The Spectrum 3

Episode 3: “The Camera Doesn’t See Us”
Why do media stories about autism so often focus on the feel-good, high-functioning side—and ignore the harder, messier truth? In this episode, we follow two families on opposite ends of the spectrum as they confront what it means to be celebrated, erased, and left out of the narrative altogether. Because when only certain stories are told, entire lives are silenced.

Transcript

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Welcome back to the Tells and Exhales of caregivers. I'm your host, Beverly Nance, and I'm so grateful that you're here. Whether you're listening from the beginning or you're just joining us for this series thank you for showing up for these stories. Telling the truth about caregiving, especially when it comes to autism, isn't always easy. But it matters because too many families are carrying this silently, and too many stories are never told at all. So take a deep breath, settle in and know this. You're not alone, not in the struggle, not in the love, and not in the quiet moments when no one's watching. I've got a lot to say today, and I know you'll feel it too. You may have heard the recent comments from Robert F. Kennedy Jr. About autism. Some people applauded what he said while others were outraged. And while I don't typically wade into politics on this podcast, I do pay attention because when the conversation is about our kids, our families, and our caregiving realities. I'm already in it. So let me say this. What many families are going through is exhausting. It's isolating. It's often unsupported by schools systems, and even the media but reducing our loved ones to non taxpayers, diaper wearers, and other root names. Well, that's not advocacy, that's reduction. The truth is. Families raising children with profound autism are living through something. The cameras rarely show, not because it's not real, but because it's not comfortable, and that's what today's episode is about. Autism is a spectrum, but when it comes to headlines, you wouldn't know it. You've seen the stories. We've all seen the stories. The teen with autism, who sings the national anthem, the boy who memorizes every train stop in New York. The young woman who starts a thriving soap business with her mom. The stories that make us smile, that make us feel good. But where are the stories about the kids who are still in diapers at age 18? The ones who hit themselves when the lights are too bright. The parents who can't sleep, can't work, can't plan for the future because the system has forgotten them. Those stories, they don't trend. This is the spectrum. Episode three, the camera doesn't see us It's April Autism Awareness Month. And in a midsize newsroom at a local news station, a producer named Elena flips through a stack of pitches. She reads the one about a teen with autism who built a replica of the Eiffel Tower using Popsicle sticks. While that's charming, visual and heartwarming, she reads another about a mother struggling to get in-home care for her 22-year-old son who has severe autism and aggression. The story involves Medicaid waivers, behavioral crisis teams, and adult diapers. Elena circles the Eiffel Tower story. She puts a big red circle around it. People wanna feel good. She says tapping her desk. We can't hit them with trauma every week. Her colleague Jake Hesitates, but aren't we leaving out half the story? Not half. She replies just the hard half. You remember the Martins, michelle Martin doesn't see herself as media savvy. She's a mom, a researcher, a believer in the power of storytelling. So when Sean, who is now attending community college is asked to speak at the College's Autism Month event, a local journalist reaches out. Michelle is nervous but thrilled. People should see what's possible. She tells her husband James. People should see him. And they do. The article is clean and hopeful. Sean's photo is bathed in soft light. The headline reads, autism Doesn't Define Me. Teen Shares Insight inspires others. Michelle saves the article, and shares it with pride. We needed this she whispers. Karen Sadler. Who lives down and across the street from Michelle scrolls through the article on her phone. The title alone stings. Hmm, doesn't define me. It defines everything. Greg, her son is home pacing, chewing a sock. He hasn't spoken in 22 years. She's used to not being seen, but now it feels like erasure. Okay. She types a comment under the article. I love this story, but please also highlight families whose children are nonverbal, incontinent, and require 24 7 care. We exist too. Her comment gets no likes. It's buried beneath the emojis and applause back at the newsroom. Jake is pitching again. He brings up a local family. It's Karen's family whose son was denied crisis support when he injured himself during a meltdown. They've been waiting on a waiver for seven years. Elena listens, then leans back in her chair. Hmm. Is he verbal? No. Does he do anything that we can show visually? He rocks. He hits himself. Well, that's not gonna fly before dinner. They don't reject the pitch. They hold it for another time, A time that never comes. Riley Martin Reposts. Sean's article on her Instagram. So proud of my brother. Hashtag autism awareness, blue heart emoji. Maya Sandler sees it. She doesn't comment. She doesn't share. She remembers what it felt like when her brother broke her iPad during a meltdown in 10th grade. No one wrote about that. She opens a note in her phone and writes Awareness means nothing. There are parts of this life that aren't cute or postable Then she deletes it. What's the point? Michelle meets Karen at a local autism parent meetup. They used to be close back when their sons were little before their lives diverged. Michelle unaware says, you should write something about Greg. People would listen. Karen forces a smile. People don't want to read about kids like Greg. Michelle starts to speak, then stops because deep down, she knows it's true. Back at the news outlet, jake pulls the numbers after the Popsicle stick Eiffel Tower story Airs it's the most click story of the week. He checks a different story, an older one, about a mom who had to call 9 1 1 because her autistic son had become aggressive. It had 23 views. It's not personal. Elena says it's packaging, but it is personal to families like the Saddlers. It's everything to understand why Jake's pitch never made it past Elena's desk. You have to understand what the media looks for and what it avoids. When you think about the media and who they usually interview about autism there are three things. Number one is the highly verbal adults on the spectrum. The reason they do that, they can articulate their experiences in ways that are accessible to neurotypical audiences. For example, let's take Temple Grandin She's frequently featured because she's a professor and author and can vividly describe how her mind works. She fits the different but brilliant media family mold. Also, they interview individuals who are tech savvy, artistic, musical, and or entrepreneurial are also common. Two, they also interview the parents of high functioning children. And the reason they do that is because these parents can often present a narrative of challenges overcome with a hopeful or heartwarming arc. They're seen as relatable. They often are interviewed on morning shows, parenting magazines, awareness month pieces, and three, they interview advocates for major non-profits. And the reason they do that, they're trained to speak publicly and tend to focus on mainstream messaging, which is acceptance, inclusion, and awareness, often without diving into the harsher realities of profound autism. So you wanna know who gets left out. I got three of those as well. Number one, non-verbal individuals with high support needs rarely interviewed directly because of communication barriers. They're often ignored and their support staff or families are rarely invited to speak for them. With nuance number two, parents of children with severe behaviors often dismissed as too intense, too negative, or too controversial. The media avoids stories involving adult diapers, 9 1 1 calls, aggression or lifelong care, and number three. The siblings, the emotional toll on siblings like Riley and Maya is almost never featured. When it is, it's usually a single quote, not a whole story. If you're wondering, why does this happen, well, it's because the media likes simplicity. Nuanced stories require time, context, and emotional complexity. Things that don't fit in a three minute segment or 800 word article. I'm not gonna make it. They like the feel goods'cause feel good sales stories that make audiences feel hopeful are easier to digest and share. Also, discomfort equals silence. Severe autism, aggressive behaviors, adult caregiving. These challenge our ideas about progress and success. The emotional toll of erasure is quiet devastation for Karen Sadler. It's not just that her son Greg isn't seen, it's that he's treated as if he's not worth seeing. So you wonder what erasure feels like for Karen? Karen shared it feels like shouting into a void every time she shares a post about Greg. His needs, his progress, his challenges. It gets no engagement, no comments, no shares. She sees other autism posts go viral, but hers are met with silence. It begins to feel like people would rather scroll than confront the reality of her child's life. It makes her question her son's value, not in her heart, but in the eyes of the world, if only the inspirational stories make it to the news. What does that say about the rest, about Greg, about her family? It makes her feel like a bad mother for even wanting the recognition. She tells herself, this isn't about attention, but some days it's about being acknowledged about someone saying, I see you. I see how hard this is. I see how hard you're working. I see him. It isolates her from other parents, even ones that she used to lean on her friendship with Michelle feels strained. Now. She wants to be happy for Sean's success, but there's a painful mirror. It's not jealousy, it's grief, and it also chips away at her hope. Advocacy feels performative. Systems feel. Impenetrable. And if Greg's story isn't even seen, how can anything ever change what she told me privately, she quote, I love my son more than anything, but when I see people cheer for someone. Who can explain their autism with words. I wonder if anyone even knows Greg exists. If I died tomorrow, would he just disappear? End quote. Michelle Martin didn't mean to cause distance, but she felt it. After Sean's story was posted, she found herself hesitating before bringing it up around Karen. Their text thread had gone silent. She missed the ease. They once had the long conversations about therapies and shared exhaustion, but now she felt like she had crossed into a different life, one with visibility, and Karen was still waiting at the edge. Meanwhile, Sean had begun to notice too, not just that his story was celebrated, but that others like Greg's weren't, others like Greg's were missing. Why didn't they do one on Greg? Sean asked One afternoon, Michelle hesitated because your story is easier to tell. Sean frowned. He didn't understand why. That felt like a compliment and an insult. At the same time, Daniel Sadler never wanted attention. He pride himself on working quietly, filling out the Medicaid paperwork at 2:00 AM research and sensory diets fixing the cabinet. Greg ripped off the hinges during a meltdown. The years passed slowly, but something in him cracked one week when Greg turned 23. No coverage, no services. Just another year of trying to build a life with tools no one gave them. That Sunday, he stood in the kitchen and opened the fridge, staring at a half finished schedule, taped to the door. It looks like we're ghost. He said softly. Karen looked up from her laptop. We always have been. He pulled the schedule off the door and slowly tore it in half. Not in anger, but in grief. He hadn't cried in years that night he did. Karen Satler writes what she can't say.. It was a breakdown. It was a breakthrough. Karen sat on the edge of the bed lit only by the screen of her laptop. She opened Facebook and typed, my son is 23. He is autistic, nonverbal, and requires help with everything eating, bathing. Dressing. We've had to call 9 1 1. We've been denied services. We've been told your child is too much for this program. We've been called heroes, but only in private. The media doesn't show kids like Greg unless they're missing, harmed, or dead. If you care about autism, you have to care about all of it, even the parts that don't trend. She tagged the local news and she hit post It got seven likes, one heart and two sad faces. Then it disappeared from the timeline, buried beneath graduation photos and casserole recipes. Later that night as Karen was folding towels with Greg, rocking in his usual rhythm, deep in his chair. Eyes fluttering but not focused. She spoke to him softly, not expecting response. You are not a tragedy. You are not a burden. But this world, this world refuses to see you unless something goes wrong. She sat on the floor beside him. He leans slightly toward her. That's the moment. No camera. No audience. Just love in the quiet. Riley sees Karen's post. She shares it. Maya shares it too, but adds her own words. My brother doesn't speak, but he matters always. Sean reposts it in one sentence. I'm lucky to be heard. I wish Greg were too. Michelle reads it all in silence. She's proud of her son and she's learning that advocacy. Real advocacy means making space even when it's not comfortable. At the newsroom, Jake, sits in the editing bay, watching another round of autism spotlight footage. It's beautiful. The subject is a 13-year-old coder who built an app to help with neurodivergent kids. It's warm, it's tidy, and it's feeling, it's starting to feel, mm, hollow He thinks of Greg, of the waiver rejections of the email from a parent asking why their child's story never got a reply. He clicked on his notes folder in it is Karen's Facebook post and a pitch from months ago. It was flagged too heavy. He stares at it for a while, then forwards it with a new subject line. This is the story we're not telling. No one replies. The hidden consequences when only certain stories are told, entire communities become invisible. It doesn't just affect how the world sees autism. It affects how services are funded, how educators are trained, how neighbors respond, how siblings feel when they scroll, and never see themselves reflected. For families like the Saddlers, the silence is louder than any headline greg's needs have changed, but now Karen feels even more alone because the world keeps applauding a version of autism she doesn't recognize. And for the families like the Martins, there's a quiet discomfort that lingers. After the spotlight fades, Michelle begins asking herself, have we made space for other stories? Or just accepted the version that fits Later, there is a newsroom reckoning. Weeks later, Elena, the senior producer, receives a package. It's a handwritten letter from Karen Sadler. You don't know me, but I know your stories. I've watched them for years. They're sweet, inspiring, polished. My son is none of these things. He's beautiful. But not convenient. I dare you to tell his story. I dare you to tell mine. Elena reads it twice, then forwards it to Jake. Subject line. Let's talk. It's not a promise, but it's a beginning. Not every story will go viral. Not every reality fits into a headline. But if we want awareness to mean something really, really mean something, we have to stop turning away from the stories that challenge us. Autism isn't just quirky. It isn't just brilliant. It isn't just a Ted talk with a twist. It's also messy and beautiful and exhausting and quiet and long and it's all of it, and it all deserves to be seen. I. If this episode brought up something in you, grief, recognition, frustration, you're not alone and you don't have to do this alone, you may join. Our private Facebook group is titled Caregiving Life By Take Care of Time. It's a space for caregivers to connect, vent, cry, laugh, and speak honestly, especially when the world doesn't understand what you may carry. You may also visit autism advocacy.org and autism speaks to find tools, support, and family stories that reflect the full spectrum of autism. Not just the parts the camera captures. every caregiver deserves a pause, a breath, a reminder that they matter, the take care of time, respite box. Was created for that moment. It's a bimonthly delivery of soothing items, snacks, comfort foods, and surprises that say, you are not invisible, but we see you because the work you're doing is hard. And because care should go both ways. subscribe@takecaretime.com or send a box to a caregiver who needs it most before we close. I wanna say this, some stories aren't just ignored, they're silenced. Next time on episode four of this series, the Spectrum, we confront the stories that are hardest to hear because they're also the ones that need to be heard the most. In homes, in hospitals, in classrooms and group homes. Too many people with autism are experiencing harm. Sometimes it's neglect, sometimes it's misunderstanding, and sometimes it's violence. We don't talk about it. The media rarely reports it, and often the ones it happens to can't tell us at all. So meet me next week for episode four. As we confront the stories that are the hardest to hear because they're also the ones we need to hear most. Do you have a story that you would like to have told? Contact us at podcast@takecaretime.com. We would love to hear from you. Please note that this episode features reenactments and dramatized details. While in most cases the exact verbatim dialogue may not be known, all dramatizations are grounded in thorough research and crafted to honor the stories shared to respect the privacy and confidentiality of the individuals involved names, and some identifying details have been changed. Until next week, take care.