Compromised Quality of Life in Autism Spectrum Disorders. A Case-Controlled Long-Term Follow-up Study, Comparing Young High-Functioning Adults with Autism Spectrum Disorders with Adults with Other Psychiatric Disorders Diagnosed in Childhood

Background: Children with autism spectrum disorders (ASD) are characterized by marked impairments in social interaction and communication, and these deficiencies increasingly hamper daily life functioning as demands for social relationships and independent living become larger and more prominent when growing older. Reviews of quality of life (QoL) in adulthood indicate that the prognosis of ASD is generally poor; a minority of individuals with ASD live independently, few individuals have social and intimate relationships, and education and employment levels are low, even when general intelligence is within the normal range. Since ASD is a condition in which there is a profound impairment in social adaptation in adulthood, it can be expected that the QoL of individuals with ASD is worse compared to the QoL of individuals with other child psychiatric disorders. This study is about specificity, i.e., about comparison of QoL between young adult psychiatric patients that were diagnosed in childhood or adolescence.

Objectives: Long term outcome in childhood ASD was evaluated by studying QoL in young adulthood in comparison to the outcome of other child psychiatric disorders.

Methods: In this follow-up study, objective and subjective QoL of 169 high-functioning adults with ASD (19 to 30 years) was contrasted with QoL data of age matched adults diagnosed with attention deficit/hyperactivity disorder (N=85), disruptive behaviour disorders (N=83), and affective disorders (N=85) diagnosed during childhood. The mean follow-up period of the ASD patients was 13.9 years. Objective QoL included marital status, living arrangements, level of education, employment, and usage of mental health care. Subjective QoL included satisfaction concerning living arrangements, work or education, physical condition, partner relationship, social relationships, state of mind, and future perspective.  

Results: QoL was more compromised in adults diagnosed with ASD in childhood than in adults with other psychiatric disorders in childhood. A relatively large proportion of the adults with ASD were single, few lived with a partner or a family and many of them were institutionalized. Adults with ASD had lower educational levels, relatively few had paid employment and many were social security recipients, as compared to the other psychiatric patients. In case the adults with ASD used medication, 47% used anti-psychotics. Regarding the subjective QoL, the adults with ASD were less satisfied about their work or education, partner relationship, and future perspective than the other groups. Even when highly educated adults with ASD were compared to highly educated adults diagnosed with other childhood disorders, the QoL appeared to be more disadvantageous in adults with ASD.  

Conclusions: Many studies have shown that QoL is challenged in psychiatric patients, but findings of this study indicate that young high-functioning adults diagnosed with ASD in childhood are at relatively high risk for poor QoL compared to other childhood psychiatric disorders.