You must be this autistic to ride

I was a little reluctant to blog about this Guardian article because on some levels it makes me sad and I don’t want to bring any additional attention to it. I’ve also been blogging about autism a fair amount recently, when there are OH so many topics out there that I can be wildly over-opinionated about. But I was aware that others were enraged, and they told me that they needed the snark that I can bring to their lives. Mama Cantatrice does good snark.

But first: the sincerity! Yeah I know, that isn’t why you came here, but bear with me.

Why has this Tom Clements chap written this article bemoaning neurodiversity? I’m at a bit of a loss, in some ways, because at some point he clearly regarded himself as a believer in it.  

What he perceives as an inevitable fight between we of the more independent variety of autistic people, and the parents and families of those who are more severely disabled, isn’t new. When I was hanging out on Wrong Planet in 2006 it went round and round. Now, I am very much aware that many parents of autistic kids feel that they aren’t being heard and that the difficulties they go through are brushed off by people who don’t have the same worries. That’s a valid concern. There is a knee-jerk reaction among some autistic self-advocates to any parent who expresses frustration, or says that they’re tired. There are reasons for those knee-jerk reactions, which I’ll get on to later, but I can understand why parents might feel lonely and unsupported.

But let’s get on to some of the asshattery on display in this article. We don’t have to wait long. Straight up in the first paragraph, he states that “low functioning” spectrumites have a hella short life expectancy of around 39. It is indeed pretty shocking. He links to a study that discusses the reasons why that might be. The study groups people by IQ, with Pervasive Development Disorder at the bottom, autism in the middle, and Asperger’s Syndrome at the top. This is a bit of a sneaky way to bring in the functioning labels, so I’m just going to say LF, MF and HF for the purposes of discussing this study, even though I don’t use functioning labels normally – I’ll get onto the issues with them later. LF people have a life expectancy of 39. Why would this be?

If you look at what the researchers found, most of the causes of death are not markedly higher in the ASD population. The rate of death by infection is a bit higher, but within the LF group the big difference is in the number of seizures. Epilepsy is very common in spectrumites, especially those who’ve sustained brain damage, and severe epilepsy can be fatal. This is the reason for the extremely low life expectancy in the LF group. I don’t know if this life expectancy figure has been skewed due to a high percentage of deaths in childhood. The paper also suggests that doctors do not always understand comorbidities with autism and may be giving inadequate care as a result. But what happens next in this article is one of the most spectacular brush-off-non-sequiturs I’ve ever heard:

Severely autistic people have a life expectancy of 36 in the United States and 39.5 in Europe, while their parents and care-givers often experience PTSD and stress similar to that of combat veterans. Mildly autistic people, on the other hand, though far more prone to depression and suicide, can go on to lead productive and fulfilling lives, often blending imperceptibly into the wider population despite their idiosyncracies and social difficulties.

That’s… an odd contrast to make. Especially if you narrow it down to the individual level: Simon passed away after a massive tonic-clonic seizure that disrupted his heart, causing it to stop, whereas Jeff is a plumber and other people like him even though he’s a bit weird. THESE THINGS ARE NOT RELATED.

But anyway. I see you there, Tom. Tommo. Tommolus the Tomific. I see you briefly mention the horrifying suicide rate in the HF camp like it ain’t no thang. You jump on to the productive and fulfilling lives. So fulfilling, our lives. Not quite fulfilling enough to make us not end them, but at least we have a chance of fitting in, right? So, to be more precise and less hand-wavy, the study found that HF autistic people are

nine

times

more

likely

to

die

by

suicide

than neurotypical people are. Autistic women are twice as likely to die by suicide as autistic men, which is unusual because in every other group men have a much higher rate of suicide. I feel like this could be an indication that not everything about life in our part of the spectrum is full of fun and sparkles, and maybe you should think about that, Tommo.

I know, because I have my finger on the research jugular, that the pisspoor state of mental health among autistic people is a cause of great concern and a lot is being done to find out what’s going on. Some of the things causing our increased suicidality are probably inevitable. We will never have a world set up with autistic brains in mind, and the clash between our brains and the world will probably always be a thing. On the other hand, if neurotypical people could be persuaded to meet us halfway, or even somewhere at all, it’d make things easier.

We all know that the rate of autism diagnosis has gone up in recent years, and it’s now possible to get a diagnosis as somebody who is less obviously disabled. I myself was diagnosed in 2008, at the age of 27. For many people, including myself, this comes as a profound relief, after decades of being kicked about by life. What does Tom make of this trend?

The autism spectrum is so all-encompassing that experts are now finally starting to question the validity of the term itself. After studying the meta-analyses of autism data, Dr Laurent Mottron, a professor at Université de Montréal, concluded that: “The objective difference between people with autism and the general population will disappear in less than 10 years. The definition of autism may get too vague to be meaningful.”

Hmm. That… doesn’t sound exactly like what a scientist would say. I instantly suspected that  something was missing from that quote. It was. What Mottron said was “If current trends continue, the objective difference…”

And that’s a very big if. If you’re going to extrapolate into the future, you need a reason to think that the current trend will continue, rather than just talking about “if it does” like it’s a done deal. “Based on the world’s current rate of population increase, there will be seventeen people in my kitchen by 2060!” people say, ignoring the fact that (beset by problems as the world undoubtedly is) all the experts say they expect global population growth to slow and possibly stop in the next few decades. I think we’ve probably reached max autism diagnosis, or we will soon. Yes, people are now being diagnosed with a less obvious threshold for autism. That doesn’t mean that that trend will keep going until absolutely everyone is considered autistic. If as many as 2% of people are diagnosed as being somewhere on the spectrum, there are still 98% who aren’t. We accept far higher rates of depression and anxiety. Autism, which runs the full continuum from autistic AF to not-in-any-sense autistic, needs to have a cutoff point, but that point will always be in some senses arbitrary. We have to live with that.

What Mottron is saying is that, when there are a lot of people who are towards the neurotypical end of the continuum, and these people are disproportionately represented in research studies, that can be a problem. When your research is trying to get insight into people who are more severely disabled, and you get people who aren’t in that group volunteering for the study, you may not discover very much. That is a fair point.

To my surprise, Tom’s example of someone who’s just not damn autistic enough is Temple fucking Grandin. Like… I don’t know, maybe Chris Packham or…  someone… would have been a better example. I’d be a better example. But Temple has written books, tho, amirite? Temple Grandin gives public talks.

Temple Grandin is 72 now, so she’s hardly a whiny millennial who “wants to be special.” She’s also really quite autistic. When she was two years old, a doctor told her mother that Temple had brain damage and would never amount to anything, so she should give up, put her in an institution and forget that her daughter ever existed. Temple Grandin is a perfect example of someone who is definitely autistic and has managed to learn and carve her own niche in the world. Her odd brain gave her a connection with animals and an ability to design complex 3D structures within her mind, which has enabled her to design more humane facilities for farm animals. Now, I’m definitely not saying that every autistic child will be as successful as Grandin. What I am saying is that autistic people surprise others all the time.

Tom points out that autism can be:

…a profoundly life-limiting disorder that consumes every waking hour of a family’s life, a medical disability that entails unpredictable bouts of aggression resulting in torn upholstery, cracked skulls and savage bites.

Yes, that sounds rough. I have no doubt that caring for Alfred (I’m going to call this hypothetical person Alfred) is an exhausting, thankless task. I do think that this kind of caring duty needs to be recognised and respected by society. But… I think it’s harder for Alfred himself. Tom hasn’t talked about what it’s like for Alfred himself at all – it’s as though he hasn’t considered the fact that Alfred is also experiencing the world.

Tom describes some of Alfred’s behaviour as “aggression.” I understand why he’d use that word. Being hit by another person, especially an adult, hurts. From that perspective, it doesn’t matter why they hit you. It still hurts. But the word “aggression” suggests a level of agency in Alfred’s behaviour that I would say he doesn’t have. Alfred is not outside the pub on a Saturday night, punching another dude for “looking at my woman.” Alfred is acting from a state of distress. The world is frightening, confusing and frustrating for Alfred. His senses are crazypants and they torture him, and he can’t communicate that to anyone else. Just as there’s a huge difference between screaming because you want to be obnoxious and deafen someone, and screaming because you’re in agony, what Alfred is doing is not aggression.

There is a long history of carers using words like “tantrum” to mean meltdown, to say “rudeness” instead of social confusion, to say that someone is “aloof” when they’re actually just having a great time inside their own head and didn’t know they were expected to do otherwise.

So: what’s it like being a child with no way to communicate?

Not being able to communicate is a tremendous frustration. If a child has a behavior problem, especially a nonverbal child, you’ve got to figure out what’s causing it. Is it frustration because they can’t communicate? Another problem might be sensory sensitivity, something that’s often ignored. Every time you take the kid into Wal-Mart, he’s screaming. Well, the reason for that is that the fluorescent lights are flickering and driving him crazy, the noise in there hurts his ears, the smells overpower his nose. Wal-Mart is like being inside the speaker at a rock and roll concert.

That’s the kind of insight that might help someone out when they’re looking after Alfred, no? If you can manage to keep his senses from hurting him, perhaps he won’t be in distress, and if he’s not in distress, he’s not yelling and lashing out. Everyone wins.

You know who said this? Temple fucking Grandin. She was a non-verbal child.

Do I know what it’s like to be Alfred? No, of course not. But I do know what it’s like to experience sensory overload. I never go anywhere without fancy metal and foam ear plugs and/or ear defenders, and usually I take both. I know what it’s like to have my brain overwhelmed with sound, to the point where it feels like I’m actually going to die because there is nothing inside my head except sound and it feels like every blood vessel is going to rupture.

The difference with me is that I understand that this is a problem, where it comes from, I have sufficient agency and problem-solving ability to do something about it, and nobody is preventing me from doing so. Which brings me onto these functioning labels. When Tom says:

It has become apparent, not just to scientists but to many in the community, that autism needs dividing into separate conditions, starting with the reintroduction of Asperger syndrome, as an important differentiator between mild and severe variants.

…Nope. Scientists in general are very much going in the opposite direction. And that’s not because THE NEURODIVERSITY AGENDA involves everyone wanting to pretend they’re hella autistic when they’re not. It’s because

Functioning

 labels

don’t

work.

(Oh and Hans Asperger was a Nazi, which is why his name is definitely not coming back.)

As soon as you start grouping people, it all falls to pieces. C. L. Lynch has written an excellent article about why this is, and I can’t explain it better so I’m just going to link it.

Let’s consider another example. Jane and Charlotte both catch measles as babies because their parents are all anti-vaxx idiots. The disease leaves both of them blind. Other than the blindness, Jane recovers completely. Charlotte, however, sustains more extensive brain damage and now has a significant cognitive disability which means she will need carers to support her for the rest of her life.

Charlotte is more extensively disabled than Jane. Charlotte, however, is not more blind than Jane.

Am I high functioning? Many people would say that I’m an obvious case of someone who is. Am I high functioning when I shut down from sensory overload and forget how to speak? How about someone who is verbal and has a work-from-home job, but is unable to leave the house alone without getting lost and having a meltdown? How about someone who doesn’t speak but communicates beautifully via keyboard? What about someone else who is the world expert in a narrow field and makes lots of money through consultancy, but has never had a friend and is unable to go outside without ear defenders and dark glasses? Autism, by definition, comes with weird combinations of being good at some things and very bad at others. This is why you can’t quantify that shit in one measurement.

What Alfred is dealing with is autism as well as a severe learning disability. When you combine the two, unfortunately, they can be more than the sum of their parts. The world is confusing and frightening and you don’t know why and have no control over it. But what Alfred isn’t is more autistic than somebody who can speak and learn new things more easily. Remember that study up at the top that divided people up and looked at life expectancy and such? It defined the “highest functioning” group if they “didn’t also have a learning disability.” There are a lot of people with learning disabilities. Some of them are also autistic. Most are not. The combination, however, is a combination, not the extreme version of autism.

Let’s return to Tom.

Many who self-identify on social media using the #ActuallyAutistic hashtag insist that autistic people must be at the forefront of all autism discourse and that only autistic people themselves can be considered to be true experts in the condition.

I… don’t even know how to snark at this. Isn’t it obvious that that should be the case? Oh sure, there are other people involved, and there should be a space for carers, teachers and scientists at the table. But why would you throw this out as though it’s self-evidently false?

Something you have to remember (and for some reason it’s often forgotten) is that autistic children grow up into autistic adults. Sometimes those adults look like me, sometimes Alfred, and sometimes they look like Temple Grandin. Many of the people who are most involved in autism self-advocacy now are adults who were not considered “high functioning” when they were children. Some of them do not speak, even now, but are able to communicate using a computer. Some of them need to live with a carer, because they’re unable to keep track of their own basic needs. The assumption that all of these people are just a bit socially awkward but want to be autistic because it’s trendy could not be more wrong.

Such an attitude has led to the marginalisation of autistic people who, by virtue of their disability, are unable to speak and rely on others to do so on their behalf… Rarely at a neurodiversity event, particularly one that aims to present autism as a competitive advantage in the marketplace, will you find an autistic person with an IQ of lower than 30 who is prone to lashing out and soiling themselves.

It doesn’t lead to the marginalisation of Alfred. Alfred is already 100% as marginalised as he can possibly be. I think it’s also fair to say that Alfred probably doesn’t care that Gerald thinks he’s autistic when he’s actually just a bit introverted. And obviously, if it’s an event on the theme of neurodiversity and work, there’s not much point in Alfred being there. He’s just going to be stressed out and get nothing out of it. The event doesn’t have to be relevant to every single person on the autism spectrum for it to be worth holding, for God’s sake. Autistic people have extremely high rates of unemployment, and longterm unemployment is a risk factor in suicide – you remember how high the suicide rates are, right? Having employers understand that we have strengths as well as weaknesses could do something to ameliorate that, and it’s not just silly self-indulgent wannabe autistic peeps who are saying this. You know who has spent the last few years consistently telling the world that we need to move away from a model of autism that focuses entirely on deficits, and focus instead on the significant strengths in our weirdo brains? Laurent Mottron. Wasn’t he that guy who Tom brought in earlier to support his argument? That’s the one.

Tom presents the neurodiversity movement as though it popped up last Tuesday, out of nowhere, pushed forward by a bunch of barely-odd wannabes who know nothing about autism. That’s quite clever, in its own way, because it does make the movement look rather silly. It’s a bit disingenuous though, isn’t it, Tom? You’ve described yourself as a neurodiversity advocate in the past, so you know a bit more than this position suggests. And, like every liberation movement, you have to understand the history of it. You need Stonewall to get to Pride.

The thing that probably turned things around for autistic people from all over the spectrum was the development of technology. For many of us, the internet in particular has transformed our lives. It makes it far easier to communicate without all of the offline problems we encounter. We’re playing to our strengths online. And of course, for those spectrumites who don’t speak, technology has provided new ways to communicate. Suddenly, a large group of people whose very brain wiring left us vulnerable to extreme isolation… had numbers. And suddenly we had a voice that said things that the established “autism community” didn’t want to hear. That’s where the conflict began.

Right in the middle of this maelstrom was the US charity Autism Speaks. A gabijilizillion words have been written about them, and you can do an internet research deep dive which brings you out into another galaxy. (If you want to do that, you can start here.) So the very, very abridged version is that Autism Speaks has a long history of presenting autism as the enemy. Sometimes in a very literal sense, as with the I Am Autism video which features the memorable lines:

“I am autism. I have no interest in right or wrong. I will plot to rob you of your children and your dreams… And if you’re happily married, I will make sure that your marriage fails. Your money will fall into my hands, and I will bankrupt you for my own self-gain…”

Honestly, I almost wish my brain was so fabulously and melodramatically evil.

There was the Autism Everyday video which showed a mother talking about how her young autistic daughter’s disability had driven her to the point of wanting to kill them both. The only thing that stopped her, she said, was that her other, neurotypical, daughter needed a mother. She was saying all of this to the camera with her autistic daughter in the background – don’t forget that non-verbal autistic people can often understand more than others think.

As it turned out, the newly emerging autistic self-advocacy group weren’t all that keen on Autism Speaks. It’s a bit much to have a charity supposedly for the benefit of people like you, but what it’s actually doing is campaigning on the basis of how awful it is for other people to put up with you. Or indeed funding research into “prevention” which is actually looking for antenatal/genetic markers of autism so that parents-to-be can opt for abortion.

Then there are the “treatments” and “therapies.” Parents and carers have gone for various options in an attempt to knock the autism out of their kids’ heads. Many “treatments” for autism have not been designed to make life better for the autistic children in any way. They are aimed at making the kids less autistic. They’re all pseudoscientific and some of them are dangerous, but there is, still, a widespread notion that there’s a neurotypical child in there somewhere, trapped, and needing to be rescued at any cost. So the kids get subjected to all sorts of things. Dangerous (and potentially deadly) chelation to remove the heavy metals that aren’t in the brain in the first place. Bleach enemas. Those pointless, highly restrictive diets. These may not seem like such a bad thing (especially compared with the others in this list), but let’s not forget that most of us on the spectrum are already extremely fussy eaters due to sensory issues with texture / colour / smell. Oh yes, then there’s just (and I’m actually going to put in a CW here for a goddamn link, because it is horrific) good old-fashioned electro-shock torture. And applied behavioural analysis, or ABA.

A squiggedygiggedyillion words have been written about ABA, so if you want to do an internet research deep dive, you can come out on the planet Quarzakov 5, and have a soothing kraroosh bean shake with the person who decided to read about Autism Speaks. That’s nice. I hope you become friends. If you want to take that deep dive, start here. In brief, it involves trying to train a child to behave in a less autistic way. This can mean rewarding eye contact with sweets, or withholding positive attention from a child who is stimming. It’s basically like dog training for children.

ABA is still a great source of conflict in the United States. Many of the autistic adults who experienced it as children have spoken out to say that they found it harmful – even to the point of developing PTSD. It doesn’t reduce the autism in someone’s brain; it just makes them afraid to behave in autistic ways. And given that the world is already pretty frightening to an autistic child, habits like stimming are absolutely vital as self-soothing coping mechanisms. Punishing a child for stimming in order to make her less autistic is like taking away a blind person’s guide dog to make her less blind. The lessons that are taught are not “How To Neurotypical” – it’s learning that you are not good enough, that you must always behave in a way that is unnatural to you, and (perhaps most ominously) adults have the right to demand total obedience.

But because ABA has pushed so hard for the PR of being “science-based” it’s often the only kind of therapy for autistic kids that insurers will pay for. As a result, parents are pushed into a position of wanting to help their kids and not knowing what else to do. Sometimes they get defensive and insist that “our ABA therapist isn’t like that.” Sometimes their ABA therapist really isn’t like that. It’s not unusual, these days, for people who work with autistic kids to market their services as ABA when they aren’t really, in order to get that insurance coverage. When autistic self advocates point out that ABA is harmful and has left them with psychological scars, parents respond “but our previously non-verbal son is talking at last! What did you want us to do – give up on him?” Of course not. There are other interventions available. In the UK, ABA is not used nearly so much. And yet our autistic kids grow and learn things. You aren’t the same person you were at five years old either. Be parents.

The primary message behind the neurodiversity movement is this: Stop trying to defeat autism. Stop holding out for a cure. Love the kid you have. Accept the brain they have for what it is. We’re all different and we’re all valuable. There are many reasons why looking for a cure is a pointless waste of resources. For one thing: it won’t work. Autism is likely a condition of the brain being wired up along odd routes, and structured in slightly odd ways. You can’t undo that. Where the brain is damaged – as it likely is in Alfred’s case – you can’t undamage it. The brain is really hard to fix.

But the main thing is this. If you took the autism out of my brain somehow, I wouldn’t be a happier, healthier, more productive version of myself. I would be a completely different person. Everything about my experience of the world, my personality, my likes and dislikes, the things that frighten me, the things that bring me joy: all of these are filtered through the prism of autism. There is no version of me without it. Most of us on the spectrum who are able to think these things through understand this and that is why we say that we don’t want a cure. There are, of course, some autistic people who do want a cure, because they just find life too damn hard with the problems they have. I don’t dismiss their pain. But I think that it’s a far more realistic goal to work with the brains that they already have than to keep yearning for a new brain that’s not coming. No cure does not mean no therapies, or support, or interventions. But when you as a parent insist that a cure is what you want, you’re saying that you wish you didn’t have the child that you have – you want a different child with fewer problems.

So. We found the internet, found each other, and realised that we were in a shitstorm of anti-autistic fuckery. Do we want autistic people to be at the forefront of all discourse about autism? You’re damn right we do. When you exclude us you get Autism Speaks and electric shocks and bleach enemas. You get neurotypical people talking over us in their thousands. You get Autism Warrior Moms™ earning a living by blogging all manner of privacy-violating disability inspiroporn about their children, who get no say in the matter. When you leave it to neurotypical people, you get a whole autism industry, with therapists and non-profits and books and magazines and experts on the subject of how to make those awful autistics be less of a pain for everyone else. Out of all of this came the #ActuallyAutistic tag. Not as Tom suggests, as a fashion statement, but as more of a “oh no you fucking don’t, neurotypicals. Not again,” statement.

I often hear others bemoan neurodiversity because “that’s all very well for someone like you, but you’re ignoring Alfred. Look at him. He’s a mess.” And I wonder why they assume that I’m ignoring Alfred. Is it because they themselves can’t see Alfred’s existence as valuable, so they assume that nobody else can either? When they say “if Alfred could function like you, I would consider him cured.” But why stop at me? I am not the neurotypical child you’ve always dreamed of. My autism has caused all manner of problems for me. But it’s me, all the same.

Self-advocates, many of whom possess an above-average intellectual ability as well as great insight into their own condition, celebrate their autism as a core feature of their identity and often promote their neurological difference as a strength.

Oh hey, Tomhilda. Why don’t you just go ahead and tag me next time?

Neurodiversity isn’t about pretending that autism is a bucket full of unicorns. We know it isn’t. But why do you think we’re wrong to do this? This is just the defiant pride that builds up a marginalised group. I mean, sure, you can tell us it’s a stupid approach to have when we also have problems, but that’s still the equivalent of “oh sure, you may be intelligent, but why would you be proud of who you are when racism / sexism / homophobia / transphobia exist? Wouldn’t you rather be part of the group that doesn’t have to deal with those problems?” We’re allowed to be proud, to celebrate the strengths that come with our weird brains. In fact, I’d say that if we want to stop the high rate of suicide among autistic adults, we damn well need to learn to celebrate autistic people.

Tom seems, from both this article and his twitter feed, to be most concerned with gatekeeping the autism diagnosis. He frequently rails against self-diagnosis. Even the UK’s National Autistic Society have said basically “eh. If you’re an adult and have just realised that the whole autism shebang fits your experience, that’s basically good enough for us.” (I paraphrase.) Getting a diagnosis as an adult can be a massive pain in the arse. Depending on where you live, it can be an expensive pain in the arse. I was incredibly fortunate in that I was able to go to my GP, get a referral to a specialist, and have the whole thing done on the NHS for free. It was even pretty quick.

But going to a specialist and saying “it me” isn’t going to result in anything more productive than “ya, it you.” The main reason for getting a diagnosis as an adult is so that you can back yourself up if you need adjustments at work or in education. It shouldn’t be necessary to get a diagnosis in order to persuade smug gits on the internet(1). How autistic should you be in order to identify with that condition? I don’t know. Do you read up about the condition, and your stomach drops, and your life suddenly makes sense in a way it didn’t before? Does it help you feel less alone? Does it help to understand that there are many coping strategies that are helpful and effective,     and specific to autism, and maybe those would help you? Then I don’t begrudge you for identifying with it. You can come on up to our treehouse. I’m not the autism police. I understand why self-diagnosis bugs Tom, and why it’s probably worth restricting scientific studies to diagnosed people (or indeed, people with the specific issues you’re seeking to learn about – now there’s an idea). But in general, I think that life is hard enough. Too many of us are dying of suicide. It can be hard for us to make friends. As far as I’m concerned, if you want to be here, you’re welcome.

 

  1. Or in other areas of life. I have encountered so many of these smug gits.

3 thoughts on “You must be this autistic to ride

  1. Superb as always, delivering on snark and information all at once.

    Also screw smug gits on the Internet.

    Like

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