Trends and Normative Data for a Sample of Adults with Autism and Related Developmental Disabilities on the Stress Survey Schedule (SSS)

Objectives

The purpose of this research was to expand upon the available normative data on the Stress Survey Schedule (SSS) for a group of adults with intellectual disabilities and autism spectrum disorder (ASD). This scale was originally designed in 2001 to measure stress in persons with ASD. Normative data were previously collected for a group of children and adolescents, and a secondary aim of this study was to compare the present adult data set to the historical child/adolescent data set.

Methods

This was a retrospective observational study that utilized SSS collected between 2021 and 2023. Survey response data were collected on 89 adults with intellectual disability and ASD, ages 22 to 66. Normative data were generated and explored and then compared to the historic child/adolescent sample.

Results

The average “Ritual-related” subscale score was significantly higher and the “Pleasant Events” subscale score was significantly lower compared to all other average subscale scores in the overall adult group. There were very few differences in the average subscale, average total, or raw total scores by age group or autism diagnosis status. Survey items frequently scored as high or low stress were consistent with these results. In comparing younger and older participant data, significant differences were found in average subscale scores in a number of areas, mainly with higher scores for the adult sample.

Conclusions

For adults, high stress often stems from events related to ritualized behavior, and events that are pleasant are typically endorsed as low stress for both adult and child samples. Stress levels appear to peak in early adulthood and then slowly diminish. There are significant differences between the child and adult samples, but social and environmental changes since the SSS was created in 2001 suggest the need for separate and revised versions of the survey.