Wait Times and Processes for Autism Diagnostic Evaluations: A First Report Survey of Autism Centers in the U.S.

by Kraft Colleen

Coauthors: Scott Badesch, MA; Jennifer Shannon, MD; Carmela Salomon, PhD; Minda Seal, MSA; Tobin Chettiath, PharmD; Sharief Taraman, MD

Medical Devices & Digital Health

Background: Despite mounting evidence that early autism diagnosis and intervention can improve long term outcomes and quality of life, significant diagnostic delays with pronounced health disparities persist. While reliable autism diagnosis is possible as early as 18 months, in the U.S. the average age of diagnosis remains above four years. Specialists typically conduct the vast majority of autism evaluations. Recent workforce surveys, however, have highlighted workforce shortages and continued rise in the overall prevalence of autism among 8-year-olds, now estimated at 1:36. Data is urgently needed to quantify the extent of the resulting waitlist crisis for autism evaluations. Insights focused on current autism specialty center wait
times and processes could help to direct future healthcare resources, and support development of policies and initiatives that reduce barriers to timely diagnosis and treatment
initiation.

Methods: an anonymous online survey asking about wait times and processes for autism assessments was distributed to autism specialty centers across all U.S. states and the District of Columbia (n=1,004). The study received an IRB exemption from Advarra (Pro00067552).

Results: Responses were received from 111 centers representing 38 unique states (11% response rate). There was wide variability in reported tools and assessment processes used across centers, with no consistent standard of care identifiable: In some centers no formal diagnostic tools or screeners beyond the DSM-5 criteria were used, while others required multiple screening and diagnostic tools and additional adaptive, cognitive, and developmental domain specific tests. Nearly two-thirds of centers (61%) had wait times longer than 4 months, with 15% reporting waits of over one year, or waitlists that were so impacted they were no longer accepting new referrals. No respondent centers were able to complete an individual assessment in under one hour, and in a quarter of cases each evaluation was reported to take more than 8 hours. Nearly half (44%) of centers reporting that they did not accept Medicaid patients. Specialist identified barriers to timely autism evaluations included: workforce shortages 69%, Large volume of referrals 61%, time required to write report and fulfill payor testing documentation requirements 54%, time required to conduct the evaluation 37%, and inadequate reimbursement 30%.

Conclusions: Findings from this first-of-its-kind survey highlight unacceptably long wait times for autism evaluations for many children. Multiple barriers to timely evaluation were identified, including extreme length of assessment processes and heavy documentation burden. Other access barriers included burdensome reimbursement processes or inadequate reimbursement to incentivize service provision. Access disparities and lack of reimbursement may hit already underserved communities such as Medicaid families the hardest. Survey findings highlight the need to standardize, equitize, and streamline evaluation processes through policy change to enable early, equitable and accurate autism diagnosis and treatment for all families, irrespective of insurance type or location. Strategies should be explored to expand the pool of autism providers to include primary care and reduce hurdles to reimbursement. Length of assessment and documentation burden could also be reduced through endorsement of more efficient FDA-authorized diagnostic tools.