The Spectrum 4

In Episode 4 of The Spectrum, we explore the often-unspoken reality of violence involving individuals with autism, from homes and hospitals to schools and group homes. Through the lens of the Sadler and Martin families, this powerful episode sheds light on the emotional and systemic toll of caregiver burnout, institutional neglect, and media silence. But in the midst of the pain, a movement begins. This is a story of truth-telling, advocacy, and the first steps toward lasting change

Transcript

0:03

Welcome back to Take Care Time, the Tales and Exhales of Caregivers. I'm your host, Beverly Nance, and this is episode four of our series The Spectrum, a podcast series that doesn't just talk about autism, but digs into the full, complicated and often uncomfortable reality behind the spectrum. If you are joining us for the first time, this story is about two families, the Martins and the Saddlers, who live on the same street, just houses apart. Both families have sons with autism born in the same year, but where one boy, Sean, is articulate and attends mainstream classes. The other Greg is profoundly autistic, non-verbal, and requires full-time care. Now, when I say non-verbal, verbal, his family can understand some of the utterances that he makes, but mostly the world does not so far. We've talked about diagnosis, sibling dynamics, and media portrayal, but today, today's a little harder. This episode is about something we rarely talk about, something we're often too scared or too ashamed to name, and that is violence. Violence against those with autism. Sometimes it happens in places that were meant to protect them. Group homes, hospitals, schools. Sometimes it happens at home behind closed doors where exhausted caregivers break down. Sometimes it's subtle restraints, seclusion, silence. Sometimes it's loud, but always it's devastating and almost always is hidden. This is the spectrum. Episode four, unseen Harm. There's an incident that the Sadler family doesn't like to talk about. One that still haunts Karen, though she swears she's made peace with it. It happened some years ago. Greg was having what the therapist called a behavioral episode, a phrase. That sounds clinical and neat, but it wasn't neat. Greg was 16 at the time, over six feet tall. He had been nonverbal his whole life. He couldn't say what was wrong. If anything hurt or if something in his environment was overwhelming. He could only scream and lash out that day. Karen was alone. Daniel was at work. Maya was upstairs in her room with headphones on. Karen had just finished mopping when Greg threw his body onto the kitchen chairs toppling them over, grabbing whatever was in reach. She tried to redirect him like she has learned in the years of being an autism parent. But he kept swinging and then he hit her right in the jaw. Hard enough to knock her off her feet. She didn't cry. She didn't call the police. She just sat there back against the fridge catching her breath. And in that moment, Karen says she realized something gutting. No one would believe her. No one would believe me. She later told her therapist, and if she did, they'd blame her. Karen didn't think of it as violence, not in the way that most people define violence. When Greg lashed out and his fist connected with her jaw, it shocked her. Yes, it hurt, but in her mind, it wasn't aggression, it wasn't malice, it was autism. It was sensory overload. It was confusion wrapped in a body that couldn't say, I'm scared or I don't understand. Karen didn't report it. She didn't even tell Daniel until the swelling had faded because to her it wasn't Greg's fault, it wasn't anyone's fault. It was just another layer of their reality. Something to absorb, to adapt around like everything else. She iced her cheek and she carried on, not because it didn't matter, but because she believed Greg couldn't help it and because deep down she feared what would happen if the world saw it differently. Karen didn't tell Daniel right away. She didn't write it down in the behavior journal, the therapist asked her to keep, and she certainly didn't report it, but it wasn't just Greg's lashing out that scared her. It was hers. She yelled, screamed, actually not at Greg, but into the void. Into the air at God. She picked a dish, threw it into the sink, so hard, it shattered for a split second. She felt something darker. The pool of frustration that had nowhere to go. She didn't hit Greg. She never has. But in that split second, she understood how it could happen. How another caregiver in another moment could cross that line that scared her more than her bruised cheek and her throbbing jaw And here's the part that no one likes to admit. Sometimes the caregiver, the one with the calm voice and the laminated visual schedule and the therapist number on speed dial is at the end of their rope. They're exhausted, under supported and invisible, and that combination is combustible. In fact, there's a phrase used quietly in the caregiver Support groups rarely spoken out loud. Rage, guilt. It's the guilt that comes after you yell, after you clenched your fist, after you slam a door. Not because you don't love your child, but because you're human and you're burning out and sometimes love isn't enough to keep you composed. Karen didn't hurt Greg, but that day, sitting in the cold tile floor, she imagined what would happen if she ever lost control, and she made a promise to herself. If I ever feel like that again, I will ask for help, even if I don't know who to ask, but not everyone does. Not every parent feels they can. Shame is heavy and silence is easier. While the Martins weren't ready to play Sean in a group home, he was verbal able to do many things for himself. But the saddlers, they were nearing the edge. So when Greg turned 22 and aged out of school-based services, Karen and Daniel were left scrambling. His aggressive episodes were worsening. Their marriage was fraying. Karen had left her job years ago, and Daniel was working overtime just to pay for Greg's medications and private therapies. A social worker recommended a local group home operated by a large nonprofit agency. It was well staffed. She said they're trained in behavior management. It'll give you some peace. It didn't. It was a mid-September when Greg moved in. The room was sterile but clean. His roommates were mostly nonverbal young men. The staff smiled. They nodded politely, but something, and Karen tightened when she met with the shift manager, a man with dark circles under his eyes, who barely looked up from his clipboard. Hmm. We have cameras in the common areas. He told her, but not in the bedrooms or bathrooms, you know, for privacy reasons. Karen signed the paperwork. Anyway, she cried the whole drive home within two weeks, Greg had a black eye. The staff said he had fallen during a behavior incident. He lunged out at one of the aides who followed the behavior plan, but he tripped They explained there was no report filed until Karen demanded one. No photo documentation, no follow up And this is where we step back and take a broader picture. Group homes, especially those serving people with severe disabilities, are often underfunded. Understaffed and unregulated in many states. Oversight is minimal, yearly inspections at best, often pre announced staff turnover is high. Some employees are compassionate, committed, and deeply invested. Others are simply clocking in and when their job gets hard, they lash out or walk out. Nationally, data on abuse in group homes is hard to pin down why you might ask. Hmm. Because most states don't track it in a centralized way. According to a 2021 investigation by NPR, and the Associated press, thousands of cases of abuse, including physical assault, neglect, and sexual misconduct have occurred in group homes often with little consequence, even when reports are made, families rarely see justice. Staff are quietly transferred. Investigations are dropped or worse. Victims like Greg who can't testify, can't describe what happened, are simply not believed. Back at the group home, Greg stopped eating regularly. He flinched when certain staff members entered the room. His humming disappeared. Karen noticed it immediately when she asked the staff. They said that he was just adjusting, but a mother knows she pushed harder. She called her case manager daily. She began documenting everything, times, dates, any type of injury. She asked to see the incident reports she visited unannounced only to be told. Now was not a good time. Eventually, she pulled Greg out. She and Daniel rearranged their lives again. He returned home. There were No formal charges, no lawsuit. Just another story whispered in caregiver support groups, another warning passed from parent to parent. Be careful. Not all homes are what they seem. This story isn't unique. It's tragically common. Violence in group homes can take many forms. Physical restraint, used improperly or excessively over medication to sedate residents into compliance, neglect, or individuals are left unbathed, unfed, or isolated for hours. Psychological abuse where staff mock or ignore clients who can't speak up the victims. People like Greg, like Sean. If his Path ever shifts like thousands of others across the country, and yet these stories are rarely in the news. They're not in the headlines. They're not those feel-good segments. Why? Because the public still doesn't know what profound autism really looks like, and many don't want to know the institutional silence of schools and hospitals. The hospital room was cold and the light's too bright. Karen sat beside Greg. gripping his hand as he laid motionless. The effects of heavy sedation still lingering in his system. His wrist bore red marks a soft restraint strap, dangled from the hospital. Bed rail. This was supposed to be behavioral crisis evaluation, not trauma reenactment. The incident has started at home. Greg had become overwhelmed. No one knew what triggered it. He screamed, struck the wall, then scratched his own arms until they bled, panicked. Daniel called 9 1 1. The ambulance arrived with sirens blaring. The EMTs tried to restrain Greg and that only escalated things at the er. Greg was met not with care, but with suspicion. A young nurse muttered another one of those cases. He was sedated before Karen could explain his sensory needs. She'd seen this before, but not just in hospitals. When Greg was in middle school, he had what his teachers called a difficult year, his individualized education plan, also known as IEP, listed his triggers, loud noises, unexpected transitions, fluorescent lighting, but one substitute teacher didn't read it. Greg became overwhelmed after a fire drill. He covered his ears, ran into the corner of the classroom and began rocking violently. The school's response, two staff members restrained him face down on the floor. They didn't call Karen until an hour later she arrived to find her son bruised and sobbing. He didn't return to that school. This isn't an isolated case. The use of restraint and seclusion in schools, especially in special education classrooms, has come under fire nationwide while the US Department of Education has issued guidance limiting such practices, enforcement varies wildly by state district, even individualized school. Some schools use padded seclusion rooms. Called calming areas. Others trained staff in holds that mimic law enforcement tactics. These are children, often nonverbal, often already frightened, and what happens when the parents aren't told? Karen only found out about Greg's classroom restraint because he was visibly injured. Many families learn long after the fact. If ever in hospitals, things aren't much better. Individuals with profound autism may not respond to pain the way others do. They lash out when touched unexpectedly. They may not tolerate IVs or tight gowns, but how many ER nurses are trained in autism care? How many pediatricians know how to interpret stem rather than suppress it? Greg once flapped his hands rapidly. When a resident tried to give him a shot, the nurse took it as defiance. He was sedated again. What's missing is context. Just like The schools, the default response is too often control, not compassion. And what about the staff? Many are undertrained, some are underpaid, some are burned out. This isn't just a policy failure, it's a systemic one. One that leads to trauma for families already carrying too much. After the hospital incident, Karen researching alternatives, she found one, there was no autism specific. Crisis units within a hundred miles of their home. No sensory friendly ER protocol, no trained emergency response team for autistic adults in crisis. Just a revolving door of standard protocols that don't apply to kids like Greg. She called another parent. She called Maya, she called Seans mom. Michelle Martin. I'm scared. Karen said I'm scared that one day. Something's gonna happen, and no one's gonna know how to help him. I'm scared they're gonna hurt him before they understand him. Sean's mom automatically understood Sean wasn't as profoundly affected, but the fear was still there. He was a young black man now flapping his hands on the sidewalk. How long until someone misunderstood that, how long until he was hurt? The truth is violence doesn't always look like a bruise or a slap. Sometimes it's indifference. Sometimes it's misunderstanding. Sometimes it's a system that sees people like Greg and Sean as problems to manage, not lives to support. Three months after the hospital visit, Greg stopped speaking altogether. It's unclear if it was the trauma, a regression, or simply his way of protecting himself. Karen sits with him at home, running her fingers through his hair. She whispers. I love you. I see you. I'm still here. She doesn't know if he hears her, but she hopes across the street and a few houses down. Sean completes a, completes a complex robotics project. One he has designed himself. He grins flaps and says, done. His mom smiles, but the fear never leaves. She wonders which of them will be next. It started with a whisper, a private Facebook message, a DM from a parent who said, me too. A comment left under an article that said, this is our life, but no one talks about it. Karen noticed it first. After Greg's hospitalization, she posted cautiously about what happened, not naming names, not being dramatic, just honest. She didn't expect the response. In 48 hours, her inbox was filled with stories. A mother in Texas whose son was tased by school police, a father in Florida whose daughter was locked in a seclusion closet because she rocked too loudly. A former group home worker in Ohio who quit after seeing a colleague hit a nonverbal resident in the shower. These weren't isolated incidents. They were symptoms of something larger, a system underfunded, undertrained, and unaccountable. One question, Karen began asking, where are the watchdogs? She called the State's Office of Developmental Disability Services. They sympathized but told her complaints needed to go through a formal process. She called the local news. A reporter told her. We try to highlight the positive. Another said, unless there's a confirmed abuse is hard to cover. But what about chronic under training? What about trauma? That's invisible. She reached out to an autism organization known for high profile fundraising and celebrity gala. Their mission statement emphasized inclusion, awareness and hope they never responded. Karen and a small group of parents, some local and some across this country, decided to act. They formed an advocacy group. They hosted virtual town halls. They interviewed former aides, nurses, and teachers willing to speak anonymously. They gathered testimonials, medical records, and state data on restraint and the use of injury reports. They didn't just share stories. They built a case. Their goal wasn't to shame. Individual workers most were doing the best they could with too little support. Their goal was systemic change. The group pushed for three key reforms. One mandatory autism specific training for all hospitals and emergency staff, law enforcement and school personnel training designed with autistic adults and caregivers, not just about them. Two transparent reporting which would require. Public reporting on all incidents involving restraint, seclusion, or injury in school and group home settings. Three. National crisis intervention protocols modeled after trauma-informed care to ensure responses are based on support, not suppression. A state senator took notice. She'd once worked as a pediatric nurse. She'd seen things. She agreed to sponsor a bill. It wasn't perfect. It wouldn't pass easily, but it was something. A start months later, a small public radio station ran a segment titled Autism and the Quiet Crisis. Karen wasn't the focus, neither was Greg. It featured multiple families, but one line stood out. For every story we don't tell. There is someone still waiting to be seen. It wasn't a viral story, it didn't trend, but for the families like the Martins and the Saddlers, it was a beginning one spotlight in a landscape of shadows. Violence isn't always loud. Sometimes it's hidden. Sometimes it looks like policy. Sometimes it looks like silence. When systems fail to see the full spectrum of autism. When they simplify, sanitize, or ignore those most vulnerable, carrying the burden, but the silence is breaking. Caregivers are speaking, siblings are remembering. Advocates are organizing. The road to change is long, but every voice counts. If this story moved you join our conversation at Caregiving Life on Facebook. Where you can share stories, receive resources, and ask advice because you are not alone and your voice matters. You show up for them every day, but who shows up for you? The take care time. Bimonthly Respite box is curated with caregivers in mind, each box is filled with self-care items to help you breathe, recharge, and feel seen from soothing sense, to calming teas, to uplifting surprises. It's a moment of relief delivered because caregivers need care too. Treat yourself or gift one to a caregiver youLove@takecaretime.com. Take care time respite box because you matter too. Next time on the spectrum. When the last school bell rings, what comes next for families raising children with autism? Turning 22 Isn't a milestone, it's a free fall. Services vanish, structures disappear and families are left staring into a future with no map. In episode five of the Spectrum, we explore what really happens when kids with autism age outta school and why so many fall off what parents quietly call the cliff. Because leaving your classroom shouldn't mean leaving behind a life worth building. That's next time on the spectrum. If this episode resonated with you, if you've ever felt unseen or unheard in your caregiving journey, we would love to hear from you. Contact us at podcast at take care of time.com. Share your story for a chance to be featured in a future episode. You're Not alone and your voice could be the one that helps another caregiver feel seen. 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 individuals involved names, and some identifying details have been changed. Until next week, take care.