I am a nurse.
For more than three decades, I have cared for people in some of the most difficult moments of their lives. I learned to recognize changes from a patient’s baseline and to speak up when something didn’t look right.
But when it was my son, I wasn’t standing at the bedside as a nurse.
I was standing there as his mom.
My son is autistic and has an intellectual disability. I know him the way only a mother can: his personality, his routines, the way he communicates. So when things began changing in the fall of 2025, I knew something was wrong.
Where did my son go?
At times, he would freeze, stare, become rigid or hold his body in unusual positions. At other times, the picture was completely different: extreme agitation, aggression and self-injury. His communication changed. Things he had always been able to do, he suddenly couldn’t.
There were moments when he seemed out of reach, as if a wall had gone up between us and I couldn’t find the door.
As a parent, I was frightened. As a nurse, I kept thinking about baseline.
This wasn’t my son’s baseline.
When behavior doesn’t tell the whole story
When a child has autism or an intellectual disability, it’s easy to explain every new change as part of the disability.
It’s his autism.
It’s behavior.
It’s a phase.
But sometimes behavior is a sign of something medical.
My son was eventually diagnosed with catatonia, a medical condition that affects movement, responsiveness, speech and behavior. Up to 1 in 10 autistic people may experience it at some point, often in the teen or young adult years. Yet it’s missed again and again, because the signs look like autism to people who don’t know the difference.
Catatonia wasn’t misconduct. It wasn’t my son deciding to be difficult. It was a medical condition taking away his ability to function, and it couldn’t be reasoned away, redirected away or disciplined away.
Finding the right team
He had several hospital stays during the fall of 2025. Each time, I hoped someone would have answers. But local medical professionals weren’t able to help, and I watched my son continue to struggle while we searched for someone who could.
Eventually, he was admitted to Nationwide Children’s Hospital in Columbus, where he stayed from November 2025 into April 2026. For the first time, we were with a team who saw what I saw. They knew what catatonia was, and they knew how to treat it.
On December 10, 2025, my son began electroconvulsive therapy, or ECT.
I won’t pretend those three letters are easy to hear as a mother. ECT still carries decades of fear and stigma. But for severe catatonia, it is a well-established and often life-saving treatment, especially when medication alone isn’t enough.
His treatment didn’t end with one or two sessions. It continued after he left the hospital, and by August 2026 he had received about 43 ECT treatments.
That number still feels almost impossible to write. Behind every one of those treatments is a mother who hoped for more moments of the boy she knew.
To the parent awake at 2 a.m.
Somewhere tonight, a parent is watching their child change and can’t get anyone to listen. Maybe that’s you.
You don’t have to know the diagnosis to know something is wrong. You only have to say:
“This isn’t my child’s baseline.”
Watch for changes in movement, freezing or staring; speech and communication; sleep, eating or drinking; skills your child used to have; and new agitation or self-injury.
Write down what you see and when. Take short videos of your child walking, eating and going through daily routines, because doctors see a snapshot and you see the whole story. Ask directly: “Could this be catatonia?” And if help isn’t available close to home, keep looking. It may be worth the drive.
Get help right away if your child stops eating or drinking, has a fever or sudden changes in heart rate or breathing, or becomes severely agitated or self-injurious. Catatonia can become a medical emergency.
Where to find help
- Nationwide Children’s Hospital, Columbus: experienced in diagnosing and treating catatonia, including ECT for children and teens.
- The Catatonia Foundation (thecatatoniafoundation.org, 248-579-8829): information for families and resources to share with your child’s doctor.
- SPACES: a webinar series on catatonia in autism for families and caregivers.
- Other parents: families who have walked this road will understand without you having to explain.
We are still walking this road
My son’s story isn’t over. There have been hospital stays, treatments, setbacks and progress.
But there have also been moments when I see him coming back through the illness: pieces of his personality, his expressions, the things that make him who he is.
Those moments keep me going.
Sometimes the most important thing a parent brings into a room full of professionals isn’t a degree or a perfect explanation. It’s knowing your child well enough to say, “This is not my child’s baseline. Please keep looking.”
I started this story by saying I am a nurse. That’s still true. But on this road, I am first and always his mom. And I will always fight for him to be seen and understood.
Jodi Peacock is a registered nurse and mother in Toledo.
