Over the past two weeks, I've read two really well-written memoirs about raising a child with autism. One, Unraveling the Mystery of Autism by Karyn Serousi, was written several years ago. The other, A Child's Journey Out of Autism, came out just this week. While both are literate, gripping memoirs, I found both very disturbing.
Certainly, it's possible to take issue with the books' recommendations for treating autism - since both authors are devotees of the DAN! protocol, a controversial biomedical approach to autism treatment. And it's possible to worry that the lists of specific supplements and pharmaceuticals included in both books could substitute for medical advice for some parents.
But what really troubled me about both of these books is the obsessive nature of each author's focus on her child's autism - and the assumption, on the part of both authors, that all parents should be equally obsessed. In both books, in fact, the word "obsession" is used over and over again. In both books, the authors make it clear that they are willing to do anything, spend anything, sacrifice anything in hopes of a cure. Both authors include anecdotes in their books which make it clear that they are horrified by parents who are unwilling to follow in their footsteps.
Of course, any good parent will seek appropriate treatments for their child with autism. But the culture of obsession has become almost a norm in the autism world. Rather than balancing care of an autistic child with financial concerns, relationships, and the needs of other siblings, parents are urged to drop all other interests in favor of pursuing anything and everything for their child with autism. And the message of both these memoirs is "if you follow me, you will cure your child."
Not only is it fiscally, personally and physically dangerous to become obsessive about autism treatments, but the the promise of a cure is disingenuous. The probability of a child with autism being literally cured is astronomically small (though of course symptoms can lessen and all children gain new skills). By playing on parents guilt and anxiety, though, it's not too hard to push families to the brink of financial, physical and personal collapse.
- What to Do After the Autism Diagnosis
- What NOT to Do After the Autism Diagnosis
- Don't Let an Autism Diagnosis Drive You Crazy