Susan's Blog

Friday, June 19, 2015

Catatonia and Autism

A few weeks ago, at Special Olympics State Games for Massachusetts, Nat’s team began their relay. At either side of the pool stood teammates waiting to jump in for their turn.

Nat was third. As the second swimmer approached, he stood alert, waiting. When it was time, his body curved into an arch, ready to dive.

He stood their, poised over the lip of the pool, not moving.

“Nat, go!” I yelled.
I yelled again. And again. I tried to walk closer to where he was standing, but I was blocked by a lot of people and a wall. Ned joined in, shouting at Nat, trying to get his attention. We screamed ourselves hoarse. “He has a different coach over there,” said Ned. “She doesn’t know to tell him to get in the water.” My anger shot way up. Why would they do that? What’s with that, a different coach!?

“NAT! GET IN!” I willed him to get the f*** in that pool. This was SOMA State Games, Nat’s favorite day of the year. Why wouldn’t he move?

Finally, after what seemed like hours, and after the race was long over, Nat went in. He swam great. Everyone in the stadium clapped. This is Special Olympics after all, and every single person there knew this could have been their kid. And every single one of them was thinking, Great! He finished!

But this was not over. No, because this kind of thing had been happening since perhaps November. Nat would come home as if in a daze. No smiles, not stimming, no pacing. No self-talk. Just standing or sitting very still, hands slightly out in front of him, his lips drawn tightly over his teeth as if someone had said, “Nat! Close your mouth!”

So for months I had been worrying that someone somewhere was being mean to him, abusive, and his spirit was being crushed. I kept asking him, “Is someone being bad to Nat? Are you hurt? Do you like your job?” Peppering him with all sorts of useless questions, just indulging my panic. Nat can’t usually answer those sort of questions accurately. I don’t know where the sentences I shoot at him go, I imagine lances falling impotently as they hit his Kryptonite skull. Except Nat is the good guy.

I’ve been a mess. Never consistent as a mom, never the kind of mom recommended by 4 out of 5 autism specialists. I’ve been doing everything: coddling him, prodding him, prompting him, leaving him alone, giving him space, nagging him, and just worrying out of my mind about Quiet Nat. Everyone has been noticing. His caregiver (of course). The Day Program. My parents, my sister. He was this way even with them, his favorite people. And at the ice cream store. Quickly and stolidly eating his ice cream, but no joy. No one could get a smile out of him, ever. He just kept standing there, so still, so frozen.

And intermittently, he would be extremely giddy, giggly, almost out of control to the point where when laughed, spit would fly out of his mouth. “There’s no middle ground,” a job coach wrote in his notebook to us.

What was it? Seizures? Depression? Bipolar? Abuse? But if abuse, why would he be able to laugh at other times? And willingly go back to his routines of living with his caregiver and going to his day program? And anyway, there was really no way I could actually believe that he was being abused by any of these caring people in his life. Even though I explored this as best as I could.

Off to the doctors. Several different specialists later, we went to our neurologist of 22 years. She watched a brief video Ned had taken of Quiet Nat, and she said, “this is not seizures. This is not depression. This looks like catatonia to me.”

What was that? “Catatonia. This is a small subtype of autism. It means he freezes up. He can’t move forward. Can’t do the simplest things at the moment he’s experiencing it.”

“What do we do?”

Unfortunately, she did not know much about it, but there were two specialists in the country who did. One was in New York.

That night I wrote to and talked to various expert parents I know, who gave me an idea of the treatment: an Ativan-type of drug. One friend even told me two tablets of Curcumin, from the Turmeric family. Curcumin has been thought to prevent Altzheimer’s, though I don’t know if there are actually peer-reviewed, double-blind studies. But Ativan is a drug a lot of people know about, so I am not afraid of it.

We have an appointment with the New York specialist on July 2. Stay tuned for more.




My son, who has Aspergers, has had this catatonia like experience. In my experience what helped was short term diazapam. Peace and quiet. Patience and not getting visibly upset but letting it happen till its over.

The experts I’ve spoken to explained to me its not full blown Catatonia but related to Autism when anxiety and stress builds up.

I’m not sure what Ativan is as we live in Scotland. It might be known by a different name here.

Hope this helps.

— added by Margaret on Friday, June 19, 2015 at 12:01 pm

Thank you, it does help.

— added by Susan Senator on Friday, June 19, 2015 at 2:39 pm

Sue and Ned,

Please be strong. I remember your stories of way back in Arlington, as fresh, raw autism parents. This is just another hill you have to climb over. You guys are amazing and never fail to inspire me.

Keep plugging away.

(FWIW, I remember from my ER intern days that Ativan has been used forever in treating alcoholism. It’s also an anti-anxiety drug)

— added by Andrew on Friday, June 19, 2015 at 4:27 pm

Thanks, dear Andrew. I am tired, that’s all. I’m not only going to be strong, I’m going to kick this thing’s fucking ass all the way back to Bruno Bettelheim in Hell. This is the positive side of being hypomanic — I get on a tear.

— added by Susan Senator on Friday, June 19, 2015 at 4:29 pm

We experienced this with my 20 year old son 2 years ago when he would repeatedly freeze in odd postures while getting dressed. He would become immobile for long periods of time. It was so scary and made me realize even further the layers embedded in autism and aging. I researched Catonia and found one rating scale that helped a trusted psychologist validate In part our concerns. We suspected anxiety and stress as contributors (although my mind wandered to much worse). ‘ Talk therapy” wasn’t exactly an option. The neurologist had little advice and we basically kept to consistent, structured and familiar routines to work through these episodes.
I really appreciate that you share your thoughts and experiences with Nate. They run parallel in so many ways to our experiences.

— added by Paula on Friday, June 19, 2015 at 7:57 pm

Hi Susan:

Before I reached the point where you even wrote “Catatonia” I was thinking…it’s Catatonia! My child recently developed this too and I have been researching constantly and talking to parents in NY and CA. The leading expert in Autism Related Catatonia is Dr. Lee Wachtel out of Kennedy Kreiger Inst. in Baltimore. It’s where all of the parents I have touched based with go to (even the parents in NY) as she is number one in Autism Related Catatonia. It is such a complex issue (and heartbreaking) and is also, from what I understand, a spectrum type disorder and most doctors in Boston (and most other places!) do not really have the expertise needed. Unfortunately I am told it does not just go away and will always be present. Yes, Ativan helps but from the parents I have spoken to it is certainly not a cure all and their kids have a lot of problems with Catatonia. Mine does also. It appears to be a GABA receptor problem so I have been researching that a lot.

One of the twins from the book,”Silent Running” by Robyn Schneider, developed Catatonia. It is a tough issue and I am just beginning to try to figure it out myself and will be going down to Kennedy Kreiger. Let us know how it goes as it is important parents really support each other and share any info. they can on this really diffcult issue.

— added by hi susan on Saturday, June 20, 2015 at 2:40 pm

Also, just to rule out PANDAS (see below) I had the doctor run an ASO and Anti-DNASE. My child’s catatonia is not a result of PANDAS it seems but if you read the research(read the one from Autims Speaks website that is entitled “Does My Teen Have Autism Related Catatonia”) every doctor stresses the importance of first ruling out any underlying medical problem that could be driving the catatonia. My Neuro also ran an ANA, Lyme, CBC, etc. All was normal medically speaking and we believe we are looking at straight Catatonia. It has been SO difficult and heartbreaking for my child as well as us. My child has lost so much independence and skills. The skills are still there but the catatonia is blocking all of the initiation of the skills and the need to prompt then becomes a vicious cyle where the child also become dependent on that. It has also totally thrown us into complete confusion as to how to plan for the future as the prompt dependency is so strong.

Friday, May 13, 2011
Elizabeth Ballroom E-F and Lirenta Foyer Level 2 (Manchester Grand Hyatt)
2:00 PM
S. Kile1, M. Chez2, C. Parise3, A. Hankins4, T. Donnel3, R. Low5, S. Caffery6 and C. Lepage6, (1)Sacramento, CA, (2)Sutter Neuroscience Institute, Sacramento; UC Davis Medical Center, Sacramento, CA, United States, (3)Sacramento, CA, United States, (4)Sutter Institute for Medical Research, Sacramento, CA, (5)Sutter Neuroscience Medical Group, Sacramento, CA, United States, (6)Sutter Neuroscience Medical Group, Sacramento, CA
Background: Catatonia has been described for centuries yet the etiology of this disabling illness has remained elusive and it is often regarded as an idiopathic psycho-motor complication of psychiatric illness. Recently, catatonia has become recognized as having an increased prevalence (12-17%) in young adults with autism spectrum disorders (Wing and Shah, 2000; Billstedt et al., 2005). Laboratory abnormalities have been reported in some cases of catatonia (eg, elevated CPK, low iron, elevated CSF HVA); however, to our knowledge, this is the first report of abnormal streptococcal antibodies in catatonia.
Objectives: To evaluate clinical features and diagnostic studies in catatonia in young adults with autism spectrum disorders.

Methods: A record review of 78 patients who presented to the Sutter Transition for Autism and Neurodevelopmental Disorders (S.T.A.N.D.) Clinic, a transition clinic for young adults with neurodevelopmental disorders, over 18-months since inception.

Results: Five cases (age range 16-29) out of 78 of teens and adults (age range 16-60) with autism spectrum disorders presented with catatonia. Laboratory screening revealed an elevated anti-DNase Ab (avg. 544 [340-1360]; nl <85) in all five subjects with catatonia and an elevated ASOT (avg 437.8 [105-1210]; nl <200) in three of the five with catatonia. No clear recent streptococcal infections were identified in these five subjects. Three subjects demonstrated a positive clinical response to immunotherapy (the other two patients are still being assessed and are likely going to start immunotherapy soon).

Conclusions: We hypothesize that the streptococcal antibodies may point to a neuro-autoimmunologic etiology of catatonia in autism spectrum disorders. Similar neuro-immunologic mechanisms have been proposed in other neurological disorders associated with streptococcal antibodies (PANDAS, Sydenham’s chorea, and post-streptococcal dystonia). Further investigation is important as this could represent a biomarker for catatonic patients who may respond to immunological treatment strategies.

— added by hi susan on Saturday, June 20, 2015 at 2:59 pm

Keep me posted about what you learn. Who is the doc in NY, what speciality? How did you find your way to him? Catatonia is something I see a little and want to understand more.Caring arms hold you,Nat, your beloved family….

— added by Steph on Saturday, June 20, 2015 at 4:55 pm

I hate this. I hate that enough just never seems to be enough. Hard just isn’t hard enough. Sad just isn’t sad enough. I hate it.

— added by Jacquie on Monday, June 22, 2015 at 10:09 am

My 27 year old has been suffering from Catatonia. I didn’t know what it was.

— added by Feve on Saturday, February 11, 2017 at 10:27 am

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