Contributed by Adam M. Briggs, PhD, BCBA-D, LBA & Andrea M. Peterson, MA, BCBA, LBA Eastern Michigan University
In response to the growing number of barriers faced by families and caregivers of individuals with autism spectrum disorder (ASD) when pursuing behavioral services (i.e., applied behavior analysis [ABA]) in Michigan, researchers at Eastern Michigan University (EMU) in collaboration with the Autism Alliance of Michigan (AAoM) developed and disseminated a survey (from January 2021–April 2021) to better understand this phenomenon.
Specifically, the purpose of the survey was to:
1) assess the prevalence of children with ASD who experience a delay to behavioral services in the form of waitlist(s)
2) gain an understanding of the needs of their caregivers during this time.
A total of 78 caregivers responded to the survey, with 48 caregivers indicating that they have pursued or are pursuing ABA services for their child. Of these 48 caregivers, nearly 75% of the caregivers’ children spent time on a waitlist for ABA services, waiting an average of 5.5 months on the waitlist before receiving services. The results suggested that the number of waitlists caregivers enrolled their child on did not significantly reduce the length of time spent waiting for services and living in a city was associated with relatively longer waitlist duration. Caregivers’ also indicated that their child’s behavior got worse the longer they remained on a waitlist.
Generally, caregivers indicated that their highest needs while their children were on waitlist(s) for services were related to teaching and maintaining their child’s skills, and reducing and managing their child’s challenging behaviors. The caregivers who participated in the study were interested in receiving various types of support from providers (e.g., parent trainings that utilize flexible formatting [for example, online training modules and videos] with access to a provider for support, questions, and feedback) while awaiting services; however, they indicated there are several barriers that exist (e.g., lack of time to attend, distance to services, and lack of resources or accessibility) that might hinder them for being able to access the supports.
Though this study faced several limitations, such as a low number of participants and lack of financial and ethnic diversity of the participants, the results support the need for providers to develop trainings and offer resources for caregivers while they await ABA services. Future research should consider gathering further information from individuals not represented in this survey by: conducting the survey again with incentives for completing the survey (in order to increase the number and diversity of respondents); evaluate the effectiveness and feasibility of offering caregiver trainings and other related resources; and identify the duration of time spent and the needs of caregivers while they are awaiting other waitlists (e.g., waitlists to get an ASD diagnostic evaluation from autism evaluation centers).
In the future, it is our hope that other states use our methodology so that we can collectively gain a better understanding of how waitlists impact families and what their general needs are during this time from a larger sample that represents more populations across the country.
To read the full report, click here.