Shared Decision Making (SDM) and the Treatment of Autism Spectrum Disorders (ASDs)

Background: Many pediatricians report discomfort managing children with ASDs. This may increase when families pursue complementary and alternative medical (CAM) treatments. Shared decision making (SDM) affords family members an opportunity to partner with pediatricians to exchange information and reach a consensus on treatment, taking into account evidence-based medicine and the context of family values. Purpose: To identify barriers to using an SDM approach among pediatricians and families of children with ASD. Methods: We conducted semi-structured interviews of 20 primary care pediatricians and 20 parents of children with ASD 3-5 years. Interviews were audiotaped, transcribed verbatim and analyzed using a modified grounded theory approach to identify common and differing themes. Results: We identified 4 themes: (1) Often parents did not discuss treatment choices with pediatricians who, nearly uniformly, were uncomfortable making recommendations. (2) Parents using CAM reported conflict with their pediatrician, who frequently disagreed with these treatments (3) Both groups identified similar barriers to services (diagnostic delay and expensive treatments), increasing family expectations for recommendations to overcome barriers (4) Families experienced great stress and found support in the community, but not from their pediatricians. Conclusions: Many pediatricians do not view ASD treatment to be within their scope of practice or competence. Pediatricians need additional training to be effective partners in SDM for ASD. Similarly, parents often independently pursue treatments, not benefiting from professional expertise regarding safety and efficacy of treatments nor referral to supports. Much work is needed to effectively foster SDM in primary care for children with ASDs.