It Finally Happened!

The word autism was mentioned during one of the presentations I attended. Patricia Kuhl, PhD presented on “The Child’s First 2000 Days” where she spoke of that critical period, those first 5 years of life, when the brain has its single biggest growth spurt.  She cited some studies done on tri-lingual and bi-lingual children, showing that critical period of growth is sustained for a longer period.  She spoke of how children respond to humans, the mother’s voice, and how technology should not be used in the first two years of life.

Patricia Kuhl

And then she said the word “autistic.”  She spoke about the need for more research, how in those children the mother’s voice was not sought, in fact it seemed to cause discomfort.  She spoke for about two or three minutes about studies being done with autistic children and then continued with the rest of her presentation before opening it up to questions from the packed room.  Hands flew up and suddenly there was the man with the autistic child asking for more information about technology’s role in teaching autistic children.  Then there was someone else with a question about language acquisition and autism.

I was sitting in the last row and usually do not ask questions during these discussions but wait until after the talk to approach the speaker.  But I couldn’t help myself.  Up went my hand, was she aware of Henry Markram and his Intense World Theory for Autism and if so, what did she think of it?

But though she’d heard of him, she wasn’t familiar with his theory.  Still, I was pleased that someone had included autism in the hundreds of discussions and presentations even if for just two minutes.  And it got me thinking…

If you could put together a series of discussions on Autism presented at a festival such as the Aspen Ideas Festival, attended by some of the wealthiest and most influential people in the country, where the mainstream press is well represented, who and what would you want to see and hear?  A couple of people wrote in the comments section yesterday and it was exciting to hear them.  I’d love to hear more from anyone who cares to weigh in.

21 responses to “It Finally Happened!

  1. Have Markram vs SBC going at it.
    Then have an Autism Speaks leader going at it with Ari Ne’eman.

    I also wrote some other more serious things on yesterday’s post, but now I felt like phrasing these two in gladiatorial mode.

  2. I really think ASAN should have a special club or group for Neurodiverse-positive family members so ASAN can be their bodyguards, and also so that these parents can find each other, and help new parents to find their way. Are you familiar with PFLAG? I have to talk to Ari and Melody about this.

  3. PS Win, Win is a great name. Total Win.

  4. Oh I would love to have a go at Autism Speaks. I didn’t want to even mention their name before but sheesh a group that actually went to court over a parody site by a teen with autism? (Parody is protected speech) but the intimidation factor of being on their bad side is pretty high.

    I live in Canada and here most disability advocacy groups (if you can call them that) understand that to completely not include the group you claim to need to speak for is just not going to go over well. I think if you put a group of autistic adults in a room with anyone from autism speaks it won’t be the autistic people needing that bodyguard though.

    I feel a bit torn about SBC. In some ways I could be the poster child for his theories as prior to his latest one I fit them well enough. I even fit the empathy notion he has but I don’t quite get how a prominent scientist doesn’t understand that the empathy results may be an artifact of how he measures it. The specific questions he asks don’t really address things that are for those on the spectrum a display of empathy. A lot of autistic people I know feel too empathetic. Maybe if he had enough empathy himself to actually consider it from the other side he could write a better measurement tool.

    • I think that has to be something that gets more attention – don’t make decisions about us without our voice – because any human being can relate to that, or at least they should and yet it’s being done to Autistics all the time.
      As far as SBC, I object to so much of what he’s doing and how he’s going about doing it, but the thing that bothers me the most is that by saying – this group of people don’t have the capacity to feel for others – he allows people to justify their own mistreatment of that same group. We’ve seen this throughout history and during every war we’ve ever entered. The enemy is always seen as “animals” or “beasts” they’re value is undermined and therefore it makes it easier to justify killing them. I don’t see a difference in what he’s doing.

      • I had not thought about it this way — and in that case, SBC is doing harm with whatever assertions are coming out of his claims. At the very least, he needs to define terms like empathy and all the vectors around empathy (learning this, demonstrating this, communicating this) and even more important, defining the limitations of his conclusions to the way we generally understand “empathy.” Because it does color negatively how autistics are perceived by society at large, thereby justifying their mistreatment.

        • Yes, exactly. I remember reading a horrifying piece in the New York Times about a boy who was horribly abused and left to die in a van. His parents sued the group home where he’d been placed. The “caregivers” joked and laughed about the Autistic boy in front of him saying disgusting and contemptible things. One of the memos sent out by the management of that home read, “If it isn’t documented it didn’t happen” or words to that effect. It made me think of how people thought of slaves. They were “less than” and therefore it was okay to treat them as such. We continue to behave in deplorable ways to those we consider “beneath” us. It is a sad fact of human nature. And that doesn’t even cover the enormous flaws in the tests he used to come to his conclusions. AspieKid recently commented on my Debunking post with a step by step of what would have gone through their head had they been given the Sally-Anne test. It was absolutely terrific!

  5. Pingback: Huffington Post, Life and What’s Really Important | Aspen Post

  6. The move from theory to practical application will take years and there’s not a lot of evidence supporting Henry Markram’s approach or the movement of that into “real life”. Even if it proves correct, today’s children will be adults before there is any proper real-world application.

    I’d rather work on the psychology and support of the existing children and adults with autism than on “miracle cures”. There’s been a lof of progress in the practical application of technology towards helping people with autism to communicate more effectively and it’s not something that should be ruled out lightly.

    • “…there’s not a lot of evidence supporting Henry Markram’s approach or the movement of that into “real life”. Even if it proves correct, today’s children will be adults before there is any proper real-world application.”

      Markram’s theory had a massive effect on me and my husband as it validated much of what we suspected and saw in our daughter, Emma. In doing so it has made me all the more determined to publicize Markram’s theory as a counter to SBC’s theory, which I cannot and do not see any evidence to support. While the wider application of Markram’s theory may not help many children at this moment, it has certainly helped me in understanding my own child better and in doing so, I would argue, has made her life better as a direct result.
      I’m not sure where you read “miracle cures” in this post, but nowhere was that written.

      • Markram’s theory is great and the general outcome is well and truly in line with what advocates in the autism community like myself have been preaching for years (on non-technical terms). My issue is simply that I don’t like seeing things reduced to neurons etc. That sort of thinking leads to towards the path of fixing/curing. In that sense, spending time identifying things that indicate our differences could easily become a “witch hunt”.

        Acceptance is the way. We know what our children are. We’ve always known. It’s society which needs to open its eyes and become more accepting.of their differences and understanding of the amazing things that individuals on the autism spectrum can contribute.

        I’m just keen to see the debate stay in the human realms and away from test tubes.

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