Examining the Experience of Adults Receiving an Autism Spectrum Diagnosis and Their Later Well-Being.

Background: Relatively little is known about autism spectrum disorder (ASD) across adulthood, or the impact of receiving a diagnosis as an adult. High rates of mood disorders have been reported among autistic adults, and individuals report poor well-being and sleep quality.

Objectives: To follow-up adults who had received an ASD diagnosis to examine whether receiving the diagnosis had been positive and to explore factors associated with well-being.

Methods: Individuals diagnosed with ASD as adults were invited to participate. Of the adults who had consented to be contacted, 44 completed the study. Individuals responded between 4-80 months (mean=32 months) after receiving an ASD diagnosis.
Individuals completed questionnaires about receiving a diagnosis, autism traits (Autism Quotient, AQ), quality of life (World Health Organization Quality of Life scale, WHOQoL), mental well-being (Warwick-Edinburgh Mental Well-being Scale, WEMWBS) and sleep quality (Pittsburgh Sleep Quality Index, PSQI).
Forty age and sex matched non-autistic neurotypical adults (NA) were recruited from the community as a comparison group. NA completed the same measures; the questions about diagnosis and the AQ were omitted.

Results: Impact of receiving a diagnosis. ASD adults were asked about the impact of receiving a diagnosis generally, on their own self-understanding, and on the understanding of others. Individuals were asked if they were aware of support they could access and whether this was what they had expected. Overall individuals felt that receiving a diagnosis had been a positive experience with 72.1% endorsing that it had generally made things better. In terms of post-diagnosis support, overall responses were negative. Most individuals (72.7%) were not clear what (if any) support they could access and 58.5% were not receiving the post-diagnosis support they had expected. See Table 1.

ASD traits and well-being. AQ scores correlated significantly and negatively with WHOQoL subscales (Physical, Psychological, Social, Environmental) and the WEMWBS, indicating poorer well-being with increasing self-report autistic traits. Poorer sleep quality was associated with higher self-report ASD traits, but this did not reach significance. Highly significant associations were observed between sleep quality and all WHOQoL subscales and the WEMWBS.

Group Differences, ASD-NA. The ASD group reported significantly poorer quality of life on all WHOQoL subscales, and on the WEMWBS. Individuals with ASD reported significantly poorer sleep quality than NA.

Conclusions: For most adults receiving an ASD diagnosis, the effect was generally positive, however post-diagnosis support and access to services was not satisfactory. ASD traits were strongly associated with poorer quality of life, mental well-being and sleep quality. Poor sleep quality was strongly associated with poorer quality of life and mental well-being; however the causal directions of these associations are unclear and require further study. Findings suggest that despite growing awareness that autistic adults may be at risk for poor quality of life and mental well-being compared to NA, a gap between awareness and intervention remains. Better monitoring of autistic adults to provide treatment (should poor mental well-being reach clinically significant levels) is required, as is the development of ASD specific interventions.