I wish that I could take credit for this post, but my mind would never have captured these sentiments so eloquently. Tracy Hutchinson Wallace has been my guide and rock from day #1. As the other half to our support group Autism Spirit, I have always explained our personalities as 2 sides of a coin… balancing, yet complementing each other. I’m the emotional, heart on my sleeve personality and she’s the pragmatic, educational aspect. But I think we are continuously rubbing off on each other and it results in this. That piece of writing that explains perfectly the logistical issues of the medical model of treating autism while exploring the challenges that can be experienced when the views of #ActualAutistics are pushed to the side.
A very brave therapist reached out to me the other day. I say “brave” because I know that my social media self (and me IRL if you are unlucky 😉 ) can be very offputting at times! Anyway, the therapist pointed out that professionals are easy targets for the anger and frustration of parents and disabled communities. They felt that we forget sometimes that they are not just service providers but humans with, often, a significant personal motivation for doing what they do. This was my response…
“Thank you for reaching out. Here’s the thing, you are correct that professionals are seen as service providers. And therein lies the problem. They should behave as if they are PARTNERS and ALLIES, offering supports, accommodations, education AND services to and for Autistics, not neurotypicals. Unfortunately, the medical model of Autism persists in trying to “cure” or “fix” Autistics, despite valid concerns and supporting evidence of the permanent damage inflicted by that attitude. It is disheartening, to put it mildly, to see this attitude demonstrated by a group that is governed by the rule “first do no harm”. It is “privilege” demonstrated in the worst way.
Therapists, as a group, claim to support Autistics, and yet:
- you still use person-first language and functioning labels
- you still design, promote and implement methodologies to “help” Autistics be “more” neurotypical
- you “don’t have a major issue with the information that Autism Speaks puts out, even though that information and the organisation itself promotes an inimical, malignant view of Autism – that’s a disconnect that only neurotypicals can afford to live with
- you don’t use your influence in the public arena to change attitudes of laymen towards disabilities
- you don’t support the view that Autistics should be at the centre of, and drivers of Autism research, instead of being marginalized or ignored
And worst of all:
- you actively profit from your actions or the lack thereof.
Understand, I too was heading in your professional direction before life laid out another path, so I have no problem with people getting paid. I do not accept, however, getting paid to maintain the status quo, when that state is actively detrimental to your patients. Even professionals with personal knowledge of Autism are guilty of this.
Small wonder that Autistics are hostile – you are helping to make life harder for them, not easier. So, for the most part, you “look fuh what yuh get” as we say in the Trini parlance.
Look, it is commendable that your “deep personal connection” to Autism has inspired you and others to do what you do. From what I understand, #ActualAutistics, more than any other group in the various Autism communities, laud your respect for the privacy of your family members and loved ones. But they don’t need you to “advocate as a regular citizen”. When you do that, you are DELIBERATELY withholding two of your most potent weapons in the fight for Autism acceptance:
- first, society’s general acceptance and respect for the knowledge and expertise and experiences of medical professionals, and
- second, for those professionals who are not the primary caregivers, supporters and guardians of Autistics, the extra energy you generally can spare to be allies for ALL Autistics.
Some parental and family allies have the extra spoons to advocate for every Autistic; most don’t, and we could really do with the support and influence wielded by professionals who don’t actively have skin in the game.
If you really want to improve the quality of life for the spectrum of neurodiverse humanity, then don’t just exercise your profession, conduct your therapies and get paid. Instead, listen to actual Autistics, follow their lead in advocacy, make the needs of Autistics the centre of whatever you do and say, and use your privilege wisely. Be an Ally, not an anchor around their necks.”
If you are interested in the work our support group does, please check out this link http://www.facebook.com/autismspirit