03.06.10

My Brother, Autism, and Me

Temple Grandin tells the story of a gifted autistic woman but renders the woman’s sister all but invisible. Julia Rothwax, loving sibling to an autistic brother, wishes it weren’t always so.

HBO’s recent biopic Temple Grandin presents the life story of a gifted autistic woman. As the sibling of an autistic brother, I watched the film with particular interest. The early scenes brought back memories of my family life: my brother’s incomprehensible tantrums, odd mannerisms, and language delays; my mother’s daily, unrelenting struggle to help him; the various professionals devoted to teaching him. But something was also missing in Temple Grandin—the “me” character. Where was her sister?

Grandin’s mother mentions a sister once in an early scene, but this sister never comes up again. I was especially struck that she wasn’t at Grandin’s graduation. Was she there in real life, but left out by the filmmakers because she wasn’t considered integral to the story?

Among the many pains of having a special-needs sibling, the one that hurts most is the pain of feeling forgotten.

Truth or fiction, the absence is not surprising. As a group, siblings of special-needs children are often overlooked. Among the many pains of having a disabled sibling, the one that hurts most is the pain of feeling forgotten—lost in the crisis of autism.

I watched a video the other day made by a therapist who works with autistic children and families. In it, a mother teaches her teenage autistic daughter to make pasta. It was a scene familiar to me. Teaching a basic life skill, one taken for granted by parents of normal children, requires incredible patience and effort on the part of the parent of a disabled child. As I watched, memories flooded back. My own mother, trying…trying…trying…to teach my brother. Put on socks, organize bus fare, smile, shake hands.

Later in the video, another child, the “normal” one, enters the kitchen. The mother turns to this child and says, “Not now!” Then she turns her back on him. I felt my stomach turn. This mother was clearly a sensitive and caring parent. To see her automatically, reflexively turn her normal child away was chilling. How many times a day does she do this without thinking about it?

In my childhood home, my brother was front and center. The search for the appropriate treatment, right school, and best therapist was the focus of our family life. My role in the family, I felt, was to be helpful, not to add to the troubles and stress. And of course, my life was easy compared to my brother’s, right? He was the one in distress. I was the okay one.

Jace Lacob: Hollywood Takes on Autism

An Interview with Temple Grandin
A few years ago, I became interested in learning about the life experiences of siblings like me. Having an autistic brother was clearly the defining element in my life. Was this perhaps true for others? There were a few good books written by siblings, including The Normal One and Riding the Bus with My Sister. I devoured what I could find.

Still unsatisfied, I set out to conduct my own informal interviews. I talked to people who grew up with schizophrenic, bi-polar-disorder, OCD, and autism-spectrum siblings. I asked them all the questions I’d been saving up. Were you ever embarrassed by your sibling? How is your adult relationship with your sibling? How do you feel about taking on a caretaker role for your sibling when your parents have passed away? Were you worried about having children of your own—possibly passing on a genetic disorder? How has having a special-needs sibling affected your marriage, friendships, and your adult relationships? The variety of answers surprised me. But what really struck me was how eager everyone was to talk.

These conversations, and lots of soul-searching, helped me come to some degree of peace with my childhood. Now, I want to provide some (gentle) advice to parents on the topic of us normal siblings. Bearing in mind how overwhelmed parents feel, here are some simple suggestions:

Remember that your non-disabled children are as deep into the experience as you are. This is their life and their childhood. Most likely your non-special-needs child will try to make life easier for you. They will continue to keep a low profile, trying to spare an already over-taxed family system additional stress. But they really do need help and support along the way.

Be aware that your child needs help dealing with all aspects of the situation, including how to talk to peers. Many children are embarrassed, scared, or unable to talk about their siblings with friends. It wasn’t until the end of high school that I told anyone the “secret” of my brother. As it turned out, my friends were supportive. And “coming out” helped me a lot.

Please don’t forget to enjoy alone-time with your non-disabled child, for your sake, as well as your child’s. I’ll never forget a lovely trip I took alone with my mother to Williamsburg, Virginia when I was about twelve. It was restorative. I won’t forget it. And neither will my mother.

Finally, a message for my fellow adult siblings: we need to continue to communicate, organize, and advocate. We need to support each other, emotionally and practically. As our parent’s age and die, we are going to have to face the overwhelming challenge of becoming the primary caregivers for our siblings. We will need to help each other.

To my surprise, my life now is good. I have a husband and child. I’m pursuing work I’m interested in. And my brother is also okay. He is still on the spectrum. But like Temple Grandin, he ended up finding some peace, and his own unexpected, unusual life course.

My (formerly Jewish) brother is now a born-again Christian with a community of friends and a very strong faith in God. My brother’s faith, like Grandin’s therapeutic hug box, has saved his life.

Addressing our mutual fears for the future, my mother said to me the other day, “When I die, Julia, your brother will probably be able to take care of you. After all, he believes he will see me again in heaven. Don’t be surprised if he is a comfort to you then.” That would be nice, for sure.

Julia Rothwax has been a press secretary for two Presidential candidates, Bill Clinton and Bill Bradley. She was Communications Director for Atlantic Media Company and holds a masters degree in public policy.