Encouragement speaker Derrick Hayes gives an AUTISM Interview by asking six questions through each letter in the word AUTISM to give readers an insightful perspective from parents, experts, entrepreneurs, and other leaders in the field.
Today’s AUTISM Interview is with Anna Bullard who started her journey of advocacy for autism in 2007 when her middle daughter, Ava, was diagnosed with autism. She serves as the state policy chair of Georgia for Autism Speaks and won the 2014 national “Speak Out” award from Autism Speaks founders Bob and Suzanne Wright.
Anna was instrumental in the passage of Ava’s Law in Georgia, named for her daughter, requiring insurance coverage for autism. She served on the Autism Society of Georgia Board and the Board for Leadership and Disability for Georgia State University. Anna has started parent supports groups in multiple states and continues to advocate for services for children with autism throughout the country. She is currently working as the assistant vice president of Government, Business, and Community Relations for ChanceLight Behavioral Health, Therapy, and Education.
A is for Awareness – When and how did you first become aware that something was different?
When my daughter Ava was born, I started to see differences in her compared to her older sister. Ava didn’t sleep and cried most all day and night. When I tried to feed her, she wouldn’t open her mouth, she wouldn’t respond when I called her name, and she had no language skills. I felt like I didn’t know Ava, and Ava didn’t know me. It was during a birthday party for my oldest daughter when I determined something was definitely wrong. As soon as we started singing “Happy Birthday,” Ava started screaming and crying uncontrollably. This is when we started our journey of visiting doctor after doctor until we found a specialist who diagnosed Ava with autism.
U is for Unique – How has this experience been unique for you and your child?
Ava was my second child, so when she was born I thought I knew all the skills of parenting. I quickly discovered when you have a child with autism, everything you “think” you know is thrown out the window. Raising a child with autism was unique because I was dependent on therapists and others to help raise my child. It made me feel helpless. Because Ava responded differently, she and I had to learn to teach each other.
T is for Tools – What tools are there now that were not there in the beginning that could help other parents?
When Ava was diagnosed with autism I thought someone would hand me a pamphlet that would provide guidance on where to seek therapy, how many hours of therapy she would need, etc. That didn’t happen because in 2006, that didn’t exist. When I inquired about programs for children with autism, I was told there were effective therapies, but they were too expensive and I wouldn’t find those programs in the state of Georgia. I was determined to help my daughter, so I attended a training session hosted by Early Autism Project. I think I was the only parent there. The room was full of teachers and speech therapists, but it sounded interesting so I stayed. At this training session, I learned about Applied Behavior Analysis (ABA) therapy. I knew, based on my own research, that it was the most effective therapy for children with autism and typically not covered by insurances. At the time, Early Autism Project only provided home-based ABA therapy in Georgia and it was incredibly expensive because there was no insurance coverage. I didn’t care. We immediately started ABA therapy and I saw a dramatic difference in Ava. Early intervention helped Ava progress from a two-year-old who we were told would never speak or be in a regular classroom, to a successful eighth-grader who is thriving in a general education classroom and no longer requires intensive treatment. That is why I fought for Ava’s Law, which made Georgia the 41st state to mandate insurance for children with autism. Thanks to state mandates like Ava’s Law, more children can receive therapy. Parents have more hope than ever before because there is greater access to services.
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I is for Inspire – As a parent, when you look at your child or children what inspires you?
Every day I am inspired by Ava’s bravery and her tenacity to work hard. It requires such commitment for a child to participate in 30-40 hours of therapy a week. Children with autism have to work harder for everything. I watched Ava struggle to learn all the skills that come naturally for most children. However, Ava was committed to working hard because she knew ABA therapy was critical to her reaching her full potential. Her mature understanding of the power of therapy is the reason she now redirects her energy towards advocacy. She wants to ensure all children have access to ABA therapy. As I said, I am inspired by my daughter every single day.
S is for Support – Are there things you struggle with or have struggled with, and what types of support do you still need?
I struggle when parents who have a child with autism see the amazing progress Ava has made and they want the same outcome for their child. They want access to ABA therapy. I struggle with what I tell them because that treatment can cost $20-30K a year and most parents can’t do that without some kind of financial assistance. Children all over the country are being denied access to treatment. That is why Ava’s Law in Georgia and similar mandates in other states are so important because they provide children with coverage for life-changing autism therapy.
M is for Manage – What keys to success can you leave with parents so that they can better manage their day-to-day efforts?
A strong support system is key when you have a child with autism. You need to surround yourself with people who believe in you and your child and the importance of the therapy. Raising a child with autism is difficult, but good friends and family can provide you with the encouragement you need to keep going. Society also puts a lot of pressure on parents to do everything at once. When children start therapy, you feel like you should be doing everything you can to help them. My suggestion is to try one thing at a time to help you determine what is going to work for you, your child, and your family. You can always add to things. Parents feel pressure to do everything and it just isn’t possible.
This article was featured in Issue 65 – Back-To-School Transitions