Polly's pages (aka 'Donna Williams')

Ever the arty Autie

Who IS their autism?


Hi Donna, sorry to trouble you, but I am currently reading a 2005 article by Brigitte Chamak about the autobiographical writings of people with autism and she contrasts your position and that of Temple Grandin and Jim Sinclair. Chamak says that Temple sees her particular gifts as inextricably linked to her autism and quotes Sinclair as saying that his autism is a “way of being … It is not possible to separate the autism from the person.”

In contrast, Chamak writes, you consider autism as “external” to yourself and that it must be fought because it is the root of your problems in understanding yourself and others. Is that an accurate depiction of your view of your autism, please? (Sorry for these questions – I am just very eager to check that people are not misrepresenting your views.)

Chamak is being a purist, reductionist… Not all views must be black or white, left or right…. Life is more dynamic and complex than that.

My question is WHICH Ego-Syntonic (part of self) things Jim or Temple consider their ‘autism’… Schizoid PD?, OCPD?, Dyspraxia?, Sensory Integration Dysfunction? Sure… go for it, I’ll go with that.

But if you ask if gut, immune, metabolic disorders and their impact on brain fog, brain malnutrition, visual-verbal-body agnosias, brain injury or the brain chemistry imbalances associated with high Quinolinic Acid (ie mood, anxiety, compulsive disorders… incl things like Exposure Anxiety)… are Ego Syntonic (part of self)?… then I say, walk in MY shoes… then you tell me… these things don’t feel Ego Syntonic (part of self), they feel Ego Dystonic (conditions that impinge upon my experience of self, my expression of self).

Does meaning deafness, meaning blindness look autistic? You betcha. Do the compulsive involuntary avoidance, diversion, retaliation responses of Exposure Anxiety look autistic? You betcha? Does significant brain fog or brain malnutrition, food allergies or neurological impacts of gut, immune, metabolic disorders look like information processing disorders we equate with looking autistic? Yep, they can. Do tics, OCD, mood or anxiety disorders make someone look more autistic than they would without these? Yep, to the extent most co-morbids go undiagnosed and presumed ‘part of the autism’, especially in those without verbal or typed communication.

Take aphasia, there are many autistic adults just now gaining typed speech whose aphasia was presumed ‘their autism’ (particularly if they also had movement disorders or tics) who previously lived down to low expectations because of this. Do they proudly identify with their aphasia? A lot of them don’t and feel imprisoned by it.

So what makes OCPD, Schizoid Personality Disorder, Sensory Integration Dysfunctions or Dyspraxia so much SEXIER as ‘the autism’? Or does it come down to the spokesperson and whose name gets out there most pervasively? Then isn’t that about PR?

What amounts to autism in one person with no significant health disorders is different to what amounts to it in one who does…. do I ALSO have aspects of my autism that are ego-syntonic? sure… but I call those my personality … that happens to be an ‘autistic’ one… or dyslexia/dyspraxia associated neuro integration differences… I don’t feel any need to claim those are ‘autism’ because many non-spectrum humans have elements of those too…. but sure, if you want to call them my autism then I have parts of my autism that are ego-syntonic and parts that are ego-dystonic.

Do I confuse PTSD/DID with my autism… no… do I feel those with autism may have predisposition to dissociation – yes – and hence be more susceptible to dissociative disorders including PTSD, derealisation, depersonalisation.

Do I think EVERYTHING I am is due to my autism? That is ludicrous… I have curly hair, I like metallic blue, I enjoy nature, I’m an artist… so what? Those are about being a HUMAN, I’m a human. Does my art often express Exposure Anxiety, Agnosias, an autistic social-emotional reality? Sure. Am I so much more artistic because of my autism? Because of agnosias, yes, but we’re really being archaic in fixation with the autism word.

Sure, befriend the ‘Autism’ word, work with what’s crippling (like Exposure Anxiety), advocate for what you love and identify with, celebrate difference… but don’t paint autism with one brush… autism is not Temple-colored, its not Jim-colored, its not Donna-colored… autism is the unique color produced with each individual autism fruit salad in interaction with that person’s personhood and environment.

Don’t glorify health disorders, don’t be reductionist in claiming everything is one’s autism… that’s where I’m at… what I stand for – see the HUMAN BEING, no matter what condition/s they have.

There will always be those who are in love with the sexiness of their label
they will be threatened by those for whom its a health related disorder

Let those who need label related pride dissect the label, take the sexy parts, wrap themselves in those like a cosy blanket and seek to cast out the rest. But in the end someone will be a relic. I think we exited the behavioral model. Then we entered the (sexy) neuro differences model and we were fed all manner of new stereotypes that didn’t pan out, discovered that neuro differences were not unique to the autism population and those desperate enough painted themselves as Einsteins or X-Men but we got over it. Then we had a labeling frenzy until all services were overburdened and anyone with a label got the same funding. Now we’re entering a medical model which should see more equitable funding going not to labels but based on needs. I have no problem with that. I have no problem with society ‘growing up’.

Donna Williams, BA Hons, Dip Ed.
Author, artist, singer-songwriter, screenwriter.
Autism consultant and public speaker.


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