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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Charlotte Deleste is a journalist in Wisconsin. Her son, Giovanni, was born with a rare genetic condition that caused him to have up to 80 seizures a day. Despite his disabilities, Gio was declared “not disabled enough” to get home nursing care. She couldn’t believe it. Instead of accepting a system that felt broken, she and her husband created what has turned into a non-profit helping hundreds of families with respite care, therapy, and family support. You will be inspired by her drive to get her son, and other families, the help they need.

“That’s all we want to do, just make a difference, make a positive difference and hope that it just keeps going and somebody else will do the same down the road.”

-Charlotte Deleste, Founder of Gio’s Garden

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The Utah Developmental Disabilities Council is entirely dedicated to improving the lives of Utah citizens with autism and other developmental disabilities. Erik Stoker is their Information Specialist and talks about the resources available and how he got involved.

“I believe it’s important for a self-advocate to control what they want to see happen in their life because many adults want to live independently.”

-Erik Stoker

He also has a podcast you can check out.

https://open.spotify.com/show/0vESwMIeQXucVfHKliYirY

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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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A valuable conversation today with Lacey Anderson who founded an autism school and therapy center. The questions you should ask and the things you should look at to determine what place is right for your autistic child. She shares how she fell in love with autistic children. She also addresses the controversy surrounding ABA therapy.

“You'll see miracles. Because if you do something out of love, you're going to tap into different things that that kid needs, and you're going to figure out how to help them.”

Link to videos: Autism Solutions Academy - YouTube

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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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“We all could use a little more kindness and understanding and neuro inclusion.”

Candice Christiansen is best known as a licensed clinician. Candice’s expertise is providing neuro-inclusive counseling and coaching to neurodifferent individuals and mixed neurotype couples healing from a trauma and a variety of relationship, sex, and intimacy issues. She’s also a late-diagnosed autistic female. She tells us about her journey, her diagnosis and what she’s learned along the way. She’s also the host of Fabulously Candice: The Sexiest Podcast About Neurodivergence.

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A raw, candid conversation Lincoln Bentley’s mom, Marisa. Marisa is a hands-on mom who would not accept the sobering statistics of autistic adults’ lack of employment. She got creative with her son’s creativity and came up with www.Linc-d.com - an online marketplace featuring independently owned and operated shops. The shop now has dozens of neurodiverse artists who keep 70% of the profits from each sale. Marisa shares her journey of helping the world see the amazing things her son is doing.

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In this week’s episode, we get to hear all about a comprehensive study completed by BYU researchers. Dr. Timothy B. Smith and Dr. Tina M. Taylor have spent decades in their respective fields. Their latest research with Linda Cheng gives an optimistic look at the future for individuals with autism spectrum disorder and their families. This candid discussion touches on key points of the research along with some personal stories you don’t want to miss.  

https://news.byu.edu/intellect/children-with-autism-benefit-when-parents-are-trained-to-provide-at-home-interventions 

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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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