The impact of state policy on early autism diagnosis: A qualitative investigation.

Abstract

Autism diagnosis before age three to expedite access to critical services is a public health priority in the United States. Still, the average age of autism diagnosis is 49 months with substantial variability across states. By examining policy-defined as laws, regulations, procedures, administrative actions, incentives, or voluntary practices of governments or other institutions-modifiable structural drivers of early (or late) autism diagnosis may be identified. We, therefore, sought to identify policies impacting early autism diagnosis in five states that are part of a larger initiative to improve autism diagnosis (Arizona, California, Connecticut, Massachusetts, and Pennsylvania) and those that exist nationally. We conducted semi-structured interviews from 2021 to 2023 with a purposive sample of 57 autism policy or research experts. The following four themes were identified through conventional content analysis: (1) developmental monitoring is critical; however, developmental screening policies vary within and across states; (2) myriad policy and contextual factors shape early diagnosis pathways within states; (3) early intervention by the state and community-based early childhood programs influence early autism diagnosis; and (4) persistent disparities in early autism diagnosis pathways are affected by policies. Study findings highlight the importance of advancing certain state and federal policies to increase early autism diagnosis.Lay abstractIn the United States, when children on the spectrum are diagnosed before age three, it can help them get the services they need to thrive. There are many differences between states as far as how many children are diagnosed with autism and the average age when they are diagnosed. Some work suggests these differences may be due to state polices, which include the laws and processes governments and organizations follow. Little research has tried to understand the similarities and differences between state policies related to autism diagnosis. Because of this, our study looked at how state policies impact the timing of autism diagnosis in the United States. We interviewed 57 experts in five states and nationally from 2021 to 2023. Four key themes were identified including (1) developmental monitoring often leads to screening, but there is much variation in and across states; (2) family, community, and healthcare factors shape pathways to autism diagnosis in states; (3) early intervention and education programs play a role in autism diagnosis; and (4) systematic differences in access to diagnosis services persist for certain groups of children and families such as those with limited English-speaking abilities. This study's findings point to certain state and federal policy changes or enhancements to reduce the age of autism diagnosis and ameliorate persistent disparities in autism diagnosis.