The Iron Mask

Hello, and welcome back to The Autistic Writer.

I’ll level with you… this week has not gone as planned. Fate seems to have conspired against me. Actually, I don’t believe in fate, but the phrase fate has conspired against me sounds so dramatic, I like to work it in every now and again. Over the last seven days, I’ve not been very well. Firstly, I started with a mild but annoying cold. This is, I believe, the first cold, or anything even remotely respiratory, I have suffered since February 2016, which was when I had the last of the serious lung infections that blighted my life for several years. The lung problem cleared up when I stopped taking a commonly-prescribed medicine for acid reflux, called Omeprazole. I had taken that drug for many years, not knowing the problems long-term use could cause. It came close to ruining my life. But that’s a story for a different time. Suffice it to say that I fought this cold off pretty easily, but for a couple of days I was at work with my eyes and nose fizzing and running. It was a bit rubbish, considering I had to wear a face mask, too. Overlapping with the cold was an onset of odd stomach pains. Wednesday and Thursday were the worst days, with paracetamol barely taking the edge off it. I was sure I knew what had caused the problem (a dietary error), but it was damned hard sitting at a desk for several hours a day, putting a smiley exterior on, while my guts felt like they were being wrung out by the Hulk. On Thursday evening came a blast of pain so severe I almost blacked out. But later that night things started to ease, and through Friday I only had a couple of twinges. Note to self: go easy on the oats! I’m sensitive to a lot of different types of food. Not, I think, in terms of actual food intolerances as such, but more of an autism-linked IBS and sensitivity situation. Digestive issues are common in autistic people. I need to be more careful.

The upshot of feeling lousy most of the week is that I didn’t get a huge amount of writing done. Nevertheless, there have been interesting developments on that front, as I will explain in Aberrations, below.

At my day job this week, I had a couple of very minor incidents where I got slightly freaked out about hygiene. It’s a thing with me. On one occasion, I happened to be next to another person I know is also autistic, and this person totally understood where I was coming from. On the other occasion, I was around some other colleagues who know I m autistic, and they are so cool about things that can trigger me. Both situations were made almost pleasant because of the acceptance I felt. Acceptance is important for autistic people. I think I’m only just beginning to understand exactly how important it is. Autistic people need to be allowed to be autistic. I’ve written at length in an earlier blog post about how exhausting masking (covering up autism) can be. Masking is a torture many of us inflict on ourselves trying to fit into a neurotypical world. How much worse is it then to be forced to mask? To be driven by outside people to change your autistic behaviours, just to make the lives of neurotypical people around you more comfortable? This happens, and it is a scandal. And chillingly, it happens under a banner of so-called therapy. I’m not an expert on this issue, but I’m learning about it as I go along, and I’ll be talking about ABA therapy below, in The Aut Files: The Iron Mask.


In this week’s blog…

Aberrations: An update on my novel in progress.

The Aut Life: A brief word on how I’m managing my mental health, and coming to terms with knowing I am autistic.

The Aut Files – The Iron Mask: Some thoughts on the scandal forcing autistic people to mask, and calling it therapy.

Aberrations:

As I mentioned above, my writing over the last seven days has been stunted by me not feeling well. I have increased the word count by a measly 1,042 words. However, although I didn’t feel up to typing out prose, I was able to do some work on the structure of the last few chapters. The more I looked at how the story was building to the climax, the more uncomfortable I felt. I looked at the outline for last ten chapters, and was less than impressed with some of my planning. One chapter didn’t seem to advance anything. Another chapter I felt was kind of nice in one way but a bit self-indulgent, and in danger of seeming a bit cartoonish, which does not suit the tone of the story at all. I have a rule with problems like this in writing: If something seems wrong, and you can’t work out how to put it right, delete it and see what happens. As I half expected, deleting this problematic chapter made the story tighter, and gave it a better dramatic impact. Then there were three epilogue-type chapters. One of them didn’t seem to add anything to the story. The others seemed to be taking the character away from the concept he had grown into through the writing. Two of them were deleted, and the other comprehensively re-outlined. These changes prompted other changes; some more deletions, and a little bit of re-writing of earlier chapters will have to be done. The result is that the novel has dropped from 60 chapters to 53! By this time next week, the first draft will be finished. It’s been a hell of a journey.


The Aut Life:

I mentioned last week that I had stopped taking antidepressants due to the nasty side-effects. I was expecting to suffer some problems as a result, but over the last seven days, my anxiety levels have dropped considerably, and my mood has lifted. Despite feeling ill with the cold and the stomach pains, I have felt remarkably positive at times. I know from experience that my mental wellbeing can fluctuate for reasons I don’t fully understand, and so I am trying to steel myself for the crash that inevitably follows the peak. I’m going to try to roll with it.


The Aut Files – The Iron Mask:

Since my diagnosis, I have often wondered what my life would have been like if I had been diagnosed as a child. For a while I had thoughts that maybe, with a bit of knowledgeable support, I might have been helped to be less anxious about going to school, less rebellious, more able to engage in relationships like a “normal” person, and so on. These thoughts have tended to come when I have been at a low ebb emotionally, when I have been exhausted from dealing with the neurotypical world, and losing confidence in myself. But I’m starting to realise now that evading diagnosis in my childhood, the late 60’s and early 70’s, has been a bullet dodged. If I had been diagnosed back then, and offered what was thought to be the appropriate therapy for an autistic child, it would have almost certainly led to something called ABA; Applied Behaviour Analysis. Also known as Behavioural Engineering, this method of dealing with the supposed problem of autistic children was pioneered by autism “expert” Ole Ivar Lovaas. Lovaas has received various awards for his work with autistic children. As recently as 2001, he was honoured with the Society of Clinical Child and Adolescent Psychology Distinguished Career Award. That’s tremendous, isn’t it? So, what exactly was Lovaas doing with this so-called therapy?

The often quoted aim of ABA is to make autistic children indistinguishable from their [neurotypical] peers. The method used was a program of instruction; ordering an autistic child to complete certain behaviours, such as making eye contact, saying thank you, etc, or stopping certain behaviours, such as stimming. Compliance with the instruction was rewarded in some way; praise, or a piece of candy, or some other treat. Non-compliance was punished. Common punishments were: shouting in the child’s face, physical violence, and sometimes, electric shocks. I’m going to repeat that: Common punishments were: shouting in the child’s face, physical violence, and sometimes, electric shocks. Lovaas was widely praised for his approach, because of the success he achieved in changing the behaviour of autistic children. Have a look at this screenshot of an article with a photo showing Lovaas’s “therapy” in action:

I’m going to say that if I was being screamed at, slapped, and tortured with electric shocks as a child that I probably would have changed my behaviour. I suspect the main change I would have made would have been throwing myself under a train. I did consider doing this as a child, and ABA would definitely have pushed me over the edge.


Steve Silberman, autism activist and author of Neurotribes, tweeted this.

Something that puzzles me is that anyone could have thought modifying behaviour, whether through the torture of ABA or any other method, was an achievement. Autistic people have brains that work differently to most of the population. The brain is the seat of consciousness and personality. As discussed at length last week, autism is not something we have; it is what we are. Forcing someone’s behaviour to change does not change the person within; it just drives their needs underground. Imagine being beaten and threatened and terrified daily into not being able to express your true self. What effect do you think that would have on your mental health?

Many autistic people who have endured ABA have gone on to suffer from post-traumatic stress disorder, as described in this article by Henry Kupferstein.

But now, we are in the 21st century, and people are more aware of mental health issues, and autism is gradually becoming more understood. So we don’t have this horrible stuff happening any more, right? Right?

Well, no. ABA is still alive and kicking. Although electric shocks and overt physical violence seem to have been consigned to history, the psychological bullying of ABA remains.

Autism is a great way for neurotypical people to make money, especially from worried and uninformed parents of autistic children. You too can set yourself up as an ABA therapist, and make a living from this. To become a therapist in such an important field, you’d expect to have to undertake several years of specialised training before you could start applying ABA techniques to vulnerable children, right? Again, no. You can “qualify” (for whatever this dubious qualification is worth) by completing a 40-hour online course. I don’t know about you, but pretty much every online course I’ve ever taken (many) I’ve been able to complete and pass with a high score in about a quarter of the expected time. In a fascinating article at Spectrum, a “Registered Behaviour Technician”, Terra Vance, describes the woefully inadequate training and preparation she underwent to be able to start delivering to autistic children therapy she immediately knew was of very low quality.

I am a regular of the autism sub on Reddit, a great online community for autistic people. Barely a week goes by without at least one person coming on with a post asking about getting their autistic child into ABA, and is it the right thing to do. Invariably, they are met with exhortations not to do it, and explanations of why it is harmful, from actual autistic people. Often, this comes as a shock to the querying parents.

Recently, someone claiming to work in the field of ABA posted on the community. This person claimed to be working with a seven-year-old autistic girl, whose “invasive” (the therapist’s word) stimming had increased. This therapist, who also admitted in the post that the she was giving the autistic girl sensory stimulation without really knowing what she was doing, came to Reddit for advice. I want you to think about that. Imagine you are the parent of the seven-year-old autistic girl, trying to do your best for your daughter. You’ve been told that ABA will help. And the therapist has come to a social networking site to ask autistic people who know how awful ABA is, for advice. Hopefully, you can imagine the kind of advice this person was given by autistic people, but if you want to see for yourself, you can find the thread here.

ABA tries to fix the perceived problem of autism, and this is at the core of why the practice is abusive. The practice does not help the autistic person; any behavioural changes that result are just making life easier for the neurotypicals who don’t want to see stimming behaviours, or who can’t cope with an autistic person having a meltdown, or pointing out poor neurotypical logic.

If the assumption is that autistic people are somehow wrong or broken or a problem, then there is little hope of acceptance. We are not here to be fixed by neurotypical people forcing us to pretend to be something we are not. We are not a problem to be solved by torturing us into hiding our true natures. Sometimes we need help and patience and support because the majority of people on this planet – the neurotypicals – have created a world that make it difficult for us to thrive.

We demand the space to be us.


Further reading: As I said above, I am no expert in this field, and anyone wanting a detailed look at the ethical problems of ABA would do well to read The Misbehaviour of Behaviourists by Michelle Dawson.


That’s all for this week. As always, it is a pleasure talking with you. I enjoy writing this blog, and I’ve been getting some nice feedback. Please feel free to leave a comment on the blog, or on Twitter: @Autist_Writer.

I’d also just like to mention another blog, by David Scothern, covering a combination of mental health issues and ethical capitalism. You can find it here: Mortgage Advisor on FIRE.

Until next time, be kind to yourselves.


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