Autistic adults in China and the Netherlands: Proxy-reported community integration and life satisfaction

Abstract

Despite an estimated population of 10 million autistic individuals, there is still a significant lack of research on autistic adults in China. This study aimed to investigate the extent and factors influencing community integration (employment, independent living and friendship) and life satisfaction among young autistic adults in China, and compare them with an autistic adult sample with similar characteristics (58%–63% with a reported IQ below 70) from the Netherlands. Data were collected via online surveys to the caregivers of 99 young autistic adults (18–30 years) in China and 109 in the Netherlands, because the autistic adults were not able to fill in the survey independently. Autistic adults in both countries were reported to have limited community integration, as indicated by low rates of employment, limited independent living and few close friendships. Proxy-reported life satisfaction of autistic adults seemed relatively low in both countries, but even lower in Chinese adults, possibly due to limited awareness and acceptance of autism in China, inadequate or inaccessible support services, higher parenting stress, or general cross-country differences in well-being. In general, the findings indicate a common challenge faced by autistic adults with high support needs in both China and the Netherlands. Lay abstract Even though there are about 10 million Chinese autistic individuals, we know little about autistic adults in China. This study examined how well young autistic adults in China integrate into their communities (such as having a job, living independently and having friends) and how satisfied they are with their lives as reported by their caregivers. We compared them to autistic adults with similar characteristics (such as high support needs) from the Netherlands. We included 99 autistic adults in China and 109 in the Netherlands (18–30 years). In both countries, autistic adults were reported to have a hard time fitting into their communities. They often had no work, did not live on their own and had few close friends. Also, in both countries, caregivers reported that autistic adults felt low satisfaction with their life. Chinese adults were less satisfied with their life than Dutch adults, as indicated by their caregivers. This could be because of a lack of support for autistic adults in China, higher parental stress in Chinese caregivers, or general cross-country differences in happiness. Only in the Dutch group, younger compared with older adults fitted better into their communities, and adults without additional psychiatric conditions were reported to have higher life satisfaction. Country was a significant predictor of independent living only, with Dutch participants more likely living in care facilities than Chinese participants. In conclusion, our study shows that autistic adults with high support needs generally face similar challenges in both China and the Netherlands.