The response to the recent announcement by the CDC was a reminder that the autism community is still ineffective in advocating for proven therapies, particularly Applied Behavioral Analysis (ABA).
The news that 1 in 110 children has an autism spectrum disorder set off an immediate response from major media outlets and advocacy groups. Autism Speaks blasted out a press release calling for more resources, and to his credit, co-founder Bob Wright specifically mentioned the importance of requiring insurance companies to cover “behavioral health treatments.” The problem is that we don’t know which treatments he’s talking about or the benefits that these treatments offer.
Apparently the media doesn’t know either. For example, a Philadelphia Inquirer article on the CDC’s announcement concludes by stating:
…few therapies have been subjected to rigorous studies of effectiveness, and none is considered a gold standard. Behavioral approaches, speech and occupational therapies, medications, special diets, and vitamin injections are available.
This is misleading, to say the least. The Association for Science in Autism Treament, a non-profit that recommends proven treatments, reminds us that ABA has been around for 30 years and is effective in increasing communication and socialization as well as reducing inappropriate behaviors. There have been numerous peer-reviewed publications supporting the use of this therapy.
Autism Speaks has missed other opportunities to promote a greater awareness of ABA and its benefits. Their recent TV campaign complained that our kids on the spectrum are victims of “insurance discrimination” but failed to be specific. I had to read through three paragraphs of the press release announcing the campaign to confirm that they were talking about mandating coverage of ABA which is “recognized as an effective, evidence-based treatment for children with autism” and can cost more than $50,000 a year.
Oganizations with a mission to promote biomedical interventions occasionally (and sometimes grudgingly) acknowledge the benefits of behavior-based treatment. Search long enough and you’ll see Defeat Autism Now! (DAN) hail the successes of ABA as shown in this press release. Dig really deep into the Talk About Curing Autism (TACA ) website and you’ll learn that ABA is the “gold standard” of behavior therapies and that school districts will sometimes even pay for it. Jenny McCarthy, the anti-vax crusader and self-proclaimed graduate of the “University of Google,” used ABA to treat her son. Imagine the demand for therapy if she used her time on Larry King to talk about this instead of railing against the medical establishment.
I attribute my own son’s progress in communication, socialization and self-help skills to his ABA-based programs. Clearly, the scarcity of reliable and readily available information about ABA comes at a great cost. Even proven therapies won’t work if you can’t afford them, can’t find them or can’t be convinced that they will make a difference.
Photo Credit: jbcurio’s flickr photostream