The August 2006 issue of Reader's Digest featured an article entitled, “Boy Wonder” (McGovern, 2006), written by the mother of 10-year-old Ethan, who has autism. She chronicled a kind of family journey featuring her son's autism, from the diagnosis to her own acceptance. McGovern concluded her article by noting that “Once we stopped trying to ‘fix’ our autistic son, we started to appreciate the world as he saw it” (p. 137). She tells a touching, but somewhat confusing story about a lost battle to make her son “normal,” but she conceded that various treatments resulted in the elimination of Ethan's crying jags and tantrums. The attempts to “fix” Ethan included dietary changes, floor-time play, sensory integration, auditory integration, music therapy, and applied behavior analysis. Ethan's mother asserted, “The good news is that these therapies do work” (p. 139).
This might sound reasonable to the 80 million worldwide readers of Readers Digest (Adler, Helm, & LaMorte, 2006), and perhaps soothing to those readers who have a child with autism, but so far as I know, only one of those listed therapies, namely, applied behavior analysis, has been shown to be an effective treatment for autism. There is little or no empirical support for the other treatments that were tried with Ethan. (There is a much longer list of additional unproven and sometimes even harmful therapies applied to people with autism.) Nonetheless, parents should be aware of unqualified practitioners who market the highly technical and intensive applied behavior analysis approach (cf. Sturmey, 2006). However, when the approach is implemented by qualified practitioners, applied behavior analysis appears to produce important life changes (dramatic improvement and even “normalcy”) for about 50% of the children with autism (see Swallows and Graupner, 2005, for a recent review). The point here, however, is less about what works for autism and more about the popularity of methods that do not work. Despite the significant professional interest in autism, it appears that as the reported prevalence of this disorder grows around the world, so does the misinformation about how it should be treated.
Why are people with autism subjected to so many ineffective therapies? Have we set the bar so low with autism that we continue to use approaches that have little or no demonstrated effect? We do not subject ourselves to unproven remedies and continue to use them after they fail. I suppose that the myriad of ineffective therapies used for Ethan explains why his mother gave up the fight and concluded, “All the families I know who wage this war come to a point where they lay down their arms” (p. 139). To me, this implies that families routinely try to help their children with all sorts of unvalidated methods that do not work as hoped for and, consequently, eventually give up hope altogether. Reader's Digest did not print the letter I sent in which I responded to the article, but perhaps there is a message to some of the readers of Intellectual & Developmental Disabilities who encounter parents who are clinging to the belief that an unsubstantiated method will work for their child: As professionals interested in promoting effective treatments for autism, we have a responsibility to be honest with parents about what works and what does not work.
Parents trust practitioners who promote and implement ineffective interventions. Is there a way for parents to decide for themselves about the effectiveness of a given treatment? A unique approach to helping parents decide was advanced recently by Kaye and Vyse (2006), who described in detail how to teach parents to objectively evaluate the effects of an intervention with their child. These authors demonstrated how the parents of children with autism can learn to identify target behavior, collect data, and evaluate results. This decision-making framework provides unbiased information, but given the diminished role of the scientist–practitioner approach in developmental disability services today (Jacobson, Foxx, & Mulick, 2006), its application will likely be limited.
In any case, misinformation about approaches that should be employed for children with autism appears to be a mainstream phenomenon in the United States and probably worldwide. We can reduce some of the squandered time and effort by holding the practitioners who continue to implement ineffective treatments to a higher standard of proof, and we should certainly require evidence of effectiveness for the next seductive, but fruitless treatment on the horizon. This kind of professional integrity is what families need now, and, more important, it will be the basis for discovering new treatments for autism that are truly effective.
The views expressed in this article do not necessarily reflect the policies of the supporting organization.
C. Steve Holburn, PhD (firstname.lastname@example.org), New York State Institute for Basic Research in Developmental Disabilities, 1050 Forest Hill Rd., Staten Island, NY 10314