Conference aims to improve diagnosis and support for women and girls with autism
By Christine Lyons
Autism Spectrum Disorder (ASD) in young women and girls is significantly under-diagnosed and under-researched, and it is a problem which has long-term negative implications for women with ASD. Top researchers will be discussing approaches at the Autism Community Training 14th Annual Focus on Research Conference at SFU’s Vancouver campus on April 5 and 6, 2018.
While researchers are beginning to recognize that autism affects women and girls differently, delayed diagnosis can reduce access to services and threaten mental health and employment prospects over the long-term. SFU psychologist and director of the Autism & Developmental Disorders Lab, Dr. Grace Iarocci is a co-organizer of the conference and says gender bias and a historical lack of research are a big part of the problem.
“ASD is considered a childhood disorder that affects primarily boys, so professionals and parents do not typically think of ASD when they see delayed or unusual behaviour in girls. They are more likely to think that the problem is emotional in nature, for example anxiety or depression.”
“When red flags or ASD information is provided to the public,”
Iarocci adds, “they typically focus on male symptoms, for example
repetitive behaviours or restricted interests in trains.”
These problems of gender bias are compounded by a cyclical problem in the research gap. Most professionals are trained to assess and treat ASD with tools that were developed for boys, but clinicians like Iarocci are seeing that the condition presents differently in girls and women. Iarocci says researchers need to revise the diagnostic criteria but do not have enough existing research to warrant such a revision.
“We essentially have an issue of circularity; we cannot explain why fewer females are diagnosed with ASD, and yet, if diagnostic methods are male-biased then to use a diagnosed sample may be limiting the research group to only those who meet the male criteria.“
Iarocci and her team of researchers at the Autism & Developmental Disorders Lab are doing their part to address the problem by collecting data every year through their annual summer camp event.
“We do not yet have findings to report on girls but are beginning to explore hypotheses. The biggest challenge is the small sample of females with ASD. However, as we collect data every year through our annual summer camp event, we may be able to have a substantial sample to pool.”
Another alternative to widen the sample pool, she adds, would be to “explore assessing females with ASD who score high based on screening instruments rather than only those with a formal diagnosis.”
The ACT Research Conference is also working to address these gaps and working to set priorities for future research, bringing together internationally recognized autism researchers with clinicians, women with ASD, and community-based professionals for a range of keynote lectures, panel presentations, and a presentation on the Canadian government’s first national autism prevalence survey.
Keynote speakers include Dr. William Mandy (University College London, UK) and Dr. Rene Jamison (University of Kansas Medical Center) and panelists include Iris Gray, a freelance transcriber and editor who was diagnosed with ASD in 2005; Vivian Ly, Executive Director of the grassroots organization Canadian Autistics United; Kristy Tremblay, a Kamloops mother who was recently diagnosed with ASD; and Stephanie Berinstein, an occupational therapist with Gastown Vocational Services.
Iarocci herself will be moderating a panel in which mothers with ASD will discuss their experiences and challenges. While including conference participants and panelists with ASD is not new to the ACT’s focus, Iarocci says it is an “essential aspect” of designing and implementing research priorities. “We should be including females with ASD at the very early stages of research planning. We see this conference as initiating a discussion that will stimulate thought and hopefully set priorities for research on females with ASD in BC and beyond.”