Autism Advocacy is not a zero-sum game

One of the banes of blogging is planning to post on some thing and then having something else come up. I was going to write about the Tori Amos concert on Sunday (short version: Tori and support act Yoav rocked the Theatre of Marcellus), but MJ has answered me. Originally, my reply was going to be a comment, but I realised that it was too long to be just a comment. For starters MJ, thanks for clarifying that you have three daughters on the spectrum.
This comment from MJ piqued me.

“The sad fact of the matter is my children’s only hope for anything even approaching a normal life is to lose most of their autism or learn how to function in spite of it.”

Well, what form would a game changer like that take?
A Targeted Gene Therapy? Exceptionally unlikely, and it would be prohibitively expensive even if it came to pass.
Medication? More likely but still very unlikely and it would have a high possibility of severe side effects.
A new learning technique? Hmm, that sounds very plausible.
A new assistive technology? Also very plausible.
Here’s a final analogy for everyone. As a software test analyst, I have an interest in the fields of usability and accessibility. Usability is officially defined as “the extent to which specified users can use specified software to achieve certain specified goals with efficiency, effectiveness and satisfaction in a specified context of use”. Accessibility is the extent to which disabled users find software usable.
What does this have to do with anything? Well, there’s a correlation between accessibility and usability. Usable software (whether an application, program or website) is typically more accessible than less usable software, and accessible software is more usable than non-accessible software. And this brings me to my point.
If a new assistive technology or training method that was capable of helping your daughters appeared, MJ, I’d advocate for it. Why? Because even though I’m high-functioning, my autism still causes me problems. Currently I’ll never be a Test Manager and I’m unlikely to make Test Lead. Anything that could help them would almost certainly benefit me.
Autism advocacy is not a zero-sum game. You shouldn’t be viewing it as one.

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About autismjungle

I am a Software Test Analyst. Shortly before I turned 21 I was officially diagnosed, although I had long suspected I was autistic. Welcome to my blog
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2 Responses to Autism Advocacy is not a zero-sum game

  1. MJ says:

    I don’t believe that I have ever suggested that autism advocacy is a zero sum game. My original post on ASD was about not forgetting that there are people with autism who aren’t able to communicate effectively let alone advocate on their own behalf. It was about remembering that what is good for one person on the spectrum is not necessarily what another person needs.

    And that is where my concern lies – some self-advocates forget that they can only speak for themselves and make sweeping generalizations about what autism is or is not and what will help a person with autism and what won’t. A classic example of this is when people like Michelle Dawson actively speak out against ABA. This position, if it were to be widely adopted, would be directly harmful to many children with autism, mine included.

    As for what form a game changer would take, that depends completely on the child in question. There are some treatments that are currently available that can be game changers if they are well suited to the child’s specific problems.

    For example, ABA has been a game changer for all three of my daughters. For my older two daughters, a restricted diet has been a massive game changer. I don’t think they would be able to function as well as they can if they were not on a restricted diet.

    In my opinion, other game changers will come from a greater understanding of the biological problems that a lot of children with autism have.

    All three of my children (and many other children with autism that I know of first hand) have a wide range of biological issues that can translate into real problems. For example, why can’t my children maintain a suitable level of zinc even with supplementation? Ditto for iron. Why do they have problems maintaining an appropriate level of protein even while their diets are extremely high in protein? Why don’t they have enough cholesterol? And why are their immune systems so misregulated?

    Now you might be thinking that none of these things have anything to do with autism, but I think you are wrong there. Each of the items I listed above has been documented in multiple studies of children with autism.

    The real game changer will be when the source (or sources) of problems like these are identified and solutions found. In my opinion, the real game changer for many (if not most) people with autism will be when the biological problems underlying their autism are found and addressed.

    If you look carefully, you can see the beginning of this trend in some recent work in related conditions such as Rett Syndrome and Fragile X. The biological mechanisms of Rett’s are being unraveled and Rett-like symptoms have been successfully reversed in mice. For Fragile X, there are drugs that are currently in testing that have the potential to fix the underlying problem and restore the ability of a person of any age to learn more normally.

    Don’t get me wrong. I’m not saying that assistive technologies aren’t a good thing. In addition to using behavioral therapy, speech therapy, sensory supports, and appropriate evidence based biomedical treatments, we also try and use any and all assistive technologies that we can with my daughters. But assistive technologies cannot address the underlying problems – they can only help mitigate them. And a lot of the time, mitigation isn’t enough.

  2. autismjungle says:

    You’ve never suggested that Autism Advocacy is a zero sum game? Let’s have another look at the comment from you that triggered my rant, shall we?
    “So, no, when you advocate, you do not advocate on behalf of what my children need. What you do is minimize and marginalize them – especially when you compare their disability to something like women’s rights.”
    You were suggesting that when I advocate, I “minimize and marginalize” your autistic girls. I hate to be a bromide, but walks like a duck etc.
    As for ABA, may I remind you that there are many ideas as to what constitutes ABA. You’ve heard of what’s been happening at the Judge Rotenburg Centre, I assume? Well, some people would consider the aversives used there as ABA. I’m pleased that ABA has been a game changer for your three. Just remember that abuses have occurred under its name.

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