In July 2019, OCALI’s Office of Policy, on behalf of Ohio’s Interagency Work Group on Autism (IWGA), issued a survey to gain insight into family experiences around the time of diagnosis. More than 280 families responded and the results are available on OCALI’s website.
The good news is, the survey indicates that we are making progress as a state in terms of early diagnosis and helping families find the resources they need. For example, more than half (55 percent) of respondents indicated that their child was diagnosed by age three, and 80 percent were already connected to services and resources once diagnosed. Additionally, 90 percent of families receive services through school-based resources. Notably, families reported that the thing that helps them most in their journey is connecting with other families.
However, the survey also indicated several opportunities where improvements are needed to help children and families get access to the services they need to help children with autism live their best lives for their whole lives. For example, almost all families were initially told their child did not have autism or to “wait and see.” They were not referred for additional screening, evaluation, or services.
Additionally, more needs to be learned about the experiences of racially and ethnically diverse families, single parents, and families living at or below the poverty line, as the survey respondents did not adequately represent these population.
OCALI’s Office of Policy and the IWGA are committed to continuing to learn more and to utilize the information from this survey to guide future development and dissemination of resources for families.