WEBVTT
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there's something happening at 2:00 AM across the world in Toronto.
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A 34-year-old marketing manager, PA's mid scroll, her thumb frozen over the phone screen.
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In Mexico City, a teacher sits up in bed, suddenly wide awake.
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In Los Angeles, a software developer screenshots a video for the seventh time This week, they're all watching the same thing.
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Someone dancing while listing traits they recognize in themselves.
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Someone explaining why certain sounds feel like physical pain.
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Someone describing the exhaustion of pretending to be someone you are not every single day.
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The autism hashtag on TikTok has 11 billion views, not million, billion with a B.
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That's more than the population of planet Earth.
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Think about that, but this isn't a story about social media trends or generational panic.
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This is a story about what happens when millions of people simultaneously realize they've been living with the wrong instruction manual for their own minds.
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What you're about to hear isn't just about autism or TikTok, or even diagnosis.
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It's about the largest act of collective self-recognition in human history, and it's happening right now.
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One scroll at a time for those just joining our community, I'm Anita, your host.
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Autistic gifted, late diagnosed, and someone who spent decades thinking she was failing at being human before realizing she was succeeding at being neurodivergent.
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I'm also a researcher, a former law professor, and someone who believes that rigorous inquiry and lived experience aren't opposites.
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They're dance partners.
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Neuro rebel exists because the conversations about neurodivergence happening in academic journals, clinical settings and mainstream media often miss the most important voices.
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Ours.
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We're here to bridge the gap, to bring research informed perspectives to real human experiences, and to challenge every assumption about what it means to have a different kind of mind.
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We're not here to romanticize, neurodivergence, or pathologize it.
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We're here to understand it.
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To honor its complexity and to build a world where every kind of mind can thrive.
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Because when we understand ourselves better, we don't just change our own lives, we change the systems around us.
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This is the Neuro Rebel Podcast.
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Today we're talking about social media and self-diagnosis, what it means, why it matters, the truth, the ugly and the beauty of millions of people discovering themselves.
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Through algorithms.
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We're exploring how TikTok became an accidental therapist, why YouTube turned into a wisdom library, and what happens when people who've been invisible finally make themselves seen?
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Every revolution starts with recognition.
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That moment when what was invisible becomes undeniable.
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When what was whispered becomes spoken, when what was pathologized becomes understood.
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For most of recorded history, if you were autistic and didn't fit the narrow stereotype of a white boy obsessed with trains, you were invisible.
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You were quirky, you were difficult.
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You were too sensitive or too intense, or trying too hard, or not trying hard enough, but you were never autistic because autistic people, according to the textbooks, didn't look like you.
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Then something unprecedented happened.
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The people who had been invisible started making themselves seem not in medical journals or research papers.
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On the platforms where real life happens, where authenticity gets rewarded with hearts and shares and that most precious currency of all recognition.
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Today we're exploring three interconnected stories about what happens when the internet accidentally becomes therapy community and mirror all at once.
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Stories that reveal why millions of adults are saying, wait, is that me?
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why?
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The answer to that question is reshaping everything we thought we knew about human minds.
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Let me tell you about Sarah.
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She's 42 lives in Atlanta, works in tech, and has spent her entire life being told she's too smart to be autistic.
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As if intelligence and autism were mutually exclusive somehow, as if being articulate, disqualified you from having a neurodevelopmental difference.
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Sarah is black, which adds another layer of invisibility.
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The diagnostic criteria for autism were essentially written about white boys in the 1940s.
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They're still largely based on observations of white boys.
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So when a black woman presents with autism traits, the system often doesn't know what to do with her.
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Sarah found autism TikTok during the pandemic.
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She wasn't looking for it.
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She was probably watching other videos about her interests, but then this woman appeared on her feet talking about masking, no, not COVID masking, but social masking the way you learn to hide parts of yourself in order to fit in.
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This creator described something that made Sarah's heart race with recognition, watching other people to figure out how you're supposed to act in social situations like you're an anthropologist studying a foreign culture, always observing, always adapting, always performing.
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Later Sarah, said that she just started crying right there in her bed at two o'clock in the morning.
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Because that's exactly what she'd been doing her whole life.
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Sarah spent the next six months in what she calls her autism research phase.
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She wasn't casually browsing,.
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She was conducting a full scale investigation into her own life.
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She made spreadsheets comparing her childhood experiences to autism criteria.
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She took every online quiz she could find, she reached out to other autistic people.
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She read research papers.
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Even her partner had started joking that she had obtained a PhD on autism by the time she was done.
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Now, some people hear this and think, see, social media is making everyone think they're autistic, but that misses something crucial.
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Neurotypical people don't usually spend six months obsessively researching neurodevelopmental conditions.
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They might watch a video and think, huh, that's interesting, and then move on to cat videos or something.
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The tip of engagement, the resonance, the way it reorganizes your entire understanding of yourself.
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That is not casual curiosity.
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That's recognition.
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Seeking recognition.
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Meanwhile, 5,000 miles away in Buenos Aires, Claudia is having her own moment of recognition.
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She's 28, a software engineer, and has always been the weird smart girl in her family.
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In Argentine culture, especially for women, being different isn't really an option.
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You're supposed to be social, family oriented, intuitively good at reading people's emotions.
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Claudia was none of those things.
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She was the girl who had to be forced to attend family functions, who couldn't understand why everyone was always so indirect about what they really meant.
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Her family just said she was being too westernized, as if her struggles with social interaction were a cultural failing and not a neurological difference.
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Claudia discovered autism content through YouTube, not tip TikTok.
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The longer form videos allowed for a more nuanced discussion of how autism might look like in different cultures.
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She found a woman talking about autism in South American families, describing the pressure to be the good daughter to intuitively understand family dynamics and to be naturally social and how devastating it feels when your brain just doesn't work that way.
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It was the first time Claudia had ever heard anyone describe her exact experience.
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The first time someone said that maybe the problem wasn't her being deficient at being who she was.
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Maybe she was just autistic and a woman, and those two things could coexist perfectly well.
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Here's what the research tells us about this phenomenon.
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Dr.
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Scaffold's 2024 study published in the Journal of Autism, interviewed autistic adults about their social media experiences.
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They found something fascinating.
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People weren't turning to social media because they preferred it to professional resources.
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They were turning to social media because professional resources had failed them.
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One participant put it perfectly.
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Official health pages are like instruction manuals written in a language.
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I don't speak for a device I don't own, but here's where it gets complicated.
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The Drexel University analysis of 133 top performing autism tiktoks found that only 27% contained accurate information.
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41% were completely wrong, and 32% were so over generalized that they were essentially useless.
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So we have this paradox.
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Social media is simultaneously the most accessible source of autism information and the least reliable.
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It's like having a library where three quarters of the books are fiction, but they're filed in the nonfiction section.
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But accuracy isn't the whole story.
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Sometimes even incomplete information can be life changing when you've had no information at all.
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Let me tell you about Marcus, a 34-year-old teacher in Manila.
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He grew up in a culture where mental health discussions are still emerging, where Neurodivergence is often misunderstood as simply being different and dismissed.
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Marcus saw this video of a guy explaining executive dysfunction.
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The creator described it as your brain knowing what you need to do, but being unable to make yourself do it.
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Like there's a disconnect between intention and action.
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Marcus had been calling himself lazy for 35 years.
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His family had been calling him lazy.
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He thought he was just morally deficient somehow that he lacked willpower or discipline.
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But this video suggested it might be neurological, that his brain might literally process tasks differently.
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It wasn't entirely accurate.
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Executive dysfunction can happen for lots of reasons, not just because of autism, but it gave Marcus a starting point.
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It gave him language.
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It gave him a different framework for the first time in his life.
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He had words that weren't lazy or unmotivated or lacking discipline.
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Executive dysfunction opened up a new world for him.
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This is what philosophers might call the hermeneutics of recognition, the process by which we come to understand ourselves through the language and frameworks available to us for decades.
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The available frameworks for people like Sarah or Claudia and Marcus were pathologizing.
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You're broken, you're deficient, you're failing at being human.
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Social media offered different frameworks.
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You're artistic, you're neurodivergent.
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You're playing at life on a different difficulty setting, but with different abilities unlocked.
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The question isn't whether every viral autism video is accurate.
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They're not.
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The question is, what does it mean when millions of people find more recognition in 62nd videos than in decades of medical encounters?
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It means our systems have been failing people, and when systems fail, people create alternatives.
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To understand why people turn to social media for autism information, you need to understand what I call the diagnosis desert.
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The vast wasteland between needing answers and getting them, let me paint you a picture with numbers that should disturb us all in the United States.
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A comprehensive autism evaluation costs between 3000 and$5,000.
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Most insurance companies treat adult autism assessment like cosmetic surgery.
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Nice to have, but not medically necessary.
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The waiting lists stretch between six to 18 months in major cities, in rural areas.
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You might as well be waiting for gado, but it gets worse.
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Let's say you navigate the financial barriers.
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Wait the months and finally get an appointment.
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You might encounter a clinician whose knowledge of autism crystallized around 1994, who thinks you can't be autistic if you make eye contact, who believes autism doesn't affect women, people of color, or anyone whose learned to mask their traits for survival.
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I experienced this myself.
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One psychiatrist told me there was no way I could be autistic as I was speaking eloquently and looking at him in the eyes, I was a tenured law professor, someone who could advocate for myself in multiple languages.
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And I was still told I was, quote, too successful to be autistic as if autism and achievement were mutually exclusive, as if decades of exhaustion from masking didn't count as evidence.
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if someone with my privileges struggled to get taken seriously, imagine what it's like for other people.
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the barriers multiply.
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Across cultures and continents.
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In Mexico, autism prevalence is reported as in one in 115 compared to one in 32 in the United States, and that's not because Mexican brains are magically less autistic.
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It's because the diagnostic infrastructure barely exists.
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Research from Mexico's national health system reveals a stark reality.
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Only 13% of primary healthcare centers have trained personnel for autism interventions.
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The average time to diagnoses is 27 months, requiring contact with three different professionals.
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The diagnostic tools are predominantly in English, calibrated for American populations.
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When families do seek help, they often encounter professionals operating with outdated knowledge.
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A 2018 government report documented these massive infrastructure gaps.
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What are families supposed to do while navigating these barriers?
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Of course, they turn to the internet.
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Of course, they seek community wherever they can find it.
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And this is where social media becomes not just an alternative, but a necessity.
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When official channels offer only silence.
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When professional help is either unavailable or unaffordable.
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When cultural barriers make discussion impossible, the algorithm becomes accidentally therapeutic.
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Let me tell you about Elena, a composite of dozens of real experiences from across Latin America.
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She's 33, a teacher in Guadalajara and has spent her life being called the weird one.
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Elena's family loves her, but they've never understood her.
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Why she needs the house to be quiet when she gets home from work.
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Why certain textures make her feel physically ill.
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Why?
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She can teach 30 children all day, but struggles to make small talk with one colleague.
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Elena found autism content on Instagram through Spanish language accounts.
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Suddenly she was seeing women who looked like her, who spoke like her, describing her exact experiences.
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Not just the struggles, the strengths as well, the way they notice patterns others miss the deep empathy that people mistake for being too sensitive.
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The intense focus that can solve complex problems, but gets overwhelmed by simple social interactions.
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Elena's story illustrates something crucial.
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Representation matters in ways that transcend accuracy.
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When you've never seen yourself reflected in medical literature, even an imperfect mirror can be revolutionary.
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the research bears this out.
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A 2021 study found that self-diagnostic tools can be quite accurate and specific for autism identification.
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Another study showed that self-identified autistic individuals.
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Strongly resembled their formally diagnosed counterparts on measures of autism traits, quality of life, and identity formation.
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But here's what's really interesting.
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The study also found that learning about autism through social media advocates correlates with stronger autistic identity formation than that of learning through parents or professionals alone.
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Think about what that means.
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The people creating content on social media, mostly autistic individuals sharing their lived experiences are more effective at helping others understand autism.
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Then the clinical establishment that's been studying it for decades.
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Of course, there is a dark side to this democratization of information.
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The same algorithms that help people find community also create echo chambers that can amplify misinformation.
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Dr.
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Jennifer Katzenstein from John Hopkins describes what she's been seeing in her practice.
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Adolescents arriving already convinced they have autism bipolar disorder, A DHD, sometimes all three.
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They've watched hundreds of videos, taken dozens of online quizzes join multiple communities, and they use this clinical language, but not always in clinically accurate ways.
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The challenge isn't that they're wrong about struggling.
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They're clearly struggling.
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The challenge is that they have self-diagnosed based on content that's often over generalized or simply inaccurate.
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This tension between access and accuracy between community wisdom and clinical expertise sits at the heart of the social media diagnosis phenomenon..
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It's not that people prefer TikTok to medical care.
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It's that TikTok is available when medical care isn't.
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Which brings us to perhaps the most important question.
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What happens when people do find community and recognition online?
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What does that mean for their lives, their relationships, their understanding of themselves?
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Community doesn't form around shared confusion.
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I.
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It forms around shared recognition and what we are witnessing across social media platforms isn't mass delusion.
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It's mass awakening to realities that have always existed but rarely have been named.
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The Autistic Self-Advocacy Network, which is the leading organization of autistic people by autistic people, puts it beautifully.
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When we say autistic community, we mean everyone.
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Diagnosis or not.
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This isn't permissiveness, it's pragmatism.
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Born from understanding that formal diagnosis is often a privilege, not a given.
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Let me tell you about the transformation that happens when people find their tribe online.
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Before Sarah found autism, TikTok, she thought she was broken she thought everyone else had received some manual for how to be human that she had somehow missed.
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She was constantly exhausted from trying to figure out the rules of social interaction from forcing herself to make eye contact, and from pretending that small talk was enjoyable.
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Instead of torturous finding other people who described her exact experiences, Sarah said it was like suddenly realizing you've been speaking a second language your whole life, no wonder your jaw hurt at the end of the day.
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From all of that translation, research validates what Sarah experienced.
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Studies show that connecting with autistic communities online or offline correlates with better mental health outcomes, stronger identity formation, and reduced feelings of isolation.
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It's not just nice to have, it's psychologically necessary, but let's be honest about the complexity here.
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Not all online content is created equal, and not all community connections are uniformly positive.
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YouTube emerges as an unexpected hero in this story.
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While TikTok gets the headlines and criticism, YouTube quietly hosts the most accurate autism content.
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Research shows that only 2% of autism YouTube videos contain stigmatizing content compared to the much higher rates of misinformation on TikTok.
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Claudia found her salvation on YouTube.
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She discovered these long form videos by autistic women from different backgrounds.
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They talked about masking about sensory issues, about the way autism intersects with cultural expectations for women.
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For the first time, Claudia heard someone say that you could be autistic and successful autistic and empathetic autistic and interested in people.
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The clinical descriptions she'd read made autism sound like a complete inability to connect with others, but these women were describing a different kind of connection, deeper but more effortful, genuine, but exhausting.
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What Claudia found represents something revolutionary.
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Autistic people defining autism for themselves rather than being defined by external observations of their behavior.
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This is what scholars call an epistemological shift, a fundamental change in how knowledge is created and validated for generations.
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Autism research followed a predictable pattern.
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Non-autistic researchers studied autistic people, usually children, usually boys, usually through the lens of deficit and problems.
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Autistic people were the objects of study, not subjects with expertise about their own experiences, but social media has inverted this hierarchy.
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Now, autistic adults create content about their own experiences.
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They define the terms, they share strategies that no researcher has studied because no researcher thought to ask.
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They've created what might be called a wisdom commons, collectively generated knowledge that's both deeply personal and broadly applicable.
00:26:37.057 --> 00:26:44.708
Now we need to talk about the puppet master behind all of this, and that's the algorithm itself.
00:26:45.337 --> 00:26:55.032
Because understanding how content reaches people is crucial to understanding why this phenomenon has exploded in the way it has.
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Algorithms are desire mapping machines.
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They are designed to figure out what keeps you engaged, and they've discovered something profound.
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Nothing captivates quite like the possibility of self-understanding.
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Dr.
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Katzenstein describes what she's witnessing as confirmation bias on steroids.
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You watch one video about executive dysfunction and suddenly your entire feed becomes a graduate seminar On neurodivergent traits, the algorithm doesn't care about accuracy, it cares about engagement, and nothing drives engagement like content that makes you think, Hey, that's me.
00:27:43.354 --> 00:27:50.858
Facebook's algorithm creates what researchers call the strongest eco chambers among all major platforms.
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It's like an overprotective parent constantly saying, oh, you like that?
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Here are 47.
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More like it.
