Neurodiversity is failing the most vulnerable

Treating autism as an identity has resulted in care being denied to those who need it most.

Tom Clements

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Autism is among the most controversial subjects of our time. During my 10 years or so as an autistic self-advocate, I have witnessed a litany of pet theories, ideologies and movements jostle for supremacy in a field that seems increasingly fraught with division. In the absence of a scientific consensus on this complex and multifaceted condition, with which over 1,000 candidate genes and 100 de novo mutations are associated, it is highly unlikely that everyone will ever agree on how autism is to be defined, what its root causes are, or how we ought to proceed in improving the lives of those affected.

In an article I wrote for the Guardian last August, I argued that autism as a diagnostic label has become so broad as to be medically meaningless. I highlighted the absurdity of lumping highly intelligent ‘Aspies’ (a slang term for people with Asperger’s syndrome), such as Greta Thunberg (who famously declared her autism a ‘superpower’), in the same category as children and adults who regularly injure and soil themselves and require round-the-clock care. This echoed the warnings of Laurent Mottron, an autism expert at the University of Montreal. He says that autism is now so over-diagnosed that in 10 years time the category of autism will become meaningless. He predicts that there will be no difference between someone diagnosed with the condition and a non-autistic person.

My Guardian piece, though well received by the majority of readers, sparked a backlash from proponents of a small but influential movement known as neurodiversity. Neurodiversity was once a relatively fringe tendency. But in recent years it has become the dominant paradigm in autism discourse owing to its popularity among academics and journalists. Steve Silberman’s book, NeuroTribes, which received many laudatory reviews for putting a positive spin on a deeply stigmatised condition, helped to bring the neurodiversity paradigm into popular consciousness.

With its emphasis on social justice and autistic-led advocacy, the neurodiversity movement appears noble in its intentions. On the surface, at least, it is hard to object to its impulses for inclusion, social justice, better workplace accommodations and service provision. It emphasises the positives of the condition in contrast to a medical model which views autistic people only as checklists of deficits and dysfunctions. However, as I soon discovered, the mask of compassion quickly slips away the moment anyone deviates from the party line.

Perhaps one of the most troubling developments in the autism-advocacy sphere over the past several years (aside from the proliferation of vaccine conspiracies and the peddling of harmful quack remedies like bleach enemas) has been a growing intolerance towards perspectives that challenge the basic assumptions of neurodiversity. Neurodiversity advocates have waged online hate campaigns targeting parents and autistics who question the notion that autism is merely a bright thread in humanity’s rich neurological tapestry.

I received my baptism of fire four years ago when, despite having garnered popularity in the advocacy community, I committed the thoughtcrime of suggesting that struggling parents of profoundly affected autistic individuals are deserving of greater support from self-advocates. In the minds of neurodiversity advocates, I was being traitorous to my ‘neurotribe’ by sympathising with a group of people often considered oppressors and deniers of autistic identity by the more radical elements within the community.

Accusations of being an ‘autistic Uncle Tom’, ‘self-hating’ and even ‘aut-right’ were thrown my way in a social-media firestorm which lasted for several days. Not long after, and with a slightly devil-may-care attitude, I fully renounced any claim to being ‘neurodiverse’, along with the much-vaunted status it confers within the online self-advocacy community. I suggested in a Facebook community called Neurodiverse UK that we ought to consider discussing the possibility of a cure for the most life-limiting variants of autism. The group’s code of conduct stipulates that anyone engaging in ‘pro-cure talk’ would be banned with immediate effect. And the group was true to its word. I was relentlessly castigated, doxxed and, on one occasion, physically threatened for my suggestion.

It was during this difficult time that I came to learn of Jonathan Mitchell, a veteran autistic blogger from Los Angeles. Over the years, Mitchell has been subjected to vast amounts of abuse for wanting a cure for a condition which he describes as a ‘disease’. He has led a one-man crusade against neurodiversity, relentlessly arguing for a cure and rejecting neurodiversity’s key tenet – that it is ‘neurotypical’ society and oppressive parents, as opposed to autism itself, which are largely to blame for autistic suffering. His blog, entitled ‘Autism Gadfly’, has been a consistent thorn in the side of a movement which routinely seeks to silence dissenting voices through intimidation.

In 2015, when Newsweek reached out to Mitchell for a feature article, neurodiversity proponent and blogger Philip Gluyas implored the magazine to withdraw the article, describing Mitchell as a ‘hater’ and ‘a threat to the stability of the autistic community’. Despite a chorus of execration from neurodiversity proponents, Newsweek published the feature. It came out roughly around the same time I had officially ‘apostatised’ as well. I made contact with Mitchell and we spoke at length about our common experiences of abuse and about life on the spectrum. We both agreed that the main fissure in our community lay between those who viewed their autism as a disorder and those who celebrated their autism as an identity.

The sacralisation of autism as an identity has led to many neurodiversity-supporting self-advocates viewing treatments – the sort of which might alleviate substantial suffering for those on the lower spectrum – as tantamount to bigotry, hate and even eugenics. Steve Silberman describes autism as a ‘valuable part of humanity’s genetic legacy’. Meanwhile, Nick Walker, a particularly strident advocate of neurodiversity, runs a blog called ‘Neurocosmopolitanism’. He argues that:

‘Individuals and organisations that speak of autism as a “disease” or “tragedy,” and that talk of “curing” it, should be prosecuted for hate speech and incitement to violence, just as if they were advocating a Final Solution to the Jewish Problem.’

In Walker’s view, autistics such as Mitchell who voice their desire for a cure, as well as parents who have the temerity to express sadness over their child’s disability, ought to be criminalised.

As Walker sees it, no compromises can be made: neurodiversity is a militant struggle for autistic liberation analogous to the civil-rights movement of the 1960s. Curing autism, in his mind, is as unconscionable as trying to cure homosexuality, which, until 1973, was considered by mainstream psychiatry to be a mental disorder. Many would find his comparison between sexual preferences and a cognitive disability invidious. But in neurodiversity circles, this is nothing out of the ordinary. John Marble, an Obama White House appointee and a prominent exponent of neurodiversity, tweeted that: ‘THERE IS NO SUCH THING AS SEVERE AUTISM, just as there is no such thing as “severe homosexuality” or “severe blackness”.’

The with-us-or-against-us certainty of the neurodiversity movement not only acts as an angry mob online, but also, more alarmingly, it is having real-life consequences for the most marginalised people on the spectrum, many of whom, due to the nature of their disability, cannot protest.

Bruce Hall, a photographer and father of two severely autistic boys, laments the overreach of the Autistic Self-Advocacy Network (ASAN), a neurodiversity organisation which cheers the closure of care facilities in the US which it deems ‘too institutional’. ASAN’s de-institutionalisation push has resulted in cuts to service provision for those who need it the most. Hall’s son was placed in a crisis group home in Costa Mesa, California. He had access to open spaces, a play area and a petting zoo. This offered respite to the family and tranquillity to their son. But this was taken away from them. The closure of centres like these are viewed as victories in the fight for ‘autistic liberation’ by the advocates of neurodiversity – the bulk of whom tend to be cognitively gifted Aspies and are often as ignorant as the lay public about the stark realities of caring for someone with severe autism.

Challenging neurodiversity’s power grab of the autism space has led to an exacerbation of my already debilitating anxiety – a common comorbidity of autism. Several autistic defectors from the neurodiversity movement have messaged me privately in support but have admitted they are too scared to express their views publicly. This is understandable. Had I been aware of the unforgiving climate I was entering into, I would have likely avoided the topic altogether, deleted my Twitter account and chosen instead to focus on what I love most: trains. Nevertheless, I feel compelled to keep speaking out.

Tom Clements is an autism advocate and author from Essex. Follow him on Twitter: @tclementsuk

Correction: An earlier version of this article said that Bruce Hall’s son was placed in the Fairview Development Centre. His son lived in a crisis group home next to the Fairview property, but had access to Fairview’s grounds.

Picture by: Luna Rose, published under a creative commons licence.

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Comments

Neil John

6th April 2020 at 11:22 pm

The difficulty I have is with parents who want a ‘label’ for their child to excuse the childs behaviour, having seen this as both a school governor and a Scout leader MOST that were labelled played up to the label, even if they didn’t really qualify for it, having learnt it excused them from any behaviour, including indecent assault.
One of our twin nephews is Autistic, his father plays on it a lot, but our bigger concern is his twin suffers as a result of every family activity being biased in the Autistic nephews favour, if only to keep him quiet. That and his fathers expectation he won’t go to college or university and will become his brothers life-time carer, all too often siblings suffer far more than the Autistic individual, unseen and ignored…

Alex Shurts

6th April 2020 at 7:50 pm

Many thanks for this article. It’s so nice to finally find an article that actually sympathizes with me as an autistic. I can’t stand how the media consistently props up article after article that fetishizes autism as an identity. I myself am 31 years old and despite that i’ve made progress i’m still struggling. I can’t stand when the media that’s bought and paid for are trained to pump out articles only for the sake of money. I’m sick and tired of journalists defending this movement.

Thomas Slater

6th April 2020 at 5:21 pm

Thank you for finally acknowledging the absurdity of the overdiagnosis of autism. How can an extremely intelligent child who struggles with social interaction (what some would call a ‘nerd’ or ‘geek’) be on the same ‘spectrum’ as a child like Katy Price’s son, who needs 24/7 care, can’t wash himself or form proper sentences etc.

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Mike Stallard

6th April 2020 at 10:10 am

Totally agree about trains!

Next door we have a really nice young man who is in a permanent relationship with an essential worker. He comes from a good home.
When he was seven he was naughty and did not pay attention in class.
The teacher got him classified as dyslexic, ADHD and mildly autistic. He then became ineducable. They didn’t bother to teach him to read write or do sums very much. Instead he was sent to the local Comprehensive where at the age of 16 he was put in for GCSE Spanish along with a lot of other subjects all of which he failed. A half hearted attempt at “College” failed too.
Neorodiversity is a dream ticket for a teacher. Classify someone as a long name and you can write them right off! And even send them to an “expert” during your lessons!

James Conner

6th April 2020 at 9:33 am

Parents continue to seek a suitable label to explain their childrens’ stupidity.

Stephen Elliott

6th April 2020 at 12:51 pm

What did yours use?

Linda Payne

6th April 2020 at 8:44 am

Great article and it got me thinking; I’m old enough to have grown up in the 60’s/70’s and I always remember children who were hyperactive and slightly odd (I may have been one of them)-but they were never labelled, went to normal school and mixed with the rest in street play and their families; When my son started school in the late nineties it was suggested that he may be ‘aspergers’ because all he wanted to do is play with lego and K nex rather than join in with the other children; I kicked against that and by the time he was seven things settled down (he had a brilliant teacher in that year who really understood children) He is now 28 and a qualified architect; we should be careful about labelling children, like mental health it could go against them in life

Peter Fishr

6th April 2020 at 9:26 am

In the late 90s and ealry 2000s I taught in special needs education in London. I remember going to a professioanl develpment meeting where a psychiatrist was giving a talk on ADHD. She started off by saying that for years she refused to diagnose anyone with ADHD, as she didn’t believe it existed. I remember my TA and I looking at each other and rolling our eyes, ‘here we go again’. When you meet ASD and ADHD children there is no doubt, except in the willfully blind. Clearly you son wasn’t one of them; but for those who are, early diagnosis, intervention and parental support is critical, for the development of the child and the child and parents’ welfare.
My nearly 4 year old son has mild ASD. He speaks, but has great difficulty understanding simple interactions, especially questions. I managed to focus his obsession onto letters and numbers, so he is starting to read level 1 & 2 ORT books. Perhaps one day, with sufficient good quality intervention early on, he will be able to live a mostly independent life. I live in hope.

Mike Stallard

6th April 2020 at 10:14 am

As a teacher you personally are the good quality intervention. Use your patience, your humour, and let the little chap turn into what he is. Love him.
I live in my family among such men. One is a Vice President of an oil company, one a very senior executive in a world wide company, one an RIBA.
All of them were chucked out of school and University a.s.a.p.
The poorest of them all? A senior teacher with a good degree!

James Conner

6th April 2020 at 10:32 am

Maybe one day you might come to terms with the possibility that your son isn’t as bright as other kids. That’s life.

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