The #autistic medical model makes me sick

iceberg floating in water
There’s more to my autistic self and experience than the medical model can conceptualize

Note: This piece is about me — and only me — it’s my deeply considered opinion, based on my own personal experience of inhabiting this planet for over half a century. You’re free to believe whatever you like about the true nature of autism. But this is my stance (right now). If you disagree, write a better blog post and tell me about it. 🙂

Lately, I’ve come across a number of bloggers talking about how autism is more than just a “difference” for them. It’s a genuine disability. They suffer from it. They have family members who appear to suffer intensely from it. Autism is the source of tremendous pain and struggle for them and their loved-ones, and there is no way they’re ever going to sanction autism as a “difference”. It’s too disruptive a force in their lives, for that to ever happen.

I also had a brief exchange with someone last week who actively embraces the idea of autism as a disability, and they align themselves with the disability rights movement. They have the best of intentions, I believe, and from a philosophical point of view, I can agree with the value in doing that.

There are a lot of autistic people who are disabled. There’s a whole lot they cannot do, and my never be able to do, because of their issues and traits. I know a handful of autistic folks who wouldn’t last a day in the working world I inhabit. I’ve also known some autistic folks who do extremely well in my work environment, but struggled terribly with other issues.  Autism is no joking matter, when things are at their worst. I’ve been through the proverbial “wringer” many times, myself, and I have to continually make conscious choices for or against things, because of the effect I know they’ll have on me.

One day, I can be completely laid out by my issues. The next, those very same issues lift me to sublime heights. If I remove the causes of my pain, I remove the source of so much inspiration. It’s all a matter of degrees with me.

For the record, I don’t consider myself disabled. Yes, autism can be a disabling influence in my life, but its effects are temporary and mutable. It’s like being a sprinter who has to run a marathon, every single day of my life. My routine exhaustion and need to remove myself and recharge (lest I begin to implode from overwhelm and sensory overload) is conceptually no different for me than the results of a strenuous workout. Every day is strenuous for me. I’m constantly testing and pushing myself. Does that make me disabled? I don’t think so. It makes me different in ways that are more demanding than the average person experiences.

Is a thoroughbred racing horse disabled, because it can’t eat the same types of grains as other horses? Because it is so high-strung and hypersensitive that it develops inexplicable white spots on its legs? Is it disabled, because it’s temperamental and prone to outbursts? No. It’s a thoroughbred. It’s a unique and different kind of horse, and when it’s allowed to do what it does best, you’d never ask it to be anything different.

And I come back to it again, is autism itself THE disabling thing?

I’m not so sure. I mean, being autistic predisposes me to overwhelm, hyper-sensitive pain and discomfort, as well as the occasional meltdown/shutdown. Much like having fair skin predisposes you to getting sunburned, if you don’t use sunscreen. In the case of fair skin, the solution is not to change your skin, add more melatonin, or convince yourself the sunburn doesn’t really hurt. It’s to take steps to avoid sunburn.

And that’s where I see the medical model of autism going afoul of my autistic person. According to the medical model, autism itself (or in the above example, fair skin) is the root of the problem, and it needs to be eradicated. It’s a disorder. It’s a dysfunction. It’s an aberration that — for the sake of smoother functioning of society — needs to be changed in some way, if not gotten rid of entirely.

Classifying autism as a diagnosable disorder (and I’ll freely admit, the idea of diagnosis appeals to me, not because of the medical overtones, but because of the science — Science!cue Thomas Dolby) makes it a “thing” that needs to be fixed, that needs to be addressed. It removes it from me, as a person, and turns it into the cognitive-behavioral equivalent of a tumor, a mass, a growth of some kind. Maybe the “mass” is benign, for the most part. Maybe it just causes occasional discomfort. Or maybe it impinges on nerves and causes me unspeakable pain. In any case, it’s something separate and apart from me that arises from a physical cause and is addressed as a distinct (but disposable) aspect of my life experience. According to modern medicine, this condition, this disorder can (and should) be treated.

The thing is, it’s all more complicated than that. Yes, my body is differently “tuned”. Yes, there are experiences that others take for granted, which are unbearable to me. Yes, there are many aspects of my life which are physiologically uncomfortable, even painful, and depending on my state of body and mind, those aspects may be more or less extreme. But is a physical/medical approach the one and only approach I should take, when it comes to managing my situation?

Is changing the essential makeup of fair skin the only way to avoid sunburn?

Obviously (to me, anyway), there’s more to it. There should be more to it. Because what parts of life are ever that simple? Few, if any.

There’s the whole environmental thing. And the whole social thing. And the whole accommodations thing. And the whole pro-active self-care thing. There’s me taking care of myself, and there’s having other people to help watch out for me.  There’s my diet, there’s my exercise, there’s my social circle (or lack thereof). There’s my inner state, my outer circumstances, my interactions with the world around me… That all comes into play in an intricately interconnected dance, so that I cannot possibly ascribe to only the medical model as a way to explain and address my autistic experience(s).

It’s all very well and good to seek physiological explanations for why things are like they are with me. I tend to turn to biochemistry and neurobiology for explanations about why people behave like they do, and in some cases, they offer greater clarity. Certainly more quantifiable data.

But to look at those quantifiable data in and of themselves, with no connection to the outside world and the artificially created circumstances… that’s just asking for trouble.

Because then the problem originates in my system. It says there’s something wrong with ME, my physiology, my own personal context. It seems to absolve the outside world of any kind of credit or culpability and treats my system as a self-contained, hermetically sealed entity that has a mind of its own and does what it pleases… just ’cause it feels like messing with me.

To overlook the effects of environment, as well as human-made complications and challenges, does my physiology a disservice. It makes it sick. It makes ME sick. It makes us out to be disordered, in and of ourselves, rather than in relation to hostile circumstances.

Expecting me to just motor through life, carefree and happy-go-lucky, regardless of extenuating conditions is like, well, expecting a fair-skinned individual to walk across the Kalahari Desert without any cover-up or sunscreen, and not be sunburned. It’s like running a thoroughbred hard, putting them up wet, and then repeating the process again the next day — or that very same afternoon — and doing it again. And again.

So, that’s my “take” on the medical model, as it applies to me. I’m sure I’ve missed some important nuances, and I am probably over-simplifying things, here and there. Or maybe I haven’t, and I’m spot on, all across the board.

Bottom line: the medical model may work for some things. But my autistic nature and experience? Nope. Doesn’t do the job on its own.

And I’m sick and tired of being treated like I’m sick and it’s all my (and my autism’s) fault.

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30 thoughts on “The #autistic medical model makes me sick

  1. I thoroughly agree with this. The so called medical model takes a narrow view of ‘normal’, what is out side of it is supposedly dysfunctional and ill but who exactly is setting the parameters? Autistic persons may have amazing gifts just not fully appreciated by the mainstream. Great post.

    Liked by 3 people

  2. Your medical model for autism seems to disasociate the disease from the body but that is not my experience in the UK. Autism is a developmental syndrome which is written in my DNA and so cannot be fixed but can be managed which implies that the external environment has to be taken into consideration. As for the disability issue, I think I am going have to do some writing to explore that. Interesting. Thanks for you thoughts.

    Liked by 2 people

    1. VisualVox

      I probably wasn’t totally clear on some points. Yes, I absolutely agree it’s developmental syndrome written into our DNA. The thing is, it’s not its existence which is problematic — the environment plays a massive role, so it’s not only a medical condition. It’s a way of being that is made more challenging by circumstances — many of which can be mitigated or avoided. Does that make more sense?

      Liked by 1 person

      1. I assumed that you were referring to your experience rather than your understanding in the post, sorry if I implied otherwise. I am now wondering if it is the definition of disease or illness that is the issue. In it’s widest sense dis-ease, means not-at-ease and so anything that shifts us out of our normal well being could be called a disease. Viruses are not a disease in themselves, it is what happens when their find their way into our bodies (the environment) that causes the disease. In the same way autism isn’t a disease in itself, it is what happens when we interact with an environment (e.g. other people) that causes the unease. I personally don’t think it is helpful to distinguish between mental and physical health because our mind and body is one being but that’s probably off topic a bit.

        Liked by 2 people

      2. VisualVox

        I’m sure you’re right 🙂 I’m pretty exhausted (mentally and physically), right now, so I’m not able to answer as well as I’d like. Maybe next week, after I catch up with myself… 😉

        Like

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  4. I’m touched by reading your blog post.
    My autistic son is one of the most amazing individuals that I’ve ever met. He is one of a kind. As his Mom I am still learning about him even though he is 24.
    It is good to hear other’s perspectives on autism. It is not understood and much needs to be done to bring awareness.

    Liked by 1 person

    1. VisualVox

      Thank you very much for writing. I hope you and your son can find a good balance – and yes, the more of us share and understand ourselves, the more awareness there can be.

      Like

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  8. Rhiannon

    I wrote this exact thing today. But far less eloquently. Autism is a part of what makes me who I am not all of it. I may just have eaten a mars bar for dinner but that doesn’t mean I can’t make coq au vin.
    I do think that part of it is dependent of how well you function in the world though. If you’re successful by NT standards it is a lot easier to be autistic as well or at least that has been my experience.

    Liked by 1 person

    1. VisualVox

      Yep – at the very least, if you can do a decent impression of NT success… Of course, many of us can — echopraxia and all — but it takes such a toll! Good heavens, it takes a toll.

      Like

      1. Rhiannon

        Or if I could expand:

        I can care enough (there is incentive) to do a decent impression in the short term
        OR
        I’m thinking about something that really engages my brain and I’m happy enough to respond to an NT person on autopilot.

        The first situation takes a toll- what I like to call ‘buffering’.

        Liked by 1 person

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