Understanding My Autistic Son
Meet Ethan. At 11 years old, he has always been unique. His early life was shadowed by an unexplained case of sepsis that struck during his first two weeks, marking the beginning of his journey. Nicknamed “a wriggly worm in hot ash” by his grandfather, Ethan was a strong communicator when calm, but when emotions like excitement or discomfort surged, he would enter what we later recognized as his Fugue State, a form of an autistic meltdown.
By age six, Ethan had a little sister and a diagnosis of autism spectrum disorder, which later evolved to include a mood disorder, dysgraphia, anxiety, and increasingly intense outbursts. Despite medication, an incredible private school, therapy (including TEACCH), and our ongoing efforts, everything culminated in an overwhelming situation one beautiful October day.
My husband, David, called me, his voice trembling with emotion. “Ethan has lost it at school. They can’t manage him. We have to take him to the ER.”
When I arrived at the school, four staff members struggled to keep him contained. He was trying to escape into the street. It had been a challenging week, with the renewal of his Individualized Education Program (IEP) for North Carolina’s Disabilities Grant causing additional stress. Ethan had been grounded for behavior issues, a familiar yet ineffective form of discipline for kids like him.
Thankfully, we had previously collaborated with the school’s director, Sarah, who advocates for children’s mental health and has faced similar struggles. Although we had almost called the police on our son before, this had never been an issue at school.
What occurred with Ethan is referred to as a psychotic break. In that state, he was unrecognizable. Reasoning was impossible, and traditional punishment had no effect.
Ethan meets all the criteria for autism. Since he was 18 months old, he has been fascinated by cars, capable of identifying a Saab from a distance before he even knew to call me “Mom” (he called us by our first names until his sister began using “Mom” and “Dad”). Socially, he faces challenges and struggles with hierarchy, often attempting to control situations to align with his perception of “right.” He possesses remarkable intelligence and pattern recognition skills, yet he grapples with executive functioning and understanding others’ perspectives. Although he may appear socially engaging, he primarily seeks to influence others to adhere to his wishes. His black-and-white thinking complicates matters; his meltdowns persist even after receiving what he desires, as he alters the narrative. Once triggered, he loses emotional control, and any minor incident can set him off.
Yet, Ethan is exceptionally bright. He adores animals and anything fluffy, loves to disassemble objects to understand them, and is a fiercely loyal friend. While he connects with others through his passion for cars, he makes genuine attempts to engage. Tragically, the longer his Fugue States last, the more he despises himself. He has voiced feelings of self-harm and a longing to be “normal,” often worrying that we love his sister more than him.
We’ve explored countless resources to comprehend his world, with Ross Greene’s books proving particularly insightful. I truly believe Ethan wants to thrive; he just lacks the necessary skills to do so.
The Reality of Waiting
For children like Ethan, waiting in the ER is often the only option. Unfortunately, Ethan had to experience police intervention, as we feared for his safety and that of others. The on-site psychiatrist eventually agreed he needed admission and provided us with a list of hospitals from Charlotte to Wilmington. However, with a dire shortage of psychiatric beds, we were informed that the process would take time.
Initially, we expected to hear something within days. We could never have anticipated the length of the wait.
Checked in on a Friday, we soon realized that weekends at hospitals typically mean little progress. Now, we are over 200 hours into this ordeal—more than a week of waiting.
This waiting has involved:
- Four different rooms
- Numerous nurses
- Several children in similar predicaments
- Countless panic attacks and meltdowns
- Two sets of restraints
- Two doses of Haldol (an antipsychotic)
- Multiple calls to facilities, state representatives, and anyone who might help
- A week of missed work, and counting
It took Ethan four days to reach his breaking point, which I found surprisingly resilient. My husband and I had left the hospital Tuesday night, exhausted and devastated after learning he had been restrained without our knowledge. We filed a grievance, and they assured us it was being addressed.
The World Health Organization’s 2001 World Health Report highlighted a troubling rise in mental health issues among children and adolescents, predicting this trend will continue. Every time Ethan is moved, he must recalibrate, consuming precious energy. I understand that ER nurses are not trained for these situations, but some are truly exceptional. One nurse named Tom approached me after Ethan was relocated to a high-security area, noting he had rarely encountered a child with as much anxiety as Ethan. We had been working on this before the crisis, but not every staff member shares this understanding.
When I visited Ethan on Wednesday, he was in tears—something he rarely does. His eyes were swollen from crying, his hands trembling. Then, he experienced his first panic attack.
I honestly thought he was having a seizure. As someone familiar with anxiety and panic attacks, I wasn’t prepared for the intensity. His neck stiffened, he began sweating, and he struggled to breathe. His eyes bulged, and his face turned blotchy and purple. The nurses checked his vitals, revealing he was physically fine but overwhelmed with adrenaline and fear. Eventually, we managed to calm him down with medication, but he had not seen sunlight in almost a week, trapped in a stifling room with no windows.
That evening, when another panic episode hit, I sought help from a new nurse, only to be met with eye-rolling when I mentioned “panic attack”—for a child who had entered the ER expressing suicidal thoughts.
As noted in a report by the Child Mind Institute, solutions to the mental health care crisis are not easily found within existing systems, many of which are ill-equipped to handle children with acute psychiatric needs. A nationwide survey revealed that thousands of children with psychiatric disorders were inadequately treated due to a lack of available mental health services.
Every time I leave, something goes wrong. I spent the night in Ethan’s room, enduring a constant symphony of creaking doors, shuffling feet, and distressed children. It’s no wonder he struggled to sleep. Thankfully, we now have medication to assist with that, but it hardly addresses the root issue.
The Need for a Psychiatric Bed
Ethan requires further evaluation. Our family is fortunate to afford private schooling and have access to resources in Chapel Hill, North Carolina. Despite being in one of the best areas for treatment, securing a facility that can adequately support him is nearly impossible. In some ways, we had to wait for the situation to escalate to this level.
The financial burden of mental health issues is staggering, with the Journal of Pediatrics reporting aggregate charges for pediatric mental health disorders reaching billions.
Unfortunately, psychiatric beds are not profitable, and many facilities avoid children who exhibit challenging behaviors. For-profit hospitals can afford to be selective. The few private institutions available often do not boast the best track records.
The ER has become a holding cell. This energetic child isn’t even trusted with utensils, let alone allowed outside for fresh air.
And the way he is perceived?
I recognize that gaze—the judgment directed at him and us, the sense of resignation. He’s a big kid for 11, appearing older than he is, but ultimately, he is still just a child. A child who has endured verbal abuse, restraint, and unfulfilled promises.
As reported by NPR, up to 1 in 5 children struggle with mental health disorders. This experience is Ethan’s first encounter with the mental health system, and he has been sheltered until now. I wish I could adequately express to him the importance of this wait, though I am starting to question its validity myself.
He desperately needs help. He is suffering, unable to control himself, yearning to do the right thing but fearful of his own mind.
The absence of compassion and kindness is astonishing. Today, I’m feeling off; I left the hospital at 7 a.m. When he called me around 1 p.m., he was ecstatic—he had been moved out of the rubber room. Now that he has access to light, I hope he can hold it together. Yet, I’ve reiterated to anyone who will listen: he is not in an environment conducive to his success. He needs movement, empathy, and space to thrive.
This issue transcends North Carolina. While we have much to improve in our state, UNC Hospitals currently represents our best option. It is heartbreaking to realize that Ethan is just one among many children facing similar challenges. I have seen and met others—suicidal, violent, confused, or neglected kids. Many, unlike Ethan, have limited visitation from parents. For countless others, this is a cycle they know all too well.
As noted by the Child Mind Institute, the main reason children with psychiatric issues end up in ERs is the lack of outpatient services, whether due to nonexistent care or inadequate insurance coverage.
200 Hours
Two hundred hours. I keep fixating on that number. What could you accomplish in 200 hours? How long would you endure the confines of a hospital gown, consuming hospital food, and facing constant prodding and questioning?
How much longer must we wait for him?
“I want to go home,” he said firmly, a sentiment echoed in many hearts as we navigate this difficult journey.
In summary, Ethan’s prolonged wait for psychiatric care highlights the critical gaps in mental health services for children. As families like ours grapple with these challenges, it is crucial to advocate for improved resources and compassionate care.
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