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Remarks at the 2018 Howard County Autism Society
"Pieces of the Puzzle" Gala



Tonight we celebrate the 25th anniversary of the Howard County chapter of the Autism Society of America. 25 years ago, a small group of parents got together to advocate for their children, and as they did, they created a community. We celebrate all of these families who do so much to improve the life of someone with autism.

I want to say a few words on what we’ve learned about autism, and how the world has changed, in these 25 years.

A year after the Howard County ASA was born, our son JP was born. By the time he was 2 years old, we had concerns, and we saw a parade of specialists. JP was diagnosed with autism. There was a lot of toy throwing and high-pitched screaming. Eventually I stopped. Back then, and sometimes still today, autism was described as “a severe, lifelong developmental disability with no known cause.”

The problem is that when we define people by their weaknesses, we overlook their strengths. And those strengths change everything.

In 1998, Beth Benevides, who’s now our director of outreach at the Hussman Foundation and the Hussman Institute for Autism, had her son Kyle. The developmental pediatrician told her this:

“Your son has autism. There is no cure. He will always have autism. But the good news is that he will go to school. He will learn to read and write. He will be ok, but that’s up to you. You can be in denial about this, or you can wrap your arms around him, love him, and get to the business of helping him.”

Beth says that those words transformed her grief and sadness into a mission. The families of those with autism live into that mission every day.

Some parents of kids with autism find themselves with new jobs they never intended. I ended up abandoning academic economics and throwing myself into genetics and neuroscience. It wasn’t as much of leap as it sounds. My parents were both physicians (some of you know my mom) and they had me studying to be a doctor since I was a zygote.

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.

25 years ago, the word “autism” usually meant Kanner-type autism - very little if any language, lots of stereotyped behavior, very little social interaction. At that time, only about 1/2000 kids were diagnosed with autism. If you imagine people standing under a huge bell curve, the ones with autism were way out at the edge, about 3.3 “standard deviations” from the middle.

Autism was once a little circle within a bigger circle of “pervasive developmental disabilities” that also included Asperger Syndrome, Rett Syndrome, and PDD-NOS - “not otherwise specified.” In recent years, all of the pervasive developmental disabilities except for Rett Syndrome have been moved under a different umbrella term, Autism Spectrum Disorder - personally I prefer “Autism Spectrum Condition.”

So the main reason for the increasing prevalence of autism in recent decades is 1) the definition of autism is broader now, and 2) we’ve become better at identifying kids who need services and support.

In 2012, 1/88 kids were identified with autism. On a bell curve, that works out to 2.3 standard deviations. The 1/68 prevalence in 2014 works out to 2.2 standard deviations. And last week’s new 1/59 prevalence estimate works out to 2.1 standard deviations.

Whether we define autism as 3.3, or 2.3, or 2.2 or 2.1 standard deviations from the center, all of these kids have significant needs. All of them deserve good supports.

Final thought. 25 years is a long time. But I’ll tell you a secret. We autism parents have a wildly flexible concept of time. Just ask us how our child is doing. More often than not, we’ll say they’re doing great. It’s just that we might be talking about the past year, or the past month, or the past 2 days, or sometimes the past 10 minutes.

We learn to accept the ebb and flow, and really, what we pray, is that others - our communities, our schools, our children’s teachers, will accept it with us. That instead of saying “This isn’t working,” they’ll look again, and ask, “How can we make it work?”

If you’ve ever looked at a tiny bit of sand under a microscope, you’ll discover that it’s absolutely full of beautiful little shells. That’s the way we celebrate progress, seeing beauty even in the smallest things. And that’s OK, because often enough, we also see our kids leap over mountains.

Thank you all for being part of a community that celebrates every bit of that progress. Congratulations to the Howard County ASA on 25 years. Have a wonderful evening.


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