Disability education in pediatric rehabilitation medicine physicians: A survey study.

Parents of children on the autism spectrum must navigate difficult treatment decisions due to the heterogeneous nature of autism itself (Karst & van Hecke, ; Smith & Anderson, ). Autism spectrum disorder is characterized by considerable variability in symptom presentation, severity, and co-occurring conditions (Hirota & King, ). This heterogeneity creates diverse and individualized support needs across multiple domains, including social communication, behavioral regulation, sensory processing, and daily living skills (Levy et al., ). Furthermore, children with autism frequently experience co-occurring conditions such as anxiety, behavioral challenges, and attention-deficit/hyperactivity disorder (ADHD), adding further complexity to treatment planning (Mosner et al., ). Given this variability, parents are often offered numerous treatment options (Miller et al., ) with varying levels of evidence (Akshoomoff & Stahmer, ). These include pharmacological interventions to address mental and behavioral symptoms such as anxiety, aggression, and ADHD (Hyman et al., ); behavioral interventions such as Applied Behavioral Analysis (ABA) and Naturalistic Developmental Behavioral Intervention (NDBI) targeting social communication, language development, and daily living skills (Hyman et al., ; Mulé et al., ; Rosenwasser & Axelrod, ); and educational and therapeutic interventions including speech-language, occupational, and sensory therapies to address communication, motor skills, and sensory processing needs (Bowker et al., ; Case-Smith & Arbesman, ; Hyman et al., ; Levy et al., ; Sandbank et al., ; Schaaf et al., ; Schaaf & Miller, ; Valentine et al., ). The breadth and diversity of these intervention approaches reflect the complex, multifaceted nature of autism and underscore the challenges parents face in determining which combination of treatments best addresses their child’s unique profile and needs. Parents often feel lost, they do not know what to do, where and how to seek help (Zisman-Ilani, ), and they lack sufficient knowledge regarding the range of available treatments (Valentine, ) and the best treatment options for their child (Grant et al., ). This knowledge gap impacts their ability to make an informed decision about their child’s care (Dinora et al., ; Locke et al., ; Mire et al., ). In addition, not all autism treatments have strong empirical evidence supporting their efficacy (Carlon et al., ; Levy et al., ), leaving parents uncertain about which interventions are most likely to yield positive outcomes and which may have negative consequences (Miller et al., ). Adding to these challenges, parents also feel insufficiently involved in treatment decision-making (Levy et al., ), and often report that providers dismiss concerns regarding their child’s symptoms and diagnosis. This, in turn, increases parents’ distrust in the providers and can result in reluctance to initiate or adhere to the proposed treatment plan (Bent et al., ; Boshoff et al., ). Taken together, these challenges highlight the need for a structured approach that addresses both the information gap and the collaborative decision-making gap that parents experience. Shared Decision Making (SDM) is a health communication approach specifically designed to address these challenges by improving and facilitating treatment decision-making (Charles et al., , ; Zisman-Ilani et al., ). Unlike traditional independent decision-making where parents navigate treatment choices alone or receive directive recommendations from providers, SDM creates a structured collaborative process. SDM provides structured support in decision-making to patients and providers by focusing on real-time decision-making during an appointment or consultation (not before, after, or asynchronously), to create a partnership between clinicians and patients/families where both parties actively contribute their expertise to reach decisions together (Treichler et al., ; Treichler & Zisman-Ilani, ; Zisman-Ilani et al., ).