100 years from now: comparing parental perspectives about supports for adults with autism in the USA and China

Abstract

Purpose Findings from a comparative qualitative study with parents in the USA and China increase the understanding of experiences of adults with autism in both countries. Design/methodology/approach Semi-Structured interviews were conducted with families in the USA and in China. In total, 18 families participated in the study – 7 in the USA, 11 in China. Findings Analysis of the comparative data led to the emergence of three overarching themes, expressing both similarities and differences in experiences: 1) transition to adult services plays out differently in the two nations, 2) parent advocacy and efforts in supporting and securing services for their children are strong in both countries but are also defined by the variability in access to services and 3) due to the scarcity of adult services in their country, Chinese parents express significantly more worries about their own aging and mortality as compared with USA parents. Research limitations/implications Practical implications and directions for future research are discussed. Originality/value By examining the experiences of families of adults with autism in the USA and China, the research reveals themes that would not be visible in a single-nation study.

“…in the middle of nowhere…” Access to, and quality of, services for autistic adults from parents’ perspectives: a qualitative study

“…These, then, lead to fatigue in the parents and a deterioration in their psychological well-being. This is not a phenomenon specific to Hungary, similar systemic problems are highlighted in the international literature ( 14 , 16 , 26 , 36 ).…”

“…These studies come from different countries and service systems, but four groups of factors seem to be important across these. Place of residence is a key socio-economic determinant, as geographically uneven service availability strongly influences access to appropriate support and care ( 16 – 19 ). Secondly, family resources are also a crucial factor, as often only (expensive) privately paid services are available for adults.…”

“…Secondly, family resources are also a crucial factor, as often only (expensive) privately paid services are available for adults. Managing access and traveling to services can also be a significant burden ( 8 , 9 , 16 , 19 , 20 ). Thirdly, individual characteristics are a factor of access, as services for adults without co-occuring intellectual disability (ID) and complex communication needs (CCN) or with challenging behaviors are especially sparse ( 9 , 19 , 21 ).…”

“…Thirdly, individual characteristics are a factor of access, as services for adults without co-occuring intellectual disability (ID) and complex communication needs (CCN) or with challenging behaviors are especially sparse ( 9 , 19 , 21 ). Finally, a very important factor is the parents’ ability to gather information on services and activities, by mobilizing their own resources ( 8 , 16 , 22 – 24 ). Parents seem to base their service-related decisions mainly on the opinions of family members, acquaintances, parent organizations, and on information provided by the media and the internet, rather than on professional resources ( 10 , 25 ).…”

“…Several factors determine families’ decisions on, and evaluation of, available services. Parental perspective often shows that families have no real choice, as there are no or just very few services available ( 8 , 9 , 16 , 23 , 24 , 26 ), which leads to a decrease in parental well-being ( 14 ). Where choice is available, both parental decisions on, and satisfaction with, services are determined by (a) whether there is collaboration and mutual communication between parents and professionals ( 8 , 23 , 27 ); (b) whether the parent perceives the client group size appropriate; (c) whether the professionals are adequately trained and experienced ( 8 , 27 ); and (d) whether autism-specific programs and methodologies are available ( 8 , 27 ).…”