Catatonia in Autism

Hi I’m struggling too with austistic catonia had 16 ECT as nearly died and depression and stress getting worse I was wondering if yo6 have any advice on how you get back too normal 

Your help is so valuable to me - as my son is also non-verbal but cant make his thoughts and feelings known to me - hearing yours is like Im listening to my boy. Thank you so much for this!! I am seeing the pyschiatrist tomorrow and am going to mention what you  have said. I am going to look at the vests and blanket. He has been diagnosed with depression before and we tried a anti-depressant but it had no effect. He is very stressed at the moment due to summer school holidays - hes at a care centre but no evening clubs - he has also started visiting a carers house for overnights and we are stressed due to my father-in-law having a serious operation for cancer. This all is having a massive impact on him but unfortunately there is nothing I can do about any of it. Heres hoping with some help - we will get through this period and he will improve. We are then in another bad period leading up to Xmas and New year as every year he finds it hard - oh well-  may get a few decent weeks in between for him.

hi swoo,

woud definitely recommend the college idea,it might be the change he needs as frustrating and hurtful as changes can be to us;am at a special college to as they allow post twenty five students,doing animal therapy and management,woud recommend the specific college but think it woud break the rules.

as for the respiridone,it might be worth changing to an alternative anti pyschotic rather than just upping it as not all of us react enough to it,if he hasnt already it might be worth asking about the possibility of having some anti pyschotic available as a PRN [as and when required] as well as part of his daily medication,this is how its like with mine and allows support staff to give it whenever am stressed/frustrated,it works quickly as well.

was originaly on respiridone as well but the effects werent strong enough even on a higher dose,was switched to haliperidol which is a more potent anti pyschotic and it is quite sedating so really helps against severe challenging behavior but am able to keep a quality of life whilst using it.

one thing about the catatonic behaviors, he might be severely depressed, as when am severely depressed it appears as catatonic behavior and much worse severe challenging behavior than normal,it took years to get it recognised by self and specialists because they just blamed the ID and autism.

has he got any sensory equipment?

woud recommend having a look into shops like rompa,who sell weighted and compression vests,have always found these help,theyre not cheap but mine has lasted for years so theyre worth the money for what they do.

the OT might be able to fund weighted blankets for him,but it depends on the borough, mine funded both a weighted blanket and a lap blanket for when in the community as am a wheelchair user due to severe challenging behavior.

HI

Thanks very much for your reply. He has a severe learning disability - he has made no progress really at school in the last few years. ( a communication and interaction special school). I am now looking at a college that offers activities like painting, woodwork, gardening etc as this may help his need for alot of space to pace and run (they have 23 acres of land). The med is is on is an anti-psychotic (Respiradone) and has been for long while. The psychiatrist is talking about increasing it but he needs to see an OT first to see if they can help. Do you think then that this is the right way forward? His levels of aggression at the moment are quite high but it is school hols and we have other stress's going on which he has picked up on!! I need to get these down as I dont think the college will be able to cope with such aggressive behaviours ( am hoping but need to be realistic too).

Thanks again

hi swoo11,

am also like him as a thirty year old-echolalic communication as well as fully non verbal much of the time but am able to avoid the worst of these challenges mostly;through text.

have been on benzos [diazepam,lorazepam and tempazepam but currently on diaz] for many years every day as part of daily medication and also as daily PRN use,but they dont work anymore and the doctors wont increase them so am on a withdrawal program instead.

what woud recommend is he try anti pyschotics, am on a lot of haliperidol;both as a twice daily medication and as PRN [up to three lots daily],and this has been a life line with reducing severe challenging behavior and extreme autistic related anxiety.

as for son,am guessing he has a diagnosed intelectual [learning] disability,he will probably transfer to the social services intelectual disability team in that case, am under them and regulary see their pyschiatrist,they are extremely helpful and understanding of both the ID and autism sides so there is nothing to worry about if theyre anything like mine.

Thank you - I have checked the website out and the meds he is on is not listed (unless its under a long chemical name!!) They are not doing any research at the moment either . My son cannot talk and repeats what I say - if I say "are you ok?" he says ok - sometimes even repeats exactly what I have said. I have read about a boy who was on this medication and pointed to his head saying "head hurts" and all his routines and rituals increased while he was on it. The thing is we have one psych who deals with our kids and he is like a god with his wisdom in this area (I also think he is and feel awful doubting him). My son is 18 in December and will transfer to Adult services - maybe a new psych will have a different opinion.

Thank you so much for your advice though - I was not aware of that site until you mentioned it. Kind regards

Hi swoo11.  I'm sorry to hear about your son.  It must be very difficult for all of you.  I presume a psych has suggested benzos or ect?  Also has it been ruled out that the meds he's on at present aren't contributing to his condition?  Have a look at the Research Autism website if you haven't already.  It's where they check out "treatments" for autism, anything from pharmaceuticals to massage + things in between are there.  They have a rating system, altho there's a waiting list as it takes time to check everything properly.  ECT can help some people who are depressed when other treatments have failed but it does have a "bad reputation" from the past.  I can understand why you'd want to avoid it for your son.  Has he managed to say anything about his condition to you or his Dr?