The Washington PostDemocracy Dies in Darkness

A mom on trying to change the world for her son and others with autism

Mickey McGuinness showing his sister, Molly, the stuffed animal he has named after her in his bedroom at First Place, a community for adults with special needs in Arizona. Each of his dozens of animals is assigned to a person in his life, as well as a song, a number, and an element on the periodic table. (Courtesy of Terry Stewart/PBS)
7 min

Caren Zucker is a longtime television news producer who started reporting on autism after her eldest son, Mickey McGuinness, was diagnosed with it in 1996. Feeling like there wasn’t enough information for families who have children with autism, Zucker asked John Donvan, who was a correspondent with her at ABC News, “to do stories with me to get the word out.” The two created several television projects on the topic together and in 2016 released a Pulitzer-nominated book, “In a Different Key: The Story of Autism.”

But for Zucker, it didn’t feel like enough. “I felt that after we finished the book that we still hadn’t reached the community of people outside of the autism community,” she said.

So the team created a documentary that shares the book’s name but has a different focus. While, like the book, it provides background about autism, as well as important insights into the abuse of individuals with autism and the disparity in treatment that lower-income children and those of color often face, it centers on two men. One is Mickey, Zucker’s now-28-year-old son, who lives at First Place, an apartment community in Arizona designed to help adults with special needs build independent lives. The other is 89-year-old Donald Triplett, the first patient diagnosed with autism, who has lived his whole life in his remarkably supportive and protective hometown of Forest, Miss.

In a Different Key” will make its national premier on PBS on Dec. 13. We talked to Zucker about her role as both co-director and parent to an adult child with autism. [The conversation has been edited and condensed.]

What are some big changes you’ve seen in the years that you’ve been living with and reporting on autism?

I think that in the last 20 years or so, we’ve started to get a handle on really educating and supporting kids with autism. But when the kids grow up and are 21, they fall off a cliff because there’s very, very little out there for adults. So that’s our next challenge.

Another thing is that the spectrum has changed. Until a few years ago, there was autism and there was Asperger’s. People with Asperger’s could have their Ph.D., they could be married, they could drive. They can be very, very high-functioning adults. And on one end of the autism spectrum are people that would need some kind of support the rest of their lives. And we have now put them all into one pile.

I think people with more profound autism are really getting lost in this new spectrum. We don’t hear about them that often. We hear about “The Good Doctor.”

It’s hard, I guess, to educate people when it is such a spectrum.

The film was created to show that there is such a spectrum. We call people who don’t know anything about autism the civilians. And the civilians play a huge role in the quality of life someone with autism will have, by the way they raise them, accept them, stand up for them on the bus. It’s really about community and that you can have a community anywhere.

Were you always thinking of involving your son in the documentary?

I did not want to be on camera. It’s not my comfortable place. But in hindsight, I do think it was the best way to tell the stories and to weave them together. And once my son was on board, we also saw that he would have an impact in his own way.

Our nephew has autism. How can we help when our visits stress him out?

Your husband and two younger children (Jonah, 25, and Molly, 23) are in the film as well. How did they feel about it?

They all think that this is the way that we maybe can change the world for Mickey and other people. They were up for it. I think everybody’s a little bit apprehensive now that the film is coming out and that we are exposing our family. But we’re doing it for all the right reasons, so we just have to stand by it.

How did your younger kids relate to Mickey growing up?

Mickey was the firstborn, so Mickey was always in their life. And my daughter will say today, “If I have a child with autism, well, that’s what I know, that’s what I grew up with.” She found her very comfortable place with that. I think it was more challenging for my son Jonah, because they were in school together. And he was the middle child, but he was really the older brother. It was a more complicated role for him to play.

Did your kids attend support groups for siblings of kids who have autism?

I had my kids attend Sibshops, and that was actually one of the most remarkable experiences for them because it gave them a safe place to not be so happy necessarily. They could talk about all the good things about having a sibling with autism and all the not-so-good things about having a sibling with autism. And I think that any family who can do that should do that.

What was it like, as a mom, to see Donald Triplett’s situation and this town that had taken him into their hearts?

It was just, “Wow, a community can really embrace someone. That’s what I want for my son.” So it was really, really hopeful. But on the other side, you know, Donald lived a life of privilege. His family owned the local bank. On one level, the community was going to accept Donald. But on another level, I would give them full credit for embracing him unconditionally, being protective of him and supporting him.

Can I help my child with autism spectrum disorder make friends?

And you think that attitude is replicable?

I think that you can have a community anywhere if you choose to.

We tell this story a lot: There was an educator who was working with a young man named Nick who was profoundly autistic, and he was teaching him how to ride a bus. And they’d been doing it for weeks, and Nick was doing so well that the teacher had moved to the back of the bus.

One day, a couple of young men got on who hadn’t been riding that bus route. Nick was making noises, and he was flapping and disturbing them. One of the guys said to Nick, “What are you doing? Can’t you be quiet?” The educator was about to go to the front of the bus. But a passenger jumped up and said, “Hey, he’s got autism. What’s your problem?” And at that moment, the bus became a community

Can you talk a little bit about your decision to send Mickey to Arizona, far from your home in New Jersey?

First Place is an incredible program, but there is nothing like it on the East Coast. I wanted Mickey to have as independent a life as Mickey was capable of having. I knew that he wanted it. So keeping him home would have been keeping him home for me.

You have to have a community. We’re not going to be here forever. Yes, he’s going to have his siblings. But I want his siblings to love him and be with them because they want to, not because they have to. I want to make sure that everybody gets to have their life.

It’s hard that he’s that far away, but we see him a lot. Lots of families wouldn’t be able to do what we’re doing.

Do you have any advice for parents who are just starting this journey?

Listen to your child. Nobody knows them better than you. And just go with the gifts, go with the good parts of it, because there are a lot. And, you know, life is challenging for lots of different people.

Correction: An earlier version of this story misspelled John Donvan’s last name. This version has been corrected.

Have a question about parenting? Ask The Post.