My Autism Story: Shonda Schilling's Tough Education About Her Son's Asperger's Syndrome

Amy Keyishian

Schilling book cover; $16.97
As the wife of former Major League Baseball pitcher Curt Schilling and mom of four, Shonda Schilling had a busy, complex life. Her husband was on the road for months out of each year, and she was constantly flying back and forth to his games, bringing one of the kids each time. She was active in the ALS Association, raising money for and awareness of Lou Gehrig's disease, and started the Shade Foundation of America after surviving melanoma.

Shonda had never heard of Asperger's until her second-youngest son, Grant, was diagnosed with it in 2007 -- which is why we're impressed, touched, and full of admiration for her new book, The Best Kind of Different, chronicling her family's journey through Grant's diagnosis. Her description of her process of learning to deal -- and help her family deal -- with this tough situation is beyond inspirational. We caught up with her to discuss her New York Times bestselling book and her own family's very personal yet relatable tale.

So where does Grant fall in your family, and how did his diagnosis come about?

We have Gehrig (14), Gabriella (12), Grant (10), and Garrison (7). Grant was 8 years old when we got the diagnosis. Curt had taken him out to play football, and it was only a few minutes before he was back inside, saying, "He's not processing anything I say to him." He had been diagnosed with ADHD [which Curt also has], so we already had an appointment with a neurologist. I Googled the symptoms Curt described and came up with autism. Within the week, it was confirmed.

How did you react?

The neurologist kept using the phrase "autism spectrum disorder," which I had never heard of. And I was all by myself in the office -- Curt was on the road. All I could hear was the word "autism," and my only associations I had with that were kids who were noticeably, clearly labeled autistic. Grant didn't act that way. He can bug you, but he can also make you feel so wonderful. He wasn't a big troublemaker at school, though he had to be convinced and had to negotiate things. He doesn't turn his head and look away; it's more that he stands so close and keeps talking. We all knew kids like that in school. They were just … quirky.

So when the neurologist used that term, I kept asking, "What does this mean? What does this mean?" I was numb. I just went home to my mom's house and went to bed. The next morning, I flew with Garrison to meet Curt and told him.

And how did your reaction change over time?

Most people start reading books right away. But I'm not that way. I wanted to cure the problem. Reading a scientific book about how the brain is wired didn't make me feel better. All I could think was that I had yelled at him, and he hadn't been able to understand what I was talking about. That was the first place I went to: The guilt.

It was three months before I could bring myself to call another mom who'd been recommended to me. I kept putting it off, trying to figure it out on my own. I was so fearful and felt so fragile. I was very afraid that whomever I spoke to would just try to talk to me about baseball. I couldn't handle that when I was so fearful of the future and felt guilty for the past. When I finally was ready and made that call, it was the first sign that things were going to be okay. Her son had friends and played. It'd be different from what I'd expected. He'd be at Cub Scouts, not the baseball field. But it'd be okay.

You reveal in your book that you and Curt ended up in counseling because of this situation. How did he handle it?

Curt didn't see it. He was on the road so much, and I'd call him and say, "He won't stop squirting the kids on the football sidelines with a hose." I was always saying, "Grant! Stop!" and I'd feel so humiliated. Curt's answer at the time was, "He needs more discipline."

This is very typical, and even the most well-meaning people can't understand unless they're in it, every single day. Just last week, Grant had a very bad meltdown. My dad understands the diagnosis, yet even he said, "Are you sure some of that isn't just him playing you?" And I can't get into it, in that moment, because I have to get him off the floor in the front of the restaurant without touching him, because if I touch him and it’s not on his terms, I'll hit his sensory sensitivities and add 20 minutes to the situation. It's so hard to understand how a kid can lock into that and refuse. I know what to do with my other kids, but those strategies don't work with a kid who has Asperger's.

It wasn't until Curt came off the road that he could begin to understand. He couldn't learn to change his own behaviors -- to learn, for instance, that if you scream at Grant, he'll just scream back -- until he had retired. Curt cries a lot more now than he ever did. But the tears are often proud ones. The things you don't expect a kid to be able to do, when they happen anyway, it's so different.

What are three things you wish someone would've told you about autism that you had to learn on your own?

How different each kid is. That they'll be fine. And how cool it is that they get to live their life so free.

When Grant grows up and gets a job, it won't be because it pays the most or has the best title. It'll be because it's what he really wants to do. He doesn't have the capacity to say something deliberately malicious. He just speaks truthfully. We don't stop to think like that, and it's the neatest thing in the world.

What has been the most challenging part of dealing with Grant?

I am his go-to. He comes in screaming because he's hurt, and I go to help him, and I can't touch him. So I walk away, and he screams at me for not helping. There are so many times when I can't fix it. He has to process it and understand it in his own way before he can feel better. And sometimes that wears me out.

It's also been hard to mourn the child you thought you were going to have. It's a real feeling, and it's coupled with a real fear for the future. It's okay to feel that way.

What about the rest of your family?

The first thing I did when I started really dealing with this was shut my house down. I told my friends, "I have to focus on my son to get him healthy." We had to go to outpatient rehab at 4 p.m., three days a week; we could never miss it. And my son can make lunch take two hours, so sticking to a schedule is hard. Then I had to connect to my other kids. If I was going to the grocery store, I'd pick a kid and have him come with me. That's our time to talk. Slowly, I found the balance.

What message do you want to give to other parents dealing with autism?

I wish they could understand how alone they're not. And that goes for any of us who feel isolated because our kid is different. Down syndrome, whatever. Any mom of a special-needs kid needs to know their kid should be okay with who they are. Nobody has a right to judge. Nobody knows what it's like in another family. This book isn't only for moms of special-needs kids; it's for any human being to read and learn how not to judge.

Read excerpts from Shonda's book here.

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