Living With An Autistic Sibling

Sometimes, fiction offers us a safe lens through which we can examine our own lives. This week on my radio show, I spoke with Stasia Ward Kehoe, author of The Sound of Letting Go, a poignant young adult novel about a teenager named Daisy who lives with and cares for her autistic brother Steven. Ms. Kehoe’s work helps us understand the many challenges faced by families with children with autism spectrum disorder (ASD).

Here’s a quick summary of the story. Daisy, a musical prodigy, has been the “perfect” sibling to her brother Steven. In fact, to a large extent, her life is organized around his needs. Not only is she responsible for “baby sitting”, which constricts her teenage schedule; it’s also her “job” to be sensitive to his many special needs. For example, certain tonal sounds – noises too loud or not loud enough — can lead Steven to self-harm, including wringing his hands until they’re bloody. Sometimes he can be physically violent, leaving Daisy and her parents vulnerable to physical harm. At one point in the novel, Daisy decides to give up her trumpet, because she is not able to juggle both her music and the many parent-like responsibilities that fall on her shoulders at home. However, when Daisy’s parents decide to place Steven in an institution without consulting her, she is devastated. The narrative then chronicles how Daisy re-adjusts to a “normal” life – one with more age appropriate concerns, like friendships and her personal interests – while grappling with the guilt and loss of Steven’s institutionalization.

This may sound like a very specific narrative, but Ms. Kehoe and I spoke at length about how Daisy’s experience applies to so many of us. When Ms. Kehoe would mention her autism research to friends and acquaintances, she was shocked at how often she received the response: “Yes, that’s my life.” Developmental and emotional disabilities are quite prevalent in our communities. But we often don’t hear about them. It can be extremely difficult to find safe forums for expressing the frustrations of living with a family member’s disability. I would go even further and suggest that if you live in partnership or raise children, you can deeply relate to the love/hate relationship that Daisy and her brother share. It is impossible to live in intimacy without sometimes experiencing “dark feelings.” Ms. Kehoe’s work is so powerful because it neutralizes and normalizes the shame we feel about the mixed emotions that we all harbor toward the people we love.

I would of course recommend this book to anyone raising a child with ASD, especially if you are considering institutionalizing that child. This is, of course, a very difficult and personal decision. As Ms. Kehoe’s book clearly demonstrates, this decision has nothing to do with how much you love your child and everything to do with what is best for your family. Sometimes, it is simply a matter of safety. When you have a fourteen-year-old boy at home who is larger than you are and cannot control his violent impulses, you simply do not have the resources to keep him, yourself, or your other family members safe.

One silver lining that Ms. Kehoe discovered in the course of her research is that many siblings of people that are diagnosed with ASD grow up to work with people with disabilities. When you are raised with a sibling with a disability, you are gifted a certain perspective – you naturally develop an insight and level of compassion that others have to learn.

It is so powerful to feel like your story is being told, and that is the reaction that Ms. Kehoe has received from many of her readers. However, she took care to emphasize that her book is not prescriptive. It is, after all, a work of fiction. For those who would like more support and information about raising children with ASD, Ms. Kehoe recommends Autism Speaks, which you can visit at http://www.autismspeaks.org.