TY - JOUR
AU - E. F. Ferguson
AU - M. L. Barnett
AU - J. W. Goodwin
AU - T. W. Vernon
A1 - 
AB - 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.
AD - Division of Child and Adolescent Psychiatry, Department of Psychiatry and Behavioral Sciences, School of Medicine, Stanford University, 401 Quarry Rd, Stanford, CA, 94305-5719, USA. eferguso@stanford.edu.; University of California, Santa Barbara, CA, USA.
AN - 38963473
BT - J Autism Dev Disord
C5 - Education & Workforce; Healthcare Disparities
DA - Jul 4
DO - 10.1007/s10803-024-06451-x
DP - NLM
ET - 20240704
JF - J Autism Dev Disord
LA - eng
N2 - 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.
PY - 2024
SN - 0162-3257
ST - "There is No Help:" Caregiver Perspectives on Service Needs for Adolescents and Adults with Profound Autism
T1 - "There is No Help:" Caregiver Perspectives on Service Needs for Adolescents and Adults with Profound Autism
T2 - J Autism Dev Disord
TI - "There is No Help:" Caregiver Perspectives on Service Needs for Adolescents and Adults with Profound Autism
U1 - Education & Workforce; Healthcare Disparities
U3 - 10.1007/s10803-024-06451-x
VO - 0162-3257
Y1 - 2024
ER -