Receipt of Early Childhood Special Education and Therapeutic Services Prior to Autism Diagnostic Evaluations in Children Referred to a Regional Autism Clinic

Background:  The estimated lifetime cost to care for all individuals in the US with autism spectrum disorder (ASD) is $35 billion or $3.2 million per person. However, when early interventions are implemented, studies have shown potential savings of up to $208,500 per child across 18 years of education. Increasing recognition of ASD behaviors by families and primary pediatric health care providers has led to long wait lists at tertiary ASD diagnostic clinics and delays in formal ASD diagnoses. Whether such wait lists for ASD diagnostic evaluations delay referral to early interventions has not been previously investigated.

Objectives:  To determine the prevalence of receipt of early intervention and therapeutic services in children prior to their diagnostic ASD evaluations and whether prior receipt of such services predicts an ASD diagnosis.

Methods:  The electronic medical records of all children ≤ 5 years of age evaluated at a single regional ASD clinic between September 2012 and June 2014 were reviewed. Information regarding type of services, clinical diagnoses, and demographic information was abstracted for each patient.

Results:  561 children (mean age = 44 months [SD 10 months]; 80% [N=450] male; 20% [N=111] female) completed a diagnostic ASD evaluation. Of these children, 498 (89%) were already receiving early intervention services and only 63 (11%) were not receiving any services. Receipt of services did not vary based on race, ethnicity, insurance type, or primary language. Children who were already receiving services were more likely to receive an ASD diagnosis (67% [N=333]) than those not receiving services (43% [N=27]; p = .0002).

Conclusions:  Despite concerns that long wait lists for diagnostic ASD evaluations may delay initiation of critical early interventions, our data indicate that a majority of children are receiving early intervention services prior to their diagnostic ASD evaluations, particularly if an ASD diagnosis is confirmed. This may be attributable to increased awareness among primary care providers and families of the importance of early interventions. Further investigation into access to more intensive and costly interventions (such as Applied Behavioral Analysis) once an ASD diagnosis is established is warranted.