Posted by Autism Speaks Chief Science Officer Geri Dawson, Ph.D.
I’ve just spent an invigorating three days at the annual International Meeting for Autism Research (IMFAR) in Toronto. I would like to share a few observations with you. The meeting was so diverse and busy – with close to 2,000 participants. I couldn’t begin to attend all the sessions or absorb the great amount of information being presented. As a result, my observations will be skewed toward the events I attended.
To begin, I was impressed by the sheer amount of research presented. Having served as program chair for some early IMFAR meetings, I can remember how my graduate students and I organized all the presented abstracts by placing them on one table and grouping them. In the decade since those humble beginnings, the research has increased exponentially.
Equally impressive was the scope of the research presented. It ranged from basic science to potential new treatments to studies on increasing access to services in our communities. Autism Speaks played a leadership role across this continuum. Our science staff led a special interest group on basic biology and brain tissue research. We sponsored a meeting of environmental epidemiologists. We hosted a daylong conference focused on developing early interventions for infants and toddlers at risk for autism. This is to name just a few.
Throughout the week, we’ve been sharing some of the meeting’s most exciting reports in our blogs and science news stories. Just as important is the opportunity IMFAR provides for researchers to share ideas and methods and to develop and deepen their collaborations.
I was particularly impressed with the large number of young people who participated. Looking around at any event, a large proportion of the attendees were graduate students and postdoctoral fellows. They were eager to learn, meet the field’s experts and share their own early research findings. I met an abundance of young scientists from a wide range of fields – from neuroscience and medicine to clinical psychology and public health.
Autism Speaks sponsored many of these bright young scientists. We celebrated them at our annual reception for our Weatherstone Predoctoral Fellowship Program. This program funds promising studies that can launch the careers of autism researchers. It also helps create a community of young scholars who will become the next generation of experts in the field. During the reception, the level of excitement in the room was palpable, as each student talked about the work he or she is doing.
The highlight of the event, however, was when I read aloud a letter from Cheryl Weatherstone Vance, the daughter of the late Sir Dennis Weatherstone, for whom the fellowships are named. She likened the young scientists to superheroes from the “The Avengers.” She encouraged them to work together as a team to change the world for people with autism. She described how she has fought for her own son and described the progress he is making. At the end of her letter, there wasn’t a dry eye in the room. We all left inspired.
I was also extremely pleased to see the truly global reach of IMFAR as scientists from around the world participated and presented their research. As part of Autism Speaks Global Autism Public Health initiative, we hosted a dinner meeting that featured scientists from Ethiopia, India, Albania, Taiwan and the U.S. They talked about Autism Speaks projects designed to develop innovative ways to increase access to early detection and services in very low resource communities. We are motivated in this effort by the fact that at least 50 percent of persons with autism in the U.S. and 85 percent in developing countries receive inadequate services.
Finally, I was especially heartened to see that the stakeholder community – especially parents and individuals on the autism spectrum – is now a key part of IMFAR. They influenced the selection of presentations. They participated on committees and in research. They also played an active role in reporting and blogging on the meeting.
As I was walking down the hall the second day, a Canadian mother of two children on the spectrum approached me. She related her story about how her sons had struggled with terrible gastrointestinal problems in their early years. She told me about her frequent trips to the doctor, who dismissed her concerns. The story got better, however. She explained that the same doctor who initially downplayed her concerns now is the GI doctor who is part of the multi-disciplinary autism treatment team at Autism Speaks Autism Treatment Network site in Alberta. This reminded me how important it is to listen to what parents and people on the spectrum are telling us. Their concerns should be a guiding force in both our science and clinical care.
At the end of most scientific presentations, when the Q & A period began, the first question usually came from an adult on the spectrum. Often, they asked about the direct relevance of the findings for people affected by autism today. For good reason, this year’s newly established “Advocate Award” went to Temple Grandin. She quickly thanked the committee for the award but then spent most of her acceptance speech talking about the need for more research on the sensory issues that significantly affect the lives of many people with autism spectrum disorder.
The presence, participation and feedback from self-advocates and parents will undoubtedly have real influence on the research that is being funded and conducted in the year ahead. It will help ensure that the time and effort being spent has real meaning for people both today and in the future. I was pleased that Autism Speaks sponsored a community luncheon for families and people on the spectrum where scientists and stakeholders could share ideas and form relationships.
I left the meeting feeling inspired and buzzing with new ideas. But mostly I felt impatient. When I look back over the decade since IMFAR began, I clearly see the tremendous progress being made. Yet there is so much that needs to be done. I hope that IMFAR will inspire all who attended to work faster and harder on research that will improve the lives of those living with autism today and transform the lives of those affected by autism in the future.