Why autism is much more than an “excuse”, and why it matters

Recently, my Twitter feed has been full of a whole series of articles and so on telling the world that conditions such as autism and ADHD are a.) Overdiagnosed Actually and b.) used by parents as an “excuse” for “awful and embarrassing behaviour” or as “something to boast about”.

…Yikes.

To be fair to Dr Mike Shooter, he’s got a childhood psychiatry book to plug, so it’s entirely possible that either he’s exaggerating his views for maximum interest, or the media are doing that for him to maximise interest in them. Still, though, the end result is the same: a load of “ARE WE DIAGNOSING AUTISM TOO QUICKLY?” headlines. Sadly, this narrative is still all too common – and as much as we’ve heard it all before, it can have a hugely harmful impact on how autistic and other neurodivergent people are (or rather, aren’t) diagnosed and supported in future.

In many cases, autism is UNDERdiagnosed. Unfortunately, it is common for people who seek assessment for autism to face waiting lists more easily measured in years than months . Although attitudes are improving, many people have to make multiple GP appointments, and face multiple dismissals, before they are finally offered a referral, making the process longer still. That’s a long time to wait when schools, employers, and other bodies insist on seeing an official piece of paper before doing anything to accommodate you. It’s frustrating to see some of the myths blocking access to diagnosis being repeated, particularly the suggestion that children who behave differently at home, school and other activities can’t be neurodivergent – many thrive in more structured environments, or “mask” their traits at great cost to their mental health or overall functioning, and subsequently struggle to get the support they need.

And that’s just those who recognise that they or their child might be autistic in the first place, in a society that still often sees autism as the Rain Man/Sheldon Cooper stereotypes. In recent years, we’ve seen a generation of autistic adults who grew up in a time when autism was totally unknown finally get the answers they need. Indeed, some parents and relatives of newly diagnosed autistic children discover that they are also autistic in the process. We now also know that restricted autism stereotypes have contributed to underdiagnosis of autism in women and girls, and that race and class are also factors that may prevent diagnosis. To say that autism is overdiagnosed erases all these experiences, and hampers attempts to reduce these problems.

Autistic adults exist. I really don’t understand why this gets forgotten so often. Autism is not a terminal illness, children grow up eventually, this is not a difficult concept. Some are only diagnosed as adults, some without parental support at all. Perhaps it’s nitpicking to point out every time someone slips into only referring to autistic people as “children”, especially given that in this instance it’s supporting a book about childhood, but it happens every time and this contributes to the continued missed diagnosis, disbelief and lack of support services for autistic adults.

Refusing to identify autism doesn’t make it go away. File under: “just because you can’t see it doesn’t mean it isn’t there”. Autistic people don’t suddenly become autistic because a doctor says so – people who seek an assessment are evidently already struggling in some way or another, and telling them they ~shouldn’t have to label themselves~ doesn’t solve anything. When even the most clearly well-intentioned people say “it’s the human condition” or “everyone has that”, I think “then I’m failing at life by not Just Dealing With It like everyone else is” – and it’s fleeting, because I know why, but many people don’t and internalise that message alongside all the other negative ways people react to autistic traits. With the prevalence of mental health problems in autistic people is already shockingly high, growing up undiagnosed is a particularly prominent cause of mental ill health. In this sense, labels are empowering – far from creating new problems, a diagnosis provides the language, tools and acceptance necessary to resolve existing ones.

Autism, ADHD, and “bad behaviour” are very different things. One of my big pet hates about how autism is portrayed in media is that it’s usually framed as “odd mysterious behaviour” from the perspective of a neurotypical outsider (often a parent, which contributes to the focus on autistic children to the exclusion of adults) with little thought for, y’know, what the autistic person actually experiences.

Autism is not bad behaviour. Autism, sometimes, can lead to sensory overload provoking a meltdown. Meltdowns are pretty awful for everyone involved, most of all for the person actually experiencing it. A diagnosis won’t magically make that go away, but it will help the person and those around them understand their triggers and find coping mechanisms. Waving it away as bad behaviour will often only make things worse.

Actively asking viewers to answer to “Do you think some parents use autism to cover up bad behaviour?” encourages people to shame others – the parents and the autistic people who will one day grow up to read those tweets and comments (if, of course, they aren’t doing so already). This isn’t just a fun interesting debate – it affects real people.

These attitudes can have a detrimental real-world impact. Autistic people aren’t just there to be talked about – we’re seeing it all too. Undiagnosed autistic people read these articles and are put off questioning it further. Parents of undiagnosed autistic children read these articles and go back to blaming themselves instead of being able to explore support for their child. Even some of those who ARE diagnosed might start the self-doubt all over again, or wonder whether other people think they’re making it up or annoying others, and might be less likely to ask for accommodations in future. Others who don’t know any better might take this at face value and disbelieve autistic people (and their families), which if they’re in any position of power means less access to support. The narrative that the autism “label” isn’t important in the absence of other diagnoses almost had a catastrophic impact in south-west London last year, when CCGs considered restricting diagnosis to those who also have additional conditions.

The usual defence for questioning disabilities is “I don’t mean the GENUINELY disabled people” – but it’s precisely those Genuinely DisabledTM people and their families who face the backlash in a focus on entirely hypothetical “fakers”. Which raises another question: why are we so desperate to disbelieve disabled people and their loved ones? Is it because if you accept someone is disabled you might have to actively do something to accommodate them? Is the stigma still so great that people find it difficult to see someone as “disabled” and “capable of doing things” at the same time? In any case, it’s about time we stopped trying to avoid the existence of neurodiversity and started focusing on acceptance.