What you need to know
A significantly greater proportion of girls and women with Autism Spectrum Disorder (ASD) use psychiatry and emergency department services as compared to boys and men with ASD even though overall clinical needs and service patterns are similar. More research is needed to ensure girls and women are receiving appropriate care.
What is this research about?
Girls and women in the general population present with a distinct profile of clinical needs and use more health services compared to boys and men, but we know very little about the service use patterns of girls and women with ASD. The purpose of this study was to describe the clinical needs and health service use patterns of adolescent girls and women with ASD and explore differences with boys and men with ASD.
What did the researchers do?
The researchers surveyed parents of 61 female and 223 male adolescents and adults with ASD from across Ontario. Participants were recruited from ASD support agencies and advocacy groups, and from email lists associated with these organizations.
Individuals with ASD ranged in age from 12 to 56 years old (average age was 18 years old). Parents completed an initial survey about their demographic information, their child’s health, and their level of caregiver strain. Then, parents completed five brief bi-monthly surveys and a longer final survey 12 to 18 months later about their child’s health service use. All participants had the option of completing their surveys online, by telephone interview, or on paper; most preferred online surveys.
What did the researchers find?
The researchers found many adolescent girls and women with ASD had co-occurring mental and physical conditions and their parents reported high levels of caregiver strain. Parents of women with ASD reported higher caregiver strain than parents of men with ASD. Both males and females frequently used multiple services, particularly adolescent girls and women with intellectual disability.
Overall, few differences in service use were found between males and females, although a significantly greater proportion of girls (54.5%) and women (64.3%)used psychiatry services as compared to boys (29%) and men (41.4%). More girls (39.4%) and women (46.4%) also went to the emergency department as compared to boys (21.8%) and men (23.2%).The researchers note that their sample size was small and relied on parent report. Future research with administrative data is needed.
How can you use this research?
Girls and women with ASD share many of the same high clinical needs and patterns of service use as boys and men with ASD, yet they remain underrepresented in research. Mental health services are clearly an area of significant need for girls and women with ASD and the increased use of psychiatry and emergency department services is concerning. It is important for future research to continue to clarify the health service experiences of girls and women with ASD to ensure they are receiving appropriate support.
About the Researchers
Yona Lunsky, Ph.D., C.Psych, is a clinician scientist in the Adult Neurodevelopmental Service at the Centre for Addiction and Mental Health and the University of Toronto in Toronto, Ontario.
Jonathan Weiss, Ph.D., C.Psych, is an Associate Professor, and Ami Tint, MA, graduate student, are associated with the department of psychology at York University in Toronto, Ontario.
Citation
Tint, A., Weiss, J. A., & Lunsky, Y. (Online First). Identifying the clinical needs and patterns of health service use of adolescent girls and women with autism spectrum disorder. Autism Research.
This research summary was written by Ami Tint. This research is funded by the Canadian Institutes of Health Research (MOP a102677). Dr. Weiss was supported by the Chair in ASD Treatment and Care Research (Canadian Institutes of Health Research RN162466-284208 in partnership with Autism Speaks Canada, the Canadian Autism Spectrum Disorders Alliance, Health Canada, Kids Brain Health Network (formerly NeuroDevNet) and the Sinneave Family Foundation. This research summary, along with other summaries, can be found at asdmentalhealth.ca/research-summaries Reproduced with the permission of Dr. Jonathan Weiss (York University). This research summary was developed with funding from the Chair in ASD Treatment and Care Research. The Chair was funded by the Canadian Institutes of Health Research in partnership with Autism Speaks Canada, the Canadian Autism Spectrum Disorders Alliance, Health Canada, Kids Brain Health Network (formerly NeuroDevNet) and the Sinneave Family Foundation. This information appeared originally in the Autism Mental Health Blog (https://asdmentalhealth.blog.yorku.ca).