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Journal of Autism and Developmental Disorders

04-07-2024 | Original Article

“There is No Help:” Caregiver Perspectives on Service Needs for Adolescents and Adults with Profound Autism

Auteurs: Emily F. Ferguson, Miya L. Barnett, Jon W. Goodwin, Ty W. Vernon

Gepubliceerd in: Journal of Autism and Developmental Disorders

Abstract

The underrepresentation of individuals with profound autism (who require 24/7 access to care) in autism research has resulted in limited knowledge about their service needs and a lack of evidence-based practices tailored to those needs. This study explored caregiver perspectives on service needs, barriers to accessing care, and treatment priorities to guide treatment development and improvement of service delivery. A sequential mixed-methods design integrated quantitative survey data (n = 423; Mage = 18.89 years; 26.7% female) with qualitative interviews (n = 20) with caregivers of adolescents and adults with profound autism. Quantitative findings indicated regular socialization opportunities were the most frequently endorsed unmet service need (60.3% of caregivers), followed by primary health care with autism-trained staff (59.3%), social skills instruction (55.8%), life skills instruction (51.3%), and behavioral support (47.3%). Higher likelihood of needing social activity groups was associated with elevated emotional reactivity, higher language level, minoritized ethnicity, and lower household income. Greater need for specialized primary health care was associated with lower income, while the need for social and life skills instruction was associated with increased age and elevated dysphoria. Qualitative analysis identified 10 themes that converged and expanded quantitative findings by highlighting a pervasive shortage of individualized, goal-oriented services, common barriers to care, and the priority of developing centralized treatment settings that coordinate care throughout adulthood. This study identified pressing service needs for adolescents and adults with profound autism in the United States. These insights are crucial for improving the accessibility and quality of clinical care.

This paper uses the term “profound autism” using the definition put forth by the Lancet Commission (Lord et al., 2022). We use this descriptor to recognize unique service needs, while simultaneously exploring heterogeneity related to service needs within this subset of the autism spectrum (Kapp, 2023; Singer et al., 2023). This paper uses identity-first language (“autistic”) or “autistic with co-occurring ID” when not referring to profound autism specifically.

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Titel: “There is No Help:” Caregiver Perspectives on Service Needs for Adolescents and Adults with Profound Autism
Auteurs: Emily F. Ferguson
Miya L. Barnett
Jon W. Goodwin
Ty W. Vernon
Publicatiedatum: 04-07-2024
Uitgeverij: Springer US
Gepubliceerd in: Journal of Autism and Developmental Disorders
Print ISSN: 0162-3257
Elektronisch ISSN: 1573-3432
DOI: https://doi.org/10.1007/s10803-024-06451-x

Bohn Stafleu van Loghum

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