Autism is not an illness: The problem with how we treat Autism

So far in this series I have talked about the fact that I do not think Autism is an illness, despite the way the dominant discourse around Autism runs. I have also talked about how I think the diagnostic process for Autism contributes to the damaging illness discourse. Next I’d like to tell you where I am at in my thinking about the popular treatments for Autism. 

If you are thinking “if Michelle doesn’t think Autism is an illness why is she talking about treatments?” then I suspect we are largely on the same wavelength. I do not think Autism needs to be treated. That is not to say that I think Autistic people should not attend therapies if they find them helpful. One of my kids benefitted greatly from some Speech Therapy and another found Occupational Therapy incredibly helpful in managing sensory processing challenges.

What I am saying is that I do not think that treatments designed to manage behaviours with the aim of making a person appear less Autistic have any place being promoted as suitable approaches to helping Autistic people.

I am aware that this statement will not win me many friends in the community of parents of Autistic children, but I am saying it anyway.

Approaching Autism as something that must be treated, symptoms dealt with, undesirable behaviours minimised is nothing short of harmful. I would go as far as to say behaviour modification approaches to treating Autism will inevitably destroy the Autistic persons sense of worth, confidence and ability to advocate for themselves. I am specifically talking about Applied Behaviour Analysis (ABA) and pretty much all treatments based on it.

There has been a lot written about ABA and the problems it causes, so I’m not going to pretend any of my thoughts on this are particularly original. I did, from very soon after my kids diagnoses, feel very uncomfortable with the idea of trying to cure Autism. I did feel uncomfortable with many of the strategies suggested to me to “manage behaviour”. But I was not, at that stage, able to articulate what specifically made me uncomfortable. It wasn’t until I met some Autistic activists that I began to understand fully what the problems were. I always give credit where credit is due, so rather than rewriting what others have said I am going to share a couple of articles with you (all links will open in a new window, so it is safe to click on them, go read, and then come back).

The first is by Sparrow of Unstrange Mind. It is very hard to choose just one thing to quote from Sparrows article on ABA. The section I have chosen is a bit long, but it is very important. Please do read it.

“ABA therapists are trained to find out what your child loves the most and hold it ransom. Often, it’s food. If your therapist suggests withholding food as a form of behavioral therapy, run screaming. That is harmful. If your child’s therapist will not allow you to remain in the room during a session (they will usually tell you that your presence will be a distraction that will keep your child focused on you instead of on the therapy they need to be paying attention to) that is a big warning sign. If you are able to witness your child’s therapy sessions and your child is spending a lot of time crying or going limp or flopping on the floor or showing signs you recognize as indicators of anxiety or fear, beware the therapy. If the therapist insists on pushing forward with the therapy when your child is crying or going limp instead of giving your child recovery time, run screaming. Therapy that trades your child’s sense of safety in the present for a promise of future progress is exactly the sort of thing that Autistic adults mean when they talk about abusive therapy.

“Therapy should make your child better, not traumatize them, possibly for many years, potentially for the rest of their life. A therapist might tell you that “a little crying” is a normal thing, but I was once an Autistic child and I can tell you that being pushed repeatedly to the point of tears with zero sense of personal power and knowing that the only way to get the repeated torment to end was to comply with everything that was asked of me, no matter how painful, no matter how uneasy it made me feel, no matter how unreasonable the request seemed, knowing that I had no way out of a repeat of the torment again and again for what felt like it would be the rest of my life was traumatizing to such a degree that I still carry emotional scars decades later. It doesn’t matter whether the perpetrator is a therapist, a teacher, a parent, or an age-peer: bullying is bullying.

“In my opinion, the goal of therapy should be to help the child live a better, happier, more functional life. Taking away things like hand flapping or spinning is not done to help the child. It is done because the people around the child are uncomfortable with or embarrassed by those behaviors. But those are coping behaviors for the child. It is very important to question why a child engages in the behaviors they do. It is very wrong to seek to train away those behaviors without understanding that they are the child’s means of self-regulation. When considering whether you have made a wise choice in what therapy you are providing your child or not, you want to always remember a few cardinal rules: behavior is communication and/or a means of self-regulation. Communication is more important than speech. Human connection is more important than forced eye contact. Trust is easy to shatter and painfully difficult to re-build. It is more important for a child to be comfortable and functional than to “look normal”.”

You can red the full article by clicking > here <

The next quote is from Neurodivergent K of Radical Neurodivergence Speaking.

“A consequence of everything being about “children with autism”: no one thinks about the adults. They desire desperately to make us indistinguishable from peers (using a very interesting definition) and then as soon as we meet that goal, we’re allbetternow. No one spares a thought for the adults who, years ago, were declared to have made the goal, hit the holy grail of “normal enough”.

“Indistinguishability isn’t a moment though. It is an unending job, and it gets more and more complex as you age. Demands keep increasing: academic demands, including those that require figurative language and abstract thinking, increase. Time management demands increase. As we grow up, we are expected to take on more responsibilities at home and eventually move into our own homes. We’re expected to get a job, do that job, maintain our own homes, all at once.

“And maintain that visage of normal…….”

You can read the whole article by clicking > here <

If you are interested in reading more from these great writer and others, there is a great list of links on the PACLA Facebook page- click > here <. I can’t tell you how glad I was to come across all these great writers and activists. I hope you will find their words as helpful as I did.

I am not the only one listening to them, either. As more and more parents take time to listen to Autistic adults, there is a growing body of similar feedback about ABA from parents as well. I feel fortunate that we were never directly exposed to ABA in our family. Others parents whose children have been are now speaking out against it, alongside Autistic adults.

“You are put to “work” when you’re only two or three years old, or as soon as it has been decided that something is “wrong” with you. Early Intervention is required, in order that you be “fixed” and/or “rescued.” This is not optional for you. It is mandatory. You have no choice in the matter. And if you can’t speak, you can’t even complain. So it begins. The endless conditioning. The continuous demand to stop being who you are and “fit in.”

“And nearly the entire world of medicine and science and education is conspiring to maintain the status quo of the deficit model”.

Richard Long, quoted on Emma’s Hope Book.

You can read the whole article by clicking > here <

As parents it is time we stopped and really thought about what we expose our Autistic children to. We must ask ourselves some tough questions. We must ask professionals some tough questions. How can behaviour modification therapy, that demands children behave in ways that require unquestioning compliance, and that are counter to the coping strategies that come naturally to them, be beneficial for children? And what are the implications in the life of that child once they are an adult?

There are alternatives. If what I have written and shared here does strike a chord with you, I would recommend you go over to Nick Walkers blog and read his article > Neurotypical Psychotherapists and Neurodivergent Clients <. In it Nick shares ideas that will help parents know what to look for in a therapist that will help their child.

We can, as parents, do better and choose better for our children than therapies that try to make them fit in and appear more “normal”. We can, and we should. 

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One thought on “Autism is not an illness: The problem with how we treat Autism

  1. SIMONE says:

    Thank you for this. We (yes I say we because we are a family), were diagnosed 6 weeks ago. I am only attending therapies that help my little girl understand/cope with the world. To me her Autistic self is perfect, she doesn’t need to have the Autistic trained out of her, she needs to be herself, end of story.
    Therapy should be always considered as a helping tool, not a changing tool.
    Bless you for saying all this out loud. Xx

    Like

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