Early Intervention Participation in Families with Toddlers with or at-Risk for an Autism Spectrum Disorder

Background:  

Research has shown that accessing Part C Early Intervention (EI) services at younger ages can alter the trajectory of disability for children with, or at-risk for, autism spectrum disorder (ASD). In studies using quantitative methods intervention services focused on types of services received, parents’ satisfaction, with parents of older children with various disabilities. Qualitative investigations with a sufficient sample would help understand family experiences and decisions related to EI service participation, particularly for families with young children that have or are at-risk for autism. It is important to identify families’ decisions for accessing services, identify additional services they are not receiving, and possible barriers impacting families’ perceptions and experiences with EI.

Objectives:  

The current study explores EI service participation and experiences of families with toddlers with or at-risk for ASD, with the following questions:

1. What factors impact a family's decision to participate in the EI services that they and their child receive?

2. What services do parents want to receive, and what quantity of services do they desire?

Methods:

Thirty seven semi-structured, 20-minute interviews were conducted with families who participated in a larger randomized control study. Families had a child between 16-36 months of age, failed MCHAT, and were ethnically and racially diverse. Interviews were video recorded and coded by two graduate research assistants, who had established reliability on the codes. Using grounded theory, they generated themes from the data and coded for axial codes (sub-themes within the data).  

Results:  

Thirty-three of the 37 families were receiving at least one EI service, with speech therapy being the most accessed. On average, children were referred at 20 months, although many parents reported concerns at 12 months. Many families were referred to local EI agencies by pediatricians. Factors impacting families’ decision for services accessed include child qualified for service (based upon delay) and services that targeted the specific delay. Many families reported that the most positive part of service was reflected in their child’s progress. All of the families reported that they wanted more services for their child; only three mentioned parent support groups for themselves. TEACCH, play group, and occupational therapy were the services parents desired most. By investigating desired and additional resources for families with toddlers, our study identified discrepancies between EI service and parental expectations.  Many families cited time, coordinating with service providers, financial burden, a lack of service choices for their child, as barriers to accessing specific services.

Conclusions:

Our findings confirm and extend the literature by interviewing families of toddlers with or at-risk for ASD, in that we identified factors impacting a families’ decision to access specific EI services. Parents reported that additional funding and accessing research-based interventions would help their child. Additional research investigating the impact of services for parents is warranted. Identifying and understanding families’ preference and decisions to access EI services can help identify gaps in service and practice