Autism Spectrum Disorder (ASD) is a life-long, pervasive condition. There is no cure. No medication or treatment exists to alleviate all of its multifaceted traits. Even so, I have taken my two autistic sons to countless psychology, speech therapy, occupational therapy, feeding clinic, and paediatric appointments. I have not done this because I want to ‘cure’ my boys, or ‘fix’ them, or have them be anything or anyone other than who they are. Rather, I have hoped to give them the strategies and tools with which they can function in a world that caters poorly for their needs, a world that is becoming aware but is a long way from accepting.
But today, as I hurried my eldest son out of a course teaching him emotional regulation and into the car to see his psychologist, who is helping him to manage his profound anxieties, something occurred to me. When I focus on all the strategies and tools that he ‘needs’ to learn to be part of the ‘real world’, when I dwell on all of the differences that inhibit his ‘full participation’ in the life I expected him to lead, when I reduce my son to a tally of his deficits, that’s when his ASD seems so crippling. But when I concentrate on his innumerable gifts and strengths I see endless potential, a capacity for genius, and the promise of a happy and fulfilled life.
But what would such a life look like for my boys? It certainly isn’t the one I imagined for them, and I don’t think it’s the one in which they will need to use all of the coping skills with which I’m providing them. If I imagine a happy, fulfilled life for my boys, it is one in which they may be openly autistic, in which their incredible autistic skills are celebrated and valued, in which their ostensible deficits are reframed as unique gifts, and in which they may stim (self-stimulatory behaviour) in whatever form they like (my boys hum and pace in circles) without stigmatisation or judgement.
In singling out the disability associated with ASD, we can easily fail to see the ability intrinsic to it.
That moment today was an epiphany for me because there is a real risk – even as a loving, dedicated parent – that in singling out the disability associated with ASD, we can easily fail to see the ability intrinsic to it. With such reductive thinking, we effectively disable not enable, despite our best efforts to do the opposite.
The other thing that struck me is that all of my sons’ appointments are focused on giving them the strategies to ‘exist’ and ‘cope’ in a predominantly neurotypical world. The onus of responsibility for the way they survive in the world is on them: they must change, endure, manage.
Herein lies the inherent danger in labelling ASD a disability: by assuming that ASD must be disabling we confirm to ourselves that is a disability. But there is a distinction between disabling and disability. As a society, the latter is something we try our best to accommodate (by building a wheelchair ramp, for example) but is fundamentally not our problem; the former is something we are compelled to address.
The onus of responsibility for the way they survive in the world is on them: they must change, endure, manage.
Take anaphylaxis. Anaphylaxis could be profoundly disabling, condemning its sufferers to exclusion from the broader community (playgroups, childcare centres, schools). But anaphylaxis is not a disability, and we mitigate its potential disabling impact by mandating for nut-free environments and by implementing policies and procedures specifically designed to manage latent risks. The individual with anaphylaxis assumes some responsibility for managing their condition, but so do the rest of us: we take action to limit how disabling that condition is.
Why, then, is autism any different? This is not to underestimate the disabling effects of autism or to discount the experiences of the many autistic individuals who struggle to function in neurotypical society. But by labelling autism a 'disability', we effectively abdicate responsibility for how disabling autism is, and we can view it as an aberration that requires minimal response. But ASD is so disabling because – as a society – we are not well enough informed, not sensitive enough, to facilitate neurodiverse inclusion. If we consider that we contribute to how disabling ASD is, the onus for change is on us.
If we can implement procedures to temper the theoretically disabling effects of anaphylaxis (if I, for example, can send my son to preschool without his beloved peanut butter for the good of the other children in his preschool room), why not so for autism?
ASD is so disabling because – as a society – we are not well enough informed, not sensitive enough, to facilitate neurodiverse inclusion.
It's not mere semantics. Disabling is not synonymous with disability. Perhaps if we ditched the disability tag, we might be more motivated to make the lives of individuals with ASD less disabling. In his critically acclaimed book, Neurotribes, Steve Silberman recounts that when sixty autistic individuals gathered at Autreat (a North American autism conference run by and for autistic individuals) they no longer felt disabled because they found an ‘autistic space’, although their ‘disability’ was unchanged. Psychiatrists and medical professionals might have designated autism a disability, but disability can be socially engineered.
The irony is that in the opening decades of the twentieth century Hans Asperger (after whom Asperger’s Syndrome is named) did not consider autism to be a disability, a disorder, something broken to be fixed. This man looked at the unusual children in his care as displaced and dysfunctional, not because of the child’s inadequacies or deficiencies, but because of society’s inability to find ways to accept, nurture, and respect them. A near century later, perhaps we should consider leaving the pathology of autism behind us and return to Asperger’s personal, individualised approach of fostering strengths, enabling gifts, indulging interests, and – most importantly – accepting differences.
At some point we have to listen – to hear – eminent autistic Temple Grandin’s assertion that autism is ‘different not less’. We have to steer away from trying to ‘cure’ or ‘fix’ those that don’t fit in. We have to loosen our grip on that sacrosanct ideal of ‘normalcy’ and embrace inclusion and diversity. And that some point is now. As a society, many of us do our best to embrace racial, cultural, sexual and religious diversity: let’s now turn our attention to the pressing concern of accepting neurodiversity in all its eclectic and awesome brilliance.
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