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

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Lindly, O. J., Abate, D., Fuchu, P. L., Kuhn, J. L., Mudnal Bharath, P. S., Asantewaa, S. M., Feinberg, E., & Broder-Fingert, S. (2025). The impact of state policy on early autism diagnosis: A qualitative investigation. Autism, 29(8), 2163-2180. https://doi.org/10.1177/13623613251336813

Publication date: 22 May 2025 Added to AutiHub: 18 Oct 2026 Type: Article Article language: English
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Authors

Publication authors
8
Autistic authors reported by the publication
1
  1. Olivia J Lindly
  2. Danielle Abate
  3. Plyce L Fuchu
  4. Jocelyn L Kuhn
  1. Purnima S Mudnal Bharath
  2. Sarah M Asantewaa
  3. Emily Feinberg
  4. Sarabeth Broder-Fingert

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 abstract In 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.

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Cited bibliography overview

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Cited references
70
With a DOI
59
Without a DOI, from raw bibliography text
10
0 / 70 (0.0%) cited references include at least one author identified as autistic.
References with data to complete
5 / 70 (7.1%)
References with detected author names
65 / 70 (92.9%)
Without detected author names
5
Without a structured title
5
Without a stable identifier
10
References with raw author names still to review
5
References with external metadata lookup issues
0
These indicators apply to cited references displayed on this page, after technical duplicates have been merged. A reference without a DOI can still support author statistics when a title and author names are available.
Author names detected in the cited bibliography
401
From DOI or external metadata
401
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
5
80 / 401 (20.0%) names are linked to an author already present in AutiHub. 321 / 401 (80.0%) names are not yet linked.
Names linked to a person identified as autistic
0 / 401 (0.0%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 0 / 80 (0.0%). Distinct people identified as autistic: 0 / 336 (0.0%).
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