Brave

Transcript

Why Diagnosis Rates Rise

Trust, Stigma, And Hidden Histories

Social Media And Self Recognition

How ADHD Looks Different In Women

Vaccine Myths And Real World Risk

Different Is Not Broken

Diagnosis, Advocacy, And Critical Thinking

Final Takeaways And Goodbye

SPEAKER_00 0:38

Hello and welcome to Excuse My DHD episode number 45. Brave. I'm your host, Jeanette, and I am navigating ADHD one distraction at a time. This episode started as an angry rant. I wrote in about 15 minutes after JFK's autism speech last year. And here I am a year later, apparently still mad. But you know, life happens and things get in the way, and writing an episode and recording it are two different things. But anyway, if you were a first-time listener, thank you for tuning in. And if you're a turning listener, thanks for coming back. So let's get into it. I wasn't sure if this was if I was ever going to record another episode. Honestly, I thought I might be done. It's been about two years since I last recorded, and I just felt like I didn't have anything to say that other people weren't already saying better. There are so many TikTokers and YouTube creators who are more creative than I am. Thank you, Imposter Syndrome, for always being there when I need you. But that's okay. I started this journey to raise awareness and help people feel us alone. And I think I've done that. And then in April 2025, JFK Jr. decided he wanted to give a speech about autism, and I got mad. Like, really mad. Mad enough that I started this episode and wrote the first draft in about 15 minutes. And like I said, life happens, and here we are a year later. And of course, it's still making me mad. So mad I could have sworn he just gave the speech a couple months ago. Time blindness. Anyway, Sarah Borellis says it well in Brave when she says you can use your words as a weapon or a drug. And that's exactly what this administration does best. They use words as weapons. We are watching how language around autism and ADHD is being used. And so I'm going to take her advice and say what I want to say. So let's talk about some of the key points from the speech. First, though, I do want to preface this by saying I am not an expert. I do not hold a degree in autism or ADHD research. I'm just someone living it, researching it, and trying to understand it. So let's start with the increase in prevalence in diagnosis rates. And I hear this all the time that autism and ADHD are diagnoses that are exploding. And those of us with ADHD who take medication have definitely seen the effects of this through, you know, medication shortages. How many medication shortages have there been in the last two years? A lot. And I know it's not just because more people are taking it, but that I think is a pretty significant reason. And there's other factors too that combine just it easily explains most of this so-called alarming increase. Great DMX. Let's add up all the factors. Better diagnostic tools, reduced stigma around mental health, increased access to care, more providers educated in autism and ADHD, greater awareness that both conditions are often inherited. And that last one's huge because as children are getting diagnosed, their parents are realizing that they are neurodivergent too. So they are also getting tested. It's like a two-for-one special, right? But this really isn't different from what happened with COVID or other conditions where diagnosis rates suddenly increased. The better the COVID test got, the more people got tested, the more people got tested, the more positive case we found. Access increased, awareness increased. And so diagnosis increased, cause and effect. The opposite is true as well. I mean, people quit testing and suddenly COVID went away, right? No, people are still getting COVID, but we don't really hear about it as much because we aren't really testing for it like we were. It's the same thing with ADHD and autism. And then the more research that we do, the more we learn about neurodivergence, the better our diagnostic tools become. Kind of like AI, the more information you feed it, the more accurate it gets. Researchers have also caught on to the fact that many people, like me and likely you, that were diagnosed later in life, develop coping mechanisms like masking to appear normal. So diagnostic criteria has had to evolve to account for that. They also learn that these conditions can present differently in adults and teens than they do in children, and differently in men than they do in women. Hormones can also affect how symptoms present, which means traits can look and symptoms can look different in children, in teenagers, in adults, women going through perimonopause or menopause. And you know, a huge culprit of this is estrogen, followed by progesterone, cortisol, testosterone. I won't go into the detail here about all of that because it warrants its own episode. Maybe I'll do that one next. But the longer someone goes undiagnosed, the more likely they are to mask, to mimic neurotypical behavior, or to turn to drugs and alcohol to self-medicate because they don't understand why they feel different. And then there are cultural, religious, socioeconomic, and demographic factors that impact whether someone gets tested in the first place. There's still huge distrust of health care in some communities, especially in Appalachia and within the black community. And honestly, you can understand why when you look at things like the Tuskegee study or what happened to Henrietta Lax. And if you don't know what these were, look them up. I will put links to the show notes because they matter. They still matter today. And it has taken decades for researchers and medical professionals to rebuild any kind of trust and reduce stigma within those communities. And we still have older generations who believe exactly what RFK is pushing, that autism and ADHD aren't real, that they're overdiagnosed or they're caused by vaccines. And a lot of that comes from the fact that they didn't hear about it growing up. But not hearing about something doesn't mean it doesn't exist or it didn't exist. Mental illness and neurodivergence were hidden. Families kept it quiet. They didn't talk about family business with outsiders. Look at Rosemary Kennedy. She struggled with mental illness, was hidden away, and eventually subjected to a forced lobotomy. And sadly, that kind of thing wasn't uncommon. Decades ago, people with mental health conditions were often hidden, institutionalized, or just discarded by society. Even today, we still have problems with people with mental illness being homeless on the streets. But of course, people didn't hear about it the way that we hear about it now. And throughout history, there have been many people we see as geniuses or extraordinary talents that some historians and researchers believe may have shown autistic traits and symptoms, including Albert Einstein, Isaac Newton, Charles Darwin, Nikola Tesla, Michelangelo. Obviously, there's no proof, but again, diagnostics, research. But today there are also many public figures that openly discuss being on the spectrum or being neurodivergent, including Temple Grandin. There was a movie that Claire Danes did about her, Daryl Hannah, Anthony Hopkins, Elon Musk, Tim Burton, Tim Burton, sorry. But I think one of the biggest differences in recent years is social media. There are entire communities on Facebook, Instagram, TikTok, YouTube, there are podcasts. They're all dedicated to education, shared experiences, just like this one. And information is just more widely available now than it ever was before. You have more access to things online than, you know, even when I was in school, however many years ago that may have been, back when the dinosaurs roamed, according to my kids. I don't know. But nobody ever talked about it. You didn't have the internet. We still had the Encyclopædia Britannica and the Dewey Decimal system. So yeah, I'm old, I know. But creators are breaking stigma apart brick by brick through shared experiences and bringing attention to things people were always told not to talk about. People are being vulnerable in a way that we haven't seen before. People are seeking themselves or seeing themselves in these creators. They're listening to medical professionals who are also creators and trying to dispel misinformation. They're learning new information, they're asking questions and becoming more self-aware. And that self-awareness leads to curiosity, which leads to testing and self-advocacy. If COVID was good for one thing, for anything, it helped explode social media and connected people in ways that never were before. And for the longest time, women were and honestly still are. But for women, it's different most of the time. For women, we tend to be more inattentive and internalize the hyperactivity, where boys tend to be more externally hyperactive. And granted, I said tend to be. Autism diagnoses usually happen after the age that children receive their vaccines. So, okay, I can kind of understand how some parents emotionally connected these dots even when the science doesn't support it. Because as a parent, it's hard. You want to trust that your doctors are making the best decisions for your family and your child, and fear can make people vulnerable to misinformation. But we're already seeing the consequences of declining vaccination rates. Diseases we thought were under control are returning, like measles, mumps outbreaks that continue to increase every year in the US. For me, the decision was easy. I trusted my doctor, but I also did my own research and I asked questions. For me, it was a matter of looking at the risks and the risks associated with the vaccines for me were far lower than the risks of the diseases that they help prevent. RFK talks about autism and ADHD, like there are problems that need to be solved. Like a work camp is gonna make it all go away. We are neurodivergent. That means our brains work differently from what society considers to be normal. It does not mean that we are broken. And it took me a very long time to believe that. And sometimes in moments of weakness, I still find myself going back to that. Most of my life, I thought I was broken because I wasn't like everyone else. Everything felt harder, school was hard, friendships were hard, life just felt hard. And I knew early that I was different, but never exactly how or why. And there were times I didn't want to keep going because it all felt so overwhelming, so crushing, so hard. But now I wouldn't necessarily choose to be neurotypical if I could. Sure, we still fight sometimes, maybe a lot, because hormones, but it's mine and it's the only one I have. Are there downsides? Absolutely. Mostly because the world was not designed for us. It was built around neurotypical people and expectations. It's a world that expects everyone to function the same way. We are triangle pegs in round holes that don't fit. I don't want to say square because we're not boring. But honestly, normal is kind of boring sometimes. And I love that when I read a book, I can hear characters' voices and see the story play out like a movie in my head. I love that when I'm trying to solve a problem or figure out how something fits together, my brain can visually see it like a 3D image and manipulate it from different angles. I love that when my life looks chaotic, I can tell you exactly which pile, which stack, and how far down a wrinkled post-it note from six months ago is sitting. None of us are perfect. Neurodivergent people absolutely do things that drive neurotypical people crazy. Sometimes, maybe a lot of the times, but neurotypical people aren't living in a world that constantly forces them to question every interaction they've ever had. You don't spend five years replaying a conversation wondering if someone secretly hates you because of one sentence that came out wrong, may have come out wrong. You don't spend your entire life masking and pretending to be someone you aren't just to fit in, even to the point that it you don't even know who the real you is. Neurotypicals will never understand how something as simple as taking a shower can seem as daunting as climbing a mountain. It took me 37 years to get diagnosed. 37. Because there weren't enough diagnostic tools, because women are constantly mixed diagnosed, because mental health stigma still exists, because research historically centered white men first, because autism and ADHD present differently in women than men and boys and girls, than boys. And because apparently, if you're a woman, everything gets labeled anxiety or depression first. But despite struggling, I built a life. I have a family that loves me. I'm married, I have children, I pay taxes, I have worked multiple jobs, many of which were promotions from previous positions. But granted, I do also still get bored and feel like I have to move sometimes. But I have a bachelor's and a master's degree. I've successfully managed teams and built a career. I am not formally diagnosed with autism, but every sign, every online test point towards me being on the spectrum. But what scares me most is an autism. It's ignorance, it's stigma and fear. Because fear keeps people from asking questions. Fear keeps parents from seeking help for their children. Fear keeps adults like me from getting diagnosed until they're nearly 40 years old after spending a lifetime wondering why everything felt harder for them than it had to for everyone else. A diagnosis doesn't create autism or ADHD. It gives people a language for something that was already there. It acknowledges what we already knew, that we are different. It lets us find tools to help us navigate and thrive in a neurotypical world. It gives people answers, a community, the ability to stop blaming themselves for struggling in a world that was never designed for them in the first place. Diagnosis was a life changer for me. It didn't magically fix anything. Medication didn't magically fix anything. I still struggle, I still overthink, forget things, get overwhelmed, I still have depression. It is a comorbid factor. Anxiety is too. You can have multiple things at once. But for the first time in my life, I understood myself. And there's something so powerful about finally realizing that it wasn't always your fault that you weren't broken to begin with. And remember, knowledge is power. The more you understand yourself, the more self-aware you become, the better advocate you are for yourself. And not just for yourself, but for your kids, for your family, for others. And that means asking questions and more questions and continuing to ask them until you get the answers you need. But don't, please don't just blindly listen to politicians, regardless of what side of the aisle they're on, or influencers, or even me. Do your own research. Talk to qualified professionals. Read the research of peer reviewed studies. I know they can be hard to read sometimes. Times. And I know they can be boring, but they're important. Let an AI give you the Cliff Notes version of one if you have to. But learn, listen to livid experiences, and most importantly, think critically about the information that you're getting. Because when people stop asking questions and stop listening to professionals, stop thinking critically about the information they're getting and just start letting fear make decisions for them, that's when misinformation spreads. That's when measles start spreading again. It's when we let people tell us whatever they want and we believe them. Different is not broken. Neurodivergence is not broken. We do not need to be erased or feared or fixed so society can feel more comfortable or put in work camps. We need to be understood, supported, accepted. We need people to stop using us as political talking points, as weapons for their agendas, and at the end of the day realize that autism and ADHD are not moral failures, parenting failures, or evidence that society is collapsing. They're part of human diversity, a word that they are trying to make sound bad. That we are different now. The difference now in people finally feeling safe enough to talk about it. And despite everything, despite the stigma, the misinformation, the years of feeling different, I am glad I know who I am. Because after spending most of my life trying to become someone else, I finally realized I wasn't ever supposed to be neurotypical. That's okay. So for today, that's all I have. Until next time.