Fabric to the Facts. Understanding Social Problems and Co-Occurring Conditions in Young Adults with Autism Spectrum Disorder

Background:

As children with autism spectrum disorder (ASD) become adults, adaptive functioning usually improves, but social problems seem to remain or even increase, and comorbid psychiatric disorders are likely to occur. Though current research seeks better understanding of these problems, our knowledge remains theory-driven and is often not directly clinically applicable, leaving the group in need.

Objectives:

This study proposes a shift of perspective, including lived experiences from adults with ASD instead of outside perceptions from researchers, to get an insider understanding of the problem and make recommendations on how to improve current clinical practice by better targeting existing initiatives and interventions.

Methods:

Fourteen young adults with ASD (ages 17-26) were interviewed using a semi-structured interview guide that addressed topics that were previously found to be the most salient developmental themes for typically developing young adults. Their contents of these interviews were transcribed and analysed using Interpretative Phenomenological Analysis. Special precautions were taken to avoid interpretational biases by member-checking the validity of our findings with participants, and including other researchers, so that inter-rater reliability could be checked.

Results:

Participants experienced continued social problems, that had become more covert as they had learned to avoid visible social errors. Tremendous effort was reported to be put into adjusting to social rules and expectations of others and hiding symptoms of ASD. Exhaustion, inhibitory problems, difficulties imagining the future and inflexible thinking were mentioned as the biggest causes of lowered well-being. Interviewees also discussed their own methods of coping, such as creatively expressing emotions or physical exercise, highlighting potentially helpful strategies to explore that are currently not included in general guidelines for clinical practice.

Conclusions:

These findings open new directions for research to follow regarding the development of social skills of children with ASD as they grow into adults, as well as regarding clinical interventions based on self-advocacy of the targeted patient group.