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. 2025 Oct;55(10):3460-3477.
doi: 10.1007/s10803-024-06451-x. Epub 2024 Jul 4.

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

Emily F Ferguson  1 , Miya L Barnett  2 , Jon W Goodwin  2 , Ty W Vernon  2
Affiliations

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

Emily F Ferguson et al. J Autism Dev Disord. 2025 Oct.

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.

Keywords: Adulthood; Autism spectrum disorder; Caregivers; Intellectual disability; Profound autism; Service systems.

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Conflict of interest statement

Declarations. Ethical Approval: All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional research committee and with the 1964 Helsinki Declaration and its later amendments or comparable ethical standards. Informed Consent: Informed consent was obtained from all individual participants included in the study. Data Access: Access to these data may be available upon request. Please direct all inquiries to the corresponding author. Conflict of Interest: Not Applicable.

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