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When Caregiving Becomes a Cage: The Hidden Cost of Profound Autism

  • Justin Robinette
  • 4 days ago
  • 5 min read
When caregiving becomes confinement, it's not just a personal crisis; it's a societal failure.
When caregiving becomes confinement, it's not just a personal crisis; it's a societal failure.

By Justin Robinette


(Note: The names in this blog have been altered to protect the privacy of those involved.)


Autism Spectrum Disorder (ASD) now affects an estimated 1 in 31 children in the United States.This is a fivefold increase since the CDC began tracking autism rates in 1992. While public awareness has grown, care and support systems haven’t kept pace. For families navigating the most severe form—Profound (Level 3) Autism—this disparity can be catastrophic.


According to the CDC, roughly 27% of people diagnosed with ASD fall into this category. These are individuals with significant intellectual and functional impairments, often nonverbal and entirely dependent on caregivers for their most basic needs. Yet they, and the families who care for them, remain largely invisible in the national conversation around autism.


The Reality Few Are Willing to See


One of the most misunderstood elements of profound autism is aggression. These aren’t violent children in the traditional sense. They are overwhelmed. Trapped. Unable to communicate even basic discomforts or emotional distress. Their aggressive behaviors—hitting, biting, self-harm, destruction—are often desperate acts of sensory and emotional survival. Without specialized support and trained intervention, these behaviors can escalate beyond what anyone can safely manage.


But while society has become more comfortable embracing certain autism narratives, such as tech-savvy savants or quirky brilliance, the stories of families caring for profoundly autistic individuals are still met with silence or disbelief.


Carol’s Story: Trapped in Plain Sight


Carol is 44. She lives in near-total isolation as the sole caregiver to Jason, her 16-year-old son with profound autism. Jason is six feet tall, physically strong, and largely nonverbal. He suffers from violent outbursts that include self-harm, emotional manipulation, and frequent aggression toward Carol.


This isn’t just emotionally exhausting. It’s dangerous. Jason has attempted to break her limbs. He hits, bites, and lashes out unpredictably. Even a routine refusal, like telling him no to a repeated question, can trigger a violent episode.


Carol compares her life to that of a battered woman. Except she cannot leave. There is no shelter. No escape plan. No one to call.


She wears long sleeves year-round, even in sweltering heat, to hide the bite marks and bruises that now seem like a permanent part of her skin. Some mornings, she applies makeup to her forearms or wrists to cover visible welts before stepping out in public. Not because she’s ashamed of her son, but because she’s terrified someone might ask. Or worse, judge.


These are injuries she has no way to explain without being met with either pity or disbelief. Carol has learned how to conceal her pain to survive, because showing it too plainly might mean scrutiny, blame, or even losing her child.


In a world that doesn’t want to see suffering that doesn’t fit its expectations, hiding has become her only form of protection.


The Collapse of a Normal Life


There is no routine, only survival. Jason dictates every moment of the day: what stores they go to, what time they eat, and what must be purchased immediately or else. Food is a particular battleground. He demands it constantly, devours everything in sight, and reacts violently to delays. Carol has no control over her kitchen, let alone her life.


She cannot rest. She cannot plan. She cannot leave the house unless every possible risk is accounted for, and even then, it might not be enough. No part of her existence belongs solely to her. Not her body. Not her time. Not her space.


There is no work.No income. No future plan.No after-school programs. No respite. No one who understands.


She cannot meaningfully participate in society, and society, in turn, has stopped noticing her. Carol’s world is a locked room without doors, where time passes but life does not move forward.


Jason’s behavior in public often draws shame, disgust, or outright fear. He masturbates compulsively, including in public. He digs straws out of trash cans to satisfy an obsessive need for tactile stimulation. He steals food and toys from others. And when corrected, he spirals into dangerous, sometimes explosive reactions.


There is no safe way to discipline him. There are no tools. There is only a mother trying to survive her son’s next breakdown without harming him or herself in the process.


When Systems Fail


What’s most tragic isn’t just Jason’s behavior. It’s how completely the system has failed them both.


Disability Services rejected Jason’s eligibility for full-time care, deciding he wasn’t “autistic enough.” They made this decision without seeing him, speaking to him, or reviewing his records.


The Department of Children and Families showed no concern for Carol’s safety, only whether Jason was in immediate danger.


Police admitted they were unequipped to intervene and suggested detainment, which would only traumatize Jason further.


Carol’s assigned psychiatrist is inexperienced, dismissive, and unreachable. His only solution is more medication, despite signs that the drugs may be making things worse.


She is alone. Exhausted. Sleep-deprived. Managing someone stronger than she is, who doesn’t grasp consequences but can still cause grave harm. She lives on the edge of collapse.


And no one is coming.


The National Silence Around Profound Autism


Carol’s story is not unique. And that’s what should terrify us.


Thousands of families in the United States are living like this: trapped, voiceless, unsupported. The popular narratives of autism: innate brilliance, quirky personalities, and tech prodigies, have essentially left these families erased.


There is no Instagram account for what Carol endures. No TED Talk. No TV character.

We must stop treating autism as a single, feel-good narrative. The spectrum is wide. And the families at the profound end are being actively ignored.


What Needs to Happen Now


  • Specialized Care Facilities: We need care homes and programs designed specifically for individuals with profound autism and aggression-related behaviors.

  • Emergency Respite Options: Parents like Carol need immediate, safe options to hand over care without risking institutional trauma.

  • Training for First Responders: Police and medical personnel need to understand autism-related crises and how to de-escalate safely.

  • Independent Evaluations: Families should not be subjected to paper-pushing eligibility tests without human interaction or medical record reviews.

  • Legislative Action: We must pass laws mandating appropriate behavioral and psychiatric services for high-need autism cases. And we must enforce them.


Closing Thoughts


Autism is not a monolith, and our policies must reflect that truth. Ignoring the most vulnerable is not just negligent. It is immoral.


Carol is not asking for pity. She is asking for help.And she’s not alone.


We must build a system that protects all families on the spectrum, not just the ones who fit comfortably in our cultural narratives. Because no parent should have to choose between enduring abuse and risking the life of the child they love.


This is not just about autism. It’s about human rights. It’s about survival. It’s about time.


If you or someone you know is struggling to care for a person with profound autism, advocacy groups like the National Council on Severe Autism (NCSA) and the Autism Society of America are fighting for reform. You can also contact your state representative and demand support for the nation's most underserved families.


To support Carol directly or learn more, email: influentialproductions@yahoo.com


Works Cited


 
 
 

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