Hopes and Outcomes

Recovery. Mainstreaming. Independence.

These are what we want for our autistic children—yes?

Well, I once thought I did, and I thought that—-if these things did not happen, we had failed Charlie. We had not done everything we might to help him. We had not tried hard enough.

After nearly ten years with Charlie—-nearly ten years with autism, though I did not know this would be Charlie’s diagnosis—-I have other goals for him now, or rather other hopes. I think of myself as a recovered “recover my child from autism” mother. Just because Charlie is in a self-contained special education/autism classroom—because he is not mainstreamed at school—is not to say that he is not learning to “navigate his way in the stream–the mainstream and the bigger currents–of life pretty well,” whether pushing the cart for me around Target yesterday or riding the subway in New York. How many people are truly “independent”?: My in-laws have known each other since kindergarten and have never lived on their own without family or each other (and now, we live with them, as does a live-in nurse). They are both very elderly, and have long needed others’ help, or would not have been able to stay in their house. My husband takes them to various doctors; the nurse takes care of their numerous daily needs and cooks, and she and I take care of the house; Charlie has begun a few chores (taking out the garbage).

Regarding independence, I have been thinking about these words from one father of an autistic daughter who is a few years older than Charlie.

For most of the parents I’ve interviewed, a good outcome means that their child will be able to live independently without close supervision. But I am not particularly invested in the idea of independence. I want Isabel to have minimal emotional distress, to be able to continue learning as an adult, to know how to advocate for her needs, and to make friends. Even more importantly, my idea of a good outcome for Isabel is that people other than Joyce and me will contribute to her care. I know that it takes more than a village to raise a child; it takes a village and comprehensive mental-health care and educational policies to raise a child with autism. But no policy or parent can transform society. That is why it is so important to cultivate a stable network of family and friends. I don’t want to just find comfortable holding patterns, this school or that institution that will care for her at different stages or her life. In that kind of life, she wouldn’t have the opportunity to understand the world—or to get to be a part of it–any more than someone who traveled the globe without ever leaving an airport would be able to understand the countries he’s landed in. (pp. 291-292) [my emphasis added]

This is anthropologist Roy Richard Grinker writing about his 15-year-old daughter Isabel in his book Unstrange Minds: Remapping the World of Autism. what I refer to as being peaceful easy feeling—life-long learning—self-advocacy—friends: How many people do I know–do you know—who have these?