Articles of Misunderstanding

Standard

The “Articles of Understanding” that GRASP and Autism Speaks have written, are not about understanding at all. The only thing they will promote is misunderstanding on all sides.

Alison Tepper Singer’s article can basically be reduced to the old, “LFA bad. HFA good. Don’t you get it yet?” stereotype that looks good on paper if you don’t understand what’s behind it. I emailed her urging her to read Getting the Truth Out, but I never received any particular reply. Her argument shows no subtlety or understanding of the real issues, just the standard and fairly naive response that of course people would want to cure someone like her daughter, who she portrays in an entirely negative light (and with the standard litany of “shocking” descriptors). Not that portraying her in an entirely negative light is so surprising in someone whose only stated reason for not killing her (obviously very loving, by the way) autistic daughter is because she has a non-autistic daughter at home.

Carley’s, though, is little better. He also discusses those he regards as LFA, but seems to not have spent enough time around us to do more than repeat hackneyed stereotypes. Happy in our own worlds? Give me a break. Not that, given the hostility I’ve heard about (from several GRASP members) in parts of the GRASP community, towards non-speaking auties, most of them have probably never even met one of us. And that “white-walled room” on my website is my living room. I don’t really find the concept of so-called regression all that frightening (or all that accurate).

So the entire debate between the two of them, as regards those of us who have at some point or another been labeled low-functioning, is between “Low-functioning autistic people are bags of misery and dysfunction,” and “Low-functioning autistic people are ‘happy in their own worlds’.”

Sorry, but, both of you? It’s way more complicated than that, and portraying the divides in the autism community that way (as well as the divides in what people think of those labeled at some point as low-functioning) does a total disservice to all of us. And makes a horrible organization sound more “understanding” than it is, merely for patronizingly informing us of the existence of people who can’t speak etc. (trust me, lady, I’ve noticed).

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6 responses »

  1. Strange thing I’m noticing here. Anyone who is to be pitied is what I call “emotionalized”. They are all “so happy” or “so so sad”.

    And those who are respected are not. What if I were to say, “The chair of the National Autism Board, Ferna Glumwatt, is happy and at peace right now.” or “ABA therapists are fairly miserable and downtrodden but some are happy in their own little world.”, “Surgeons are usually happy in their surgical arenas.”. “The head of the board of radiology clinicians are often sad and in deep need of care.”. Most would say WTH? But for us? It’s a daily comment on my life and the lives of others with my condition/label/whatever that I can do without. It helps them to think I’m in a state of emotionalized drama so they can then play their feel good role of “the helpful helper” or “have helped” or “understander”. Ick! I want them to go away, fly a kit, read a book. I could do without their pity and their sick perverted “feelings”.

    Perhaps I need to write a book. “The poor little tiny ABA therapist that could.” or “the ugly curebie.” (and are all our worlds “tiny”, “cute”, and “full of poppies”?) Yes, I spend hours and hours a day in my cute vast rolling valleys of poppies and daffodils. (ok, some days I do but it’s for half an hour at a time thank you., other days, it’s usually just thinking about the idiots at work like it is with most people but perhaps I’m a tad more fixated on it :D)

  2. I keep having shivering nightmares too sometimes of the lady who would caress the side of my cheek ever so lightly and say in a sweet downy shrill baby voice “I understand”. I felt like picking up my tray of oatmeal, throwing it in their face and running away. (but then that would have been just another “cute little meltdown” eh?)

  3. AMANDA PLEASE PRINT THIS ONE. OTHER HAD TEXT MISSING. THANKS.

    I didn’t want to read the second article, the Singer one.

    I kinda thought the GRASP one sounded sort of OK until it was pointed out the illogic and waffliness and therapy-speak of it. And, hello, if you think we are all one spectrum, why do you want to further divide us up into an alphabet soup, then? And what about people who are a B in one part of their life and a Y in another? I am not the only one.

    So I finally read the Singer article. Eeeew. Someone in AFF forum or someone whose blog name I can’t remember, did a good takedown of this, by pointing out what abilities Singer had admitted her daughter has (hardworking, sweet, starting to communicate by voice, etc.), while saying she has no abilities. What gall she has, to say a person is “not abled” at all?!?!?! And what must it be like living in a house where they think that of you?!
    I am just guessing here, and I hope this isn’t view-from-above-ness… but IMO it would take someone very strong to maintain a nice personality in such environment. If that were me, I could see being full-on 24/7 bitter and bitchy by age 9, instead of just having some instances of acting out.

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