Catatonia in those with autism?
More and more books are now looking at Catatonic episodes in those on the autistic spectrum.
In the first of my four autobiographical works about my life with autism, Nobody Nowhere, I also wrote of a catatonic state brought on by acute depression and anxiety.
In books like Autism and Sensing; The Unlost Instinct, in Autism; An Inside Out Approach, in Exposure Anxiety; The Invisible Cage and in The Jumbled Jigsaw, I wrote of body disconnectedness and other system’s shutdown states, including shutdown akin to what is described in catatonic episodes.
There’s a difference between having catatonia and having catatonic episodes triggered by acute anxiety, depression or bipolar and this may be useful to explore in the context of autism for SOME PEOPLE.
These episodes would be catatonic but not Catatonia itself.
Perhaps particularly in Rapid Cycling Bipolar (which can have onset as early as 18 months of age) state where mood fluctuates so extremely (mood extremes can cycle up to ever 45 minutes) then we may well see a stream of catatonic episodes in a day, week, month, year yet the person may never remain completely in the catatonic state.
This is worth a thought, because unlike catatonia in those with chronic anxiety and depression or adult bipolar which may cycle only a few times a year, its possible that with up to 30% of people with autism having undiagnosed (and untreated) Rapid Cycling Bipolar we may be seeing a severely disruptive influence on development of regular catatonic episodes.
It’d be interesting to compare this possibility with acute episodes of what I wrote of as Exposure Anxiety and look a the long term emotional training of such a potential interaction on functioning and self help skills. There’s a newly recognised form of Catatonia which is far more active and agitated than the traditional stereotype. What would this look like as ‘episodes’ rather than Catatonia itself?
If catatonic episodes, in either their still/mute/passive or agitated/active/shouting forms, were severe and frequent, then if they are presumed ‘part of the autism’ and left untreated, they probably won’t lead to collapse or death as in the case of full Catatonia but the impact on learning, interaction, communication, development, family structure and stability, futile and desperate spending on behaviour management programs for a chemically triggered condition not within the individual’s control.
It’s easily imaginable that the current idea of autism as ‘hopeless and untreatable’ would become a self-fulfilling prophecy, not caused by ‘autism’ but of ignorance of some of the things that co-occur with it that we fail to identify or understand.
This failure to identify or understand these things in autistic individuals is fueled by organisations and some high profile individuals on the spectrum that continue to publicise autism as ONE THING for all with the diagnosis. It is my hope this will change.
Donna Williams *)
www.donnawilliams.net
autistic author of 9 books in the field of autism,
consultant and teacher.
From the National Autistic Society:
http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=298&a=3346&view=print
There is little information on the cause or effective treatment of catatonia. In a study of referrals to Elliot House who had autistic spectrum disorders, it was found that 17% of all those aged 15 and over, when seen, had catatonic and Parkinsonian features of sufficient degree to severely limit their mobility, use of speech and carrying out daily activities. It was more common in those with mild or severe learning disabilities (mental retardation), but did occur in some who were high functioning. The development of catatonia, in some cases, seemed to relate to stresses arising from inappropriate environments and methods of care and management. The majority of the cases had also been on various psychotropic drugs.
another article
whilst the traditional picture of Catatonia is stillness, catatonic episodes can be far from still…..
catatonia
http://www.questia.com/library/encyclopedia/catatonia.jsp?l=C&p=3
catatonia (kăt”utō’nēu) [key], mental state generally characterized by statuesque posturing, muscular immobility, mutism, and apparent stupor. The muscles are held in a pliant state called waxy flexibility, and the catatonic person obediently permits himself to be rearranged into awkward positions that he may subsequently hold for hours. Another form of catatonia involves continuous incoherent shouting, psychomotor agitation, and a violent destructiveness which can lead to collapse and death if untreated. Loss of memory or intellect is not necessarily implied: catatonic patients often display excellent memory of their surroundings during the catatonic state. In recent years, drug therapy has been helpful in the avoidance of catatonic disturbances, and the appearance of catatonia is now quite rare. Described by Karl Kahlbaum (1874) as catatonia, the term was subsumed under Eugen Bleuler’s concept of schizophrenia in 1911. It has recently been classified as catatonic schizophrenia by the American Psychiatric Association.
A new book coming out with Jessica Kingsley Publishers
How To Be Yourself in a World That’s Different
An Asperger’s Syndrome Study Guide for Adolescents
Yuko Yoshida M.D.
Foreword by Lorna Wing
Translated by Esther Sanders
Paperback, ISBN: 9781843105046, 112pp, 2006, £9.99, $14.95
BIC: JCD VFPD YXRH
description contents
How to Be Yourself in a World That’s Different is an accessible guide to Asperger’s Syndrome (AS) written for young readers who have been diagnosed with AS and other autism spectrum conditions.
The book features a clear explanation of the condition, including symptoms that are common to people on the autism spectrum, such as a hypersensitivity to touch and difficulties with balance and coordination. The characteristics and symptoms of other syndromes that often coincide with AS are also discussed, for example AD/HD, learning disorders, and tics, as well as the temporary states of mental dysfunction that people with AS tend to be predisposed to, including depression, anxiety, obsessive and compulsive behaviors, and catatonia.
This informative and encouraging text highlights the positive aspects of autism spectrum conditions, such as diligence, fairness, and a knack for unique ideas, but it also acknowledges the daily challenges faced by young people with AS and, crucially, offers strategies for dealing with these. Using case examples, Yoshida explores the difficulties of disclosing a diagnosis, takes readers through the stages of practicing key social skills, and offers advice on seeking support.
other definitions and descriptions of Catatonia:
http://en.wikipedia.org/wiki/Catatonia
http://www.emedicine.com/neuro/topic708.htm
Catatonia in those with autism
http://bjp.rcpsych.org/cgi/content/full/177/2/180
http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=298&a=3346&view=print
http://www.neurodiversity.com/inertia.html
http://www.psychiatrictimes.com/Children-and-Adolescents/showArticle.jhtml?checkSite=psychiatricTimes&articleID=193005692
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=10619284&dopt=Abstract
http://www.jkp.com/catalogue/book.php/isbn/9781843105046
-- Donna Williams *) Ever the arty Autie. http://www.donnawilliams.net http://www.auties.org
Hi Donna, it has been a while since I responded to your posts, but I always read them! I have a son Robert, who is 8 years old and has aspergers, he is the light of my life!! I was hoping you could assist me with a problem we are having. Robert is showing a lot of aggression at school and in particular towards his aide, who is a wonderful person and fantastic with Robert. He gets very frustrated and then becomes aggressive. Can you advise me about this as I would like to know how I can help him through this. Is there a service to help him with his aggression? I am in Rosebud Victoria.
Are there any methods I can use to help ease the frustration? He is a very bright and clever boy who is doing great with his school work but does not cope well with the rules and with the other children. Any help would be greatly appreciated!!
Thanks, Regards Robyn.
Hi Robyn
this is my blog, so its a news/articles site.
sounds like you’re looking for a consultant.
I have a consultancy service you can look through on
http://www.donnawilliams.net
Otherwise there’s all sorts of options.
Psychologists work with people on the spectrum and with anger management, but many tend to see issues as psychological rather than chemical or about information processing differences so they don’t necessarily consider things like co-occurring bipolar, Reward Deficiency Syndrome, calcium-magnesium, mega B complex, glutamine or omega 3s in mood management or the impact of unaddressed foor intolerances or allergies.
Psychologists also often aren’t highly experienced with language processing disorders and the impact on things like struggling with a lack of simultaneous processing of sense of self and other, necessary to effective behaviour management stuff when working with people on the spectrum.
Then there’s the possibility of auditory or visual processing challenges that make Robert more vulnerable to aggressive outbursts.
And the same issue exists if you go to a psychiatrist or naturopath or Cranio Sacral therapist or….
Each specialises in only one facet and first you have to be clear which facets are at work in Robert’s case (this is what The Jumbled Jigsaw book does… it helps people pinpoint which co-occurring conditions may be contributing to a given challenge and the respectful and healthy approaches related to each).
So a consultant SHOULD review all these possibilities and many only specialise in one or the other after each piece has been identified.
Anyway, have a read up on my consultancy and if you’d like to book an online or face to face consultation after that, feel free to do so.
I’m fairly affordable.
But as the underlying causes are potentially vast its unprofessional to give one size fits all answers based on the term ASD alone.
Hope that helps.
http://www.donnawilliams.net
Thank you Donna, I shall go to your web address and have a look. As always you are very informative! Much appreciated!
Robyn
I have a diagnosis of catatonia in addition to autism, and what I’ve noticed is increased sensory overload, and with that, coming decrease in finding body parts. And then whatever automatic background stuff is going on, seems to take over, whether that is sitting very still or moving around a lot. It’s the overload leading to lack of body awareness leading to lack of body control, in my part.
Also sometimes I notice that when I freeze I understand what’s happening around me better, so I’ve wondered if it’s an adaptation of some kind, like body awareness shutting off so I can understand other things.
Donna,
You made these comments in your article.
“… a catatonic state brought on by acute depression and anxiety.”
“There’s a difference between having catatonia and having catatonic episodes triggered by acute anxiety, depression or bipolar and this may be useful to explore in the context of autism for SOME PEOPLE.”
“I wrote of body disconnectedness and other system’s shutdown states, including shutdown akin to what is described in catatonic episodes.”
First, it is not accurate to refer to someone who does not have catatonia as having, at times, catatonic states or episodes. Secondly, what may APPEAR to you as a catatonic state that has been triggered in those with anxiety, depression, bipolar, etc, is not a catatonic state itself. It is something completely different. It has nothing to do with catatonia in any sense. Catatonia is a very particular condition that is characterized by profound and consistently occuring symptoms. To say that someone with severe depression who is having a episode of profound depression of limited/lacking movement, limited/absence of motivation to move, eat, etc … to say that this, as an example, is a catatonic episode or state is false. The same applies to the other conditions you listed. The episodes you refer to arise from those conditions themselves. Also, as mentioned above, catatonia is a consistently occuring condition.
A main part of catatonia:
//increased slowness affecting movements and/or verbal responses;
//difficulty in initiating completing and inhibiting actions;
//increased reliance on physical or verbal prompting by others;
//increased passivity and apparent lack of motivation.
Many people experiences instances of much of this, but they do not have catatonia. Secondly, it is not accurate to say you’re having a “catatonic episode” when you experience instances of this. Rather, it is only accurate to say that you condition (bipolar, depression, etc) has worsened in severity.
There is a great tendency for people to extend diagnoses where they shouldn’t be eztended. A great tendency for people to over diagnosis themselves. Tendency to use diagnostic names apparently for the excitement of diagnosing themselves with this and that and this and that, and they love talking about it all.
If someone is extremely depressed, won’t move, won’t look at anybody, won’t eat, won’t clean themselves, and has to go to the hospital … this person’s depression has intensified greatly, this person is not having a catatonic episode, this person doesn’t have catatonia.
Hi Chris,
I’m not a purist and with books like Shadow Syndromes indicating we all are on spectrums of various things, this suits me as a sociologist to see people as far more diverse and sharing of all manner of things without necessarily needing to collect labels.
It’s judgmental to presume all people interested in spectrums and shadow syndromes are all dramatic-histrionics indulging in some excited little mind game with themselves. People are far too diverse to have any one set of motivations for anything. And those who are not purists may simply be more fluid or surrealist in their thinking, able to explore possibilities without dictatorial rigidities, perhaps only because they are eccentric thinkers or enjoy anthropology, sociology, social psych.
I do think there’s an over pathologising happening in the modern world, but I equally feel that recognition of spectrums and shadow syndromes undoes much prejudice and taboo, undoes much of the them and us thing and as a holistic egalitarian, humanist, taoist, that sits well with me.
Also many conditions once thought exclusive, rigid, pure categories are today understood more open mindedly as spectrums. And this can only advance knowledge of complex interactions.
Perhaps those fiercely defensive of purism are afraid of the preciousness of their categories being extending to those they consider ‘normal’. Where in my world normality is relative and not at all an absolute.
Understand I’m only a social philosopher, a surrealist, and I’m not here to get into pedantic dramas with any purist, but nevertheless, your view is respected as much as I expect the views of others to be too.
Hi Donna,
I have a 19 yr-old. Just diagnosed with Aspergers, Eating Disorder NOS and Depression. We just ordered a genetic study by Amy Yasko and are waiting on results.
My son did pretty good until he hit middle school, though he has had extreme oral sensitivity since age 2 which now has him limited to some dairy, bread products, and junk food, a little penaut butter, an apple a week.
GFCF diet at 15 didn’t change anything. We’ve tried just about everything. Now for the first time, he’s on Ambien for sleep, Prozac for depression and doctor wants to put him on Anti-psychotic for oral problem. Held down a job for a year until just recently. Boss said no one wants to work with him.
What do we do?
Hi Crystal,
I’m GF/CF and low salicylate/phenol and low sugar.
I get addicted to sugar and it sets off withdrawal stuff that makes me agitated and addict-like. The salicylates make me highly distracted, fragmented, and increase the bipolar stuff. You can find salicylate lists on the net.
I don’t go for the term ‘oral problem’ because often that’s a psychological, emotional, personality, visual perceptual, cognitive processing or zinc deficiency issue. I think the assumption its all oral hypersentivities is simplistic to the max. I do have some which are… have a physical reaction to holding wood, paper, cloth in my teeth, but we shouldn’t promote a stereotype that stops us seeing the variety and diversity of underlying issues for different people.
This is a blog, a news and articles site. If you want a consultation do visit http://www.donnawilliams.net and read the ‘consultancy’ section ans see if its of use to you.
I find 2000mg omega 3s, mega B complex, calcium-magnesium 1,500mg and glutamine 2000mg is essential to my mood-anxiety management. Keep an open mind that if he went GF/CF and was salicylate intolerant, you’ll likely not see a full improvement till he did all three as going GF/CF often means people increase the salicylate levels without realising they’re sabotaging what they’re seeing.
re work, go have a visit to http://www.auties.org
its free (donations welcome) and all about promoting self help employment opportunities.
Thanks Donna. I appreciate your insights.
Sorry I posted in the wrong place.
I’m amazed and grateful that you responded to my e-mail.
Hello Donna,
I’ve just learned about ‘autistic catatonia’ and am searching the web to understand. Yours is the first article to really help me.
I have found enough to go to my 29 year old son’s doctors to ask them to research and help us identify this - or not. I have been wondering if he has global apraxia - the results are basically the same.
He is an epileptic, so - thinking that the behavior might be seizure related - described my son’s ‘Tin Man’ behavior. He freezes up, can’t move anything by will, hears and feels everything. When we first asked him what was wrong he was able to mumble out of the side of his mouth “Oil can”.
The doctor’s response? He almost gleefully said, “Sounds like Parkinson’s Disease!”
I feel I am on the right track.
gleefully?
aiaiaiiaiaia
Its certainly worth checking out both.
Catatonia, however, is much easier to treat.
I have met another man in his 20s who was totally ‘at home’ in there but had ‘rusted up’ due to Catatonia.
All the best to you and your family.
Warmly,
Donna *)
I came across your sight..and was pleased to find great information. I will be purchasing your book. I too have the expeirience of autistic catatonia in my life these past 29 years. Mine is a bit different as the person with this is my 31yr old son. He has Downs Syndrome,diagnosed autistic by age 2 1/2..then from an unknown trauma at an MRDD school setting developed severe catatonia(Age 16) Unable to speak,move or acknowledge life, he was in this stage for 8 months as no physician wanted to treat him. They only said, here is the number to someone whom might be able to help. The physicians would not even see him,only would talk to me on the phone. I kept journals of each day,as my sons speech dissapered at age two. The journals include symptoms,searching for help,and all my personnal thoughts. I wrote things to clear my mind each night to sleep. Finally, I was introduced to one of the worlds best catatonic specialist at Ohio State University. He was able to help Eli and has co ntinued over the past 16yrs.The catatonia appears each day and with the help of tthe medications, he can function. My sons catatonia was life threatining and ECT was suggested. Well…I published my book Feb 2008, with hopes of helping others. Actual tests,medications,symptoms and stories are included. There was no help when I was searching. Now I am thrilled at the knowledge avaliable on the net. Good luck and love to you, CarolHawks.
I have a google storefront with videos of Eli.
Hi Donna,
It is me again. I wanted to share with you and others Elis’ autistic catatonia. He has life-long catatonia which does interfere
with his life. His episodes of automatic,unanounced behavoir is apparent. He has to be stimulated to move around,pushed into walking(or bribed)His social life exists only when forced upon him. He shuts his eyes for hours. He is not sleeping, just sitting and not looking. His medications to keep him with our world are many and the doses increase each year. His speech is of two word sentances(he is 31yrs)and his eye contact is with animals. He has never cried and reacts to pain with laughter. He has carried small plastic canteens for 15 years now. He sleeps with them tightly in his hands and they go everywhere with him. He zones out for only minutes now instead of months. His agression towards things happen suddenly…then disappears. He seems to have no knowledge of what he did. The agression, luckily, is only towards objects and not people. He has lived the past 15yrs with autistic catatonia,and has survived. Dr Brendan Carroll,has made life possible for Eli. Google his name and he has many answers on his sites..and in his books.
I think people with any severe physical or sensory perceptual disability can struggle to find MOTIVATION to ue what is so problematic to use. So secondary issues like Selective Mutism, Learned Helplessness and passivity can add to the mix. That’s where an indirectly confrontational approach can drive people to have to use whatever strategies they can but the key is certainly WANT and when one wants nothing more than to disappear or finds that is the easiest function they have, then it’s really hard to find what to use to provoke them into self determined action. I had an aversion to compliments and touch and didn’t like anyone ‘knowing’ me so the environment could use these things to make me avoid or swing against something. That at least taught me that even people who have no strong WANTS other than to disappear, often still have intact ANTI-WANTS that can be tapped into to trigger action. I wrote about these in Exposure Anxiety; The Invisible Cage.
Donna
Thanks so much, as all things you have written provide me with insight to reach my son. I ordered a second book of yours today, Somebody Somewhere, as NN gave me happiness and reason to keep searching. My plan is to read all things written by you in hopes to understand my son and help him return to this world. His oddities though, make him who he is and he is loved by many.
You are now my angel.