This post is by Pat Robbins, Texas area director for Autism Speaks, and Alycia Halladay, Autism Speaks’ senior director of environmental and clinical sciences.
MegaFest. Sounds big, right? It was! Those of us who were lucky enough to represent Autism Speaks at MegaFest in Dallas August 29-31 were incredibly honored, professionally, and profoundly moved, personally.
Marcus and Portia Dawson, members of The Potter’s House church in Dallas made our participation possible. Marcus and Portia are Callie’s parents. They introduced The Potter’s House and Bishop T.D. Jakes to Callie, to autism and to Autism Speaks. The rest is history!
Imagine, men and women literally coming up to our booth at the Family Expo, with tears in their eyes, thanking us for being there. They had all heard of Autism Speaks. The Bishop had told them about us, and they were visualizing of all the important things we can do for families by working together.
Volunteers--clinicians, therapists, parents and friends--helped us staff the booth. They came from across Dallas/Fort Worth. Some were parents of children on the spectrum. Many were not. Some are involved in Autism Speaks’ outreach and others came from UT Southwestern, University of North Texas, Easter Seals and the Autism Treatment Center. They all rolled up their sleeves and dug in to help families with questions.
We spoke with parents, grandparents, friends and educators. The children we heard about were 12 months to 28 years old. Some parents were ready for answers. Some came knowing their spouses were still in denial. Others were not really ready but they were brave enough to ask questions.
A few highlights from our days at MegaFest:
- Tisha Campbell-Martin stopped by. Tisha has a son on the spectrum and is a wonderful advocate. Instantaneously there was a vast sea of people around the table. So many people were inspired by her story. One fan, a young woman who’s on the spectrum, was completely overwhelmed by the opportunity to meet and have a hug from Tisha. There wasn’t a dry eye in the house for a while after she left.
- Later, a woman appeared in the corner pushing a stroller with her daughter in it. She said in a very quiet voice: “I think I need help”. She suspected her daughter might have autism, but was new to the Dallas area and needed resources, a number to call, and to have her concerns heard by an expert. Two clinicians spent 20 minutes talking with her in a private room. The clinicians validated her concerns, helped her visualize next steps, gave her a “First Concern to Action” toolkit, and a list of resources in the area for her to call.
- A young homeless mother who didn’t speak English came to the booth. Her son was about 4, and as it turned out, probably didn’t have autism, but she was concerned. She had nowhere else to turn and saw that were available to provide some perspective and advice. Luckily, a local volunteer spoke Spanish and could translate. In addition to talking to her, listening to her, and providing her advice, we gave her the Spanish First Concern to Action toolkit and put her in contact with local social service agencies that could help her family at this incredibly distressing time.
We weren’t able to offer complete solutions, but this event was the first opportunity for many people to talk to someone knowledgeable who could provide them with the right information and with resources and materials that would help them on their next step of the journey.
Alycia Halladay spent her spare time blanketing the ballrooms and meeting halls in the convention center with the “What is Autism” and Early Access to Care flyers. As she was papering the room where one of the T.D. Jakes professional development courses was to begin, a security woman approached. Uh-oh! Just then, a man approached Alycia with some specific questions about the rise in prevalence in ASD. They began an engaging conversation which drew some passionate opinions from the security person. Apparently her older sister has dyslexia. She had been frustrated by the lack of knowledge and support when her sister was younger. Finally, she reached out, touching Alycia’s arm. She winked, and walked away and Alycia kept on handing out those flyers!
People who knew about autism stopped to learn more. People who knew nothing stopped to learn something. Some people just wanted to stop and talk and look at the beautiful photos of our children and families. They all walked away having more information and excited to share it.
Thank you to Bishop T.D. Jakes and Mrs. Jakes, Marcus and Portia Dawson, The Potter’s House staff, and the T.D. Jakes Enterprises staff for giving us this opportunity and supporting this important effort.
A special thanks goes out to Autism Speaks staff and volunteers from the community and from UTSW, UNT, Autism Treatment Center and Easter Seals who spent their Labor Day weekend helping us change lives!