Life Quality and Challenges in Taiwanese Young Adults with Autism Spectrum Disorders: Combined Quantitative and Qualitative Approaches

Background:

As the incidence of autism spectrum disorder (ASD) increases in Taiwan, the difficulties in the real life that adults with ASD face become a critical issue. Many of high functioning ASD stay home unemployed, or hardly maintain a regular job to earn their living. There is a significant gap between needs and services provided in adulthood. How the young adults with ASD view their quality of life (QoL) remains unclear, not to say the determinants for their QoL. Moreover, the concerns and worries of their parents, who are usually the main caregivers of Taiwanese young adults with ASD, are rarely investigated.

Objectives:

This study aims to quantitatively examine the subjective QoL in Taiwanese young adults with ASD, and investigate the determinants for different domains of QoL. Meanwhile, a qualitative approach was taken to explore the parents’ concerns as the major life challenges of these young adults.

Methods:

The study comprised 65 young adults with ASD (mean age, 26.9 years, SD, 7.3; males 53, 81.5%). We used Taiwanese version of World Health Organization Quality of Life-BREF to measure QoL. Four domains of QoL were compared with 61 typically-developing controls, including physical, psychological, social, and environment. To identify the correlates of four QoL domains, we assessed IQ, personality trait, family support, anxiety/depression, autistic symptoms, and sensory symptoms by various questionnaires, and assessed their relationships with QoL by correlation analyses and model selection. On the other hand, focus groups were held to explore the difficulties and challenges of adults with ASD from parents’ view of points.

Results:

Adults with ASD reported lower QoL in four domains of QoL compared to controls. In correlation analyses, we found that IQ was not correlated with any of QoL domains, whereas, autistic symptoms, harm avoidance, and family support were significantly associated with different domains of QoL. In model selection, males was associated with lower QoL. Poor support from father and depressive symptoms were associated with several domains of QoL including physical and psychological domains. The severity of autistic symptoms was associated with the social domain. Besides, anxiety and sensory symptoms were associated with the environment domain of QoL. As for parents’ focus groups, the major concerns are four aspects, including (1) independence (e.g., basic life skills, self-care, self-sufficient, self-satisfaction, etc.), (2) negative emotions (e.g., sensitive to negative feedback, undifferentiated and prolonged negative emotions, etc.), (3) repetitive/stereotyped behaviors and rituals, (4) others (e.g., sexual needs, being taken advantage of, too eager for making friends, potential legal problems, etc). For adults with higher function, interviewing for a job and maintaining the job are usually a significant challenge.

Conclusions:

Our results suggest lower QoL in Taiwanese adults with ASD and its potential correlates, providing a hope that treating co-occurred symptoms may influence their QoL. Parents’ concerns point out the needs of specific resources and services to assist independence, to coach coping strategy for negative emotions, and to establish an understanding environment for them to live in a happier and meaningful way.