Information and Choices
In The Politics of Autism, I describe the difficulties of finding reliable information:
One problem is that a good deal of the solid research about autism lies in academic journals behind an Internet paywall, open only to people who have a university library card or can afford the journals’ exorbitant prices ($35 or more per article). Says neuroscientist Sophia Colamarino: “In today’s information age, where essentially anything said by anyone can be made accessible within a matter of moments, it is unfortunate that families have easy access to all BUT the most scientifically valid information, that which can be found in scientifically reviewed research literature.” NIH and Autism Speaks have tried to remedy this situation by requiring its research grant recipients to put any resulting peer-reviewed research papers on the PubMed Central online archive, but this policy affects only a fraction of the literature on autism.
While we understand why complementary and alternative treatment options are compelling, we cannot in good conscience endorse their use. Ultimately, quality, evidence-based interventions will be most effective for helping their child. Thus, we need to bridge the gap by increasing efforts to make those options more accessible to families of all financial means and geographic locations.
Further, since complementary and alternative methods are growing in popularity, to better help families make the right decisions, clinicians need to create an open, non-judgmental space that includes a dialogue about these different paths of intervention. They cannot dismiss complementary and alternative ones out of hand or make parents feel bad for considering or using them. They do need to respectfully discuss the risks and benefits of possible treatments, suggest what may be most effective, and then partner with parents to monitor their child’s progress.
Researchers and clinicians also can help parents and caregivers make more informed decisions by making their study findings more accessible, both on- and offline. Of course, this is easier to do when clinicians and researchers, like us, work together. For instance, Dr. Roberts and her colleague, Dr. Kaiser, at Vanderbilt University studied early interventions for young children with language delays and found preliminary evidence supporting the benefits of caregiver involvement in the children’s therapies. Now this research informs how Dr. Bauer counsels the parents of children in her clinics. When they inquire if they should be involved in their children’s therapies, she can point to this research to say that there is evidence that it can be beneficial for them to be part of it.
