As she took the podium, Associate Professor and autism researcher Micah Mazurek asked the audience to take a moment to look around the packed auditorium.
“Today, you’re surrounded by friends, neighbors, allies, and champions,” she said. “We’re all here because we believe we can create a brighter future together.”
Hope for a brighter future was the theme of the day at the inaugural Virginia Autism Hope Summit, held on Saturday in the UVA Inn at Darden in Charlottesville. The one-day conference was hosted by the University of Virginia’s Supporting Transformative Autism Research (STAR) initiative, a pan-University initiative created in 2018.
More than 400 people – including individuals with autism, parents, service providers, family members and community allies – were in attendance. The event drew attendees from throughout Virginia, with some traveling from as far away as New Jersey and Kentucky.
Keynote speaker Kevin Pelphrey, a neurology professor in the UVA School of Medicine and a member of the UVA Autism Research Team, opened the conference with a heartfelt presentation that wove information from his latest research on autism with personal stories from his family’s journey raising two children with autism.
Then, attendees cycled through a series of breakout sessions and workshops, covering a wide range of topics for all life stages, from “Autism 101” to housing and employment. Session leaders covered specific tips and strategies, answered questions, shared resources, and facilitated conversations. If anyone needed a break from the activity, a “sensory room” was available where attendees could enjoy a quiet space and learn about sensory-based calming strategies from a licensed occupational therapist.
Finally, the conference wrapped up with a keynote panel discussion moderated by autism speaker, mentor, and consultant Amy Gravino. Gravino and three panelists, all adults with autism, spoke candidly about their experiences and their hopes for the future.
Throughout the day, individuals with autism, families, researchers, and service providers had countless opportunities to share concrete resources and information, network, and connect with one another. A resource fair was available for attendees to peruse during breakfast and lunch, with nearly 30 organizations represented, including the Charlottesville Region Autism Action Group, the UVA Brain Institute, the Virginia Institute of Autism (VIA), and many more.
Attendees also had the opportunity to sign up for the Autism DRIVE, a new online platform to connect the autism community with researchers and resources. The Autism DRIVE is a free website where individuals with autism, families, researchers, and professionals can go to access resources, educational opportunities, and a research registry. The up-to-date resource directory includes an interactive map that is searchable by topic, age, and location.
Andrew Baxter, Fire Chief of the Charlottesville Fire Department, raised two children in Charlottesville – including his son Peter, who was diagnosed with autism at 3 years old. Baxter said he came to the summit to learn more about supported housing and employment opportunities for Peter, now 21. But he also valued the opportunity to connect and share his experiences with other families.
“It really is nice to be in a space where you know that everybody understands what you’re talking about," he said. "We all want that and we all need that, so for UVA to provide that opportunity is amazing. To see UVA really take a great leap and be a national leader in the basic science research, in autism-specific research, and developing best practices and then providing specific, concrete resources for this community – it’s a game-changer.”
When asked what he hopes for his son’s future, his answer was simple: “Our hope is that our son Peter can lead a fulfilling life, in the same way that every parent hopes for their child.”
Organizers said the overwhelming response indicates the need for greater autism services and support, and they are grateful for the opportunity to bring together so many in the autism community.
“We are just so delighted to be making these connections with families,” said STAR Family Navigator and conference organizer Fay Painter. “At STAR, part of our mission is to improve quality of life for those living with autism, which includes people on the autism spectrum, their family members, and everyone else who loves and cares for them. I’m an autism mom, and there are a lot of stressors to living with autism. We wanted our guests to be able to take a break from their normal lives and feel supported and cared about.”
The STAR initiative, led by the Curry School in partnership with colleagues across the University, aims to improve the lives of individuals with autism through groundbreaking research and innovative models for intervention and training. All breakout workshops from the conference were recorded and will be made available on the Autism DRIVE website. To learn more about STAR and to access the Autism DRIVE, visit www.curry.virginia.edu/STAR.