Limitations of the Medical Model for Autism

I had an insight last night that I’m sure would ruffle a lot of feathers and possibly start a fecal meteorological event in some mixed circles if voiced too publicly or too often.

I’m sure it’s uncontroversial here, which is why I’m writing this post here; at any rate I tend to be of the opinion that while it’s helpful to have NT researchers studying autism & writing about it, the real autism experts are autistic people themselves. The experts among experts are the up and coming adult-diagnosed people who are both trained mental health professionals and also have a lifetime’s experience of being autistic. And it’s incredibly insulting and hurtful for a supposed NT “expert” to tell an ASD person that they’re “NOT” autistic, in their professional opinion.  I see this tragedy play out in far too many narratives in the adult with Asperger’s Facebook groups to which I belong.

The real controversial insight I had the other night and mentioned in one of these adult Aspie groups on FB, as a riposte to someone defending the correctness (or at least the practical necessity of) of the “medical model” of (formal) Autism diagnosis (which is indeed required for government benefits, legal protections, etc, because that is how bureaucracies work in general)…I pointed out how gays and lesbians don’t need psychologists/psychiatrists to validate if they’re “really” homosexual or not. THEY KNOW. They know it in their bones, with every fiber of their being. I assert it is the same with the Autism spectrum. We know better than anyone that we are, regardless what someone in a white lab coat with letters after their name may opine about us.

It struck me, the absurdity of the mental image of a hypothetical gay person hoping their shrink will give them the formal “gay” diagnosis…and realized it’s no less absurd for us on the Autism spectrum.  Why would any sane person “fake” being autistic?  Some of us may be more profoundly impacted than others, on different parts of the spectrum from others, but we’re all on the Autism spectrum somewhere, even if it’s only a handful of traits that don’t fully add up to an “official” diagnosis.  I’m very fortunate to live in a white, middle class North American family able to afford my COBRA premiums and use that extended coverage to obtain my Asperger’s syndrome diagnosis in the summer of 2010.  This diagnosis was very fortuitous because it helped me save my new job (thanks ADA!) about 6 months later.  This summer marks my 5th year in that job and I’ll be honored by my local government authority that is my actual employer at the end of this month.

My attitude towards the self-diagnosed is to believe them and grant them the benefit of the doubt.  It doesn’t take very long for the average Aspie to relate key elements of their life story in a few paragraphs.  I’m reasonably well-red, having engaged in a lot of self-study after my formal DX.  I know tell-tale signs to look for, even beyond my own personal parameters (i.e. eye contact isn’t a big deal for me, but I know it is for many Aspies).  Sometimes the length/long-windedness of a Facebook post is enough to click the “Aspie recognition” switch in my head.  I realize government bureaucracies can’t be run on the basis of what must strike NT researchers as highly subjective approaches…how scientific is “Gaydar”, after all?  Yet I feel like I have my own built in “Autisticator” and am pretty decent at picking out my own tribe through behavioral observation “in the wild”.  We need more ASD people to get credentialed in the Mental Health profession to act as advocates for the undiagnosed who are suffering and in need of possible government benefits and legal protections that would otherwise be denied these disabled people owing to lack of official documentation.  Gay people don’t have to prove they’re gay to avail themselves of non-discrimination protections where they exist.  It sounds absurd on its face.  This absurdity carries over in parallel and underscores the limitations of the medical model for Autism and autistic disability.  It’s less like a physical infirmity and more like a neurological mode of being that differs from the norm.  It’s really shameful Autistic people have to jump through barriers erected by skeptical, “old school” NT mental health professionals, some of whom don’t even accept Asperger’s as a real diagnosis, or consciously or unconsciously cling to Leo Kanner’s outdated, narrow views on autism, restricted to only the most extreme cases.  This needs to change and is part of the Neurodiversity struggle for our Civil and basic Human Rights.