The International Society for Autism Research's mission is to promote and disseminate the highest-quality autism research globally. Our goal is to ensure that people with profound autism are included in and benefit from this research.
For the first time, profound autism was represented in posters, presentations, and panels. PAA was on the ground at the meeting, ensuring that our population continued to be part of the ongoing conversations.
Scenes from INSAR 2024
Less than one week before my mom and I were set to travel across the world from Boston, Massachusetts to Melbourne, Australia for the International Society for Autism Research (INSAR) Annual Meeting, my mom sent me several pictures of my brother Jack’s tongue, which was so mangled that it looked like it was practically split in two.
Jack was diagnosed with autism at age two, and he fits under the category “profound autism,” which was recognized by the CDC just last year. He is largely nonverbal and will require 24/7 one-on-one support likely for the rest of his life. The night before my college graduation in 2022, at a dinner with much of our extended family, Jack suddenly bit down on his tongue hard. Blood poured onto the plate in front of him. My mom and I, sitting next to him, touched his arms on either side and begged him to stop, but he held this bite for about ten seconds.
After this first incident, the biting only increased in frequency. At one point that summer, Jack was averaging about 60 bites per day. Desperate for answers, my mom ended up taking him to the emergency room at Massachusetts General Hospital. They ended up leaving one of the best hospitals in the world with not much more hope of finding a solution. Research on intense, complex behaviors like this one is scarce. No one seems to really know how to treat it.
Right around the time this all started, my mom and I attended our first INSAR in Austin. I remember walking through the aisles of posters and not really seeing my brother represented anywhere. I certainly didn’t see anything substantial about self-injurious behaviors, the greatest mystery in our lives at the time (and still today, honestly). I was disappointed that a majority of the research at the premier autism research conference didn’t seem to apply to my brother at all.
This year was different. This year, profound autism was specifically listed as a focus of the conference. There were about fifteen posters total in the new “high support needs or profound autism” category. For the first time, I saw researchers who were sincerely trying to include individuals with profound autism in their research. There were panel sessions on topics like self-injurious behaviors and communication, which are major issues in the world of profound autism.
The absolute highlight of the conference for me was the keynote by Dr. Matthew Siegel. He truly validated the experiences of those of us whose families are affected by profound autism in a way that has never been done at INSAR before.
Something that Dr. Siegel mentioned in his keynote that reflected well what I saw at the conference was the need for a clear research definition for profound autism. In the high support needs/profound autism poster section, it was clear that each study had its own sort of definition of what this meant. Some measured IQ, some measured verbal ability, and others didn’t report how they determined “profound autism” or “high support needs” at all. Even among these studies, there were some that clearly didn’t include people like Jack.
But people like Jack need to be included in research. According to Dr. Siegel, 42% of ASD studies listed on ClinicalTrials.gov in 2020-2021 either explicitly or implicitly excluded individuals with a co-occurring intellectual disability. 6% of individuals with autism in studies published in 2016 had an IQ <70. While people like Jack are excluded from research, we get no closer to answers for behaviors like his debilitating tongue biting, or why some individuals with profound autism die in their sleep with no explanation, as has happened with the children of several of my mom’s friends. These individuals are left to suffer with no hope for solutions. A clear research definition would help guide researchers to include these individuals in their research and hopefully lead to some answers.
While I saw several qualitative studies on profound autism, I didn’t see as much robust neuroimaging research, for example, on this population. However, the conversations that I had with researchers when I (of course) asked them about their study population and who was included gave me hope that researchers are trying to think of solutions to include these people.
I had a discussion with one recent college graduate from Missouri who was presenting a poster on the functional connectivity of the amygdala and how it relates to repetitive behavior in ASD. While their group didn’t include individuals with profound autism in their sample, we discussed how there are potential solutions to this issue, such as choosing MRI scan sequences in which the quality of the data wouldn’t be as compromised if the participant was moving a little bit rather than staying completely still the whole time. Conversations like this one give me hope that researchers will be motivated to make these kinds of changes that could hopefully allow for greater representation of individuals with profound autism in research in the future.
As Dr. Siegel put it, it really feels like we are at a crossroads. We have much more knowledge about what profound autism looks like now, but now we have to decide where to head with all of this information. The acknowledgment of profound autism was there this year, and I hope that in the future, we will see more robust research that includes this population. We have a long way to go in making progress to improve the lives of individuals with profound autism, but we have to start somewhere. This feels like the start, and I’m excited to see where it goes.
As someone who is about to begin medical school, I truly could not imagine a more exciting time to be entering the field. I am so appreciative of the leaders in this field who have started to pave the way for positive change, and I can’t wait to follow in their footsteps. Seeing the direction things are going, I feel like my lifelong dream of improving the lives of people like my brother might just come true.