Tonya Haynes and Tyler Haynes are part of Autism Speaks’ inaugural Champions of Change cohort. As Champions of Change, Tonya and Tyler will serve two-year terms as messengers, advocates, allies and advisors for the nonprofit organization and to the autistic community at large. (Photo by Derik Holtmann)
When Tyler Haynes reached 16 months old, Tonya Haynes noticed a change in her son. She saw a significant pause and, in some cases, regression in his development. At 2 years old, Tyler received an autism diagnosis.
Tonya recalls that time vividly. Initially, she and her husband were overwhelmed, but they quickly turned their feelings of uncertainty into an unassailable sense of hope for their son. They made a commitment to fight for him and what he needed.
That fight required knowledge, and Tonya found herself regularly turning to Autism Speaks, a nonprofit organization dedicated to creating an inclusive world for all individuals with autism via advocacy, research, support services and more.
“Once we discovered the Autism Speaks website, such an excellent resource, it became a constant point of reference,” she said. “We would constantly circle back to Autism Speaks, to the website, for information on how to navigate the space that we were currently in at various points in time. What’s the latest evidence? What’s the latest research? What issues are other families presented with and how are they navigating this space?”
Now, the Haynes family’s journey with Autism Speaks has come full circle. This past May during World Autism Awareness Month, the organization announced the launch of its newly established Champions of Change program and introduced an inaugural class of five autistic advocates and spokespeople from across the country, including Tonya and Tyler.
Tonya is the director of clinical operations and an assistant teaching professor in the College of Nursing at the University of Missouri–St. Louis, while Tyler is a graduate of UMSL’s Succeed Program and an alumni and recruitment specialist and office support staff member with the Office of Inclusive Postsecondary Education.
They’re joined by Alex Astrella, a self-advocate, documentary filmmaker and founder of Blue Star Productions; Victoria Handy, an advocate for herself and her daughter with autism and a behavior technician; and Logan Slaughter, a self-advocate pursuing several projects including authoring a children’s book about the importance of autism acceptance.
“It takes courage to share a very personal journey and advocate for one’s needs,” said Keith Wargo, Autism Speaks president and CEO. “Our Champions of Change embody the spirit of fearlessness in representing the wide range of stories from autistic people, caregivers and allies who make up our community. We are proud to amplify the voices of these advocates as they will play a vital role in creating an inclusive and accepting world for those living with autism by bringing to light the real needs of the community.”
Per the organization, the Champions of Change will serve two-year terms as messengers, advocates, allies and advisors for the nonprofit organization and to the autistic community at large.
“Champions of Change is a fun way to raise awareness for autism,” Tyler said.
Tonya echoed her son’s sentiment.
“We’ve worked with Autism Speaks on smaller projects. The opportunity to partner and collaborate with Autism Speaks in this capacity – on a larger scale – to increase and enhance awareness about autism and inclusion is remarkable,” she said. “It’s outstanding.”
Over the years, the Haynes family kept Autism Speaks informed about Tyler’s progress and achievements and remained involved with the local chapter. Tyler’s perseverance and subsequent success at UMSL made him a natural choice for Champions of Change.
Tonya always dreamt that her son would participate in some form of postsecondary programming, but when he was younger, many of the available programs didn’t align with his skills and interests. Then in 2013, Tonya accepted an adjunct faculty position at UMSL and learned about a new postsecondary program on campus, Succeed.
“I could not believe what I was hearing,” she recalled. “At that time, Tyler was 12, and I began to follow the program.”
Since its founding in 2013, the Succeed Program has provided opportunities for UMSL students with intellectual and developmental disabilities to develop academic, living and vocational skills as they work toward a two-year Chancellor’s Certificate or potentially matriculate to a degree program.
Tyler thrived in the program and seamlessly integrated himself into the fabric of campus life. He lived independently on campus in Oak Hall while earning his certificate and became a fixture at campus events – always smiling and ready to take a selfie. In addition to his studies, he joined Alpha Phi Omega, a national co-ed service fraternity, and played intramural basketball, floor hockey and volleyball. During one basketball season, he served as team captain.
His busy calendar also included a part-time job. In between academic and social engagements, he worked at the Recreation and Wellness Center as a guest services attendant – the perfect position for a social butterfly interested in sports.
“I like to work with people, and I like to work on the computer,” he said.
After graduating from the Succeed Program, Tyler has remained connected to the UMSL campus and continues to work with people as an alumni and recruitment specialist with the Office of Inclusive Postsecondary Education.
“I help to coordinate events, and I help recruit new students,” he said.
Now, with Autism Speaks, he gets to go to events and meet people across the country. In March, he and his mother traveled to Dallas to meet their fellow Champions of Change and go through media training. They put it to use shortly afterward in April during an interview with “Coffee With America,” which focused on how to work toward true acceptance and inclusion for the autistic community.
Since then, Tyler and Tonya have served as ambassadors in a variety of capacities. This summer, they attended the annual Autism Speaks St. Louis Golf Classic and a check presentation in Kansas City, recognizing McDonald’s financial contribution to the organization.
“The impact of direct engagement and interaction are evident when attending various events,” Tonya said. “When we’re at live events, people often approach us and want to hear more. They have questions or share their personal stories.”
In addition to attending live events, Tyler and Tonya have done interviews with several media outlets. On “Just Another Autism Podcast,” Tonya spoke with host Eileen Lamb, a mom on the autism spectrum, about their respective motherhood journeys. Earlier this month, Newsweek interviewed her for an article about the unique drowning risks autistic children face. Tyler has even starred in a short documentary video produced by Autism Speaks.
Jonathan Lidgus, director of the Office of Inclusive Postsecondary Education at UMSL, is thrilled to see Tyler reaching a greater audience, noting that he has always had a penchant for outreach work.
“I could not be prouder of Tyler serving as a Champion of Change for Autism Speaks,” Lidgus said. “His passion for advocacy and support is where he shines. He was the Succeed Program’s first Paul Meyer Advocacy Scholarship recipient, which allowed him to travel to conferences and advocate for inclusive higher education.”
That kind of people-facing work – with UMSL and Autism Speaks – has been vital to Tyler’s continued success in living life on his terms.
“It’s very important to Tyler, and of course, our family, that he’s able to engage in activities and employment opportunities that align not only with his skills, strengths and abilities, but his interests,” Tonya said.
Tonya knows, however, that not every autistic individual has had the same level of support or positive outcomes as her son. That’s what fuels the family’s desire to share their story and give a voice to the autistic community.
“Tyler reminds us that the possibilities are endless,” she said. “If given the appropriate level of support, consistently and intentionally, people with autism can thrive. They can thrive across the spectrum, across the lifespan.”
