Toward More Equitable Care: A Closer Look at Autism Clinic Intake Practices and Paperwork.

Abstract

Objective: To describe intake requirements among autism clinics and to assess how well intake paperwork aligns with national standards for enhancing language and literacy accessibility.

Methods: This was a survey of 126 autism clinics in the Children's Hospital Association, assessing intake processes and intake paperwork readability conducted between November 2021 and August 2022. Descriptive analyses characterized intake requirements and paperwork components. Free-text responses about intake support strategies were categorized into themes. Logistic regression models examined associations between clinic patient demographics and odds of requiring intake paperwork. Intake packet length, content, and reading grade level were examined.

Results: Of the invited clinics, 73% completed the survey. Among the participating clinics, 55% required intake paperwork before scheduling appointments, 34% offered English forms only, and 89% had no plain language forms. Clinic patient demographics were not associated with intake paperwork requirements. Analyzed intake packets (n = 67) averaged 11 pages long, and most were written above the fifth-grade reading level. Most packets solicited medical, developmental, and educational/therapy history. Many also requested psychoeducational evaluations and teacher rating forms. Reported intake support strategies for families with language or literacy needs included making ad hoc exceptions to the usual process, task shifting to outside organizations, providing support at family's request, and delegating to support staff.

Conclusion: Many autism clinics nationwide require intake paperwork before diagnostic evaluation. Many clinics offer intake paperwork in English only, and paperwork often does not meet health literacy standards. Reducing paperwork requirements and providing more routine and robust intake support may facilitate equitable access to autism diagnostic evaluations.