Thursday, June 28, 2007

"Not a Disney Story": Reasonable People: A Memoir of Autism and Adoption by Ralph James Savarese

Yesterday I heard a mesmorizing interview with Ralph Savarese, whose book Reasonable People is subtitled A Memoir of Autism and Adoption: On the Meaning of Family and the Politics of Neurological Difference. Although the title refects the complexity and intense debate currently surrounding the education of autistic children, Savarese's story was such a gripping one that I rearranged my plans to hear it out.

Savarese, a professor of American literature at Grinnell College, and his wife, a professional in the field of autism, had no plans to have children when she encountered D.J. at the age of two and a half years. Even though D.J. had been deserted by his parents and abused in the foster system, the couple were drawn to him by some intangible thread which finally led them to adopt, a process which took over three years. D. J. was totally non-verbal and obviously disturbed by the experiences of his short life, but the Savareses threw themselves into learning how to help him. The breakthrough for D.J. was through the controversial technique of computer-facilitated communication, in which the computer speaks the words he types. Now in early adolescence, D. J. still speaks only a few words but is an outstanding student and writes fluently, even adding his own chapter to the book.

"This is not a Disney story," Savarese honestly admits. But if the book is as riveting as the hour-long interview I heard, it is well worth reading for its insight into the role of nurture and communication in the human story and should be invaluable to parents and others working with autistic children.

Interestingly, one of this year's Newbery Honor books, Rules, reviewed here along with another Newbery winner in my post of February 18, also deals honestly with autism from the viewpoint of an older sibling.



  • Thanks for acknowledging (however obliquely) the controversy of so-called "facilitated communication." This is a highly dubious method for extracting information from an otherwise uncommunicative or unresponsive child. I'd be curious to read the book for its portrayal of this method and how it was done.

    Some discussion of this process and how it has been (ab)used can be found here and also here. I hate to poke holes in what sounds like a heartwarming story, but this aspect of it gives me pause. Parents of autistic children need real help, not pseudoscientific feel-good techniques that give them false hopes.

    By Blogger JAM, at 10:51 AM  

  • Some "facilitated communication" is bunk. I've seen stories on that which involves the "facilitator" guiding the hands/arms of the person "spelling out" the words. The young girl of the news story could pick out letters on her own without the "facilitator" but couldn't put the letters together for anything. She wasn't used to looking at the board, either.
    On the other hand, sometimes people communicate better through writing rather than speaking. If, as it sounds like in this article, the child in question is doing the typing and the computer software is then speaking the child's words, it's another story altogether. I've been at a computer that was hooked up to do that, and it was one of the most odd things to deal with -- I shut off the audio because it was interrupting my train of thought.

    By Anonymous Anonymous, at 11:21 AM  

  • The aspect of speech synthesis from typed text is just window dressing I think. The fact is that they guide his hand when he types. The claim is that he's gotten better at it so that he only needs "minimal" guidance now (the chapter he wrote was done with such guidance. Here's a Newsweek article on the book.

    There are degrees and different types of autism. It is not a monolithic diagnosis. Some are quite high-functioning, and some may be more amenable to various therapies than others. The human contact and interaction alone may have positive effects regardless of the validity of the facilitated communications.

    The fact that Mrs. Savarese works in this field tends to make me more, rather than less, skeptical. She's promoting techniques she uses in her work.

    I wish them all well, but I have my doubts about the real effectiveness of what they are doing.

    By Blogger JAM, at 11:45 AM  

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