A Statewide Tiered System for Screening and Diagnosis of Autism Spectrum Disorder

Abstract

Although autism spectrum disorder (ASD) can be reliably detected in the second year of life, the average age of diagnosis is 4 to 5 years. Limitations in access to timely ASD diagnostic evaluations delay enrollment in interventions known to improve developmental outcomes. As such, developing and testing streamlined methods for ASD diagnosis is a public health and research priority. In this report, we describe the Early Autism Evaluation (EAE) Hub system, a statewide initiative for ASD screening and diagnosis in the primary care setting. Development of the EAE Hub system involved geographically targeted provision of developmental screening technical assistance to primary care, community outreach, and training primary care clinicians in ASD evaluation. At the EAE Hubs, a standard clinical pathway was implemented for evaluation of children, ages 18 to 48 months, at risk for ASD. From 2012 to 2018, 2076 children were evaluated (mean age: 30 months; median evaluation wait time: 62 days), and 33% of children received a diagnosis of ASD. Our findings suggest that developing a tiered system of developmental screening and early ASD evaluation is feasible in a geographic region facing health care access problems. Through targeted delivery of education, outreach, and intensive practice-based training, large numbers of young children at risk for ASD can be identified, referred, and evaluated in the local primary care setting. The EAE Hub model has potential for dissemination to other states facing similar neurodevelopmental health care system burdens. Implementation lessons learned and key system successes, challenges, and future directions are reviewed.

Racial, Ethnic, and Sociodemographic Disparities in Diagnosis of Children with Autism Spectrum Disorder

“… 28 However, a shortage of trained professionals, the time it takes for diagnostic evaluations, and reimbursement constraints all continue to contribute to delayed referral and increased evaluation wait times. 7 The lack of available specialty services and limited workforce capacity have resulted in diagnostic bottlenecks for all children suspected to have ASD. This shortage of specialists is even more pronounced in low-income and communities of color that rely on Medicaid, thus leading to even greater delays for families living in these areas.…”

“…Even when a child screens positive for ASD, a family often experiences long wait times for a subsequent diagnostic evaluation by a specialist, with reported wait times up to 12 months in some geographic locations. 7 Those families from more marginalized backgrounds may not have the same financial and educational resources as others and face additional systemic and interpersonal discrimination; thus, these families have increased difficulty navigating the complex diagnostic and treatment process, particularly in light of extended wait times.…”

“… 5 The average age of diagnosis remains between 4 and 7 years, 6 with this delay being more pronounced with children from lower-income, ethnic/racial minority, and rural backgrounds. 7 Although the prevalence of ASD has been found not to differ across racial and ethnic groups, studies have found that White children and those of higher socioeconomic status are more likely to be both identified and diagnosed with ASD earlier compared with Black, Latinx, and Asian children, as well as children from low-income families. 8 , 9 As a result, non-White and lower-income children are less able to capitalize on early autism-specific intervention services during important developmental windows when optimal neuroplasticity and synaptic proliferation occur.…”

“… 8 , 9 As a result, non-White and lower-income children are less able to capitalize on early autism-specific intervention services during important developmental windows when optimal neuroplasticity and synaptic proliferation occur. 7 , 10 …”

Toward Novel Tools for Autism Identification: Fusing Computational and Clinical Expertise

“…Several models have been developed to increase access to evaluation and early intervention services within community settings. These include providing ASD diagnostic training and consultation to pediatric providers (Hine et al 2020;Keehn et al 2020;Mazurek et al 2019), embedding psychologists within pediatric clinics (Hine et al 2018), and leveraging partnerships with early intervention providers (Juárez et al 2018;Stainbrook et al 2019;Yingling 2019). Such models have demonstrated positive outcomes including reduced wait times for families, reduced travel burden, and family satisfaction with alternate diagnostic processes.…”