• OMSG Editor

Meeting in the Middle for Autism

Updated: Mar 16, 2021

By Thomas Johnson, St John's College

Autism. It’s one of those things we often hear about on the TV and in the news. Sometimes it’s a disability, but sometimes it’s not. It’s a hot topic on modern shows like ‘Undateables,’ but also something we connect to some of history’s most famous mathematicians. And isn’t Sherlock Holmes on BBC a ‘bit autistic’?

Uniquely positioned and often misunderstood, autism is a condition on the fringes of mental illness; a developmental disorder, characterised by impaired social communication and interaction. And yet, many autistic people would argue that their autism is intrinsic to their personhood and an integral part of who they are. Despite this conflict, autism research is accelerating, and effective medical intervention for autism is less than a decade away. This begs the question: can a balance be struck between seeking medical treatment for the disorder while respecting the autonomy and perspectives many feel hold towards their autism?

In June 2018, Innovative Medicines Initiative, along with a consortium of charities and industry partners, awarded €113 million to the Autism Innovative Medicine Studies-2-Trials (AIMS-2-Trials). Led by King’s College London, the AIMS-2-Trials represent the world’s largest organised effort into the development and testing of new therapies for autism. Importantly, the research conducted under the AIMS-2-Trials umbrella approaches autism using the medical model: the need to find something, genetic or neurological, that can be corrected in autistic people. The medicalisation of autism, in part, reflects new evidence showing remarkable similarities between the aetiology of autism, and that of schizophrenia and ADHD – two other psychiatric disorders well suited to the application of the medical model.

Unlike other mental disorders, autism feels slightly out of place in the medical model. Autism is often so tightly tied up in an autistic person’s personality that they are almost inseparable; treating autism would be comparable to treating an autistic persons sense of humour, or their love for books and sunsets, or their affinity for dogs. The neurodiversity movement embodies this attitude, arguing that autism, as well as other disorders such as schizophrenia and ADHD, is simply a natural variation in human neurology: a form of human diversity subject to the same social dynamics as other forms of diversity. In essence, autism is not a disability that warrants treatment.

Although mental health is finally receiving the attention it deserves from healthcare campaigns in the UK, the same cannot be said of mental disorders such as autism. Instead, our perception of autism has largely been informed by the entertainment industry, where it’s often cast in a light conducive to the neurodiversity movement. It’s no secret that autism is associated with many extraordinary talents: exceptional visual recall, vivid imagination, an extreme affinity for mental arithmetic and logic, high attentional capacity, and more, all of which make for excellent TV.

Quite rightfully, many high-profile films have celebrated these traits, often through autobiographical accounts of humanities greatest thinkers, such as John Nash in ‘A Beautiful Mind’. Recently, Netflix’s new reality TV show ‘Love on the Spectrum’, documenting the trials and tribulations of autistic people as they enter the world of dating, has received plaudits for offering a more ‘frank and honest’ account of autism. By focusing on the everyday difficulties of autistic people without dramatizing their behaviour, Love on the Spectrum successfully portrays a loveable cast of individuals, for whom it’s clear that descriptors such as ‘eccentric’ or ‘quirky’ are far more apt than ‘disabled’, or ‘in need of treatment’.

Have we, in fact, been wasting time and energy researching treatment for autism? Is our ‘neurotypical society’ responsible for the perception that autism is disabling? Should we instead be focusing on our own education and taking measures to accommodate autistic people in what must feel like an incredibly exclusive society? Although there is a lot to be gained from this perspective, it is largely undermined by a difficult truth: many autistic people are not the high-functioning individuals we see on TV.

Even amongst mental disorders, autism boasts a particularly impressive resumé of genetic and environmental risk factors. Different permutations of these risk factors give rise to the ‘autistic spectrum.’ Whilst Sherlock Holmes may represent the pinnacle of high-functioning autism on one end of the spectrum, severe autism can be unapologetically disabling at the other. Many autistic people are entirely non-verbal, or suffer from severe language deficits, rendering normal social communication impossible. In many instances, autism is characterised by a marked emotional dependence on routine and repetitive behaviours, disruption of which can lead to extreme distress. Coupled with self-injurious compulsions and severe intellectual disability, many autistic people are incapable of living independent lives.

Clearly, there is a justifiable rationale for research into the treatment of autism, and it’s likely that many of our current exploits into gene therapy and drug discovery will yield safe and effective forms of medical intervention capable of reversing autism-associated disability within the next decade. I firmly believe that autism is still something we should endeavour to celebrate. Much more than a mental disorder, it’s a variation on the human condition. But ultimately, the neurodiversity movement cannot account for the breadth of autism. Some autistic traits are objectively disabling, and warrant treatment which is not currently available.

Beyond the issue of disability in autism, there is also the matter of autonomy. Even high-functioning autists, seemingly without disability, have a right to treatment. Donna Williams, an autistic autobiographical author, poetically describes her autism as “an invisible prison with replica selves on the outside, each a contortion, a distortion of the one you can’t see, who can’t get out.” For many, autism is intrinsic to their existence and a core part of who they are. But this doesn’t have to hold true for everyone, and it certainly shouldn’t exclude the possibility of change for autistic people who do not feel the same way. Everybody has a right to feel comfortable with their own mind, even if it’s not the one they’re born with.

Like so many things in medicine, addressing autism will require striking a balance. Neither the neurodiversity movement nor the medical model can completely accommodate the remarkable heterogeneity of autism. In its broadest sense, the neurodiversity movement is a philosophy of social acceptance and equal opportunity for all individuals regardless of their neurology. This philosophy must guide our attitude to autism moving forward. At the same time, it is equally important that research into autism is ongoing. Treatment for disabling autism is non-existent, and, beyond that, everybody deserves self-acceptance. The medicalisation of autism does not have to be to the detriment of those who believe that their autism should be cherished, but it is necessary if the entire spectrum is to be treated equally.

Edition: 69 (2020-2021)

Correspondence to: editors@omsg-online.com