Engaging Underserved Communities in Identifying Barriers to Early ASD Diagnosis and Treatment

Background:

Clinical accounts indicate that disparities exist among families of children with Autism Spectrum Disorders (ASD), and that these disparities impede timely diagnosis and intervention.  Further, families living in rural areas are more likely to have reduced access to proper care and use alternative, unproven, and potentially harmful treatments.  Thus it is imperative to identify disparities among families of children with ASD, particularly those living in rural underserved communities, in order to minimize such disparities and improve diagnosis and intervention in children with ASD.

Objectives: To begin addressing disparities among families of children with ASD living in rural and typically underserved areas by engaging providers and families of children with ASD. 

Methods:  The investigators established a Community Advisory Board (CAB) of major stakeholders (e.g., parents of individuals with ASD, community-based healthcare service providers, school teachers).  Next, they conducted four focus groups comprised of a total of 45 participants to determine barriers to early diagnosis/treatment, potential resources, and alternative treatment use. Sessions were audio-recorded, transcribed, and analyzed by three trained independent coders.

Results:  Focus group participants reported several barriers to early diagnosis that included pediatricians’ lack of knowledge related to ASD, parents’ not recognizing signs and symptoms of ASD, inadequate screening tools, parental denial, prolonged wait time to see a developmental pediatrician, insufficient time spent with pediatricians during scheduled visits, and parental fear of social stigma associated with an ASD diagnosis. Barriers to early treatment were identified as cost of treatments, delayed diagnosis, lack of local providers, complicated referral process for treatments, limited transportation, parental denial, and lack of pediatricians’ knowledge of available treatments and how to obtain those treatments. Participants also identified several alternative treatments commonly used in children with ASD, such as the gluten-free and casein-free (GFCF) diet, sensory integration therapy, B12 vitamins and other added vitamins, aromatherapy, chelation therapy, hyperbaric oxygen therapy, fish oils/omega-3 supplements, melatonin, music therapy, and forced eye contact.

Conclusions:   As noted, participants reported barriers to early diagnosis and treatment as well as frequently used alternative treatments. There were also unique cultural issues in these remote communities that were identified as worthy of consideration in clinical practice and future research. To our knowledge, this project was the first to bring together both lay and professional stakeholders to identify the needs of underserved families of children with ASD living in these rural areas. Academic collaboration with stakeholders and community members who provide care to children with ASD is a critical step in addressing what is most important to these typically underserved individuals and their families and is a promising way to inform clinical practice and future research. Results from this initial work set the stage for an ongoing  PCORI-funded Tier 1 project that is currently underway and aimed at improving the overall quality of life for all individuals with ASD and their families.