We’re learning that what we do makes a difference

The following is an excerpt from remarks made by John Hussman, Ph.D. from the Hussman Foundation at the 2018 Autism Society of America Gala. It is heartening to read.

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“That science is also getting increasingly specific. See, a hallmark of the functions affected in autism – communication, social interaction, and behavior – is that they’re all “emergent” – they don’t reside in one place in the brain. Instead, they rely on coordination and synchronization across multiple areas of the brain. A lot of that coordination involves what are called interneurons, which primarily use GABA. Interneurons that express a calcium-binding protein called parvalbumin are particularly essential.

The science of autism has progressed significantly. Weirdly, one of the most scientifically validated lines of research in autism is the hypothesis I proposed back in 2001 – that the challenges we see in autism are consistent with disruption in circuits that rely on a neurotransmitter known as GABA. It isn’t the only hypothesis, but it’s a central one, and there’s now a mountain of evidence for it.

That science is also getting increasingly specific. See, a hallmark of the functions affected in autism – communication, social interaction, and behavior – is that they’re all “emergent” – they don’t reside in one place in the brain. Instead, they rely on coordination and synchronization across multiple areas of the brain. A lot of that coordination involves what are called interneurons, which primarily use GABA. Interneurons that express a calcium-binding protein called parvalbumin are particularly essential.
That’s undoubtedly more than you want to know. But we’re finding increasing evidence that that circuitry is affected in autism. We’ve got an entire laboratory of neuroscientists at the Hussman Institute for Autism working on ways to regulate this pathway, because we believe it has the potential to improve the lives of people with autism.

One result of the difficulty in synchronizing different areas of the brain is something we repeatedly hear from people with autism: they describe a gap between what they want to say, or intend to do, and what they are actually able to demonstrate through speech or action. It also interferes with binding sensory information together, and regulating movement choices. So people may miss very subtle social cues, or they might need to initiate movement in a very intentional way.

My friend Jamie Burke, who types independently to communicate, says of his childhood, “What made me angry was that I knew exactly what I wanted to say, but my brain was retreating in defeat.”

Naoki Higashida talks about compulsive, repetitive behaviors, saying “My brain is always sending me off on these little missions, and I have to fight the feeling of horror if I don’t obey.”

My friend Grant Blasko describes “the mafia running my body.” Sometimes people would think he didn’t understand because he didn’t respond right away. He says “I heard and understood, and began the process of figuring out how to make it happen, only to hear the same command in a sterner tone. You may make the mistake of thinking I am angry about the teaching and asking, and that it is too hard, or that I don’t like to work. The truth is I am angry at the risk I took, trying and failing, and noting my real struggle has escaped everyone for so long.”

Instead of labeling kids as “high” or “low,” we should really be talking about their ability to demonstrate. Our job is to presume their competence, and then go to work trying to find ways to help them to demonstrate it. That means offering them interesting information, holding up our side of the conversation, and including them, without requiring that they pass a test in order to enjoy what the rest of us take for granted.

It’s fun to watch the amazed, sometimes giggling reactions of our non-speaking kids with autism, when we honor them enough to talk to them in a typical, age-appropriate way. It also confuses people who haven’t yet learned to distinguish the capacity to think from the capacity to act. They look at us like we’re making small talk about the weather to a petunia. But we know how difficult that path between intention and action can be. To believe in someone is to nourish their bravery.

After 25 years, we’re not just learning about autism, we’re learning from people with autism. Instead of trying to make our children “indistinguishable” from typical children, we’re beginning to embrace their differences, to recognize their strengths, and to love them for who they are right now, even as we work to improve their lives. We’re learning to ask better questions. Instead of asking “How do I stop this behavior,” we’re starting to ask: What is this child trying to communicate? What need does this behavior serve? How can I help them to meet their needs in a better way? How can I offer them more predictability?

We’re learning that human beings, including kids with autism, are wired to learn through social interaction, and that they learn most when we follow their lead and model language that’s interesting or useful to them.

Instead of sending kids into sterile, segregated rooms with flash cards and M&Ms where they hear “no, incorrect, uh-uh, try again” (which Grant says almost gave him PTSD), we’re asking: How can we engage these kids in regular classrooms and day-to-day activities? How can we adapt or scaffold the parts they can’t do independently yet, so they can be successful and included with everyone else? For a long time, Howard County has been at the forefront of inclusive education. That’s something to be proud of, and it’s something worth defending.

People used to talk about autism the same way they talked about cancer. The main advice parents got was “early identification” and “intensive intervention.” Parents were told that there was some 8-year window, and if their children weren’t speaking, giving eye contact, keeping “quiet hands,” and avoiding special interests by the age of 8, the window of development would close.

We defy that idea in our work every day. It’s never too early, and it’s also never too late. What matters is to provide intentional engagement, to model communication, to presume competence, to offer positive behavior support, to include, to adapt and scaffold, to give starter help with friendships, and to teach our typical children that friendship with a person with autism might look different from their other friendships, and that that’s OK.

After 25 years, there’s still progress to be made, but we’re learning that what we do – as parents, as schools, and as a community – makes a difference.

Quick news item. Last week, the CDC released a new estimate that autism affects 1 in 59 children. A little background may put that into perspective.

Updated: June 12, 2018 — 6:19 pm
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