Advocating for the Autism Community

- 6:12

with Stuart Spielman of Autism Speaks


Mar 31, 2020

Over the next decade, an estimated 500,000 teens will age out of school-based autism services, as they transition to adulthood.

Stuart Spielman of Autism Speaks shares how his organization helps those on the spectrum live up to their full potential through understanding, acceptance and increased access to opportunity.

Hosted by: Tetiana Anderson Produced by: National Newsmakers Team

Anderson: Autism spectrum disorder impacts 1 in 59 children. Over the next decade, at least 500,000 teens will enter adulthood and age out of school-based autism services. Hello and welcome to "Comcast Newsmakers." I'm Tetiana Anderson. As autism rates continue to rise, advocates say that understanding and acceptance are key to allow those on the spectrum to live up to their full potential. Stuart Spielman is here to discuss this with me. He is the senior vice-president for advocacy at Autism Speaks. And, Stuart, welcome. -

Spielman: Thank you.

Anderson: So I want to start out with the fact that, for you, this is all personal. -

Spielman: Yes, it is.

Anderson: You have autism in your family, tell us about that.

Spielman: So I have two sons, and my older son, who's 25 years old, Zack, is on the spectrum.

Anderson: So what you're going through with Zack is something that a lot of people can relate to. We know that about 50,000 teens a year are aging out. They're looking at what life is going to look like for them ahead. I think you refer to this as going over the cliff. What's going on?

Spielman: So it's a long journey. As a parent, you are there for your child over a lifetime. And Zack has been, among other things, a great teacher for me. I understand the world differently because of Zack. And Zack's autism has affected my life. It propelled me into advocacy because, as a father, I wanted to make a difference. And I think that my experience is not a unique experience. Parents, individuals on the spectrum want to make a difference. And advocacy is a good way to do that.

Anderson: So what are they looking at when when you say "going over the cliff"? They're going from being school-age children into adulthood. -

Spielman: Right.

Anderson: What are some of the challenges? What are the things that they're facing with that transition?

Spielman: So what happens for kids is that they're in school and they get a variety of services, and then, suddenly, things fundamentally change. How that change is navigated really matters. And it matters in the short run and it matters in the long run. We want kids to go someplace and not simply wind up on their parents' couch at the end of high school.

Anderson: And there are certain things that you guys are doing to propel this -- the Autism Act, the ABLE Act. What are some of these things? -

Spielman: Right. So we've done a number of things in our -- over the years in advocacy. So one of the things that is foundational is the Autism CARES Act. And this is legislation that, in various forms dating back, actually to 2000, the Children's Health Act of 2000, provides funding for research. Now, you mentioned my son, Zack. My son, Zack, was born in 1994. In 1993, the year before he was born, the National Institutes of Health spent less than $10 million on autism research, less than $10 million on a condition that we now know affects 1 in 59 children, perhaps more. And that kind of investment had to increase, and it has increased. But we have to continue to make an investment that will help our children, our young adults, our adults, our seniors with autism, lead the best lives possible.

Anderson: So employment readiness and preparedness is a crucial part of what you all do.

Spielman: Right.

Anderson: How ready is the business world to receive all of these great people that you've prepped to go into it?

Spielman: I think they're eager. They may want some assistance. And we're happy to provide assistance at Autism Speaks. We have, with partners, participated in a Delivering Jobs initiative. We want to provide employers with this fabulous workforce that is just waiting out there, ready to deliver for them. So there may be some accommodations necessary on the part of employers, but we have the talent, and the talent is ready to go.

Anderson: So it sounds like this is going to take buy-in not only from families who are working closely with their loved ones, but communities, businesses, organizations like yours. It's a team effort here, huh? -

Spielman: Right. It is absolutely a team effort. And I think that's a very pertinent way of looking at it. You know, we're trying to get everybody to play together on the field, and everybody has a role on the field.

Anderson: One quick last question.

Spielman: Sure.

Anderson: You guys have the kindness campaign going on, and I want you to tell people what that is.

Spielman: So we want to see a million acts of kindness in this year, and kindness can be, you know, different things. It can be welcoming somebody who is on the spectrum, making them feel comfortable in your restaurant, making them feel comfortable on the playground if you're a kid. It can be going up to Capitol Hill and sharing your personal story. Stories matter in our community. Conveying to people experience and letting people understand why our community is so important and so talented. That really, I think, is an act of grace.

Anderson: The story is important. And, Stuart, thank you for sharing yours.

Spielman: Of course. Happy to.

Anderson: And thank you for joining us, as well. For more great conversations with leaders in your own community and across the nation, as always, visit I'm Tetiana Anderson.

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