Let me introduce myself. My name is Tania Browne, I’m a health researcher at the University of Stirling, and at the sprightly age of 46 I found out I was autistic.

Now, this is hardly a dramatic revelation. You can’t open the lifestyle section of a news site nowadays without some middle-aged woman like me recounting her long history of “She’s just shy”, “She’s just a bit depressed”, “Perhaps it’s bipolar or borderline personality disorder”, and the classic “But you can’t be autistic! You’re a woman! You made eye contact with me for at least 10 minutes, AND you made a joke!”

Many people from past generations, like me, have slipped through the diagnostic net. In 2011, Terry Brugha and colleagues at the University of Leicester conducted the only large-scale study measuring the prevalence of autism (both diagnosed and not) in the UK. Brugha’s best estimate was that around 1 in 75 people of all ages are on the autism spectrum.  In other words, I’m nothing special.

In recent years there’s been an increasing demand for diagnosis of adults with suspected autism in mental health services, and there are a few reasons why this might be happening. For a start, the definition of autism has changed many times, as has the diagnostic procedure as our understanding continues to evolve. Some people have been misdiagnosed with other conditions such as OCD, ADHD, or (my own experience) bipolar disorder. Some parents might have been unwilling to stigmatise their kid with a diagnosis, and what’s more there’s a racial bias in diagnosis – one study showed that white children were more than twice as likely to be diagnosed with autism as African Americans (who had similar symptoms diagnosed as ADHD). Many people, especially women, learn behaviours that help them mask symptoms, such as mimicking small talk or rehearsing conversation topics before going to social events.

Autistic researcher John Elder Robison writes that the lifestyle of autistic adults might range from institutionalisation to seamlessly ‘blending’ into the community, giving a wide range of implications for the support they might need. And importantly there’s still a stigma attached to autism which, combined with lack of support and services, can discourage suspecting adults from seeking a diagnosis. Robison further points out that the implications for future health and the need for tailored treatments are sizeable, if the numbers of autistic people in the population are as high as Terry Brugha and colleagues suggest.

John Elder Robinson Pic by author’s own site http://jerobison.blogspot.com

One research area where this is glaringly obvious is my own – alcohol and drug misuse. Now at first, you may raise an eyebrow at this. The assumption that an autistic person would rather read a nerdy website all night in their room than party hard might prevent people, including medical staff, from suspecting substance use in autistic teens and adults. In my case they’d be absolutely right, but everyone is different. As the saying goes “If you’ve met one autistic person….. you’ve met one autistic person.” The fact is that autistic people can, and do, use alcohol and drugs. Even the briefest scan of Reddit autism forums will show many discussions among those who self-experiment with cannabis, cocaine, and MDMA to see if it alters their personal “symptoms”, as well as those who are seeking advice as they drink to combat their loneliness. Of course this doesn’t necessarily lead to addiction, but if combined with other conditions such as depression and anxiety it can be a slippery slope.

And I say this for good reason. Mental illness is much more common in autistic people than the neurotypical population. One study found that 46% of British adults diagnosed in adulthood reported symptoms of moderate or severe anxiety and/or depression. Another study found that 66% of newly diagnosed British adults had contemplated suicide, and that 35% had actually attempted it.

A population-based study in 2017 tried to establish the rate of substance use disorders in autistic adults. The Danish study of almost 27 000 people documented a doubled risk of alcohol and substance use-related problems among the autistic population when compared to the general population. But why?

Many autistic people have a desire to “fit in” socially and feel accepted in communities, and if this means drinking and taking drugs because it’s what other people are doing then so be it. And drinking or opiate use may seem like a temporary solution to the sense of social isolation and loneliness that many autistic adults feel when they’re rejected for not understanding the social cues of their peers (I can confirm that even for autistic people, social rejection can be devastating).

Some studies identify autism as protection against alcohol or drug addiction, but these studies have often used small numbers of teens in specialist care settings. This isn’t enough. As autism is severely underdiagnosed in adults, there’s very limited support available for those who’ve been trying to live their lives, go to work, form relationships and raise kids in a world where they’ve never felt comfortable. Even adults diagnosed with autism during childhood ‘find themselves “falling off a cliff” into unstructured and overwhelming adult environments for which they lack the tools for successful integration’ according to a study from Gregory Wallace and colleagues in 2016.  This may be in part why autistic people are at such high risk for depression and anxiety – there is simply no support for autistic adults.

We need to establish a clearer picture of problem alcohol and drug use – among autistic adults, and among people who are not officially diagnosed but who suspect they’re autistic. We need to actually talk to autistic people – to find out their experiences of treatment so far, and ask what barriers there are to seeking help. And we need to help addiction support services to tease apart the mixed presentations of autism and addiction, to provide better treatments.

I’m on the hunt for PhD funding to start this process myself, but research grants are ridiculously competitive and – somewhat ironically – this can be a barrier to autistic researchers like me who might not understand the unspoken subtleties of the system. It’s no wonder that the majority of research on autism ends up being done by non-autistic people who see us as subjects, not communities who have our own ideas about how we might be helped. There are some terrific autistic researchers and non-autistic allies teaming up and starting to research autistic adults and their lived experience, but all too often their grant applications are turned down – for example, I recently heard of someone denied funding for a study of autistic sexuality, presumably because autistic people aren’t supposed to have sex (or even think about it).

It’s a similar story with drugs and alcohol. We have to accept autistic people as fully rounded human beings among us in the world, after all, before we can accept that they may have very human problems. This may sound overly dramatic, but autistic attendees at academic conferences will confirm that, astonishingly, this still seems like news to some speakers. It’s starting to change, thankfully, but perhaps not fast enough for the thousands of autistic people who have alcohol and drug problems who might need a different approach to help them.

This is a (much) shorter version of Tania’s Master’s dissertation. If you’re interested in reading the whole thing, or you’d like to find out the references for the studies she talks about here, you can contact her via Twitter, @tania_browne

After spending 20 years in the hospitality industry, Tania Browne is now a health researcher at the Salvation Army Centre for Addiction Research at the University of Stirling. She has a particular interest in substance use in autistic adults, health policy, and inequity in healthcare. She used to write for both The Guardian and Sci-Logs. She can be found on Twitter at @tania_browne.

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