Opt In - Implementation and Evaluation of an Early Intervention Program for Children Waiting to Receive an Autism Diagnosis

BACKGROUND. The increasing prevalence of autism spectrum disorder (ASD), now at 1 in 36 children, highlights an urgent need for early interventions that are both effective and efficient, given the social and economic impact of the challenges experienced by individuals on the autism spectrum and their families. Several clinical trials have documented the benefits of parent-mediated interventions starting early in life, even before a formal autism diagnosis is established. Symptoms of autism manifest across the lifespan and can be diagnosed as early as 12 months of age. Although parents often identify concerns about their child's development during the first two years of life, the median age of diagnosis in the United States continues to be 49 months. Even following formal diagnosis, services often do not begin for another 9 months. These cumulative waiting times often result in children receiving minimal early intervention prior to school entry. Additionally, health disparities disproportionally affect access to services for families from minoritized and socioeconomically disadvantaged backgrounds. Families who are low-income, have low parental educational attainment, or are from minoritized racial and ethnic backgrounds not only experience delays in receiving diagnoses, but are also less likely to receive high-quality services following diagnosis. These inequities have been exacerbated by the COVID-19 pandemic.

Barriers to accessing diagnostic services limit the opportunity to receive autism-specific interventions at the age for which they are shown to be maximally beneficial. Children on the autism spectrum whose needs are not addressed in a timely fashion are at an increased risk of impairments in cognitive, adaptive, and social dimensions of well-being, as well as physical and mental health issues. Further, the 'passive waiting' time in the waitlist is harmful for parental wellbeing and mental health, with research reporting feelings of frustration, worry, and stress in parents experiencing the yearlong 'odyssey' from initial concerns to diagnosis and intervention referral.

Importantly, such harmful delays in accessing autism-specific early interventions are potentially avoidable, as many caregivers of children later diagnosed with autism identify concerns about their child's development before her or his second birthday, often as early as 13 months of age. Many difficulties identified by parents during infancy and toddlerhood can be successfully addressed through evidence-based intervention practices. For example, early emerging differences in verbal and nonverbal communication are amenable to improvements through targeted parent-mediated interventions, with benefits documented across multiple dimensions of wellbeing (i.e., adaptive and social-communicative functioning).

Despite advances in this area, the potential benefits of early interventions remain largely untapped, as wait times to receive a formal diagnosis of autism are such a significant barrier that they have been referred to as a "crisis" in the field, with parents reporting an average wait time of 1.2 years in the US. The American Academy of Pediatrics recommends simultaneous referrals for clinical diagnostic evaluation and early intervention for young children with suspected autism - however, most children without an autism diagnosis receive low-intensity, generic early interventions rather than autism-specific early intervention programs that rely on evidence-based practices. Accordingly, key stakeholders, including caregivers and providers, have voiced the need for facilitating earlier access to intervention options to counteract the harmful impact of the waitlist crisis. Accordingly, the current project focuses on circumventing the roadblock of delayed access to diagnosis and intervention by empowering caregivers to address their children's needs while they are waiting to be seen for a formal diagnosis.

One viable option to accomplish this goal is the delivery of parent-mediated intervention programs that do not require a previous diagnosis or enrollment in formal early intervention services. In particular, recent research has shown the promise of self-directed online intervention programs for caregivers of autistic children. These programs involve independent access to online resources that caregivers can utilize at their own pace and individualize to their own children by selecting content relevant to the specific difficulties experienced by their children. Implementation of the intervention strategies might be exclusively self-directed (i.e., parents deliver the intervention strategy without any assistance from a provider) or based on a hybrid format, whereby a clinician is available to provide guidance and clarification related to the program's content, although without explicit coaching and feedback. Across formats, self-directed programs do not rely on diagnostic and intervention services for eligibility, insurance and billing purposes, providing a potential avenue for circumventing the roadblock of delayed access to diagnosis and intervention. Research has documented that despite not being coached by experienced clinicians, caregivers have expressed a high degree of acceptability and satisfaction with the self-directed format, demonstrated fidelity of implementation, experienced gains in knowledge and their use of the intervention strategies was associated with child improvements following parent completion of programs. However, substantial variation in outcomes in response to different self-directed programs was documented, and existing research only focuses on children who were already diagnosed. Therefore, the potential impact of a self-directed intervention program during families' enrolment in waitlists for a diagnostic evaluation remains unexplored.