ASF is so grateful to everyone who participated in the 2022 Rides FAR event, which shattered all previous fundraising records and brought in more than $1 million for the first time in the event’s eight-year history. The money raised will be used to fund autism research that improves lives. ASF would like to give special thanks to the science speakers who spoke at the Closing Ceremony at each ride location: autism mom Erin Lopes in New York; Dr. Heather Volk of Johns Hopkins in Baltimore; and Dr. Alycia Halladay, who spoke in Toronto. Below, read the text of Erin Lopes’ speech, which talks about the importance of funding and supporting autism research:
I am so very honored to be here today. It’s an honor to participate in the Rides Far event for the Autism Science Foundation and it’s an honor to be here speaking to you.
When Julie Berger reached out to me about providing the closing remarks for Rides Far I was sitting in my office at work and I had just gotten off the phone with my son Tommy. Tommy just moved into his own apartment two weeks before.
I told Julie yes without hesitation. It occurred to me that timing here is pretty significant. I’m up here because of my son Tommy. Tommy is a young autistic adult. Some of you may remember him as the young man who played Fleetwood Mac on his acoustic guitar at the Day of Learning last Spring. Tommy was first diagnosed with autism in the Fall of 2002. I was brought into the autism community 20 years ago. So, as I speak to the importance of science and the work that the Autism Science Foundation is doing, I’d like to reflect on what the autism research landscape was like 20 years ago when Tommy was first diagnosed.
I can honestly sum it up in one word – bleak. We didn’t have a good scientific understanding of autism at that time. And in the absence of that people filled in all kinds of myths like autism is caused by bad parenting or vaccines or not having enough parasites in your gut or maybe having too many parasites in your gut. The list seemed endless.
And the problem with the poor understanding about autism was that those myths perpetuated stigma around it. That stigma put up barriers to opportunity that made my son’s life really, really difficult. When we would go into the community to find opportunities for him that stigma was reflected in the disapproving stares to sometimes outright exclusion and hostility. Maybe I speak in solidarity with some of the parents here – we carry the trauma of that. Back then, I felt strongly that the stigma was fueled by lack of clear science to help us understand the biological basis of autism. It was rougher road back then.
We reached a significant milestone when the Autism Science Foundation was established by Alison Singer in 2009. I remember when I first heard about ASF and that the mission was to fund evidence-based research into better understanding autism. Evidence-based. Like those words rang out like a chorus for me because the autism community needed the scientific community’s attention and focus. We needed the application of evidence-based research.
Since 2009 a lot of important work has been funded by ASF. From the wandering study to the Autism Sisters project to the genetic basis of autism, the neurobiology of social behavior, understanding the function of genes like MECP2 and SHANK3 to evidence-based interventions in schools. Over the last 13 years the data from those studies have had a ripple effect. The studies funded by ASF get published. And then pediatricians start downloading it. Then primary care doctors, nurse practitioners, physician assistants, registered nurses start to download and read the data. The data shapes the understanding of autism and shifts us to an evidence-based approach to treatment. And then we see a change in how other communities approach autism. The science becomes available to teachers, social workers, school counselors, behavioral specialists and then evidence-based approaches get applied in the education settings. The textbooks that define what autism is and isn’t – those change because of the science. The ripple of evidence-based research extends to the broader community and influences perceptions and attitudes about autism that challenge stigma.
The ripple starts to shape what inclusion of people with autism looks like and after 2009 we hear more about words like acceptance. There are opportunities that exist now for adults like my son that simply were not there 20 years ago. Society has changed for people with autism. And it’s the science that drives of that change.
We’ve made great progress through autism research but we still have a long way to go before we have equal opportunities for people with autism regardless of where they fall on the spectrum. There are significant barriers that still exist in access to medical treatment, access to early intervention, access to transportation, meaning education and meaningful employment. We absolutely need the science because it opens up the path for us to move us forward.
The takeaway I would like to leave you with today is this – societal change will happen. The science we fund through ASF shapes that change and shapes the futures of people on the spectrum. This event, your enthusiasm and commitment to funding evidence-based research in autism has significance that goes beyond this rainy day and will carry us forward. And it gives me great hope for the autism community. So, I want to thank every one of you for being here today, for supporting this event, for supporting the Autism Science Foundation. For supporting people like my son Tommy. For supporting all individuals with autism. Thank you truly from the bottom of my heart.
I want to thank Alison Singer, Alycia Halladay Ross, Julie Berger, Kathy Dowd and Casey Casey for their outstanding work at ASF. Thank you Bryan and Melissa for your amazing work with Rides Far. A million dollars!!!!!