In The Politics of Autism, I discuss evaluation and diagnosis.
AbstractWaiting lists for an autism evaluation delay timely diagnosis and entry into autism-specific early intervention. To solve this crisis, our field must increase capacity by embracing efficient diagnostic processes. Traditional diagnostic pathways involve complex evaluations and rely on a highly trained but limited pool of specialists, which elongate wait times. Evidence suggests that emerging approaches, including telehealth assessments, primary care diagnosis, and tiered models, reduce barriers. We guide readers through five core issues critical to updating the standard of care for early autism assessment: (1) What are the consequences of maintaining the status quo? (2) What do families prioritize? (3) What evidence supports efficient diagnostic models? (4) What are the consequences of reducing accuracy? and (5) What level of assessment depth is needed to inform action? Our team contends that the critical advantages of adopting efficient service delivery models far outweigh the disadvantages. Collaboration across disciplines, and trust in families’ insights, will help build capacity. We conclude with actionable recommendations for clinicians and policymakers in support of adopting these models.
From the article:
In addition to building the evidence base for efficient diagnostic models, policy change must move in tandem to reduce barriers to service entry for young children on the autism spectrum. This requires prioritizing autism-specific EI – approaches that extend beyond generic developmental practices to directly target differences in social communication, learning, and engagement characteristic of the autism spectrum. As one example, the state of South Carolina adopted a “presumptive eligibility” process in which children under the age of 3 at increased likelihood of autism (i.e., not formally diagnosed) were eligible to begin autism-specific EI without awaiting a formal diagnosis (Rotholz et al., 2017). This policy quintupled the children eligible to receive intervention services from 53 in 2010 to 265 in 2015. Critically, findings attributed this change to the new policy: of the 340 total children receiving intervention services in 2015, 79% came in from the presumptive eligibility process, and only 21% had previously received a formal diagnosis. This example also highlights how service eligibility policies interact with diagnostic practices, and how reliance on categorical diagnoses may limit timely access to supports. Potential barriers to adopting these beneficial approaches include changes to billing systems, documentation requirements for care, and training standards for providers.
