Susan Senator

It is nothing short of amazing that there is an organization like the IACC, Interagency Autism Coordinating Committee. IACC derives from the 2006 Combating Autism Act, and is charged to gather information from the public regarding the state and needs of the autism community to guide research, funding, policies, and to promote awareness of autism.

I feel that IACC does much more than that. Its very existence is a wonder, a miracle. Yet like most miracles and wonders, there is some heartbreaking difficult work behind it. To me, not much just happens in this life, or is simply there. There is always some kind of effort, whether through massive glaciers moving mountains over millenia, or a woman going through childbirth, fertility procedures, or adoption to bring a child into her life. Or the government sponsoring a forum for opinions, statements, views, stories about life with autism (even though the deadline was yesterday, it still may not be too late to get your statement in, you never know )– and then using that knowledge for the good.

I am finishing Karl Taro Greenfeld’s Boy Alone, and I am stunned regularly by the pain and difficulty that family dealt with. This is a portrait of a family slowly and torturously disintegrating because they did not know how and could not care for severely autistic Noah. Karl, the “normal” brother writes the memoir unapologetically and honestly, if a bit pessmistically. Even while Karl is often enraged and bitter about the fact that his brother Noah can do so few things that most of us can do so easily, at the same time he is keenly aware of his brother as a human being and a beloved sibling.

I am fascinated with the differences and similarities of that family, that era (growing up in the 1970’s, my own era), and that of today — and my own family, and Nat’s era. What is similar is the feeling of being alone, of there not being enough out there to help. The lack of knowledge in the medical community. The compulsion that society feels to blame either the parents or the autistic person for the condition of autism (once Bettleheim and his theory of the Refrigerator Parents had been moderately debunked, the Skinnerians moved in with their attitude that there is something inhuman about the way autistics act and therefore were justified in using aversives on autistics to break their spirit — er, behaviors.) There also still remains the fear that no one will love your child the way you do, coupled by the dread that you can’t live forever. That you can’t even do right by him now. The difference is that I don’t feel those things most of the time; even when Nat lived regularly with us those fears resided in the softer, darker parts of my heart, like heart disease, only to blast into the forefront of our family life with terrible pain when crises occurred. In those times we were confronted with that sense of abject, craven helplessness of how to do right by their children, just like Karl’s family felt — only they felt it most of the time.

So much in our lives as parents is about doing right by our children, or even just managing them, surviving, etc. We need more help in taking pleasure in them, too. Our children need help in figuring out how to follow their stars, too. I don’t know where that help can come from, I spent two years researching it for my new book (The Autism Mom’s Survival Guide). Sometimes the help comes from the outside, generated by organizations like IACC and laws like the ADA. Sometimes the help comes from within: one good friend who “gets it;” a spouse who can make you laugh. Respite. Or figuring out a connecting point with your child.

Boy Alone offers no answers. That’s one reason I am reading it. I don’t like books giving me answers, I like books giving me questions. The question I have been simmering from this particular book is, “How can I work things so that Nat is happy?” I remember years ago Ned asking, “Why does he have to learn social studies?” because he was not progressing in that or other academics; yet he needed so much more to get by in this world. Why spend so much of Nat’s time learning something he is not going to value or use? Recently Ned asked the same question: “Why does he have to work?” because working involves a job coach and a really understanding employer. For a pittance. You have to keep earnings down if you want to continue to get your SSI benefit.

At camp and at Special Olympics, we see Nat at his happiest. Physical activity, feats of derring-do, that is what Nat is mostly psyched about. When he can’t exercise, he walks miles in circuits throughout our house.

Where am I going with this? I don’t know. Mostly I am questioning once again the idea of following the recommended path. In Nat’s era, that path is to learn to work and to contribute to society — with society’s help. In Noah’s era, that path is to get all your autism squeezed or beaten out of you.

I wonder if Ned and I can create a path that leads to Nat living much of his life outdoors, running, climbing, sweating, throwing, catching. I don’t think he can be a gym teacher. But I wonder what he can do, to follow his heart and talents?