Author(s): Roger E Thomas and Glenda Maru
Background: The 2005-2006 US National Survey of Children With Special Health Care Needs found children with autism were less likely to receive specific health care, family support services or prompt family–centred care. Parents report more stress if their child has more severe symptoms but stress levels are lower if they find helpful readily available support. Objectives: We wished to identify the types and costs of resources parents of children with autism could find if they searched, and how many are evidence-based. Methodology: We searched for web-based or printed materials, computer applications and programs, videos, CDs and toys and visited children’s stores. We checked whether resources corresponded to the NICE 2013 systematic review on autism recommendations. Results: We identified 27 websites, 10 videos, 188 books, five occupational or play therapy programs and 78 computer applications/games. Only three websites provided information about interventions tested by an RCT: one for Picture Exchange Therapy (PECS) and two for Treatment and Education of Autistic and Related Communication Handicapped Children (TEACCH), and two books that described TEACCH. Parents would not be able to use these resources as PECS is a training program for autism teachers and TEACCH is a training program for parents taught by autism therapists. No website used evidence-based assessment tools to assess biases in design, execution and data-analysis of the resources they advocated. Many contained advertisements to purchase books or other resources they had not assessed. The US Centers for Disease Control (CDC) website reports on autism prevalence rates are evidence-based but the remainder of its website is not. Conclusions: Parents could use much time reading websites and spending money purchasing books and videos that are not evidence based. Parents need guidance from professionals who are up to date with systematic reviews of evidence-based literature, such as the NICE systematic review.
