Autism: Disability or Identity Label?

BioKinetiX Brett: In my post yesterday I recommended reading Steve Silberman and following The NeuroRebel on twitter if you have questions regarding Autism and neuro-diversity. Also in that post I stated that one of the fundamental questions I still have is where in the neuro diversity movement do the individuals who have “severe” Autism fit?

I have spent the bulk of my career working with those individuals. It was my work with them that sparked the passion in me to provide top quality services and to be sure we always provide the ceiling and never the floor.

As I read my way through and learn from those who subscribe to the idea of Autism as an identity label vs a disability, I am consistently left with that question. Admittedly, I often ask myself, as an outsider (someone who does not have Autism), are they co-opting what having Autism is and leaving those whom are significantly impacted out in the cold?

One of the major proponents of the neuro diversity movement is the idea that a “cure” for Autism is sort of demeaning. That they are not people who need to be cured, so much as they are people who just need to be understood by the larger society. They seem to feel that many adverse behaviors that people with Autism have are largely due to society forcing isolation upon them, rather than a mis-wiring in the brain. To an extent, I do see where they are coming from. There is something to be said about human nature shunning the idea of different.

However, I have been bitten, scratched, punched, kicked and spit on enough times to confidently say not all behaviors are a result of the unforgiving nature of society. When someone is significantly impacted by Autism to the point of an inability to communicate or regulate emotion or stimuli at all, aggressive behavior is all too common. My training in behavior science tells me that often these behaviors have a function of some sort of communication in lieu of being able to verbalize emotions and physical ales.

Imagine having the sensation of needing the bathroom but not having the words or the skills to ask or even just walk to the bathroom and take care of it. The inability to verbalize thoughts and feelings is not a result of societal shunning.

And so, my question still stands, in the blossoming neuro-diversity movement where do those individuals fit in? When I see #ActuallyAutistic on Twitter, I ask, are these guys not also Actually Autistic? Well, I came across a brilliant piece written by Thomas Clements, aka the “Autistic Buddha”. He too is one of my favorite people to follow on twitter ( @tclementsuk ) and he answers the questions I have long been asking. His Blog is phenomenal and is a must-have follow (like this one!)

In full candor, yesterday I provided one side of the debate, which has some merit, and today I am providing the other side. The quote that stuck out to me was

“Autism is a disability first and foremost. It should never become another edgy identity label”

I encourage you to read this as you too search for information as we all try our best to not just be aware of Autism, but to be educated. Enjoy!

Enter Thomas Clements, The Autistic Buddha:

The Problem with the Neurodiversity Movement

Every morning when I wake up I feel a heavy sense of trepidation as I contemplate the complex series of social interactions I will have to navigate in order to make it through the day at work. Being on the autism spectrum makes me instinctively averse to the superficial chit-chat I am expected to engage in in my job as a retail cashier. To my mind at least, small-talk serves no real practical purpose. It just makes me feel on edge and increases my overall stress levels as I expend huge amounts of cognitive energy decoding idioms and non-verbal communication. Unfortunately, retail work is about the only employment option available to me at the moment because my Asperger’s Syndrome affects my ability to relate to others. Because of my condition, I am prone to be blunt, sometimes to the point of rudeness, which is a personality trait that tends not to sit especially well with many members of the so-called ‘neuro-typical’ or non-autistic world.

As a relatively isolated 20-something Aspie with few friends, I decided to take to social media in the hope of finding a community into which I could assimilate and no longer feel like a routinely-shunned outsider. In online autism circles, I frequently came across the term ‘neurodiversity’, a term used to denote a collective of atypically-minded people with a range of conditions including ADHD, dyspraxia, dyslexia, and autism. The aim of the movement is to celebrate these distinct conditions as natural variations in the human genome rather than viewing them as pathological disorders deserving of medical interventions and cures. The term itself can be attributed to Judy Singer, an Australian social scientist on the autism spectrum, who wished to encapsulate a notion of neurological difference across humanity akin to the variation we see in plants and animals in biodiversity. The term was an instant hit and went on to spawn a left-wing political movement inspired by past and present civil rights causes. Indeed, the aim of neurodiversity is to champion the rights of ‘neurodiverse’ individuals in society and campaign to achieve the correct accommodations for them in the workplace and the wider society in order that they may live rich, fulfilling lives. The idea of curing conditions like autism is anathema to neurodiversity advocates, who often compare such a notion as akin to curing homosexuality, which was considered a psychiatric disorder until the late 80s.

The aims of neurodiversity are ostensibly virtuous and rooted in a compassionate social view of disability. Many of its members declare that they are ‘autistic and proud’, a slogan that was readily appealing to someone who’d long felt ashamed of admitting to being autistic, even to close friends. Reconceptualising autism as a different operating system as opposed to a series of deficits seemed fresh and invigorating and it wasn’t long before I started to champion the movement’s key tenets. I was told by countless enthusiastic advocates that the disabilities accompanying my autism were not so much the result of autism itself but by a systemically ‘ableist’ society that routinely marginalises and oppresses neurodiverse individuals. After years of feeling bitter and resentful at society, it was tempting to run with such a view and become a full-fledged supporter of the neurodiversity viewpoint. However, while some of this rhetoric may contain a kernel of truth, the reality soon dawned on me that autism is a far more complex picture which cannot be reduced to a single redemptive philosophy. The anti-cure stance may ostensibly seem the most moral, at least for the time being, but the prospect of one day finding a cure for autism should not be ruled out entirely.

It may be the case that accommodations are the way to go for those that are mildly autistic and have a very mild variant such as Asperger’s, but for many autistic people, especially those labelled as ‘severe’ in their disability, the view that this is essentially all the fault of society is hardly persuasive. And in its most disabling forms, autism cannot be viewed merely as benign variation in human neurology. Self-injurious autistic behaviours such as head-banging and arm-scratching which are often associated with severe forms of the condition are evidently pathological. Given the severity of such symptoms, parents, carers, and relatives of such individuals who engage in them can be forgiven for wanting an autism cure.

Neurodiversity proponents on the other hand will vehemently decry any suggestion of a pro-cure stance, brazenly stating that it’s akin to eugenics and even genocide. I became alarmed by such a fanatical view and by the cult-like dynamics evident in online neurodiversity circles. Those who disagree with its axioms are often shunned and, worse still, abused and attacked verbally. One such individual is Jonathan Mitchell, an autistic man from California who rejects any notion that autism can be viewed simply through what he considers to be the rose-tinted lens of the neurodiversity credo. In fact, he is often dubbed a ‘self-hating autistic’ who attributes his lack of employment and romantic partner to his autism. He strongly wishes for there to be a cure and has even pledged to donate his brain to science in the hope that one day it might find an answer as to the causes of his condition. While Jonathan represents the other extreme of the vicious and often fiercely tribal pro-cure/anti-cure debate, I cannot help as a fellow autistic to sympathise with where he is coming from. I now find myself in the invidious position of sharing the same impulses as those in neurodiversity tribe—for social justice and better rights—but at the same time I feel critical of the ideological fanaticism and rigidity that pervades the movement as a whole.

It seems that neurodiversity has been infiltrated quite insidiously by a postmodern ethos that attempts to turn autistic people into an oppressed group to be used for political gain. A liberal spirit of free and vigorous discussion seems wanting as neurodiversity proponents eschew alternative viewpoints and live in an echo-chamber of mutual-validation and political correctness.

Being a left-leaning liberal, I am somewhat tilted towards the neurodiversity position in certain respects. Like them, I believe autistic people deserve better accommodations at work and in the wider society. I also support those who promote the potential of different minds and the strengths they bring to companies, and I welcome autism-friendly showings and events in public. These are undoubtedly brilliant ideas and I have no quarrel with them at all. What I don’t respect are the radical ideologues who consistently browbeat those who disagree with them and wilfully ignore the real difficulties faced by a vast number of autistic people.

THERE IS NO SUCH THING AS SEVERE AUTISM, just as there no such thing as ‘severe homosexuality’ or ‘severe blackness’. https://twitter.com/spectrum/status/916830509086281728  

Autism is a disability first and foremost. It should never become another edgy identity label for people which is sadly what is happening in certain sections of the neurodiversity movement. When autism is so severe, it can be deeply troubling to see. I’ve seen kids and adults who are incontinent and have to wear diapers, who smash their skulls against walls, who have frequent epileptic fits and who have a very poor quality of life despite all the provisions made for them. This is quite clearly not a social justice or intersectional issue and to pretend otherwise is to be deeply dishonest. Autism this severe does in fact merit a lot of scientific investigation and potential treatments, not necessarily “cures”, to mitigate dangerous and disturbing behaviours.

In Beijing, TMS (Transcranial Magnetic Stimulation), which is a safe, non-invasive treatment used often to treat mental illnesses, is being used in one of the city’s main hospitals to mitigate the worst symptoms of the condition in order that the most disabled autistic people can live better quality lives. There is some evidence to suggest this is efficacious.

For me, as a mildly autistic young man, it’s a very different story of course. I don’t want TMS and if I were to have it, it would be to treat my depression which has plagued me since before I can remember. My Asperger’s is a part of me, even if the social difficulties it entails limit me in my interactions a lot of the time. But I am worried that the fringe elements of the social justice and neurodiversity movements are prone to fanaticism and will insist that any hint of treatment or alteration of the sacred autistic ‘identity’ is somehow ‘fascist’ or ‘eugenicist’. In its moralising crusade, it will aggressively oppose any treatments and medical interventions for the most disabled autistic people. This, in my view, is a thoroughly wrong-headed approach. While I understand and appreciate that mildly autistic people do like their autistic label—that should never trivialise the condition for those that are so limited in their functioning and overall quality of life.

Neurodiversity, like many identity movements, while noble in its intentions, buys into the myth of human solvability and implies that, with the correct accommodations, autistic people will be absolutely fine and problem-free. But the issue is far more complex than that and the question of whether autism should be accommodated, treated, or even cured remains an important part of legitimate debate. This requires people to set aside their prejudices and preconceived ideas and engage into a dialogue with those with whom they may disagree or even hate. The future of those living with autism depends upon it.

Thomas Clements
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Thomas Clements

Thomas Clements is a 29-year-old shop assistant from the UK with Asperger’s Syndrome. He has recently written a book entitled ‘The Autistic Buddha’ which details his experiences of the condition and how Buddhist meditative practices have helped him live a nobler and more peaceful existence on the autism spectrum. The book is due to be released at the end of the year by ‘Your Stories Matter’, an imprint which specialises in the storytelling of people with neurodevelopmental disabilities.
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