This past Saturday (5/4) at the annual meeting of the International Society for Autism Research (INSAR), Dr. Josephine Blagrave (@blagraveaj), Dr. Emily Bremer (@Emily_Bremer), and myself (@amcdphd) led the first meeting of the Special Interest Group on “Building on Existing Strengths and Lessening Current Barriers to Physical Activity for Autistic Individuals Across the Lifespan” in Montréal, Canada with the assistance of Dena Gassner. Despite the meeting being on the last day of the conference, starting at 7:15 in the morning, and being scheduled against some other very pertinent and exciting other SIG meetings, we were welcomed by a very enthusiastic mix of researchers, stakeholders, and students.
With an interest in physical activity and health that is “non-biological”, INSAR can often have a paucity of presentations that focus on this area of research. Rarely discussed in the panels, keynotes, or oral presentations, there are often great presentation sprinkled throughout the program typically as posters; you just have to search hard to find them. After several years of having multiple conversation with meeting attendees on the importance and the need for physical activity research to be presented at INSAR, Dr. Blagrave and I decided to attempt to form a SIG in order to get everyone into one room to highlight areas of need and importance, as well as amplify the work that people are doing around the globe on physical activity in populations on the autism spectrum.
In conducting this SIG meeting—with the intention of continuing for another 2 years—we started by presenting broad information on the importance of physical activity with current evidence of engagement, the barriers and facilitators currently presented in the literature, and a grounded theory of PA engagement (see Dr. Blagrave and I’s other INSAR presentation about this by clicking this link and selecting INSAR 2019).
We also, with the help of Dena Gassner, presented one particular case about the immense amount complexity that exists when trying to be physical activity for individuals on the autism spectrum. In the past many years, autistic individuals have been treated as a homogenous group when attempting to increase physical activity or work on motor skill behavior—compared to neurotypical or typically developing groups as one autistic block—despite all researchers recognizing the heterogeneity of the condition itself and citing that heterogeneity as a limitation of the studies findings. Too often, when working with children or adolescents on the autism spectrum (psst: there has only recently been work with adults), children were selectively included to limit co-occuring conditions, such as intellectual disability, epilepsy, etc. This was done with the intention of creating a more clinically sound finding on the treatments impact on “autism”.
Yet, as we are finding out, this is not the case with the majority of individuals on the autism spectrum. So, by excluding those with co-occuring conditions, it is likely that researchers were excluding the vast majority of autistic individuals—making finding even less generalizable. Dena, in presenting on Ehlers-Danlos Syndrome, presented the audience with one example of the need for individualized programs for autistic individuals and the need for compassion and alternative thinking when attempting to get individuals more active. Additionally, we must consider, as researchers and service providers, that when we are “treating” someone with a diagnosis of autism that it may be the other conditions that we need to address.
After presenting the group with a “quick” overview of the breadth of information on this area and the existing gaps, we presented the group with several—intentionally broad—questions to start the conversation about the interconnectedness of physical activity, movement, and health in autistic populations. We collected responses from each working group to create the foundation for a white paper on physical activity, the barriers that may exist, activities that could be of interest, and some examples of places that are “getting it right” or at least trying to—with the understanding that we may not every know the perfect solution, but if we know what works well, we don’t have to reinvent the wheel every time.
Additionally, we collected contact information from the attendees to create an ongoing dialog and to disseminate SIG group information. If you would like to be apart of the conversation, please add your email:
For a copy of the presentation slides, click this link. Dr. Blagrave, Dr. Bremer, and myself will be working over the coming weeks to work through the data we collected during the SIG meeting; while also keeping interested individuals updated and a part of this important ongoing conversation.
Hope to see you all in person, next year in Seattle.