It’s not easy being… neurodivergent
One of the more heartening aspects of Dr Eduardo de la Fuente‘s neurodivergent journey has been moving to South Australia – but he would really like people to get back in the left lane after overtaking.
One of popular culture’s great meditations on self-acceptance – Kermit the Frog’s song It’s Not Easy Being Green – concludes with the words:
“I am green, and it’ll do fine.
It’s beautiful, and I think it’s what I want to be.”
I hate to sound like a “glass half-full” person, but if only life were so simple.
What about when “being green” doesn’t mean your greatest fear is (as Kermit puts it) “blend[ing] in with so many other things”, but rather standing out like the proverbial sore thumb? Or for reasons long forgotten or recently acquired, greenness is or has become a stigmatised form of existence?
And what if greenness is susceptible to what we social scientists call “moral panics” – tabloid headlines claiming that kids are only coming out as green because adults are planting the idea of greenness in their heads, or because greenness has become cool, or because there is some financial or other incentive to self-identify as green?
Welcome to my and many other people’s experience of coming out as neurodivergent.
As often happens with adults who receive late-life diagnoses, the path was a difficult one – not least because I had no idea what either ADHD or Autism meant until life circumstances forced me to take these conditions seriously. As with other neurodivergents, once I learnt a little bit about these neurological conditions, things kind of snowballed.
You soon recognise aspects of yourself that had been there from the beginning – both challenges and assets. But getting a formal diagnosis or “assessment” was a more glacial process. And when it comes to getting the necessary support services, it is more like economist John Maynard Keynes’ famous quip: “In the long run, we are all dead.” The system is playing catch-up with the many undiagnosed neurodivergents in the community, and making appointments and filling out forms are not exactly neurodivergent strong suits.
There was a debate about whether certain celebrities such as Em Rusciano could be neurodivergents and whether they, in turn, were fuelling the spike in people seeking diagnoses.
The coming out process has also been tinged with the plethora of responses that characterise other coming out processes. Naturally, there has been: “But you can’t be a neurodivergent… you have a PhD and you’re too well-spoken” (the equivalent of you can’t be gay because you don’t fit my image of a gay person, or are you really a migrant because your English is first-rate.)
The more enlightened or knowledgeable might respond with a shrug of the shoulders and say: “I actually assumed you were a neurodivergent.” The latter at least saves you from having to recite the thirty thousand different neurodivergent traits you now accept as part of your make-up. It also saves you from having to launch into an explanation of neurodivergent “masking” and “camouflaging” – the energy-sapping and ultimately hard to sustain tactics whereby neurodivergents adapt their behaviour to conceal their neurological atypicality.
What I had been least prepared for is the neurodivergent-bashing and moral panics in the media.
Around the time of my ADHD assessment, there was a debate about whether certain celebrities such as Em Rusciano could be neurodivergents and whether they, in turn, were fuelling the spike in people seeking diagnoses. And soon after I received my Autism report, the headlines were about whether the NDIS was fuelling what the experts term the “Autism prevalence rate” in Australia. The latter was a full-blown moral panic, right down to claims that rates of diagnoses were driven by financial incentives. The federal Shadow Minister for Education proclaimed “parents needed transparency” regarding whether their children had been misdiagnosed. In other reports, parents were painted as the villains who were pressuring clinicians to give them the diagnosis they were after.
For the record, the criteria for ADHD and Autism are set not by the NDIS but rather by the American Psychiatric Association in the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition – or DSM-5 for short. Assessments tend to involve multiple clinicians; the gathering of information from multiple sources through questionnaires and interviews, and, in my case, the assessments lasted three hours each (I wasn’t given the label of ADHD or Autistic in a cursory manner or on the spot.)
The moral panics in the media have been amongst the more disheartening aspects of coming out as a neurodivergent. It does feel like some sections of the media will throw any vulnerable community under the bus for a juicy headline. I say vulnerable community because the statistics I have seen suggest Autistics are 800% more likely to be unemployed compared to the rest of the population. And 900% more likely to contemplate self-harm.
But there have been positive aspects to coming out as a neurodivergent.
As someone interested in place, and the capacity of neighbourhoods, cities and regions to nurture you, one of the more heartening aspects of my neurodivergent journey has been moving to South Australia. The area in which I live has a public school where teachers and support staff are knowledgeable about neurodivergence; there is a local support group for carers and people who have additional needs; and an ecology of social services where organizations are au fait with the peculiar needs of the neurodivergent population (e.g., the kinds of supports they may need to interface with Centrelink, employers or the justice system.)
Neurodivergents often sweat on the small stuff
Like the rest of Australia, South Australia sorely needs more paediatricians and psychiatrists who specialise in neurodivergence. But there is also the state government’s newish Office for Autism and the campaigns it is sponsoring to make South Australia a neurodivergent-friendly place. One doesn’t want to reduce people’s welfare and wellbeing to matters of place branding, but it can only be a win-win for all if, in addition to all the things South Australia is already known for, the state garners a reputation for its neuro-inclusivity and its celebration of neurodiversity.
This is not to say that South Australia is some kind of “neurodivergent Utopia”.
Having spent most of my adult life driving in other jurisdictions, I am unduly put out by the fact, for example, some South Australians stay in the overtaking lane once they have overtaken a car on the South Eastern Freeway. Especially when every few kilometres there is a sign that says: “Keep Left unless Overtaking.” I can’t pinpoint exactly why people disregarding this rule is so unsettling. It’s like some major cosmological principle has been violated. But we neurodivergents get easily discombobulated by occurrences neurotypicals ignore, take in their stride, or consider minor irritants.
As a wise man said to me recently, neurodivergents often “sweat on the small stuff”. Think the characters from Seinfeld or, better still, The Big Bang Theory. In the latter, popular culture’s most famous neurodivergent, Sheldon Cooper, is so anxious about things being unpredictable that he gets flatmates to sign “roommate agreements” covering all matter of things.
I guess it would be expecting too much of South Australian drivers that they sign a compact where they promise to return to the non-overtaking lane once they have successfully overtaken the car in front of them. But we neurodivergents have all kinds of crazy dreams.
Eduardo de la Fuente is Adjunct Senior Lecturer, Justice and Society, University of South Australia, and Fellow of the Institute for Place Management, Manchester Metropolitan University.