions on providing support are often tied to a formal diagnosis. We should find a way to support people based on their actual support needs rather than a diagnosis (which may no longer reflect their present needs due to the passage of time).
9) It is not appropriate to use the medical model on autistics with low support needs; we should examine ways to change how we diagnose autism.
The mainstream understanding of autism is that it is a lifelong disability that cannot be changed is problematic: it implies that efforts to support autistics to overcome their limitations are futile. Yet who Eric was in 2000 and who Eric was in 2020 is very different – so different that most people find it hard to perceive Eric as autistic and only those who knew him from his youth and childhood can be fully convinced. This is an example of how the way that mainstream society understands and supports autistics is fundamentally flawed and needs to be revised.
Take the case of some hidden autistics who have grown and overcame their limitations, vanishing from the autism community to get high-paying jobs, start families and pursue other achievements that they could not in their earlier days. [Other than some of them who have contacted me privately over the years, I have also heard that many professionals in the IT, medical, financial and legal industries are autistic but they chose not to get a diagnosis.] After all, why identify as autistic if we get no support and benefits, but suffer from discrimination by insurers and potential clients/employers?
Perhaps they may return to the autism community again, but this time as a caregiver with an autistic child. And the cycle then repeats when that child grows up, adapts and disappears quietly from the autism community. Meanwhile, autism professionals and mainstream society remain oblivious to all these by focusing only on autistics with high support needs and their stubborn insistence that autism is lifelong and unchanging.
While autism is not something to “recover” from, it is not necessarily a life-long disability that people are stuck with. We need to redefine autism and reexamine our relationship to it if we wish to make fundamental breakthroughs on autism support.