The Long Haul: On "Autism 911"

Autism 911 is the name given to a series that's been running on CNN about the Bilson family of Seal Beach, California. Their middle child, Marissa, is on the autism spectrum. As a toddler her tantrums were "off the charts"; now, at the age of 13:

Marissa's behavior has not passed; it has, in fact, become worse. According to Bilson, Marissa and her tantrums rule the household. "I don't want to hear her screaming and tantruming, so we pretty much let her do what she wants," [Mary] Bilson says. "We" means Mary, her husband, John, and their two other children, Brittany, 15, and 6-year-old Brendan.

Keeping the peace means that, when it comes to Marissa, the rules are different. She is allowed unlimited time on the one family computer. She is allowed access to her siblings' rooms and possessions. She is allowed to eat dinner at the computer instead of the family table.

In this "911" situation a behavior analyst, Rick Schoeder of Autism Partnership, is called in to help. CNN notes that "usually this type of treatment costs about $20,000 a week, and it's not covered by insurance, but because CNN was allowed to videotape the entire process, AP waived the fee for the Bilsons." (Cynical me thinks, is this CNN getting content for an "autism reality tv show" and Autism Partnership getting some national exposure?)

Of course, Marissa is in need of help; when I read about her, I wondered if her being an adolescent might be contributing to her challenges. (My own son, also an adolescent, has certainly been having his share of late.) Autism Partnership is an ABA agency and ABA---Applied Behavior Analysis---has been part of my son's education since he was just over two years old, first at home and, even since he was 4 1/2, in a school setting. The CNN "Autism 911" series seems to be pitching ABA as "the answer" to Marissa's needs: "Teen's family transformed after autism intervention" is the title of Wednesday's segment. But there are at least two important points overlooked in CNN's report, from my perspective as a parent who's found ABA very important in my son's education, and who has---over the past nine years---found much to question and critique about ABA---about behavior therapy.

For a thorough critique of ABA and the troubled history of behavior modification in general and on autistic individuals and children more particularly, see Michelle Dawson's The Autism Crisis blog and Autism Diva on the "bad old days." When Jim and I first learned about ABA from reading Catherine Maurice's Let Me Hear Your Voice: A Family's Triumph Over Autism, our first thought was, behavior modification? How can we do that? We decided to try ABA after numerous "experts" and teachers and therapists, after spending time with Charlie, said "he's unteachable" in so many words. Charlie's ABA has always been centered around where he's at and his learning style. It's the relationships between him and his numerous teachers and therapists that have been key to his learning, with an emphasis on the positive and on fun, always.

What CNN's report on the Bilson family misses is that it's not as simple as someone appearing and "intervening" with a child and then all's going to be well. Learning is a work in progress for any student, and Charlie no less. There have been changes after Autism Partnership's Schroeder came, but what about after he leaves? According to CNN,

Marissa -- who before the therapy was, in Schroeder's words, "out of control" -- now has rules to follow, something she didn't have before.

Marissa's mother also learned some lessons about her daughter that week. "I learned that Marissa is smart," Mary Bilson said. "Smarter than I thought."

These days inside the Bilsons' cozy house, there is a lot less screaming and more boundaries are in place. The balance of power is tipping back into the hands of the parents and away from Marissa and her tantrums.

What about the long haul, I've learned to wonder? Like my son, Marissa is getting older and, if she's like Charlie, seeking to be more and more independent every day. I can't tell you how much I'm thrilled to see my son growing up and wanting to do so much more and (just like any adolescent, right?) not listen to mom but do the eye-roll or, very simply, "No." It would be a real service if CNN or some media outlet could show that the real story---the reality---about life with autism and life as a parent raising a child on the spectrum is that autism is lifelong. We don't just need band-aid interventions, but effective, long-lasting, well-thought out, humane and ethical solutions for teaching kids and supporting them in the ways that encourage their abilities, throughout their lives.

It's the rest of what happens to Marissa that is the real reality story.

Image by greefus groinks.