Assessing and Comparing Health-Related Independence for Physical and Mental Health Conditions in Youth with Autism Spectrum Disorder

Background: Physical and mental health conditions are prevalent among youth with Autism Spectrum Disorder (YASD). Youth’s ability to management their health care needs is imperative as YASD transition to adult health care services. It is unclear what health care management skills YASD have, including describing and seeking care for their health and mental health needs.

Objectives: This study aimed at increasing our understanding of health-related independence and transition needs by examining YASD’s ability to describe and seek care for their physical and mental health conditions and conducting the first analysis to examine what predicates describing and care seeking behaviors for YASD.

Methods: Caregivers (n=500) from five distinct Autism Treatment Network centers participated in a survey examining Health-Related Independence. Eligibility criteria for caregivers included being the primary caregiver/guardian of a youth age 16-25 with a diagnosis of ASD and being English speaking. YASD diagnosis and age were verified through chart records. Unadjusted and adjusted analyses determined 1) prevalence of physical and mental health conditions within the population; 2) associations between describe and care seeking behavior for physical and mental health conditions; and 3) potential predictors of describing and care seeking behaviors for both physical and mental health conditions.

Results: Ninety percent of caregivers who completed the survey were female, with just over 40% having a bachelor or higher-level education. The majority of caregivers lived in two-person households (77%) with moderate to high incomes ($50,000 or more) (71.2%). The average age of YASD was 19 years, with the majority being male (79%) and white non-Hispanic (82%). Most caregiver reported their youth as having Autistic (35%) or Autism Spectrum Disorder (28%) with moderate daily limitations (57%).

The majority of caregivers reported their youth had or currently have mental health conditions (90%) with 43% reporting 3 or more (e.g., ADHD, anxiety, and depression). Less than half of caregivers reported their youth needing mental health services (46%) within the last 12 months, over 90% received the mental health services they needed. Caregivers reported that 53% of YASD were able to describe their physical health condition and 45% were able to seek care for them. Regarding mental health conditions, caregivers reported 45% of YASD were able to describe their condition and 33% were able to seek care. Describe and care seeking behavior was significantly higher for physical versus mental health conditions (p<.001). Regression analysis showed similar predictors for describing and seeking behaviors regardless of whether the condition type. Intellectual disability was a strong predictor of each outcome (p>.005), while demographic and family-level variables accounted for little variance.

Conclusions: YASD have high rates of mental health conditions but are less like to use, describe, and identify mental health service/needs compared to physical health services/needs. These finding can inform much needed health care transition and YASD empowerment interventions focusing on both physical and mental health conditions.