Celebrating the Spectrum

Today we talk to Liv Gilbert, Debbie’s oldest daughter about what it’s like when a sibling gets an autism diagnosis. She recalls her emotions at the time and how she feels about her brother.

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This week we will revisit some of our favorite interviews. Don’t get us wrong, we have loved all our guests and we will likely do this more often because it was so much fun going back to some of our first interviews.

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The Utah Parent Center’s mission is to help parents help their children, youth and young adults with all disabilities to live included, productive lives as members of the community. They strive to accomplish that by providing accurate information, empathetic peer support, valuable training and effective advocacy based on the concept of parents helping parents.

In this episode, we dig into the Individualized Education Program. We learn all kinds of new acronyms and get you ready for your first meeting. Jennie Dopp is a parent advocate at the Utah Parent Center. She gives us the basics in a very authentic way of understanding and utilizing the IEP.

“Working for a nonprofit, it’s about mission, none of us are in it for the money. We love what we do.”

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Jessie Hewitson is an award-winning journalist in the UK. In this book, she combines her own experiences with tips from autistic adults, other parents, as well as advice from autism professionals and academics. She is a mother of two; her 12-year-old son is autistic.

“I realized, when I was writing this book that I wasn’t scared about autism, per se, I was scared about having a really unhappy child. And, by extension, being really unhappy myself because, I don’t know if you’ve got the saying in the US, but you know, it is true that you’re as happy as your unhappiest child.”

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A discussion with Sarah Aida Heuser who when she was 18 years old found out she was on the autism spectrum. She tells how emotional it was to hear, and how it helped make sense of her life up to that point. Since that time, she has thrown herself into studying autism and is finishing her master’s degree to become a licensed clinical social worker where she hopes to help people with autism. She promotes self-advocacy and determination and is, overall, a delight to talk to.

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We have the amazing opportunity to talk to Dr. Barry M. Prizant the author of Uniquely Human: A Different Way of Seeing Autism. He has studied autism for 50 years. He has a love for people with autism and their families. He shares what he has learned, how things have changed over the last five decades and what he hopes for the future. His book is the winner of The Autism Society’s Temple Grandin Literary Work of the Year Award”. This is a must-listen.

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The language surrounding autism can be intimidating. As someone who knows and loves many people on the autism spectrum, FM100.3 Kari Bushman explains why the words matter when it comes to describing the people we love. She also helped create  “AutCon: An unconventional convention designed for adults on the autism spectrum.”

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Diagnosed with autism at four years old, Taylor Duncan was often excluded from playing the game he loved. Baseball. So, as an adult on the spectrum, he hopes no one else with any disability must sit the game out. He has successfully created Alternative Baseball, a traditional baseball setting free of judgment. He focuses on physical and social skills growth through the hands-on authentic experience in all practices and games.  Alternative Baseball is now found in 30 different communities across the county with hundreds of players. In this episode, he talks about the challenges involved with creating the program and some of the greatest moments his teams have experienced on the baseball field.

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Jared Stewart describes himself as an “ambassador for autism”. After college, he started a job at an adult autism treatment center and quickly realized he was on the spectrum. Jared was officially diagnosed with Asperger’s a short time later. In this engaging conversation, Jared talks about the two cliffs parents of children with autism face; when their child enters adulthood and no longer gets government-mandated services and the second, scarier cliff, when the parent can no longer care for the child. Jared is advocating for a world that celebrates the uniqueness and strengths of those with autism.

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Stephanie Hanrahan, creator of Instagram account Tinklesherpants and creator of Podcast: Labeled and Loved gives us a raw look at her life with a husband who needs a heart transplant and two adorable autistic children. Stephanie shares the moment she decided to use social media as a journal and how that has changed her life, as well as those who have connected with her.

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Jennifer Cook found out she was Autistic well into her adult life. In this episode, she tells Debbie what it was like growing up feeling different and how she’s used her skills to help others. She’s a best-selling author but you’ve likely seen her on Netflix Original: Love on the Spectrum U.S.

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Danish Mamtaz, also known as autism dad on social media, is a commercials director, life coach and father to Sulayman, his oldest son who is autistic. He shares his methods on raising a happy, healthy son. 

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In the opening episode of Celebrating the Spectrum, Debbie Worthen and her husband, Brandon tell us about the day their son, Asher was diagnosed with Autism. They discuss the feelings and thoughts they had entering a world they knew nothing about. 

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