What I Mean When I Say “My Autistic Son”
Liam. He’s 11. From day one, he was different. In fact, the first two weeks of his life were marred by a mysterious bout of sepsis that “just happened.” As a baby he was, as his father-in-law dubbed him, “a worm in hot ash.” While he was a very good communicator when he was calm, when Liam started to get emotional — too excited, too angry, too uncomfortable, too hot, too cold, too thirsty — he’d go into what we called his Fugue State. This, we learned later, is an autistic meltdown.
By 6, he had a little sister and a diagnosis of autism spectrum disorder, which was later accompanied by a mood disorder, dysgraphia, anxiety, and more violent outbursts. In spite of medication, a private school with the most amazing staff in the universe, therapy (through TEACCH and others), day-to-day work with him, and even being waitlisted at a part-time residential facility, it all came to a head on a beautiful day in October 2017.
My husband called me on the phone, his voice wavering through tears. “Liam has lost it at school. They can’t control him. We’re going to have to take him to the ER.” More on that in a moment.
Four grown men could barely contain him. When I drove up to the school, Liam was trying to bolt for the street.
He’d had a tough week. We’ve got to get his IEP renewed every few years for his North Carolina Disabilities Grant, and the strain of that, coupled with just being Liam, had caused quite a stir in the house. He’d been grounded for behavior earlier (those of you familiar with kids like Liam will understand that such punishment is necessary but doesn’t often have the expected result).
Thankfully, we’d worked with the school’s director before. Linda McDonough is a champion for mental health rights for kids and has had her own experiences like ours. We had come close to calling the cops on our own son before, but it had never been an issue at school.
The term for what happened to Liam is called a psychotic break. I will spare you the details, but the long and short of it was that in his state we feared for his safety and the safety of those around him. In his Fugue State, Liam is not Liam. He cannot be reasoned with. He cannot be punished into submission.
Liam meets the criteria for autism. He’s been obsessed with cars since he was 18 months old and could spot a Saab across a parking lot before he started calling me “Mom” (fun fact: He called my husband and me by our first names until his little sister came along and started using “Mom” and “Dad”). He struggles socially. He doesn’t get hierarchy. He needs to control situations and will go to extreme lengths to keep things going in what he deems is the “right” way (if you’ve seen the Steve Jobs movie, you’ll remember the phrase “reality distortion field” — that’s Liam). His IQ is through the roof. His pattern recognition is off the charts. He struggles immensely with executive functioning and theory of mind. And while he seems charismatic socially, really, he’s just trying to get people to do what he wants them to do. He’s a painfully black-and-white thinker. His meltdowns never end when he gets what he “wants” — they just continue because he changes the narrative. Once the switch is flipped, he lacks the ability to control his emotions. And anything can flip that switch…
But Liam is a brilliant person. He loves animals and fluffy things. He loves taking things apart and figuring out how they work. He’s a fierce friend and sticks up for kids who are smaller than he. He might connect to people through cars first and foremost, but he tries. Every day, he tries. The scariest thing I’ve seen as a parent, however, is that as his Fugue States get longer and more violent, the more he hates himself. The more he’s talked about self-harm. The more he wishes he was “normal.” The more he worries we love his sister more than we love him.
We’ve read every book to try to understand him. None have been so helpful as Ross Greene’s books. I firmly believe if Liam could do well, he would. Be his skills are still lacking.
What I Mean When I Say “Waiting”
For kids in Liam’s state, there is no option other than to wait in the ER for kids in Liam’s state. He now has had up-close-and-personal experience with police because we had to send him to the ER in a cop car for fear he would hurt others. (Special thanks to the Durham unit who was amazing in this very scary situation.) Once the on-site psychiatrist agreed that Liam needed to be checked in, she gave us a list of about 20 hospitals from Charlotte to Wilmington, and said that he could go to any one of them, but there are very few beds and that “this process takes time.”
We thought we’d hear something within a few days. We couldn’t imagine this wait.
We checked him in on a Friday. Fridays are pretty much the weekend. That means nothing happens at the hospital. Now we’re over 200 hours of waiting — over a week.
Waiting has meant:
– Four separate rooms
– Dozens of nurses
– Dozens of other kids in the same situation
– Dozens of panic attacks and meltdowns
– Two sets of restraints
– Two doses of Haldol (an antipsychotic medication)
– Dozens of calls to facilities around the state, state representatives, and anyone who can help
A week of work missed, and counting…
It took Liam four days to crack, which was actually pretty impressive from my measure. My husband Michael and I had left on Tuesday night, exhausted and shocked from the night before when we’d heard he’d had to be restrained, something the hospital failed to tell us. We filed a grievance. They’ve “looked into it,” and those on staff will be spoken to.
In the 2001 World Health Report, the World Health Organization noted an increase in mental health problems among children and adolescents and predicted that the incidence of these problems will continue to rise.
Every time Liam is moved, he has to recalibrate, and that’s a big use of his energy. Because there are only ER nurses on hand, I get that this isn’t what they signed up for either. Some nurses are amazing — one man named Jim came to me after Liam was moved to the high-security area (a room with rubber walls, I kid you not) that he’s rarely seen a kid with as much anxiety as Liam. We’ve been working on that. We were in the middle of working on that before this happened. But unlike the nurse who called him “a bad apple” the night before, the nurse who lectured me about how it’s just about “good choices and bad choices,” or the security guards who teased him for crying, Jim saw a scared, lonely kid who doesn’t understand his own mind. We need more Jims. But they are terribly rare.
When I visited Liam on Wednesday, he cried constantly. He is not a crier. He’s a fake crier sometimes, but I’m pretty good at telling that. This kid cried all day long, eyes red and raw from it, chin quivering, hands shaking.
Then came his first panic attack.
I will tell you, I thought he was having a seizure. As a fellow sufferer of anxiety and panic attacks, I still wasn’t prepared. His neck seized up. He started shaking and sweating. He couldn’t exhale. His eyes were red and bulging, his face going blotchy and purple. I called the nurses over and they checked his vitals and saw that he was fine, except for the raging adrenaline and fear coursing through his body. We eventually got him calmed down with the help of pharmaceuticals. But at this point, he hadn’t seen the sun in almost a week and was in a hot, claustrophobic room with no windows and only a cold shower.
Later that evening, when he started having another panic episode, I went to fetch the new nurse who, I kid you not, rolled her eyes at me when I said the words “panic attack” — about this kid who’d come into the ER saying he wanted to die.
“Solutions to the mental health care crisis are not easily found within other, nonmedical systems, which are equally unprepared to handle children with acute psychiatric illness. A nationwide survey of juvenile detention centers, the results of which were presented at a Senate hearing in July 2004, revealed that 15 000 children with psychiatric disorders were improperly incarcerated the previous year because no mental health services were available.” – Abstract of the Technical Report — Pediatric and Adolescent Mental Health Emergencies in the Emergency Medical Services System
Every time I leave, something bad happens. I slept in his room last night, and it’s a constant whir of creaking doors and shuffling feet and moaning kids. No wonder he’s hardly slept. Thankfully, we’ve got medicine for that now too. But that’s not the answer.
What I Mean by a Psych Bed
Liam needs more evaluation. As a family, we are extremely lucky that we can afford private school for him and that we have so many resources in Chapel Hill, North Carolina. But in spite of the fact that we’re in the best area for this treatment, finding a place that will support him is almost impossible. There aren’t any other routes to get him the inpatient help he needs at this point. We had to wait, in some ways, for it to get this bad.
“Aggregate charges for depression alone ($1.33 billion) are comparable to the $1.50 billion in aggregate charges for asthma in 2009.” –“Common and Costly Hospitalizations for Pediatric Mental Health Disorders,” Journal of Pediatrics
Psych beds don’t turn a profit. They don’t make money. No one wants to work with kids who hit and bite and flip out. For-profit hospitals can cherrypick. The few private institutions do not have the best track records.
The ER is the only place that will hold him. And it is like a holding pen. This super-active kid isn’t trusted with forks or plastic knives, let alone the ability to run or get some sunshine.
And the way that he’s looked at.
I know that look. That look that judges him and his parents. That look that’s already given up on him. He’s a big kid for 11. He looks 14. But he’s just a kid. A kid who has been verbally abused, tied to a bed, and made promises that just didn’t get kept.
“As many as 1 in 5 kids have a mental health disorder.” – NPR
This is his first foray out into the world of mental health medicine. He’s lived in a bubble until now. And I wish I could explain to him why this is so important that he keeps waiting, though admittedly I’m starting to question myself.
He needs to get help. He’s miserable. He is not in control of himself. He wants to do the right thing, but he’s afraid of his own brain.
The lack of compassion and kindness has floored me. Today, I’m “off” — I left the hospital at 7 a.m. He called me, ecstatic, at around 1:00 in the afternoon because they moved him out of the rubber room. Now that he at least has light, I’m hoping he can keep it together. But as I have reiterated to anyone who will listen: He is not in a situation where he can succeed. He needs movement and compassion; he needs space and kindness.
It’s not just North Carolina. While we have a lot to be desired in this state, UNC Hospitals is the best option for us right now, and the most renowned. What is so shocking is that Liam is one of many. I’ve seen them, met some of them. Suicidal kids, violent kids, confused kids, neglected kids; Liam is lucky. So many kids hardly have a parent visiting. For many, it’s a repeat visit.
“The lack of outpatient services is the biggest single reason kids with psychiatric problems end up in the ER—because the care simply don’t exist or because insurance doesn’t cover it.” –“Kids in Crisis: The View From the ER,” Child Mind Institute
200 hours. I keep looking at that number. How much can you do in 200 hours? How long would you last in a polyester smock and with hospital food and people prodding you and poking you and asking you the same questions over and over again?
How much longer do we wait for him?
“I want to go home,” he says.
“You remember why you’re here though, right?” I ask.
He nods, tearing up.
“You want to get help, don’t you?” I ask, feeling my heart knotted in my chest.
He nods and sighs.
I just wonder: How much are we helping him? And if this ever happens again, how do we keep going?
How much longer do we wait for our country to fix this problem? As these kids lose trust in the system, as their families struggle to work and balance, as we wait until something irreparable happens…