Autism is a disability, not an identity

The ‘neurodiversity’ movement trivialises what can be a debilitating and life-denying disorder.

Tom Clements

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Topics Politics

There was once a time when the term autism actually meant something. Now it seems as if every other person self-identifies as being at least somewhere ‘on the spectrum’. Many attribute their ‘autism’ to a slightly obsessive or nerdy interest or a degree of social awkwardness. Either way, autism as a diagnostic label has been relentlessly trivialised. Autism has come to be seen by many as just one facet of ‘neurodiversity’ – as simply a ‘different way of being’ rather than the profound disability it really is.

Steve Silberman’s NeuroTribes was lauded upon its release as the authoritative history of autism – even despite its bizarrely sympathetic portrayal of Nazi collaborator Hans Asperger (from whose name we get Asperger’s syndrome). The book helped to mainstream the neurodiversity movement, which celebrates autism as an identity. A thriving community of ‘neurodivergent’ people has emerged and is especially vocal online. The #ActuallyAutistic hashtag has become a key identifier for those claiming to be autistic, even though many haven’t been formally diagnosed as such. Indeed, self-diagnosis is widely accepted and is often encouraged. The neurodiversity movement also promotes a ‘social’ rather than ‘medical’ model of disability – the former is said to be less stigmatising and more tolerant and inclusive.

The inevitable result of de-medicalising something as serious as autism is that people start to use the condition in much the same way as transgender identities – to achieve a much-vaunted victim status and to boost the self-esteem of the needy and narcissistic. When this happens, the true victims of autism become marginalised.

The sort of autism which entails headbanging, screeching, nappy-wearing and frequent visits to A&E from epilepsy and uncontrollable bouts of aggression is rarely mentioned in the neurodivergent community. Parents of profoundly autistic children who speak about their struggles are routinely rebuked by the new crop of identity-first neurodiversity advocates, often in extremely harsh terms. My sense is that those who have embraced autism as a form of identity do not want the world to know about the ‘other side’ of this often tragic and life-denying condition.

My own life straddles the extremes of the autism spectrum. I’m an Aspie (a slang term for someone with Asperger’s), while my younger sibling is profoundly disabled through autism. Although we share the same label, it is more than apparent to anyone who meets us that we have two very distinct conditions. I am verbally fluent while my brother can utter only very simple words. I have a full-time job and live independently while he will require care for the rest of his life. I can prepare a basic meal while he needs help to make a piece of toast.

Asperger’s was once diagnosed as a separate condition to autism, but the two were amalgamated in DSM-V – the authoritative diagnostic tool for psychiatric conditions. This was a huge mistake, in my view. Autism is far too broad a label. The difference between the crowd of people who identify as neurodivergent online – who often present themselves as an autism community and a barometer of autistic opinion – and the type of autistic person you might meet at a special-needs school is stark, to say the least.

In the online sphere, autism and neurodiversity are worn almost like fashion items by people who can often blend imperceptibly into the so-called neurotypical population. ‘Stimming’ – ‘self-stimulating’ repetitive movements such as flapping and rocking that can be soothing for autism sufferers – is celebrated in the form of ‘stim dances’ that are uploaded to YouTube or social media.

‘Neurodiversity stands as the civil-rights issue of our day’, according to self-described ‘neurodiversity scholar’, John Elder Robison. For the likes of Robison, autism is akin to being black in a white-dominated world. Autistic people are being held back not by any disorder but by a prejudiced society. The prospect of finding a cure for autism is likened to a form of eugenics.

Cognitively able autistic speakers regularly extol the virtues of neurodiversity and describe the distinct ‘gifts’ that autism confers in lengthy essays and at large conferences. Meanwhile, many with severe autism languish in their rooms, isolated from the rest of the world, confined largely to a world composed of their own narrow and often infantile interests. My own brother – angel though he is – is now pushing 30 and yet he spends the majority of his free time watching Thomas the Tank Engine videos on YouTube. He has a diet limited to chicken nuggets, oven chips and – if we’re lucky – baked beans.

The disconnect here is obvious. Yet people like me who point this out are relentlessly demonised for doing so. In a cult-like manner, the autistics who dissent from the neurodiversity script are treated as heretics and subjected to social-media witch-hunts. Jonathan Mitchell, a long-time opponent of neurodiversity and autistic identity politics, is regularly bombarded with angry phone calls, emails and death threats. Judith Newman, author of To Siri with Love, has been dog-piled relentlessly for writing that she once contemplated a vasectomy for her autistic son who, due to the nature of his disability, she worries may struggle with the demands of parenthood.

It is high time that society took a more objective view of autism and the suffering it entails. It may be true that some people find solace in accepting and even taking pride in being autistic. But for many who suffer with autism – not to mention their parents and carers – this is simply not the case. Autism is first and foremost a disability, not an identity.

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

Picture by: Lightspring / Shutterstock

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Comments

tony noculak

17th November 2019 at 8:16 pm

Psychiatry is a pseudoscience and we’ve all been had. The only winners are the medical profession and the pharmaceutical companies who grow rich convincing us all that our myriad behaviours are ‘illnesses’, ‘illnesses’ that unfortunately don’t respond to the treatment, ‘illnesses’ that don’t respond to the pills but keep on believing and one day they’ll get there. In the meantime your life will be ruined worrying that you have some horrendous mental ‘illness’ that the clever doctors have convinced you you have. Good luck with a cure.

madeup name

15th November 2019 at 3:32 pm

I am what they call “Aspergers”. Far from being a label to bear with pride, I have been in a position where I have had to hide it, otherwise I would lose my job… and my job in a very left-wing public sector organisation, where “celebration” of such things is mandatory.
The reason I had to hide it was that I was being bullied out of work and smeared by a colleague who badly wanted or needed to be promoted to the position our boss was due to retire from, and I was more qualified than both of them, and they felt threatened by me.
The briefing against me and gossip escalated into a full-blown campaign because I challenged his bullying and gossiping against other people. I naively believed all the posters on the walls when it came to these things, but it wasn’t long before I found management recruited to his cause too.
Lies and accusations came next, and I was suspended, investigated, and cleared. Then more lies and accusations came, and the suspension and investigation that followed was longer, and ascended all the way to the top of the organisation as managers and directed stepped out of the firing line. As someone on the autistic spectrum this had a major debilitating effect on me, and my natural response was to go scientific and evidential and rules, and battle it out, knewing I was innocent. I did not factor in that people would lie and not follow rules and be overtly political and tribal. In the end they tried to make me redundent (although the job was not being made redundant) under threat of harming my career. I had to resign to ensure that I had a clean reference. People from the organisation got me sacked from 4 jobs in row after leaving by smearing me illegally outside the organisation, but I can’t prove it. Union abandoned me, even though I had all the things I needed for a tribunal.
At occupational health meetings with the Dr, he wanted to be as helpful as he could be and knew my disability, but I knew that if it went on my record, I would not be able to work in the specialist area I worked in again, and my career would suffer a slow suffocation and my income would be hit hard as they found other capability ways of getting rid of me.
The reason I had to hide my disability was that I worked in a very specialist area where health and safety was a critical factor, and due to international guidelines, if I had anything do with mental disabilities or mental health, it would preclude me from working anywhere in this area again.
I had to hide it. I’m sure I could have used it to claim all sorts and twist arms of unions and the organisation, but the long-term cost to me would have been too much.

People make these laws and campaigns with the best intentions, but human beings, particularly cliquey duplicitous British people in the workplace (and I am native British), are capable of the most vile, callous, and cretinous behaviour with no care about the impact.

I lost my home, and nearly my family; my health and my career was devastated, but not completely.

Don’t talk to me about labels, rights, unions, etc… it is all words… the people who work in these enriched environments are vicious, tribal, and grasping. They use this stuff as just more pieces to play with on their Machiavellian chessboards.

As someone on the autistic spectrum, I don’t see any benefit to strutting around advertising it.
I once sat in a director’s office, where she talked to me like I was a child, because she believed that that was how you are supposed to deal with “people like me”, never mind that I have had to grow up without any special treatment and have more degrees than her. Similarly, getting an interview just because you tick a box, doesn’t really give you anything but false hope. If employers don’t want to hire people of a particular demographic, they are capable of finding legal ways of navigating around it. Compelling people to hire people of particular demographics doesn’t seem much better really. They will put people in out of the way roles where trouble can be avoided.

I will end with this. The APA’s DMV systems is probably one of the most harmful systems in the world. The APA seems to be one of the most heavily politicised organisations going, and seems to wilfully use its system to influence and coerce society and government policies. The APA to me is sinister and dangerous organisation that has been undermining western civilisation for decades.

Arthur Golden

14th November 2019 at 12:52 pm

Very good article although i must admit I really don’t have time to think about “neurodiversity” when I am trying to help my own 47 year-old son who is completely nonverbal (no speech at all) with severe autism but seems to have a satisfactory life involved in his local community. I also wish to help others with similar needs, even thousands of miles away such as your almost 30 year-old brother. I am sure you and parents have done the best you could but it may be worthwhile to consider what might be new ideas. I can be reached at golden.arthur@gmail.com

Peter Aeschlimann

13th November 2019 at 5:18 pm

Tom, very good and well balanced article from the heart.

Labels are good and bad at the same time, but of course having a huge start/end spectrum don’t help anyone.

Overall all people in the autism spectrum need some kind of support and therapy to adapt in a better way to todays society (every place in the world is different by the way) And for that reason the labeling is important to have diagnose that trigger a treatment to improve those weaknesses, as any “normal” kid in other areas. The idea is not to be ‘normal’, the idea is to happy with yourself and to be a constructive person for the society and the environment we share.

Now the word disability is another topic. Every “normal” person has strength & weaknesses at the same time and that make us who we are. My point of view of this article is that we cannot put Tom in the same sack (Label) than his brother, knowing in some people those weaknesses are real disabilities and the person and families need more support than those ones with mild symptoms.

For all levels of autism, other disorders & “normal people” early intervention is key to improve the quality of life (Label could be positive)

When talking about disability we need to be more pragmatic to reinforce the help for those families that really need help and support (the gigantic misunderstood spectrum doesn’t help)

Sorry for my writing, English is not my first language… but clear enough ; )

Julie Weis

12th November 2019 at 1:40 pm

As a parent of an autistic son who is realtively independent, but still requires a lot of guidance, I very much agree with this article. I love my son completely, but if I could help him overcome the many challenges he faces due to autism I would do so without hesitation. Romanticizing autism is not helpful. More than once I have people in the special needs field tell me what a blessing autism is. They get upset if I voice frustration over dealing with my 17 yr olds behavior problems. Again, I love my son but I would not celebrate any child being diagnosed with autism. It very challenging for both the person with the diagnosis and for all who care for and love him/her.

Alex Shurts

12th November 2019 at 12:16 am

Thank you so much for this article. I seriously wish more people in the media were like this and would be more balanced at pointing out the pain and suffering that many, but not all autistic people such as myself go through on a daily basis. Sadly, most of the media isn’t like that. As a result theirs this one insulting article that shows autistic adults playing with toy’s and teddy bears. It’s a disgrace and a reminder of how the Nerodiversity movement is a Trojan house for the anti abortion movement that is really an SJW movement in disguise to further their goals.

https://www.jsonline.com/story/news/solutions/2019/10/24/autism-community-long-marginalized-becoming-agent-social-change/3812459002/

If the Nerodiversity movement really cared about preventing the abortion of the disabled, they’d know that the pain and agony of those families that have been ruined by the this illness have been strapped for cash.
https://www.orlandosentinel.com/health/get-healthy-orlando/os-families-cost-of-autism-20180702-story.html

It should never be up to them to determine whether or not there’s a cure, but for the individual. Sadly This isn’t what the Nerodviersity movement wants to let happen. Hopefully that will happen in the future given the development that has been made towards it.
https://www.wsj.com/articles/autism-research-should-be-financed-like-venture-capital-1506638131

https://health.ucsd.edu/news/releases/Pages/2017-05-26-century-old-drug-potential-new-approach-to-autism.aspx

Anyway, thank you for this article. In a sea of articles that serve as an example of what’s wrong with the mainstream media this writing gives me solace in a media that cares about nothing, but add revenue. This article is the opposite of that. It’s a sign of what the media should be.

Richard Wheatley

11th November 2019 at 8:29 pm

Thank you Tom.

Nate Watkins

11th November 2019 at 7:49 pm

This is another huge mischaracterization of the neurodiversity movement. I think what he doesn’t understand is that yes, disability can be hard sometimes, but it also shapes our moral compass, our thoughts, our perception of things, and therefore it shapes who we are. Disability is more than just the “dis”. No one celebrates not being able to do certain things on their own that other people can, but disability should never be confined to just that.

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11th November 2019 at 5:54 pm

My last month paycheck was for 11000 dollars… All i did was simple online work from comfort at home for 3-4 hours/day that I got from this agency I discovered over the internet and they paid me for it 95 bucks every hour…. click here ======►► http://www.golden.jobs67.com

Jamie White

11th November 2019 at 4:44 pm

I think the value of your article went down the minute you mentioned transgenderism. I don’t if you intended to limit your audience, however, there are plenty of trans people who aren’t seeking gender reassignment to create victimhood and mentioning that is likely to create victims where they previously did not exist.

David Corless

11th November 2019 at 11:34 am

Thanks for writing this, your younger brother sounds a lot like my son. Like a previous commentor i fear for him when my wife and i are no longer capable of caring for him. If being unable to care for yourself is not a disability, what is?

Lord Anubis

11th November 2019 at 11:18 am

Funny how all these conditions were much rarer in the past.

Mind, back in the 1950’s when my Mum was a teacher, the way in which unruly children were regarded and the ways in which they were dealt with was very different than how they are handled today. (And they certainly were not pandered to or treated as “Special” 😉 )

Her opinion on the matter was basically that If you can train a Puppy, you can train a Child.

Nate Watkins

11th November 2019 at 7:50 pm

It’s not that these conditions were “rarer”. It’s just that people with said conditions were locked away and shunned by society. They’ve been around since who knows when.

Bear Mac Mathun

11th November 2019 at 8:22 pm

Interesting observation. The only evidence based approach to managing autism has its roots in the Pavlovian/Skinnerian behaviouralist school of psychology.

Yes, children with severe autism were hidden and treated as mentally defective: but high functioning children tried to hide it, usually unsuccessfully. Also they were targeted by pederasts, and are currently being targeted by “gender theorists” and trans activists.

Linda Payne

11th November 2019 at 10:08 am

It happens in mental health too, I’ve met a few claiming to be bipolar but strangely not taking the medication for the condition, interesting that no one self diagnoses as schizophrenia and personality disorder, the unpopular labels with a negative reputation.

Nate Watkins

11th November 2019 at 7:52 pm

Considering you’re a woman, I really think you should read what a feminist site says about neurodiversity: https://everydayfeminism.com/2016/03/neurodiversity-101/

Alex Shurts

12th November 2019 at 1:18 am

Try telling that to the people with Autism whom end up either homeless or killed via suicide.
https://medicalxpress.com/news/2018-06-autistic-people-greater-homeless.html

https://www.spectrumnews.org/features/deep-dive/hidden-danger-suicide-autism/

Besides. Just because she’s a women doesn’t mean she has to be feminist, the same way you don’t have to be a men’s rights activist.

adrian lord

11th November 2019 at 7:18 am

You know there’s something gone wrong with a diagnostic category when patients and relatives SEEK it and are angry when denied it.

jan mozelewski

11th November 2019 at 9:56 pm

I think at least some of this has its roots in people needing to feel special of different in any way they can. (Be it a phobia, an allergy, a mental disorder, whatever.) I have seen many examples of people actively seeking one of these labels. It isn’t so much of a cry for ‘help’ as it is a cry to be in some way marked out as ‘different’ or requiring special attention. (the other side of the coin from special needs.)
I have no doubt at all that there are many people out there who suffer from autism. They need and deserve special help. What baffles and saddens me is the need for so many people to label themselves with something, anything, in order to feel of value.

Bear Mac Mathun

11th November 2019 at 6:56 am

Thank you for this article – it has expressed something that has been my experience.

I am very tired of “autism parents” talking superficially about the struggles of dealing with their children, but concluding that autism is some sort of blessing and that they would not want their children to be any different.

Autism is a huge disability, and I wish my son wasn’t autistic. If there was a therapy guaranteed to remove the condition I would do it in a heartbeat.

The other impact it has had is that every morning I wake long before dawn and contemplate my death and what that will mean for my very vulnerable son. Although he will always lack the mens rea to be charged with a crime, he can always be incarcerated and mistreated in institutions. And we have seen all institutions guilty of abusing the vulnerable.

Linda Payne

11th November 2019 at 10:10 am

Yes there has been publicity over young people with autism in these institutions, I wish you and your son all the best for the future, its very hard looking after a disabled child

Bear Mac Mathun

11th November 2019 at 8:15 pm

Thank you, and thanks for your understanding.

Beth Wild

13th November 2019 at 11:49 am

My granddaughter is ten years old. I love her more than I could ever describe. But yes, if there was a way to remove her autism, I would do it in a fucking minute.

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