The Spectrum 5

This episode examines what happens when school ends—but life doesn’t. As young adults with autism age out of the educational system, families are left navigating a world without structure, support, or clear next steps. We follow the Sadler and Martin families as they face the harsh realities of transition—shrinking opportunities, long waiting lists, and aging parents with dwindling energy. But amid the uncertainty, we also highlight moments of resilience, community, and hope.

Transcript

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Welcome back to Take Care Time, the Tales and Exhales of Caregivers. I'm your host, Beverly Nance, and this is episode five of our series The Spectrum, A podcast journey into the lives of two families raising children on opposite ends of the autism spectrum. We've walked beside the Martins and the Sadlers. We've heard from Riley and Maya, two sisters whose voices. We're often quieted in the chaos, and we've explored how society and the media have chosen, which autism stories to spotlight and which ones to ignore. But today we're talking about endings, or at least what feels like one, because if you're raising a child with autism, whether they're verbal or nonverbal, thriving or struggling, you know, the ticking clock. You know the system is built to support children and that one day, whether you're ready or not, that yellow school bus stops showing up. The service is tied to education vanish, and what's left behind often is nothing. Today's episode is called the End of the Bell because for many Families, when the school bell rings for the last time, it's not a celebration. It's the start of the unknown. This is the Spectrum, episode five. Karen Satler stands in the doorway of what used to be her son's classroom. It's quiet now. The bulletin boards are empty. The art on the wall has been taken down. Greg's class graduated last week. Only, it wasn't a graduation. Not really. There were no caps. No gowns, no future mapped out. Greg turned 22 last month, and with that birthday, his rights to a free and appropriate public education ended just like that. Karen didn't cry at the ceremony. She was too tired, too numb. There were three other moms standing beside her that day. Their arms folded, their eyes red. They whispered to each other, what now? And the truth was, no one had a good answer for the saddlers. The road leading up to this moment had been both winding and warned. Greg's school had been a constant, even when he struggled. Even when he lashed out, even when the system failed to fully understand him, it was a place, it was predictable, it was structured. Now that structure was gone, Karen tells her husband, Daniel, over dinner, we need to figure out what comes next. But Daniel doesn't respond right away. He's staring at the spaghetti on his plate. Maybe we should have started planning earlier. He finally says she doesn't argue because she's thought that too. But she also remembers the IEP meetings, the way the school district talked about transition planning, but never offered much more than vague flyers and a checklist about adult services, which led to disconnected phone numbers and full of wait list. Where do we even start, Karen? Ask. And the silence that follows says, nothing. Aging out of the school system. Sometimes called the services cliff. Happens at age 21 or 22, depending on your state. And for parents of kids with profound autism, it feels like being pushed off a ledge into the fog during school years, a child may receive. Speech therapy, occupational therapy, behavior support, transportation, social skills training, and access to structured environments, all guaranteed under federal law. After graduation, most of that disappears, and unless you've been able to secure a Medicaid waiver, which can take years, even decades, there are a few options left. The Satler had applied for Greg's waiver when he was 10. He was placed on a list. He's still on the list on the other side of the street. The Martin family also navigating the after Sean, who is also aged outta school and lives at home, has a part-time job at a local grocery store, bagging items and routing up carts. His parents feel fortunate. But even so, the support they once had from the school system is long gone. Employment after school ends is a complicated road, especially when autism is in the picture for individuals. On the higher end of the spectrum, there may be opportunities for supported employment internships, or part-time work. Yet even those come with barriers like social challenges, lack of transportation, and employer bias. For those on the lower end of the spectrum, the picture is far more bleak. Traditional jobs are often out of reach and there are too few programs that offer meaningful structured day services or skill building opportunities. The result, a generation of adults with autism, eager, capable in their own ways, and yet largely excluded from the workforce. Families watch their young adults lose purpose, connection, and progress, all because the system wasn't built to include them. Yes, aging outta school can feel like a free fall. Services vanish. Routines collapse, and families are left to build something from scraps. But amid the struggle, there is hope and progress. Across the country, caregivers are organizing, they're demanding more inclusive post-secondary programs. Accessible job training and adult focused autism resources. Micro businesses are sprouting from kitchen tables, art studios, soap making ventures, online stores, creative solutions, sparked not by systems, but by love and necessity. Support groups, both virtual and local are growing stronger. Parents are linking arms sharing tips, providers and encouragement. And some states are expanding waiver programs or launching pilot initiatives aimed at adulthood because advocates parents like you wouldn't stop showing up. So no, the road after 22 isn't smooth, but it's not the end. It's a new beginning. With the right support community and willingness to fight forward, we can build better days for our loved ones. We pay for a private coach out of pocket. Michelle tells her neighbor just to help Sean navigate workplace stuff, tone of voice, reading his body language. It's not cheap. She adds, he doesn't have friends, not real ones. He's lonely and that's the other truth. Rarely spoken. Higher functioning adults with autism often live in an invisible limbo, too capable for full-time care, but not supported enough to thrive independently. Back at the Satler home, Karen spends her evening on the phone. She calls adult day programs. They're full, she calls community resource centers. They refer her to another agency. That agency is no longer accepting clients. One night she's transferred six times. She writes in her journal, there's no bridge, just the edge. A few months after Greg ages out, Karen gets a call. It's from Maya. Maya's at college now doing well, but she's worried. Mom, are you okay? She ask Karen Hesitates. She doesn't wanna burden Maya, but she's not okay. She's home all day with Greg. He's regressed. He misses the rhythm of school. He paces, he hits himself, he lashes out. And Karen, well, Karen's lost herself. I miss having coffee alone. She confesses. Daniel picks up extra shifts, not because they need the money, but because he doesn't know what to do at home anymore, they're stuck. One evening, Karen attends a virtual support group for parents. Of adults with disabilities. A mother in the group says something that sticks with her. We spend so long fighting for our kids in school. No one tells us the next fight is even harder. But there's another piece we don't talk about enough. The parents are aging too. They've already spent two decades advocating, coordinating therapies, managing behaviors, and holding their families together by the time their child is out of school. Many parents are in their late fifties, sixties, some of them are even older, exhausted, burned out and facing their own health issues, but the system really ask how they're doing. There's no aging out support for caregivers. Just more paperwork, more waiting, more silent sacrifice. They aren't just parenting anymore. They're lifting adult bodies, managing medications, and navigating systems with even less help than before. For many, it's not sustainable, but it's their reality. I, one morning, Greg is calm. Karen decides to take him for a drive. They end up at the lake, she parks and they sit in silence. Greg stares at the water. He hums softly. Karen puts a hand on his knee. Let's figure this out. She says more to herself than to him That week, she starts a spreadsheet, names, numbers, notes. She organizes every agency she's contacted. She highlights the ones who promise to call back, and then she does something new. She writes a letter to her state representative. She shares her story, Greg's story, and she ends it with this. We are not asking for luxury, we're asking for structure, for care, for continuity. This doesn't end at 22. What you can do while you wait. Here's some advice for families after aging out or while on the Medicaid waiver wait list. When school ends, the services feel out of reach. It can feel like your loved one and your entire family has been left in limbo. But there are things you can do while you wait that can make a meaningful difference. One, you can create a daily routine. Structure is the most powerful tools one can offer. Create a visual or written schedule with wake up times meals, hygiene routines, learning time, physical activity, and free time. Predictability can reduce anxiety and improve behavior. Two, focus on life skills. Use this time to teach or reinforce important functional skills. Think. Making simple meals, doing laundry, handling money, either real or pretend personal hygiene, taking medications. These small wins. Build confidence and independence. Three, document everything. Keep a simple binder or a digital folder with progress notes, medical visits, communication with agencies. Examples of your child's needs videos can also help. This documentation can support your case when applying for services or appealing wait list decisions. Four. Build a circle of support. Don't wait for official services. To begin connecting, look for caregiver support groups. Ask if the local, high school or college offers peer buddy programs. Join online communities in your state focused on waivers and disability services. Five, explore volunteer or inclusive community opportunities. Look for safe, supportive places that offer engagement. Libraries, community centers, churches or synagogues With inclusion programs, even occasional outings can make a huge difference. Six, learn The system is frustrating, but knowledge is power. Learn how your state's waiver system works. Find out who is your regional coordinator, what the priorities are for service allocation, how to submit updates or letters of need. This helps you be persistent and strategic. Seven, and this is the most important one. Don't forget you, your wellbeing is essential. Look for moments of rest, even brief ones. Talk to your doctor about caregiver burnout. Tap into respite resources, even informal ones from friends and families. Still fighting for services. Don't forget to take care of yourself too The take care time. Resite Box is curated for caregivers just like you. Full of comfort items, motivation and reminders that you matter too. Learn more at takecaretime.com next time on the spectrum. We hear it all the time. You can't pour from an empty cup. But what if there's no way to refill it? What if you're so deep in demands of caregiving that you don't even notice your own warning signs? In our next episode of the Spectrum, we shine a light on the physical and emotional toll of long-term caregiving, especially. When there's no support in sight for Karen Sadler, it all came to a head one ordinary afternoon. She was standing at the sink washing a bowl when her vision blurred and her legs gave out. It wasn't a stroke or a heart attack. It was exhaustion, dehydrated, sleep, deprived, running on fumes, and she hadn't been to the doctor in over three years. This episode explores how caregivers like Karen. So focused on keeping their children afloat, can find themselves drowning. We'll talk about the silent suffering. So many endure the ripple effect on families, and most importantly, why building a respite plan isn't a luxury, it's a necessity. Years of relenting caregiving had caught up with her, and still she had to get up and take care of Greg. This episode is about the quiet crisis happening behind closed doors. It's about the fact that respite isn't selfish, it's survival, and we'll talk about what creating a realistic plan for the rest looks like, especially when your child's care needs are more than most people can imagine, because for some caregivers, rest isn't a want. It's a lifeline. What's it like to grow up in the shadow of a diagnosis? To love your sibling deeply, but sometimes feel invisible. In Episode seven. We hear from someone who knows that role firsthand. He's not just a brother, he's a protector, an advocate, and a collegal guardian. But before any of that, he was just a kid trying to understand why life in his house was different. In episode Seven. We sit down for a raw and heartfelt conversation with the brother. He shares what he witnessed and what he carried and what he wishes. More people understood about siblings of those with profound autism. It's honest, emotional, and long overdue. Your Story matters. Let's tell it together. Do you have a story about caregiving, sibling dynamics, or navigating a broken system? Maybe you're a parent still waiting for services, a sibling who's seen it all. A former professional who knows what's happening behind closed doors. Whatever your experience, you're not alone and you don't have to carry it alone either. I'm inviting you to be a part of take care time. The tales and exhales of caregivers. If you've lived it, felt it, or fought through it, we wanna hear from you. Reach out at podcast@takecaretime.com. Let's talk about what really happens in the world of caregiving, and let's do it with compassion, honesty, and maybe a little humor and suspense because your voice could be the one someone else needs to hear. 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.