To better meet the needs of autistic people, we need to rethink how we measure services

Services can be critically important to support autistic individuals in reaching their full potential. Diagnostic services can open doorways to autism-related services and to treatments for co-occurring conditions, early intervention and school-based services can set the stage for learning, therapeutic services (e.g. occupational therapy, speech and language therapy, mental health services) can encourage skill building and mental health, and a variety of services related to home and community-based living (e.g. job coaches, transportation services) can support independence in adulthood. Research suggests that when autistic individuals receive services, they often demonstrate improved school and post-school outcomes (e.g. Burke, Rios, & Lee, 2019; Taylor et al., 2016). In addition to being supported by research, the importance of services is an area of consensus among stakeholders in the autism community. In a literature review about research priorities identified by autistic individuals, families of autistic individuals, researchers, and practitioners, research about services was one of the top-rated priorities (Roche et al., 2021). Autistic self-advocates report that research is needed to examine which types of services truly benefit autistic individuals (Autistic Self-Advocacy Network, 2022). Families report that information about ways to access formal services is needed to improve outcomes for their autistic family member (Aleman-Tovar et al., 2022). Researchers, practitioners, and policymakers similarly report that, to better serve autistic individuals, rigorous research that examines which services are most effective for improving quality of life and other valued outcomes is needed (e.g. Interagency Autism Coordinating Committee, 2020; Lord et al., 2022). Given the general agreement on the importance of services for supporting autistic individuals, one might think that there would be rigorous methods to measure appropriate and beneficial services across the lifespan. Unfortunately, this is not the case. A common way to measure services is by examining service receipt—specifically through dichotomizing whether or not a service is received and counting the number of services (e.g. Burke et al., 2016; Ishler et al., 2022; Kaya et al., 2018). This approach to measuring services assumes that more services are better, but such a premise may not be true. A count of services also implies that each service is equally impactful, an assumption that may be false and could point toward inefficient use of resources. Furthermore, the dichotomization method ignores several of the nuances that are important to understanding whether and when services are beneficial, including the intensity of services (e.g. How many weeks or days is the service received?), duration of the service (e.g. How many hours is the service received?), and content of the service (e.g. Does the service reflect evidence-based practices? What are the specific practices that are embedded in the service?). In further detail in another manuscript (Burke et al., under review), we outline additional ways in which extant service measures are insufficient. Measuring services in a way that moves beyond a count of services received and considers the aforementioned nuances has the potential to make research more impactful in informing practice and policy. Studies of mental health services may provide a good model for how to think about measuring nuance. It is relatively common in mental health services research to measure the type of service (e.g. inpatient, outpatient), setting of the service (e.g. psychiatric hospital, clinic, school), number of times the service was used, and benefits of the service (for an example, see the Services Assessment for Children and Adolescents, Horwitz et al., 2001). It is much less common to see comprehensive measurement of developmental disability or autism services—especially as an autistic person moves from adolescence into adulthood. For example, a study may assess whether vocational rehabilitation services are/ are not received and whether the receipt of that service is related to a greater likelihood of employment, but for research to inform practice and policy, it is likely helpful to measure the number of hours of vocational rehabilitation services, the length of time the services are received, who is performing the services, and what specific practices are being implemented. Such a detailed and comprehensive assessment can provide the information needed to understand the circumstances wherein services are effective in meeting an individual’s needs. A measure to understand when and how services are beneficial to autistic individuals will also need to assess unmet service needs and, perhaps most importantly, identify the barriers to not receiving needed services. The number of unmet service needs has been used in research about To better meet the needs of autistic people, we need to rethink how we measure services 1164495 AUT0010.1177/13623613231164495AutismEditorial editorial2023