Whittling Down the Wait Time: Exploring Models to Minimize the Delay from Initial Concern to Diagnosis and Treatment of Autism Spectrum Disorder

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Key points

  • The “diagnostic odyssey” in autism, from initial concerns to diagnosis, is often a long and complicated process for families, prolonged by wait-lists due to a backlog of patients awaiting evaluation by subspecialists.

  • Multiple clinical autism centers throughout the United States have implemented innovative programs to directly address this diagnostic bottleneck, resulting in decreased wait times in their local communities.

  • A change in clinical approach from a focus on diagnosis to a focus on

The autism “diagnostic odyssey”: the traditional model

For most families, initial concerns for ASD are brought up by a parent at a routine well-child visit or identified by routine screening at the 18- and 24-month well-child visit.20 Ideally, according to AAP guidelines, a child is then referred by the provider for audiologic evaluation, EI education services, and a comprehensive ASD evaluation.

Therefore, what is a comprehensive ASD evaluation? There is wide variability in the clinical structure of these subspecialty service providers21; however,

Novel and innovative models for autism spectrum disorder diagnosis

The problem of prolonged wait times for ASD diagnosis and services has not gone unrecognized by families or by ASD service providers. Public outcry has spurred multiple autism centers around the country to devise creative and novel clinical models to reduce the waiting time that families endure between initial concerns and diagnosis, delaying initiation of therapy.

Additional opportunities in technology and public policy

Other opportunities may exist for creative models that improve access to care for children requiring evaluation for ASD. Some of these next steps capitalize on modern technology or may call for changes in public policy. Here, a few examples of models that have the potential to further expand upon the strategies above are discussed.

Telemedicine programs are expanding throughout medicine, including those that focus on developmental disabilities, and have improved access to care, particularly for

Next steps

All of the novel models discussed have shown positive impact on the local communities that they serve. However, efforts to redesign clinical services for the diagnosis of ASD are not pervasive in the medical community. This lack of generalized reform of clinical models is evidenced by the fact that despite substantial efforts by these and other programs, the average age of ASD diagnosis in the United States has still not declined. There is still more work to do to implement innovative programs

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    The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the Centers for Disease Control and Prevention.

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