Protecting access to early intervention is critical for autistic individuals

We appreciated the recent viewpoint article ¹ discussing the neurodiversity perspective and early intervention (EI) for autism. We share the authors’ concerns about systematic discrimination in the education and employment of individuals with diverse abilities ² and agree that society needs to accommodate both strengths and weaknesses. Having studied the loss of the ASD diagnosis ³, we agree that this should not be a priority in EI for autistic children; rather, EI should focus on supporting them in language, social communication, adaptive behavior, and relationships. We endorse the long-term goals proposed by McCauley et al. ⁴ of autonomy, daily living skills, relationships and employment/activities outside the home, in forms that are consistent with the individual’s abilities and interests.

We were particularly interested in Dawson’s report that parents are increasingly expressing reservations about EI for autistic children and the lack of appreciation for neurodiversity in these programs. We work with a wide cross-section of parents of autistic children, adolescents and young adults, often delivering the initial autism diagnosis, and we rarely hear these concerns. In our experience, parents have pressing concerns about language and communication, relationships with siblings and peers, and behavior and adaptive skills; longer-term concerns typically center on the child’s education and employment and prospects for autonomy and having a family. In addition to child-centered concerns, families are worried about access to supports for their children, including the decreasing access to and increasing costs of EI, coordinating EI with work schedules, the costs of copays and transportation, and childcare for siblings. Many of the families we see, including single-parent families and Black, Indigenous, and People of Color, are socioeconomically disadvantaged. Such families are often multiply marginalized, and especially for those with multiply diagnosed children, primary concerns focus on support for their children, including EI, while grappling with structural racism. We are keenly aware that EI providers face increasing economic pressures to decrease services. Inefficient or limited reimbursement, staff shortages, increasing caseloads, and pandemic-related personnel shortages, have all interfered with in-person EI. We hope that all autism stakeholders and advocates will continue to work together to maintain and increase access to early intervention.