Episode 066: Neurodivergent Generations LIVE! - From Living at the Margins to a Culture of Our Own

In a panel recorded live in front of an audience at the 2023 Eye to Eye National Friends and Allies conference, David and Isabelle sit down with Eye to Eye co-founders David Flink and Marcus Soutra, Eye to Eye student leader Kayla and an Eye to Eye student leader’s parent Claudia to discuss what it is like to be neurodivergent—or a parent to a neurodivergent kid—across different generations. Part one of a series. To learn more about Eye to Eye, visit www.eyetoeyenational.org. In this part we cover how we have moved from the margins to a neurodivergent culture of our own.

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David introduces this live panel and that we’re all here to talk about neurodiversity across generations. There is this potato that came up in Ireland, called lumpers—exploded the population, everyone grew these yummier, bigger potatoes. But a Spanish galleon brought mold that took out only the Lumpers—when we lose diversity, we had the Irish Potato Famine. Throughout the generations we’ve had different pressures to keep or lose different parts of ourselves.  Beginning with a cheesy icebreaker, the panelists introduce themselves - David Flink (co-founder of Eye to Eye National), (he/him), Zennial (born between 1979-1981), and ice cream. Claudia Bouchacort(she/her), Gen X, French fries. Marcus Soutra, elder millennial (remembers dial up sounds and getting one song downloaded during dinner time), French fries. Kayla Dumas (she/her), Gen Z (no knowledge of dial up sound), French fries and ice cream together. David (Kessler, SSPOD co-host, he/him), Zennial, French fries. Isabelle (Richards, SSPOD co-host, she/her), elder Millenial and the original AIM Dizzabelle (with no numbers), specifically Five Guys cajun spice fries with strawberry shake. When did you or your loved one first identify as neurodivergent? Kayla shares that she was a premie baby, and already qualified for early intervention, then when she went through the public school system, she realized she learned differently then the rest of her peers, it took more time to get information, spell things differently, kids start to pick at you. Her family went back and forth with the school district to get her properly tested, and it was a battle, but finally, in the 7th grade, she was diagnosed with dyslexia and dyslcalculia, but her family always knew. How did you family react to your diagnosis? Kayla’s family were totally fine, it wasn’t completely shocking, her uncle and grandfather both had dyslexia, and her grandmother immediately knew because they were high school sweethearts, and she’d help him with his homework, so she saw the signs and immediately knew. Marcus was identified in 3rd grade, sort of the “classic” story, first with dyslexia and then with ADHD. Everybody reading looked like a magic trick that he just didn’t know how to do. His family reacted in a complicated way, they weren’t sure how he would react to the label, his mom has been identified with dyslexia since, and she was fearful of that label, because in her generation, she was labelled “dumb” and “stupid,’ because she didn’t have the luxury that Marcus had of having dyslexia and ADHD identified. When Marcus first heard the word dyslexia, it was from his 4th grade classmate, Karen, who was the one woke Karen (poor Karens everywhere, btw), when they were grouped together in a reading group together. Marcus thought it didn’t sound good, and that was when his mom first talked to him about it. We’re starting to see the differences in how boomer parents reacted to these diagnoses. Claudia noticed that something was different about her son when he was a baby, and went to Dr. Google and researched, and he ended up being diagnosed with Autism Spectrum Disorder at 18 months, and has since been diagnosed with dysgraphia and dyslexia. David points out the differences in being diagnosed much earlier, and Isabelle notes that you have access to something like Google to get more information if your peers or family doesn’t have access to it. Claudia names that her generation was also prone to Googling harmful things, so she stuck to peer-reviewed, science in her research. David Flink names how different those early years of time, were for him. He is a White man in America, mom is an educator, they had some means, and he was first identified as “stupid,” long before he was identified as dyslexic. That identity still stays with him. We want to give him a big hug. There are parts of our identity that develop in the absence of information. For David, his symbol recognition disorder (form of dyslexia) was caught in 4th grade, because of his spelling, but no one caught his ADHD until he was in college. There’s a part of him that, in the absence of information, always thinks he is in trouble. And this connects to how people respond to our diagnosis. David names he hit the family jackpot, and someone else’s reality is so different. You can chart your life based on who you hang out with—it’s not talked about enough. What happened to those groups when you got your diagnosis? Marcus remembers being in a community of the “odd kids” or “bad kids” that was formed by accident, in a way. Marcus used to have to go to lunch five minutes before everyone to go to the nurse’s office to get his stimulant meds, and so all the kids who left to get their meds would end up sitting at the lunch table together. Kayla had a different experience, once she was diagnosed and her friends realized she was different, she had to let a lot of friendships go, specifically in middle school. Lots of friends weren’t supportive, though her family was. One kid in particular would say “oh, you’re going to the SpEd class” and she didn’t know what to say—they would say degrading things like “you’ll never go to college” and she was so young, she believed those things. She was bawling, hyperventilating, when she learned of her diagnosis, fearing “those kids were right.” Her mother countered this and gave her the example of the author of the “Here’s Hank” books, which helped her learn how to read—he was dyslexic, too. David points out that Kayla had to make choices in who she associated with, to discern who was a support and who was not. Claudia had a similar experience to Kayla, in that she and her son experienced a lot of exclusion; her family excludes them and they are rarely invited to events as a family. Her son was in a collaborative kindergarten, where half the students were neurodivergent or had LDs, half were not. Her son was invited to a birthday party in his class, and she RSVP’d, and it turned out his classmate was a neighbor, two doors down. They became friends and eventually friended each other on Facebook, and Claudia saw that the mom had posted “the only kid we were hoping would not RSVP is the only one who did, what is wrong with El Paso, TX?” They were also a White, military family in a predominantly hispanic area, and they got excluded a lot. It’s not funny to be marginalized and it takes so much courage for Claudia to say this because it is something we have to sit with. David Flink points out that here she is not alone, here she is with family. And we zoom out and acknowledge our large room filled with brilliant neurodivergent people in the audience, that this is part of what Eye to Eye and the Organizing Institute do, is create a safe space for neurodivergent people to come together; here we are not alone. David names the theme: of being marginalized, losing friends, feeling like you’re stupid because you have to take medicine. We all share parts of that story, it’s part of our neurodivergent culture. 

Lumpers and Potato Famine

To learn more about Eye to Eye National, visit www.eyetoeyenational.org.

Dyslexia: (from Mayo Clinic): a learning [difference] that involves difficulty reading due to problems identifying speech sounds and learning how they relate to letters and words (decoding). Also called a reading disability, dyslexia is a result of individual differences in areas of the brain that process language. For more on this, check out the Black and Dyslexic podcast hosted by Winifred A. Winston and LeDerick Horne. 

Dyscalculia (from understood.org): a learning disability in math. People with dyscalculia have trouble with math at many levels. They often struggle with key concepts like bigger vs. smaller. And they can have a hard time doing basic math problems and more abstract math.

Here’s Hank book series by Henry Winkler and Lin Oliver (yes, that Henry Winkler AKA The Fonz)

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Cover Art by: Sol Vázquez

Technical Support by: Bobby Richards
Special Thanks to our amazing panelists: Marcus Soutra, David Flink, Kayla Dumas, and Claudia Bouchacourt for their courage, enthusiasm, and willingness to be vulnerable and real. 
Also, so grateful for everyone at Eye to Eye National: Sabrina Odigie (Eye to Eye Executive Assistant) for her logistical wizardry, Alicia Siegel (Eye to Eye Director of Development) for her warmth, welcome, insight and planning, Alexandra Claeys (Eye to Eye Director of Community Leadership) for letting us join her awesomely organized event, Amanda Feliciano (Eye to Eye Outreach and Onboarding Associate) and Philister Lukacevic (Eye to Eye Director of Marketing and Communications) for his patience and help in getting these edits and materials out there! And to everyone at the conference who came to our recording and co-created such a welcoming and safe enough space, we are so grateful you came!