Autism Plus Down Syndrome: One Mom’s Memoir for Autism Awareness Month
For Autism Awareness Month this April, I want to take a second and recommend a beautiful memoir called Know the Night by Maria Mutch. Her son has Down and also autism. She has a lot of heartful advice for all of us:
KK: How common is a dual diagnosis of Down syndrome and Autism? MM: The presence of autism in people with Down syndrome has really just started to be recognized in the last dozen years or so. The thinking used to be that a person with Down syndrome somehow could not also be autistic. Now there’s a better understanding of autism and its incidence alongside other major diagnoses. My son Gabriel’s autism diagnosis didn’t happen until the age of six because it was difficult to tease apart his characteristics. When his diagnosis was finally made, I went through all the typical emotions, including being angry; in the end, however, the diagnosis proved to be a relief because there was less mystery surrounding what was happening to him.
KK: Why did you write this memoir about your son and his special needs with a backdrop and parallel story of a historical narrative?
MM: I wrote about the polar explorer and aviator, Richard Byrd, and the time he spent alone in a hut in Antarctica in 1934, in part because I came across his book, Alone, and loved it. During the two year period when Gabriel developed his sleeping disorder, I was pretty much at loose ends and found that in reading Byrd’s book there was something like solace. The story had some parallels with our own, if only figuratively, and there was the presence of night in Byrd’s book as well, as he was in Antarctica during the part of the polar year when the sun doesn’t rise. The other very important reason for writing about Byrd was because I noticed, in the unique stories of isolation of both Gabriel and Byrd, a universal narrative about fearing being alone and longing to connect. I could enlarge the story of Gabriel and me by talking about Byrd, and then go beyond that. We all know what it is to feel isolated, regardless of our life circumstances.
KK: How do you think music—especially jazz—has been therapeutic for you, your son, and for your whole family?
MM: Discovering that Gabriel enjoyed jazz was a marvelous thing. It gave us the opportunity to connect with him and see another side of him, and it gave us a language, in a way, when he had lost all of his spoken words and signs. Gabriel does not have the auditory sensitivity that is common to children on the spectrum, and so we were able to maximize his tolerance. Listening to live jazz, in particular, gives us another way of getting Gabriel out in his community in a way that seems really meaningful. Jazz musicians tend to be very accepting of him in the audience and he has often rewarded them with some nice rocking or clapping (although, as he is now a more grown-up teenager, his response is more tempered than it used to be). This experience also taught me to love jazz—I had certainly been a listener prior to Gabriel’s introduction to it, but listening with him taught me to listen more closely and to tolerate some of the more dissonant forms. His willingness to sit with some pretty complex music showed us that his response to the world is also deeper and more complex than some people would guess.
KK: It’s April and Autism Awareness Month, do you have any advice for other families dealing with a dual diagnosis that includes autism?
MM: The first thing that comes to mind is that they are not alone. Getting a second major diagnosis can feel overwhelming because just when you think you’ve read your last book about the original diagnosis, you discover there is this whole other world you have to attend to; and meanwhile you still have to care for your child, possibly other family members, and also care for yourself. So my advice is to start very, very small, and also to recognize the need for fun—something that I think people with ASD can be robbed of in the name of therapies and developmental charts.
KK: Anything else you’d like to say about your book?
MM: I was on a search for answers but quickly discovered that answers are not the point, only better questions. The search for meaning is central to life, and maybe one of the benefits of having someone like Gabriel in our family is that he gives us plenty of opportunity to philosophize and to ask questions. He deepens our experience; hopefully, in some fashion, we are able to do the same for him.
KK: Mother’s Day is coming. Tell us what’s special about your son please in your own words!
MM: Part of the answer to this is contained in my previous response; another part of it is that he is a wildly powerful person. I have seen him, almost routinely, change people, including those who were reluctant to interact with him or work with him; he turns people into friends and advocates. The children who befriended him in elementary school where he was fully included in the typical classroom are still benefiting from having known him and he from knowing them. Every year when Mother’s Day rolls around, it feels like a sacred day to me. Gabriel changed me most of all by making me a mother.