The Mama Monologues: The One in One Hundred and Sixty Six
In December, President Bush signed a bill that increases federal funding to cure autism by fifty percent. The bill secures $945 million over four years, for screening, research, and treatment. One in 166 children is currently diagnosed with some form of autism; the funding, advocates say, is desperately needed.
In January, 16-year old John Odgren stabbed a 15-year old classmate to death in the bathroom of their suburban Boston high school. Odgren, who has Asperger's syndrome and a hyperactivity disorder, had a history of aggressive behavior which his parents argued was the result of improper school placement. His parents had been struggling with the school board since 2003 to get him into in an appropriate school, one where he would have access to the services he needed. After the stabbing, Odgren repeatedly asked if the other boy was okay.
Last week, Michael and Carolyn Riley were charged with poisoning their four-year-old daughter, Rebecca, who died December 13. Rebecca's death is being blamed on the mix of powerful psychiatric drugs she was prescribed for ADHD and bipolar disorder. According to the New York Times, at the time of her death, "Rebecca was taking Seroquel, an antipsychotic drug; Depakote, an equally powerful mood medication; and Clonidine, a blood pressure drug often prescribed to calm children." The Rileys' lawyer is calling into question the ethics of prescribing these medications to a child Rebecca's age. She had been taking the medications since she was first diagnosed, at age two.
I have a six-year old son who has ADHD; he may also have Asperger's syndrome, or possibly Nonverbal Learning Disability, or he may just be highly gifted; we have been told all three things by different doctors at different times. He is in kindergarten this year, at his third school in three years. He has been on and off four different ADHD meds in the past year; he takes medication for anxiety now. He is my son, my little boy, and I love him, in the same way I am certain that John Odgren and Rebecca Riley's parents loved their children. And like the Odgrens and the Rileys, I am trying to do what is best for my son, who is one of the 166.
And so, when I heard about the new funding for autism research, I was pleased. Mostly. But I am also skeptical, because when I hear about the John Odgrens and Rebecca Rileys of the world, I am reminded of how very little we know about neurological issues like Asperger's and bipolar disorder. And I am reminded of how often the structures that are supposed to guide us in raising and caring for these quirky children fail us. I think the school system failed John Odgren; I think the medical system failed Rebecca Riley.
I worry every day that I am failing my son.
Diagnosing mental disorders, including autism, in children is tricky work. Bipolar disorder will often present as ADHD; Asperger's and NLD share a long list of specific traits; giftedness often mirrors autism. We need better diagnostic criteria, in order to clearly establish what it is that makes kids like John and Rebecca and Henry different from their peers. We need better strategies for helping those kids, better structures in our school systems and better support for families. We need to know more about the medications that are being prescribed to help these kids, and we need to be certain that the medication is used for the benefit of the CHILD and not to make things easier for the adults who are raising them.
It will take more than $945 million to do all of that. And that's before we even get to the root causes of autism and its related spectrum disorders. One in 166 is a huge number, but it is the one—the John Odgren and the Rebecca Riley and my son Henry—that I worry about.
Susan Wagner has a masters degree in English, with a focus on 18th-century British literature, which makes her your go-to girl for all things Jane Austen. Before becoming a mama, she spent ten years teaching literature, writing, and rhetoric. Susan lives in Oklahoma with her husband and their sons, Henry and Charlie; she is constantly on the lookout for the perfect pair of pointy-toed flats. Susan writes about fashion at BlogHer and Friday Style, about parenting at Blogging Baby, and about everything else at Friday Playdate.
Read more of Susan's The Mama Monologues column.
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