As a parent, university faculty member and autism spectrum disorder (ASD) researcher, I have been to many conferences that focus on those impacted by ASD. When I think of my favorite and most informative, The International Society for Autism Research (INSAR), formally International Meeting for Autism Research (IMFAR) is always at the top of my list. Created in 2001, the mission of INSAR is “to promote the highest quality research in order to improve the lives of people affected by autism.”
Each year, researchers from every discipline possible, converge to discuss, debate and disseminate their findings a wide range of research areas (see table 1). I have been attending the event since it’s more humble beginnings in 2004 in Sacramento when there were maybe 200 people and a handful of presentations. This year, the annual conference was held in Rotterdam, Netherlands May 9-12th, with thousands of researchers in attendance. With hundreds of research presentations throughout the course of the three days, and multiple poster sessions, covering all the research in this article would be impossible. This article will give you a glimpse of what is discussed, some things that had people buzzing, some of the key takeaways, and ways you can find more information. Included will be links when possible so you can dive down the research rabbit hole if you desire.
Thursday is the official start day of the meeting, but already many things had happened on Wednesday evening as people arrived for the event including a student trainee and cultural diversity workshop. There is always a lot of excitement the first few hours of the conference — new and old friends meeting, discussions about what will be the “hot topics” and the general buzz that comes with being around likeminded researchers. After welcoming comments made by Simon Barron-Cohen, Geraldine Dawson was the keynote speaker for morning one. If you are not familiar with her work, she is one of the original researchers/developers of the Early Start Denver Model and is currently a faculty member at Duke University specializing in early detection and intervention research for individuals with ASD. Her presentation focused on clinical trials evaluating new treatments for neuroplasticity and incorporating brain-based measures and quantitative, digital assessments of behavioral outcomes.
Our twins are 10 years old, so I am always anxiously looking toward the future to learn what is being done for teen and adults on the spectrum. The next sessions that I attended was Tapping the Talent: Strategies to Address the International Employment Problem in Autism. Four different presentations were given under this umbrella. Scott et al., (2018) discussed their research and found that individuals with ASD are less likely to have a full-time job and are more likely to be doing nothing vocationally (including volunteering) than both their other developmentally disabled peers and peers without disabilities, concluding, “it’s not just a public health problem, but a human rights issue.”
Employable Me, a show on ABC Australia was brought up during these talks. I had not heard of the show, but it follows individuals with neurodiverse conditions and highlights a strengths-based approach to finding jobs and staying employed that some of you may be interested in. Matt Lerner (2018) discussed his research findings regarding employment from the perspective of autistic adults and found that stigma’s, lack of information and training from employers and insufficient supports were the most common barriers to employment.
Friday morning began with a keynote presentation from Rosalind Picard titled How Emotion Technology Can Improve the Science of Autism. She is the founder of Affective Computing Research Group at the MIT Media Laboratory and founder of Affectiva. One of the things that stuck with me during her presentation was this statement: “Let’s stop teaching our kids to smile, to be happy and to smile is a much more complex feeling.” And her research backs up this statement — 90 percent of people demonstrate a true smile during times of frustration!
She works with autistic adults (I’m using identity first language intentionally here, and will talk more about this in a minute) in her research and began this line of research with the ASD community when one of her autistic friends told her, “You’re not reading our enormous stress and anxiety accurately.” For more information about her apps and company — including wearable devices that can accurately predict seizures and notify parents, please see the links at the end of this article.
One of my favorite experiences is always the Autism Community Stakeholders Luncheon. This event is overseen by John Elder Robison, one of the more vocal autistic adults in the research community who serves on many national and international advisory boards. This year, there was a big push by Autistica to send autistic adults to the conference, and for the first time, there was almost a 50/50 split between this population and parents — which made for interesting conversations surrounding research needs (parents would like more non-verbal research and autistic adults would like more mental health and adult needs).
Being present in rooms where two groups are coming together and trying to work is so important for perspective. One of the things I noticed is language when referring to the ASD community. Autistic adults would really prefer identity first language as they see autism as something that is part of them and not something they want cured, where some parents and professionals really prefer the use of people first language (person with…). I bring this up because I think it is important to understand both of these perspectives as I look at issues as both a researcher and a parent. There are many amazing ways to access the opinions of autistic adults, and one way I do this is through Twitter. You can follow specific individuals or groups, as well as search hashtags to find out more information (see box).
There were many more sessions throughout the afternoon and evening that I attended and the biggest take away I have from day 2 was this: mental health needs for autistic adults needs to be addressed. To be autistic as a sole diagnosis or to have depression, anxiety or other disabling conditions can be overwhelming. For so many autistic individuals, they are not just one diagnosis, but many of these conditions simultaneously, and so many can’t take it, and so many are committing suicide. The older population needs help, and we need to support these teens and adults who are begging for it, because soon our kids will be older and will need help.
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Saturday begins the last day of the conference, but the topics and intensity of researchers did not die down. Special interest topics that took place in the morning (sorry, nothing to report directly as I was jet lagged and tired) included promoting partnerships between advocacy groups and researchers to improve autism research, suicidality and autism and sexuality, romance and being autistic: learning from experience and needs of adolescents and adults (I’m honestly currently kicking myself for not skipping that morning shower and coffee and going to this as I type — what was I thinking?!).
I was present for the sessions on leveraging the strengths of people with ASD. This perspective is important because it helps create alliances, takes down communication barriers between community stakeholders, and helps reduce stigmas. When using this approach, individuals with ASD have higher self-esteem, are more assertive and have a voice in their own life. More information from the researchers who presented in this session can be found at the Karolinska Institutet.
A final session that some might find interesting: coding clubs. There are communities that are using the strengths-based approach to identify teens with ASD who are interested in coding and building after school and weekend programs for teens in a peer-based setting. Coderdojo is one of the curriculums that is used but this model could be used a variety of ways to integrate kids on the spectrum with their peers in a skills driven and positive way!
After many years in attendance it is promising to hear all sides of the autism community coming together. Mental health and adult outcomes research was heavily emphasized. INSAR is an amazing resource for parents that is often overlooked, and provides research summaries for parents with each of their journal additions. The next meetings for INSAR will be in Montreal (2019) and Seattle (2020). I hope this information inspires some of you to go and be a voice.
Table 1 – Research Areas at INSAR
- Adult Outcomes
- Medical, Cognitive
- Behavioral Animal Models
- Brain Function (fMRI, fcMRI, MRS, EEG, ERP, MEG)
- Brain Structure (MRI, neuropathology)
- Cognition: Attention, Learning, Memory, Communication and Language Diagnostic
- Behavioral & Intellectual Assessment
- Early Development (< 48 months)
- Family Issues and Stakeholder Experiences
- International and Cross-Cultural Perspectives
- Interventions – Non-pharmacologic – Preschool & Infant, Interventions
- Non-pharmacologic – School-Age, Adolescent, Adult, Interventions
- Pharmacologic Medical and Psychiatric Comorbidity
- Molecular and Cellular Biology
- Motor, and Repetitive Behaviors and Interests
- Service Delivery/Systems of Care
Resources and Information Mentioned in this Article
International Society for Autism Research: https://www.autism-insar.org
Early Start Denver Model: https://extension.ucdavis.edu/subject-areas/early-start-denver-model
Duke Center for Autism and Brain Development: https://autismcenter.duke.edu
Employable Me: http://www.abc.net.au/tv/programs/employable-me-australia/
MIT Media Lab: https://www.media.mit.edu/
Embrace–Smartband for Epilepsy Management: https://www.empatica.com/
Karolinska Institutet: https://ki.se/en/people/svebol
Autistic Adults to Follow on Twitter and Related Hashtags
John Elder Robison @johnrobison
Sara Luterman @slooterman
Thinking Persons Guide to Autism @thinkingautism
John Marble @JHMarble
James Cusack @jaamcusack
Jon Adams @soundcube
Scott, M.T, Milbourn B., Falkmer M., Bolte S., Halladay A., Lerner M. D. , Taylor J. L. & Girdle, S. J. (May, 2018) Conference Proceedings from the International Society for Autism Research.
This article was featured in Issue 81 – Building Self-Esteem in Kids with Autism