Self-Reported Health Status Among Individuals with Autism

Panel Presentation
Saturday, May 4, 2019: 10:30 AM
Room: 516ABC (Palais des congres de Montreal)
P. F. Turcotte1, K. Verstreate2, K. Croce2, S. Nonnemacher3 and L. Shea4, (1)Drexel University, Philadelphia, PA, (2)Drexel University, Policy and Analytic Center, A.J. Drexel Autism Institute, Philadelphia, PA, (3)Pennsylvania Bureau of Autism Services, Harrisburg, PA, (4)A.J. Drexel Autism Institute, Philadelphia, PA

As service systems evolve for individuals with autism, self-reported health status is an integral method to understand how individuals with autism and their families perceive their healthcare and service needs.1 Self-rated health is used in the other disabilities and diseases, as well as in limited previous autism-specific research to detect and track changes in health status across medical and physical domains.2,3 Previous research has demonstrated that needs of individuals with autism change as they age.4


  • Identify demographic characteristics and other predictors of self-reported health status changes over the previous year.
  • Leverage free text responses to categorize and qualify changes in self-reported health status


The Pennsylvania Autism Needs Assessment , conducted in 2017, included a survey of individuals with autism over 18 years of age responding for themselves, and a survey of caregivers of individuals with autism of all ages. Information on demographic characteristics, service needs, and self-reported health, as well as a range of other topics was collected. Self-reported health status change over the previous year was reported as better, worse, or the same. Free text responses were available to explain reasons for the change in status.


Individual with autism over the age of 18 (n=1,250) were an average age of 28 and were predominately Caucasian (81.4%). Most individuals’ health remained the same (67.2%), followed by 19.9% reporting “better”, and 12.9% reporting “worse.” Individuals who reported “worse” health outcomes were less likely to be living with parents (58.3% vs 75.1% for “same” and 70.3% for “better” respectively) and were living independently with support or in a group home, had lower average income, lower rates of private insurance coverage, and a higher level of comorbid mental health diagnoses.

The average age of an individuals with autism for whom a caregiver responded (n=5,382) was 15, and this group was also predominately Caucasian (81.4%). Most caregivers reported their child’s health remained the “same” (64.6%), followed by 24.7% reporting “better”, and 10.7% reporting “worse.” Caregivers who were responding for children of younger ages were more likely to have selected “better”, especially in the 0-5 age range (15.5% better, 6.0% the same, and 6.6% worse). This relationship switches as the child’s age increases, and caregivers of individuals with autism who were 16-20 years old age reported 16.7% better,24.3% the same, and 25.0% worse.


Most adults with autism (87.1%) and caregivers responding about their child (89.3%) reported that their health remained the same or improved over the previous 12 months. There were important differences in self-reported health status over the past year, including the age of the individual with autism, as well as the living situation and income. Additional analyses will use logistic and linear regression methods to identify predictors of a “worse” self-reported health status change, including comorbid diagnoses, hospitalizations, and other socio-economic factors. Qualitative analysis of the “other” text response will determine if other reasons for self-reported health status caused changes.