Sonny Hallett: Why the crisis in autistic mental health should matter to all of us

Ben Wray

In the final contribution to CommonSpace’s week of special coverage on the mental health crisis, Sonny Hallett, chair of AMASE (Autistic Mutual Aid Society Edinburgh) and co-author of a recent report on autism and mental health services, explains why things need to change so services “account for difference and diversity”

I RECENTLY co-authored a report on autism and mental health services in Scotland which found that almost half of the autistic people surveyed had not been taken seriously by mental health professionals when they reported serious distress, such as suicidal thoughts. In addition, more than a quarter of survey participants had been denied access to mental health services specifically because they are autistic.

While these findings are particularly concerning for a population who, by some estimates, are nine times more likely to commit suicide, it is important that this is understood not just as an ‘autism issue’, but a broader symptom of a failure of approaches to mental healthcare to take into account difference and diversity.

The most common mental health treatments on offer tend to be those which are seen as “cost-effective”, such as short sessions of CBT, mindfulness apps and prescriptions of strong psychotropic medications (often with very little accompanying in-person therapy or support). These clearly work for some people, but they also tend to only be tested on relatively non-diverse populations, and when the treatments are unsuccessful, the blame can too often fall on the individual for failing to respond “correctly” or “properly engage”.

There is increasing evidence to suggest that autistic people are likely to react differently to many drugs, and may be less responsive to other therapies, including some forms of CBT.  By designing treatments only based on a largely ‘typical’ population, autistic people suffer from not being the ‘target audience’ of such treatments.

Now consider that being autistic is just one of many ways to be neurodivergent: from other diagnosed neurological differences such as ADHD, dyslexia, etc, to being divergent within the more general idea of neurodiversity – the simple concept that each individual’s experience of the world is going to differ from others’ to a greater or lesser extent.  It should be obvious that people who are less close to the ‘average’, or neurotypical, are going to be more likely to suffer the consequences of treatments not working for them as intended, or their mental health concerns presenting differently and being dismissed. However, even people who diverge slightly but significantly may find themselves struggling to make the mental health support that is available work for them.  Like many of our survey respondents, far too many people are being labeled “too complex to treat”.

The issue of autistic people’s “atypical” distress going unnoticed or not being taken seriously echoes the experiences of other marginalised or disadvantaged groups, including those with other disabilities, women, people of colour and those who are part of LGBT+ communities.  Humans are diverse in all kinds of ways, and awareness of this needs to be reflected in approaches to mental health. Assuming a single baseline for ‘normal’ ignores this diversity, and makes assumptions about how each individual may be best-adapted to be healthy and thrive. 

One of the great strengths, I’ve found, of much of the autistic community, and in the idea of neurodiversity more generally, is the focus on acceptance and valuing of all kinds of different ways of being human – even if these differences can sometimes be seen by society as unusual, eccentric, or even pathological. Repetitive movements (stimming) to help regulate emotions, or intense interest in unusual topics, are too often seen as symptoms, when they may be techniques to cope with distress, or ways of gaining fulfillment and happiness.  The latest trend in weighted blankets for anxiety and insomnia is not the first time a tool known for years by the autistic community has gained enough popularity to benefit many others; other examples include fidget toys, noise cancelling headphones, and (more limitedly) the use of communication badges at public events.

READ MORE – Fergus Murray: Why ‘nothing about us without us’ should be an Autism policy principle

I look forward to a future in which the majority of mental health practitioners can have the open-mindedness and humility to listen to different people’s experiences and reports of distress, without comparing them against a standard of typicality or their own assumptions. I look forward to services being more willing and able to be more flexible with tailoring approaches to meet individual needs. 

Autistic people are the ‘canary in the coal mine’ when it comes to mental health; listening to us, what we struggle with, what can help, and how we experience the world, can help to broaden and improve society’s understanding and inclusion of all kinds of difference, and potentially prevent a greater number of people from falling between the gaps.

Picture courtesy of AMASE