My Autism, My Story

This Week’s Guest

Autistic Self-Advocate, Turrell Burgess, joins the podcast this week to discuss his experience, his book, What’s with the New Kid: My Autism My Story, what led him to the International Council on Development and Learning (ICDL)–the home of DIR/Floortime–and his new role as Executive Assistant & Diversity Advisor, and how he plans to impact the world in his new role. Turrell did a reading of his book at the ICDL 2021 DIR/Floortime Conference where he spoke of his experience and it is a pleasure to introduce him to the world of DIR/Floortime here!

Turrell’s Book

Turrell’s book, What’s With the New Kid? My Autism, My Story is about himself when he was 10 years old when he started at a new school. After he graduated college with his Communications degree, he decided he wanted to send a message on behalf of those on the spectrum. When he was 3 years old, his parents were advised by a doctor that he would be lucky to finish high school. Not only did he finish high school, but he got a college degree and graduated with honours!

Turrell also started his own business, TMR Publishing, a non-profit organization. His book and his business drew the attention of Jeff Guenzel, ICDL’s CEO, who asked him to present at the ICDL conference, which led to his current employment at ICDL. The book is about his life as a 5th grader at his new school. He had been in a special needs class and had just moved into a regular school. It was hard at first, he shares, but he also taught his classmates what it’s like to live with autism.

Support Systems

Turrell’s sister has played a large role in his life, too. They are a year apart and are inseparable. They graduated high school and college in the same year. They’ve had each other’s back and supported each other their whole life. His sister has told him how much he’s added to her life as well. She told Turrell that he has a gift that other kids don’t have. Everybody has their strengths, and people on the spectrum are just as smart as everybody else.

Defining Experiences

A memory that stood out to me from Turrell’s presentation at the ICDL conference last year was recalling when he was age 7 or 8 and he was put into time out in a very humiliating way. He was dragged over to the time-out area. He didn’t know how to react because it was traumatizing and he was crying. He wondered what he did to deserve getting dragged by the arm. However, he never holds grudges. He learned something from that experience.

He tried to get in contact with that school to thank them for making him the man he is today. He says a lot of people, starting with that school, helped him along the way. The experience will live with him forever, but he doesn’t hold grudges and just moves on. I recall ICDL’s CEO, Jeff Guenzel, saying at the ICDL Conference that he can’t imagine being the teacher who left that memory with a student versus a teacher who left inspiration.

Turrell recalled a relationship with a retired teacher who had helped him for many years as his classroom aid and believed in him when he didn’t believe in himself. After he released the book, he spoke with her on the phone and she let him know how proud she was of him. He is grateful it helped him reconnect with her and four months later he learned that she had passed away at the age of 83. That was very hard for him because she meant so much to him. It took him a few days before he could speak to someone about it. She was still working at 83 years old. It made him realize how we have to cherish every moment we have.

The Power of Relationships

It speaks to the power of the ‘R’ in the Developmental, Individual differences, Relationship-based (DIR) model, which is 99% of DIR/Floortime. Turrell then spoke about the support his parents gave him in his life. His mother always reminded him that he could be capable of more than others believed, and his father taught him about accountability. He cherishes this support now that he is living on his own. It all helped him to get to where he is today.

Turrell’s Advice to Parents

I asked Turrell to leave parents with some advice, referring to parents whom I interact with in ICDL’s weekly parent support drop-in. He says that it’s very overwhelming and scary at first when your child gets a diagnosis, especially if the doctor tells you things to make you worry even more, but he asks who will determine your child’s future? He says it’s you and your child who decides the child’s future. If anyone knows your child more than anybody, it’s you. You understand how special your child is and what they’re capable of achieving.

Doctors doubted what he could do, but he graduated high school and then college–with honours. He’s now spending every day of his life changing people’s lives. He says to do everything you can do to make sure that what you believe in your child comes true. Let your child know that they are capable of accomplishing anything they want to. His parents sat him down in middle school and described his diagnosis and all the obstacles he overcame and that he can overcome more. Don’t listen to what others say if they downplay your child’s abilities.

If you believe that your child is truly capable of accomplishing great things in the future, you have to tell them that. Continue to motivate them every single day because it will stick with them for the rest of their lives and they’ll be motivated every single day to be great in this world. I added from my experience as a parent that it’s a slow, long road. Being neurodivergent myself, I tend to worry about every possible outcome, which gets overwhelming, so I’ve learned that you can only focus on what’s in front of you right now and have faith that the process will work.

The Parents’ Process

People on their Floortime journey need to know that you may not be able to see that potential in your child right now, but you can have faith that it’s going to be there and will come with the process. The person who helped me see that was Dr. Gil Tippy, who’s been on my podcast many times. He told me that the sky is the limit for my child. He’s seen the potential of so many children unfold over the years through Floortime, and he helped me to trust the process. Speaking with Turrell helped me see that seeing the best in your child helps the child thrive.

Turrell’s Next Book

Turrell is often asked when his next book will come out and he says he doesn’t know because he wants to see how the first book goes first. He does have a second book about starting college and living on his own for the first time. It’s a dramedy chapter book called, ‘Maurice‘, his middle name. It’s a self-autobiographical dramedy. It’s based on his life as a freshman in college, but it is fictional. Being autistic, he hasn’t figured it all out yet. Parts might make you cry, he suggests. He is still working on it.

Turrell’s Hard Lessons

Turrell says he’s learned some hard lessons. The world can be cruel. Often when you get older and start doing better for yourself, people decide to be cool with you now even though they weren’t cool with you before as a struggling child. He tries to give people the benefit of the doubt, but his grandparents told him if you do that too much, you can get taken advantage of, and he doesn’t like that. It’s great to be kind, but you also have to be careful who you interact with. People will use what you’re doing for your own gain.

Turrell’s ‘I’

I asked Turrell about his ‘I’ in the DIR model. He says that he never noticed as a child, but his parents did. One thing that comes to mind is how much he talks to himself. As he’s grown, he’s had the chance to interact with peers he went to middle school with and they always remind him of how nice he was and how much they learned from him, which surprised him. He never tries to change who he is to get someone to like him. He just wanted to be himself, so when he hears that he was one of the nicest people they met, it put a smile on his face.

He doesn’t know why he does things like talk to himself, and he can’t control it. He hopes sharing his experience can help other autistic kids. Turrell was also a kid who moved a lot and couldn’t sit in one place. He couldn’t help it. I told him that his body was trying to self-regulate.

Turrell’s Impact

I asked Turrell about the impact that DIR/Floortime is having and how he feels about ICDL choosing a self-advocate like him to have so much impact on the organization that affects the lives of so many autistic people. Turrell said that he feels honoured and realizes that he has a great responsibility in being the voice for those on the spectrum and giving parents an opportunity to learn more about how ICDL’s services can really help parents to help their children.

All he’s wanted in his life is to do the right thing. He thinks about it all the time, so he’s grateful that Jeff gave him the chance to do that. He doesn’t want to let anyone down and wants to give parents a reason to check out ICDL. I added that ICDL wants to live up to Turrell’s standards as well. Having self-advocate, Emile Gouws, on the Board of Directors and working with the Autistic Self Advocacy Network (ASAN) and having courses taught be self-advocates is an important part of ICDL.

I asked Turrell if he will have another conference presentation this year in October at ICDL’s 2022 conference. He is planning to! Thank you to Turrell for sharing this time with us, describing his experience and his mission. I hope that you learned something valuable and will share it on Facebook or Twitter and feel free to share relevant experiences, questions, or comments in the Comments section below.

Until next time, here’s to choosing play and experiencing joy everyday!