Interview: Laura Shumaker, Mother of A Regular Guy
Laura Shumaker is a role model and mentor for parents seeking honest guidance about loving and supporting children with special needs. She is the mother of Matthew, an adult son with autism, about whom she writes in her book A Regular Guy. She is also SFGate's Autism Examiner, a contributor to The New York Times' Motherlode blog and The Thinking Person's Guide to Autism, hosts an active Facebook community, and writes at her own blog, www.laurashumaker.com.
If you could tell a parent of a child with a new autism diagnosis only one thing, what would it be?
I would say, oh, I know this is so hard, but that it is a good time to be diagnosed with autism. The silver lining of the increase in autism rates is that there is an actual autism community and countless resources available, and with evidence-based treatments and early intervention, outcomes are promising. I am not kidding you when I say that when I first heard the word autism to describe Matthew (20 years ago) I had to look in the encyclopedia to learn what in the heck it was, and the explanation given was nothing but discouraging.
What is your son Matthew's own attitude about his autism? Positive, negative, or mixed?
Historically, it has been negative, so much so that he denied that he had autism. He’s always noticed that his brothers, Andy and John, have many more friends than he does, and that bothers him. There was a stage of about two years when he couldn’t be in the same room with his brother, Andy, who is two years younger.
“He has everything that I want -- he’s smart, he has a lot of friends and he has a girlfriend. I’m mad at him.” But things are getting better. Matthew understands that he has a harder time making friends because of his autism, and he knows what he needs to do to turn things around. One time he even used his autism as an excuse! He called this one girl over and over again, and the girl’s mother called me and asked me to intervene. When I confronted Matthew (calmly, of course) he said “You should tell the girls mother that she should be nice to me because I have autism!”
Does Matthew relate to any peers or role models on the autism spectrum?
Yes. Matthew has great admiration for peers on the spectrum that are higher functioning than he is, and is in awe of their smarts. And for his peers that are lower functioning, he is an awesome caretaker! In the community where Matthew lives, there are individuals with all kinds of developmental disabilities. I think that is great.
How did you come to the decision to have Matthew attend school in another state, and how much was he involved in the process?
Matthew bumped along in our community’s special education program, one that we were very involved in. Both middle school and high school programs didn’t even exist until a group of involved parents urged the school district that they were needed. But when Matthew went to high school, everything went haywire at school and in our community. There were phone calls, police visits, suspensions, and letters from lawyers. Matthew became emotional, aggressive, and dangerously impulsive. His two younger brothers became withdrawn, I became depressed, and my husband was frustrated and sad. We realized that Matthew needed more supervision, more that we, the school and our community could provide. By the way, sending him to a residential school is the last thing we would ever do.
Where does Matthew live now? Is he happy with his living arrangements?
Matthew lives at the Camphill Community in Soquel, California. He had attended their residential school in Pennsylvania. We were so pleased with the organization’s philosophy, and always hoped that he could move to their community in California once his schooling was done. There are four homes on the property of Camphill, plus an organic farm and a weavery. The homes house not just individuals with disabilities but co-workers and families. Matthew is also in a day program in Santa Cruz where he gets social skills training and work training, and he’s interested in moving into a full-time work program so he can train to be a gardener and landscaper. Matthew is very happy with his living arrangements, especially because he lives close to home and is able to visit frequently. This is great for our family, too.
What inspired you to start writing about Matthew and your family's autism journey?
It became clear to me that my friends and my community viewed Matthew as a problem, a hassle, and that they viewed me as a saint. This really bothered me! I wanted them to understand what it was really like to have a son with autism. I wanted them to know how loved and cherished Matthew was. What I learned, however, from writing the book, was how hard it was for Matthew to be Matthew. I admire him so much.
You are SFGate's Autism Examiner, and that position's reach extends beyond the autism community. Just how varied is the SFGate community feedback?
What I wanted for the City Brights Blog was to educate readers who did not have a child with autism. A day does not go by that someone tells me that they know someone whose life has been affected by autism, but still, so few understand it! I kept hearing “They are all brilliant,” and “They are in their own world,” and “It’s because of the shots.” I also do my best to help parents with children with autism. I get a lot of positive feedback, but also some not-so-nice feedback from people who just want to stir things up. I read it all and try to respond in a way that clarifies my message, but it’s not always easy!
Who are your own role models in the autism community?
There are so many, but I will give you four that stand out.
- Clara Claiborne Park, author of The Siege. I was so moved by her memoir about raising he daughter with autism, Jesse, because it was clear that she loved Jesse so, so much. When I read the book, Matthew had not yet been diagnosed, but I kinda knew, and I thought, “I’m going to be like Clara. It will be interesting and difficult, but I’m going to love him.
- Donna Williams, a woman with autism who wrote Nobody Nowhere and Somebody Somewhere. I was fascinated with her account of living with autism.
- Claire Labeznik would be so surprised to be included in this list. She is the parent of a child with autism and the author of Overcoming Autism. We became good friends on Facebook. She wrote a guest post for my SFGate Autism Blog last year that touched me so much. I think about it often.
- Matthew. I admire him so much for trying to fit in!
When I think of the generation of mothers that follows me, so many are shining examples of what autism advocacy is all about -- connecting people and sharing resources. You will notice that there are no role models who claim they cured their child!