Autistic Catatonia - has anybody been diagnosed with this?

[Wombat140]

Have any of you or your children ever been diagnosed with "Autistic Catatonia"?  If so, what happened about it?  Did it get worse until treated, as some of the websites I've seen suggest it inevitably will?  What (briefly) were the symptoms?  And, most importantly, did it resolve with treatment for PANS or whatever, without needing any other conventional treatment?

I'd very much like to know, and quickly if possible, because my psychologist thinks I might have it and has referred me to someone for a diagnosis.  After looking into it, I think some of the (rather cryptic) symptoms do sound like me, particularly when one of my OCD rules has been irretrievably blown, but it seems that the officially recognised treatment is high-dose benzos or ECT, which I'm not thrilled about!

Many thanks,

Wombat140

(NB I'm 27 and have been ill since I was 13, and several people over the years have diagnosed PANS of some sort, though I've never really testedc positive for anything.  Doing any very through treatment for it has been obstructed by various factors - can't find experienced enough doctyor who's close enough to see in person rather than long-distance, various things cannot be authorised unless the doctor has seen me in person, etc - but just now we think we may be on the trail of a more suitable doctor so hopefully there may be a prospect of having a more thorough look at the PANS possibilities.)

[bobh]

Our son did have some catatonic-like symptoms for several months, but none of the doctors that saw the videos labeled it as such.  But then again, the only diagnosis we did get for it was 'psychogenic seizures", and that was so off, so (to me), the fact that they didn't label it catatonic means very little.

[Wombat140]

OK, thanks.  What happened?  I mean, was he put on or already on psychiatric medication, or did it resolve without that?  (And what were they like?  Otherwise I don't know whether it's like mine or not - there are so many symptoms listed for catatonia that lots of different things could look "a bit like it".)  Sorry, would mean a lot if you could clarify.

[bobh]

We have videos - they are very scary for parents.  His body got mostly stiff, with mostly his legs twitching, and he would tend to slowly slide off the couch onto the floor (still with a stiff trunk),.  We would move things out of the way.  He could turn to look at us (hence, not a real seizure), eyes wide and pupils dilated, but couldn't talk.

By the time we finally got help, they had reduced in frequency (1 to 3 a day went to a few times a week, and they got shorter in length).  We were not on any psych meds at that time.  An SSRI was suggested, but we didn't take it.

[Wombat140]

Ta Bobh.  Well, THAT's certainly not what I've got. 

I did find a paper (Hare and Malone 2004) specifically about catatonia in autism, they apparently were the ones who invented the term "autistic catatonia" and suggested that the catatonia-like collections of symptoms they were seeing themselves and hearing reported by others might not be quite the same as typical catatonia, if indeed there is such a thing.  They had a case study at the end that did sound exactly like me, except that it didn't go into what happened if he was interrupted in doing this.  With me, I go into a state of agitated nonsense that sounds horribly like the descriptions, such as they are, of "catatonic excitement", although also quite like what people on here describe as "PANDAS rage", although from the inside I wouldn't describe it as rage, but people have informed me that I'm wrong about that. 

Catatonia seems a bit of a mess frankly, they can't even decide whether these symptoms the autistic kids have represent a movement disorder (like Parkinson's) or an extreme fear response.  I may be iggnerant but couldn't they get a clue to that one by using a pulse monitor, for one thing?  (I mean, with those subjects who will put up with wearing one).

Edited June 6, 2018 by Wombat140