Older Age Autism Research: A Rapidly Growing Field, but Still a Long Way to Go

Background: There is a paucity of research involving older autistic people, as highlighted in a number of systematic reviews. However, it is less clear whether this is changing, and what the trends might be in research on autism in later life. Methods: We conducted a broad review of the literature by examining the number of results from a search in three databases (PubMed, Embase, PsycINFO) across four age groups: childhood, adolescence, adulthood, and older age. We also examined the abstracts of all the included articles for the older age group and categorized them under broad themes. Results: Our database search identified 145 unique articles on autism in older age, with an additional 67 found by the authors (hence, the total number of articles in this review is 212). Since 2012, we found a 392% increase in research with older autistic people, versus 196% increase for childhood/early life, 253% for adolescence, and 264% for adult research. We identify 2012 as a point at which, year-on-year, older age autism research started increasing, with the most commonly researched areas being cognition, the brain, and genetics. However, older adult research only accounted for 0.4% of published autism studies over the past decade. Conclusions: This increase reflects a positive change in the research landscape, although research with children continues to dominate. We also note the difficulty of identifying papers relevant to older age autism research, and propose that a new keyword could be created to increase the visibility and accessibility of research in this steadily growing area. Autistic children grow into autistic adults, and autistic adults grow old. However, there is very little research about older autistic people. This is important so we know how to support older autistic people. We wanted to examine how autism research activity has changed over time with respect to four life stages: infancy, childhood and adolescence, adulthood, and older age. We then more closely looked at older age autism research to point out important gaps where more research is needed. We conducted a broad review of the literature on autism and described what life stages are studied in published research. We looked at how the amount of research on different life stages has changed over time. We further examined studies focused on older age and summarized the topics covered. Our review estimates that only 0.4% of autism-related publications over the past decade are about older autistic people. We identify 2012 as a turning point since when the number of studies has markedly increased year-on-year. Encouragingly, the percentage increase in autism research over the past decade is greater for older age research (392% rise) than childhood/early life (196%), adolescence (253%), or adulthood research (264%). We suggest that there are many research areas that need addressing. Specifically, more research is needed on social isolation and the practicalities of living arrangements for older autistic people, as well as more studies including older autistic adults with intellectual disability. We do not think that our findings will immediately benefit the lives of autistic people. However, we do hope to draw attention to topics where research is needed to improve the lives of autistic older people. We also suggest that a new keyword could be created that researchers could then include in their articles to help autistic people and those interested in autism and aging find relevant writings.