New report underscores the waitlist crisis for children seeking autism diagnosis and evaluation

Reviewed by Lily Ramsey, LLMNov 13 2023

Cognoa, a leading child development and behavioral health company, today published a new report, The State of Pediatric Autism Diagnosis in the U.S.: Gridlocks, Inequities and Missed Opportunities Persist, that underscores the longstanding waitlist crisis for children and their families seeking a diagnosis of developmental delays and autism evaluation. The report assesses results from 111 specialty centers across the U.S.

On average, children and their families are forced to wait three years from the time of first concern of developmental delay to an autism assessment. Delays in diagnosis mean that children are missing the opportunity for early intervention during the critical early neurodevelopmental period when interventions have the greatest life changing impact.

Excessively long waitlists to see the small number of available specialists and the absence of a “standard of care” are major causes for concern throughout the healthcare community. The study, which was conducted by Scott Badesch, Former President of the Autism Society of America, and sponsored by Cognoa, uncovers widespread reimbursement issues that prevent families, especially the already disadvantaged, from receiving an evaluation and subsequent early interventions altogether.

Key findings reveal the inequities and inefficiencies in status quo processes that are leaving most children and families behind:

Unacceptably long wait times for evaluation

• Nearly two thirds of specialty care centers surveyed report wait times of over 4 months between an initial request for an autism evaluation to the time a diagnostic evaluation is conducted.
• Of that group, 21% report waitlists of more than a year or that are so impacted that they are no longer accepting new referrals.

Reimbursement barriers reinforce healthcare inequality

• 44% of centers surveyed do not accept Medicaid, pointing to access disparities which affect already underserved communities most.
• Only 65% of practices accept commercial insurance, forcing those who cannot pay initial costs up front to forego care.
• 77% of clinics identified the extreme length of assessment processes and heavy documentation burdens among the top barriers to timely evaluation.
• 69% of clinics identified staffing issues, including clinician and administrator shortages.
• 43% cited burdensome reimbursement processes and inadequate or lack of reimbursement as barriers to timely care.

No standard of care

• The data shows high variability in the assessment tools used in today’s diagnostic processes, of which there are over 30 listed.
• There are vast state-to-state and healthcare payer-to-payer differences in requirements of both assessment and provider type for an autism diagnosis to be recognized for reimbursement.
• 83% of centers report that autism evaluations take over 3 hours. Of these, 25% report evaluation completion times of over 8 hours. Research shows that these lengthy assessments are not necessary for most children.

“Equipped with a diagnostic made for their setting, primary care clinicians and pediatricians can accurately and rapidly evaluate, diagnose, and manage most children with developmental delays and autism – all from within the medical home” said Dr. Sharief Taraman, CEO of Cognoa.

Yet, in most cases, the forces that be make the ‘autism specialist’ the only option for a diagnosis. This is an imbalance that healthcare leaders and policymakers must take seriously when directing future resources and developing initiatives to standardize, equitize, and streamline evaluation processes for families, irrespective of insurance type. We are failing our children as a nation. It is vital that we expand and empower the pool of providers who can evaluate and diagnose children, and we need to start in primary care.”

Dr. Sharief Taraman, CEO, Cognoa

“Advocates would do well to support policies that encourage providers to get out of their own way,” said one of the specialists surveyed. “We need to prioritize the needs of their local populations by adopting innovative solutions which include comprehensive integration of APPs (advanced practice providers), general pediatricians with additional training, and other mental health workers, especially when these services are provided within a patient's medical home in an integrated model. To be clear, this can be done in a cost-effective manner that's good for morale and improves providers’ personal satisfaction—especially if the work is done in a way that clearly advances goals related to diversity and equity.”