Receiving an autism diagnosis as the parent of a small child is frightening, alienating and overwhelming. Managing an adult child with autism has its own set of unusual challenges. What about independence? Dating? Jobs?
Brookline author and advocate Susan Senator’s newest book is “Autism Adulthood: Strategies and Insights for a Fulfilling Life,” a memoir-style account of her grown son’s early years of adulthood, as well as other autistic adults’ and caregivers’ experiences. It’s an honest, insightful look at an often-overlooked facet of autism.
I spoke to Senator in honor of National Autism Awareness Month, happening in April. My interview has been edited and condensed.
How did you suspect that your son Nat might have autism?
I have three sons. Nat, who has autism, is 26. Max is 24, and Ben is just about 18. The younger two have no diagnosis. Nat was diagnosed when he was 3. It was done at Mass General. Really, nobody visibly had autism at that point, nobody we knew. I felt like something was different almost immediately. There was just less of a connection than I thought there would be. I expected to just feel like the baby really knew me. I approached this baby with such high expectations. It wasn’t until my second son was born that it felt immediate. He looked at me right away, even if he wasn’t seeing me.
Was there a turning point when you knew he needed to be diagnosed?
I had a friend whose baby was a month older and he was so different—noisy, curious, really seemed to be playing, even with a ball. Nat was interested in mouthing stuff. But he was the sweetest baby. I remember my sister said, “Why does he have to play with toys? Who cares? Nat is just his own guy.”
When Max was born, we went to a seder. Nat wouldn’t come in, and he just stood crying and crying. At this point, everyone in the family suddenly noticed and it seemed like, wow, what’s wrong?
Where’s Nat now?
He lives in an apartment near us. He lives with a caregiver. The caregiver is his age, another guy who has a real interest in Nat and autism and has known him for four years. Nat works three days a week from 9-3 at Shaw’s, doing carriage return, basket return, that kind of thing. On Thursdays he does Meals on Wheels, and on Tuesdays they try out different work sites to keep assessing what he can do. It’s a day program funded by the Department of Developmental Services, and he’s taken home by one of the staff. Then he’s with his caregiver for the evening and night.
How’s his relationship with his two brothers?
My youngest, Ben, had a difficult relationship with him—no verbal interaction. He now says they have a lot of nonverbal interactions and that he can read him very well. I’m glad to hear that. Max, who is just two years younger, has had a much easier relationship with Nat, other than when we had to work on Nat’s aggression and any kind of destructive behavior. Those were problems, but Max bounced back. He’s loving to him. The sibling piece is so important; everyone worries about that.
When they were little, I did a lot of explaining. I tried to articulate what they might be feeling or seeing that was hard to understand about Nat. As they got older, I could explain about his disorder and what it meant. Mostly I gave the other two their own lives. I really made it clear to them that they were just as important in the family. I would arrange for babysitters to be with Nat so I could spend time with Max and Ben. Later in life, we took one or two vacations while Nat took another kind of vacation with a staff person. We tried to give them separate lives. I tried to keep them talking about what they wanted, how they felt, and encouraging their own interests. Only recently have I said, you know, you guys are going to have some kind of role in Nat’s life when we’re gone—decision-making kinds of things. They figured that.
How has your parental relationship changed now that Nat’s older?
We’re very connected. More and more, he’s been communicative. That has been the hardest thing. I loved having little kids, so it’s hard not to baby him, but I really shouldn’t. My husband is a lot better at having an adult relationship. He’ll say, “Let’s go on a walk, let’s take the T.” The weekends are like that. Our relationship is active, as opposed to sitting and conversing. For Nat, it’s got to be physically active: walking, active, riding a bike.
What mistakes have you made along the way—and what did you do right?
When Nat got to be in his late teens, oh God, I felt like I should be planning his next steps, and I didn’t even know who to call. It wasn’t until I went to workshops and conferences about housing post-18 that I started to understand the jargon a little and the process. There was a great workshop at Jewish Family & Children’s Service; they gave an amazing workshop with a checklist. I met with one of them privately to learn more. She met with me several times. Definitely find a mentor. Find a workshop, then find someone who can explain more to you. Be assertive. Ask people to sit down with you. I did that well.
The worst was when it came time to plan his housing. I was pushy. You’re courting other families for group housing. Several times things fell apart, potential housing groups, et cetera, because I was more ready to act than other families were. When working with other families, you have to try to assess each other’s pace and style and let things happen organically.
What advice would you give to families in a similar situation?
Look out for social groups of some sort; try to encourage any kind of relationship, whether it’s dating or just friends. Go to Special Olympics events, hang out at the sidelines, and you’ll find parents just like you looking to connect and to share information and to laugh about things.
Does spirituality help you at all?
Nat’s bar mitzvah was a family high point. Nat really shone; he was at his best. He was really proud of himself. He loved the songs. He was really into it, and therefore I was too. I don’t feel God chose me for this. I don’t feel special that way, but I do feel a sense of spiritual connection and support.