I mentioned a review in the LA Times about Allen Shawn's new memoir: Twin. I bought the book on the weekend and wanted to share a passage. Shawn has a twin -- Mary -- who was diagnosed with autism and institutionalized at age 8. Shawn is a composer and son of William Shawn, a legendary editor of the New Yorker.
I will probably always have to make a conscious effort to connect the Mary who is a part of my life with the scientific information about "mental retardation" and "autism" I have learned. Despite what are called her "autistic features," Mary is far from oblivious to the world around her, and often seems extraordinarily present and engaged. For the most part, she looks at people when they speak to her. She often smiles. At the same time, her impatience and nervousness and frustration, even her unexplained laughs and bursts of muttered commentary, are constant reminders of forces and reactions within her that remain mysterious.
The textbooks about autism are written by the non-autistic. Intelligence tests are designed by the neurological "winners," the verbal. What about those things that cannot be understood from outside and cannot be measured? Sometimes whole inner worlds come to light in those who can barely speak.
...I suppose that even if I will never be able to "understand" her in normal terms, I still balk at defining Mary in terms of what is broken about her, and I don't want to, any more than I want to define myself as only a person with phobias, or as only a short person. She is who she is.