Raising a Child with Type 1 Diabetes and Autism—Using Social Media to Identify Barriers and Facilitators

Children with both T1D and autism pose a distinct challenge, and there is exceedingly little research on T1D self-management in this special population and few resources to guide healthcare providers (HCPs) on how to best partner with families. This qualitative study used an exploratory inductive thematic approach to analyze a public Internet forum authored by caregivers to children with both T1D and autism. All 398 posts were imported into NVivo 11 (QSR International). After codebook development, the primary coders (TO, SO) coded 10% and then 20% of the dataset, with Cohen’s kappa .994 and .996, respectively. With high inter-rater reliability established, coding of all remaining posts was then completed. Inductive thematic analysis revealed the following themes: 1) Parents of children with T1D and autism yearned for support and did not feel understood by the autism community or the T1D community; social media provided much-needed peer support from families that understood the unique experience of raising a child with both conditions. 2) Numerous coping techniques were discussed, including focusing on T1D management first, as glucose levels could affect behavior; establishing concrete rules and routines; and advice on types of needles and technology that might be better tolerated in this unique population. 3) Descriptions of the healthcare experience, including the helpfulness of multidisciplinary teams with endocrinologists and autism specialists jointly developing treatment plans. 4) Challenges in school and camp settings, as well as challenges in finding caregivers. 5) Sensory issues precluding use of technology such as insulin pumps, and the utility of tubeless pumps in overcoming some of these challenges. This study provides valuable insight for HCPs into the challenges these families face and lays the groundwork for future studies to evaluate how HCPs can best care for and advise this unique population. Disclosure T. Oser: None. S.M. Oser: None. K. Bangalore Krishna: None. D.E. Hale: None.