Just Stimming…

A land we can share (a place I can map)

Dangerous Assumptions

with 25 comments

There is this thing that happens sometimes.

Parent has an autistic child. Autistic child doesn’t speak, or their speech isn’t an accurate window into what they are thinking. Autistic child is presumed to be very significantly intellectually disabled.

Years later, a method of communication is found that works for the child, and it turns out that they are in fact very smart. Very smart! The parents are overjoyed. They begin talking about presuming competence, the least dangerous assumption, that not being able to speak is not the same as not having anything to say.

They are so, so excited.

And they start talking about all the incorrect assumptions they had. If we’d known, they say, we wouldn’t have done X. If we had known they could read, think, hear us.

And it’s a big problem, because the way they talk…..they think the problem was that they treated their child like they were intellectually disabled, and they weren’t. But that’s not the problem. The problem is that they thought their child was intellectually disabled, and so they didn’t treat them like a person.

These revelations, about presuming competence, human dignity, and the least dangerous assumption—they don’t apply only to kids who are secret geniuses. They apply to everyone. They are the most important for the kids who really do have intellectual disabilities, who really can’t read or use full sentences and who really do need extensive support. The people who came up with these terms came up with them for a population where there is very little doubt that significant disability is a factor. These terms don’t mean assume they aren’t actually disabled. These terms mean assume they are a person, and remember what you don’t know.

When the neurodiversity movement first got its legs, oh so many years ago, we got a LOT of pushback from people who thought we were denying disability. And we had to be clear that we meant everyone. And I worry, more and more, that certain very academic circles have left that behind, in practice as much as in theory. It makes liars out of the rest of us, and it makes a lot of work very, very difficult.

If I told the parents in question that I am thinking about this, they wouldn’t understand. They’re not saying intellectual disability doesn’t exist, they would say. But the truth is, they’re either saying that, or they’re saying thank god, it wasn’t my kid.

And it’s a slap in the face, every time.

Written by Julia

December 21, 2014 at 4:39 pm

25 Responses

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  1. Glad to see an update here.

    usevalue

    December 21, 2014 at 5:57 pm

  2. You have just put your finger on what bothers me about the very same thing. I couldn’t come up with such an accurate and succinct explanation, but you are EXACTLY right.

    Sherron0

    December 21, 2014 at 6:30 pm

  3. Reblogged this on Spectrum Perspectives.

    Patricia

    December 21, 2014 at 6:52 pm

  4. This is so true. I have read all the stories, (my daughter runs a disability library) and when I hear parents of other children yammering on it grates on my nerves. Our Sped Director here saw Restraint and Seclusion: Hear our Stories, and actually said to me, “we have to be sure kids like Peyton don’t fall through the cracks, that just terrifies me, the prospect of missing that.” I wanted to strangle him. He thinks he can identify with the “trapped” ones, but won’t fill in the cracks for everyone. In spite of all the research showing how much better everyone does if everyone gets basic human rights and dignity.

    goddesscottage

    December 21, 2014 at 9:18 pm

  5. Reblogged this on Lemon Peel and commented:
    Please read this. Please read this as many times as it takes. I’m not sure how many times it will take. So just…keep reading.

    emmapretzel

    December 22, 2014 at 1:25 am

  6. Reblogged this on Creatively Maladjusted and commented:
    A very important point.

    Tyro

    December 22, 2014 at 2:48 am

  7. Thank you so, so much for writing this. It really needed to be said.

    josiahd42

    December 22, 2014 at 5:59 am

  8. Yes, this is important. When people ask me if I am intellectually disabled, my answer is: does it matter? I don’t know if I am.

    Glad to read your writings again!

    Amy Sequenzia

    December 22, 2014 at 11:46 am

  9. julia, this is poignantly important . epically . im plea it is understood by persons
    all . peyton

    Peyton Goddard

    December 22, 2014 at 2:07 pm

  10. I’ve been having a debate with myself over the issue of ‘presuming competence.’ I think you’ve nailed it for me as to why. Yes, if it means accept people with ID/DD as humans it’s great. I’m afraid people are taking it to mean not having a disability.

  11. and where is the gratitude that their parents, even if they were wrong in their approach, did not give up on their child. Sorry, but I am offended by the idea that because a parent was wrong, but still loved their child, that they therefore harmed their own child. I am very familiar with this type of heightened narcissism attitude. Sadder still is if the child grows up and does well, they may still harbor resentment towards the “mistakes” their own family made while they were growing up.

    Alessandro Machi

    December 22, 2014 at 10:56 pm

    • If someone did something harmful, even with the best of intentions, it is still harmful. It is more useful to all involved to commit to doing better than it is to say “be grateful I sort of tried”.

      Kassiane Alexandra S.

      December 25, 2014 at 3:58 pm

    • “Sorry, but I am offended by the idea that because a parent was wrong, but still loved their child, that they therefore harmed their own child.”

      But people harm other other people without meaning to all the time. Not just parents and children.

      People are very, very *likely* to harm other people without meaning to if they harbor attitudes about those people that excuse harm, or that tell them that harm is impossible.

      Countless people do love their children, but still harm their children. And many of those children ARE grateful not to have been given up on. That doesn’t mean they weren’t harmed. It doesn’t make them obligated to deny the harm or to say it doesn’t matter.

      I am *confused* by the idea that just because someone doesn’t intend to harm their child, that they are incapable of doing so.

      chavisory

      December 26, 2014 at 12:43 am

  12. Reblogged this on Restless Hands and commented:
    I work with kids of all ability levels. To me, they are all brilliant in some way, and I celebrate their every accomplishment.

    There are the ones I know will go far, assuming no one breaks them too badly– the ones who show that “genius” streak already, in spite of language delays or motor skill difficulties.

    There are the ones whose intelligence and potential I cannot judge at all.

    And there are, at times, those I think will always need major support.

    And I adore them all. I respect them all. They all deserve to be acknowledged as individuals and treated as real people. They deserve friends, fun, loving families. They deserve to have their preferences noted and their personalities appreciated. They deserve to be talked to, listened to (even if they can’t use words), read bedtime stories. They deserve to be dressed in nice clothing and taken out for treats. They deserve a turn at activities. They deserve the chance to try to do things themselves– over and over and over. They also deserve to have someone do things for them or assist them when needed.

    Restless Hands

    January 3, 2015 at 12:44 am

  13. i am just seeing this. by god this had to be said. thank you, thank you., and thank you. sharing in 5,4,3 ..

    jess

    January 16, 2015 at 1:03 pm

  14. Blown Away. Printing to hang in front of my eyes every.single.day.

    Tina Andrews

    January 16, 2015 at 3:43 pm

  15. Yes. And to see the proof you only have to look at the story of Carly Fleischmann to see it.

    Planet Autism Blog

    January 22, 2015 at 3:03 am

    • Okay, but you’re kind of proving the post’s point right here?

      Carly was presumed to be severely intellectually disabled, and turned out not to be, and everyone went “See, see, presume understanding!”

      But the way Carly was treated as a child wasn’t wrong because she wasn’t really intellectually disabled. It was just wrong. It was wrong whether or not she was intellectually disabled. It IS wrong when people who DO have severe intellectual disabilities are treated that way.

      If something is wrong to do to a kid who isn’t really intellectually disabled, then it is wrong to do to someone who really, really is.

      chavisory

      February 1, 2015 at 7:58 pm

  16. Maybe I’m one of those parents. I hope not but someday my son might tell me otherwise. I have so much to learn and have really made a lot of mistakes. My thinking is constantly stretched and challenged. I’m thankful for voices like yours that cause me to really question just about everything. This, in particular, was a really important read for me and will certainly expand how I talk to others about presuming competency.

    Christine

    January 30, 2015 at 1:40 pm

  17. My son cant speak…he Still tests low…he’s very intelligent BUT if he were actually what ridiculously inaccurate tests presume him to be? He would still deserve exactly what I try to give him now…even truly ID ppl can and do communicate and deserve to be listened to and respected!

    camelynelayne

    April 11, 2015 at 11:20 pm

  18. Reblogged this on Melissa Fields, Autist.

    melissaautisticfields

    June 6, 2015 at 8:21 pm

  19. Reblogged this on autisticreformedcalvinist.

    christyautisticwalk

    June 8, 2015 at 1:00 pm

  20. YES! Even if the child cannot respond EVER due to disabilities that limit their ability to respond, that doesn’t mean they can’t still understand they are being spoken about disparagingly. That doesn’t mean the words won’t hurt.

    J. L. R. Star

    September 18, 2015 at 3:09 pm

  21. This is why school systems across the world screw us in our futures…
    I don’t see how it can be ended, let alone handled.

    pvtsquid134

    April 21, 2016 at 7:30 pm


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