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Autism Vox

Autistic Catatonia

by Kristina Chew, PhD on May 18th, 2007

In an essay in today’s Salon entitled Psych meds drove my son crazy, Minnesota novelist Ann Bauer writes about what happened when her “unique and funny and odd” autistic son was misdiagnosed at 17 as psychotic, and put first on an antidepressant and then on neuroleptics (Abilify and then Geodon) that made him “crazy”:

In reality, crazy is like war. It’s tedious for long periods of time, until it turns around and is devastating. It’s random, senseless, all-consuming, financially draining, destructive, ugly, sickening and gross.

It’s standing in the front yard wearing nothing but torn underwear and trying to control the thoughts of people who drive by. It’s saying yes to every question, no matter what the real answer. It’s drinking compulsively, straight from the faucet, then spewing a stream of clear-water vomit like a geyser.

In Salon, Bauer narrates this war to find our what was really going on—that her son had autistic catatonia, that he was not schizophrenic or psychotic—and the efforts to get her son back to be himself, to be the autistic young man, the chess champion, the 80s music buff.
A Wild Ride Up the Cupboards: A Novel

For a portrait of a younger, “unique and funny and odd” autistic boy growing up in Minnesota, see Bauer’s novel, A Wild Ride Up the Cupboards.

POSTED IN: Adulthood, Autism Lit, Books, Medicine, Psychiatry

16 opinions for Autistic Catatonia

  • mcewen
    May 18, 2007 at 1:41 pm

    Have you read it? The book that is to say? Can we expect a book review sometime soon? You know how nervous I am. I need ‘jolly’ for the time being.
    Cheers

  • Kristina Chew, PhD
    May 18, 2007 at 3:48 pm

    I have—it’s written from the perspective of the child’s mother. While the autistic child’s needs are central, there are two other important narratives intermixed: the increasingly troubled marriage of Rachel and Jack, and the life of one of Rachel’s uncles (who has been dead for some time, and who—at least I sensed this—seems a bit on the spectrum). It’s warmly written and Minnesota very clearly evoked—I have to locate my copy and will write more.

  • Amanda
    May 18, 2007 at 5:12 pm

    Abilify and Geodon are not antidepressants. They are neuroleptics.

    A class of drugs that is often strongly not recommended for people with catatonia. (I’m also diagnosed with catatonia and that class of drugs can indeed make me crazy, it can also cause stronger or even life-threatening reactions for me, and life-threatening reactions to those drugs are more common in people with catatonia.)

  • Kristina Chew, PhD
    May 18, 2007 at 5:25 pm

    Thanks, Amanda, I am noting the correction.

  • daedalus2u
    May 18, 2007 at 5:52 pm

    Scalpel or sword posted about an analogous disorder brought about by stimulents. Number one in this list

    http://scalpelorsword.blogspot.com/2007/05/beyond-threshold.html

    Discribed in detail here.

    http://scalpelorsword.blogspot.com/2007/03/more-on-agitated-delirium.html

    The connection to nitric oxide is that (I think), that basal nitric oxide serves as the “damper”, that slows the rate of change of physiology that leads to these types of metabolic events. People with low basal NO, (as I believe most ASD individuals are), already have their metabolism on a hair trigger.

  • Leila
    May 19, 2007 at 11:11 am

    What a scary story. I’m gonna keep my son away from this type of drug, thank you very much.

  • daedalus2u
    May 19, 2007 at 12:51 pm

    I tried to post this yesterday, it actually is supposed to precede my post #5.

    To emphasize what Amanda mentioned, the life threatening reaction (one of them at least) is malignant hyperthermia, othewise known as neuroleptic malignant syndrome. It is characterized by fever, disorientation, muscle rigidity, and is a life threateneing occurance even in a hospital setting.

    The “cause” is unknown, but I suspect that it is due to mitochondrial uncoupling, or uncoupling of the cytochrome P450 enzymes that metabolize xenobiotic chemicals. Normally, mitochondria and the cytochrome P450 enzymes are inhibited by NO, but if NO falls, the enzymes become more active, and generate superoxide which lowers NO still further, and accelerates metabolism even more.

    The mitochondria uncoupling can deplete ATP to levels below where cells can survive. I think that is what causes the multiple organ failure that is characteristic of this. Once that happens there is no way for the cells to survive.

    Joel had a good post today about positive feed-back induced instability

    http://thiswayoflife.org/blog/?p=170

    This is the kind of thing that is happening. The “metabolic setpoint” gets a little out of whack, the system over compensates, you get positive feedback and it pulls out all the stops and you overheat and die.

  • Amanda
    May 20, 2007 at 9:11 am

    Actually, there is, among life-threatening reactions:

    1. Neuroleptic malignant syndrome.
    2. Tardive dyskinesia affecting the airway (through affecting swallowing or breathing).
    3. Acute dystonic reaction affecting the airway.
    4. Anaphylactic shock.

    I have had #3 and #4 on multiple occasions in response to neuroleptics (and having a pre-existing movement disorder predisposes you to more movement-type reactions). I have not had #1 and I have only had #2 in ways that don’t affect the airway.

  • Kristina Chew, PhD
    May 20, 2007 at 2:52 pm

    Scarey to think about but I’d rather know about all of this before rather than (as in Bauer’s article) after.

  • Bonnie Sayers
    May 20, 2007 at 5:19 pm

    Hi Kristina -

    I found Ann’s article on digg and read through many of the letters posted as well and see Ann has a link on her website that will be working tomorrow on autistic catatonia.

    When reading the article I thought this might be what my son Matthew will become, since he has a 50% chance of being Schizophrenic due to the father. I also thought the issues seemed to stem from the antidepressant.

    My son turns 11 next month and has been on Geodon for three years, but at the same dosage. We experienced side effects with Risperdal and switched. My son had PICA before meds and was eating dirt, rocks, paint chips and tree bark.

    I just read reviews on amazon for the book, but think I will pass on that - not much time to devote to a novel.

  • carol
    Jun 4, 2008 at 1:48 pm

    My book covers my sons life with Downs syndrome,Autism,non-medical Catatonia,Bi-polar,and PTSD. The catatonia was present(severe)for 8 months before he was diagnosed.The symptoms are all recorded in daily journals and each medication tried/results are recorded. My son was lucky to have one of the top catatonic specialist working with him for many years to bring him back to life. http://stores.lulu.com/carolhawk Google my name.

  • carol
    Jun 18, 2008 at 8:45 am

    My son developed non-medical catatonia after an unknown trauma. He was in the severe stage for 8 months. After several physicians did not want to take him as a patient (stated they did not know what was wrong with him) a catatonic specialist agreed to see him. After three years of trial/error, medications to keep him functional was found. He did come to a critical stage where ECT therapy to save him was suggested. He has continued with the medications these past 15yrs and does cycle to catatonia sevaral times per day. The episodes of “spaced” lasts only minutes now. He does receive Risperdol/Ativan/Tegretol as well as other meds to keep him level. I kept journals on the prior months before/During and after catatonia was diagnosed. Also the symptoms leading up to diagnosis along with each medication tried. My hopes are for the book to help others in the situation.

  • Kristina Chew, PhD
    Jun 18, 2008 at 12:14 pm

    @Carol, really glad to hear that your son is doing all right and thank you for passing on the information about your book.

  • carol
    Jun 19, 2008 at 8:24 pm

    Just received news concerning autistic catatonia. Someone came across a note from a meeting of geneticists last year…So if you think its Downs and its not, then its 9q34.3 deletion syndrome. Basically the facial features are similar along with floppiness,sometimes heart problems etc and learning difficulties. Some of the older kids with the syndrome also have autism and catatonia,sometimes diagnosed as that, sometimes as rapid cycling bipolar disorder..or sometimes as a huge list of psychiatric illnesses. I plan o investigate this 9q34.3 deletion syndrome.

  • Carol
    Jun 29, 2008 at 8:43 pm

    My son is now 31 yrs of age and the autistic catatonia stills controls him. He does not have the severe episodes as before. During the 8 months of severe neuroleptic malignant syndrome, ECT was the last resort to save him. I did not agree with this and continued to experiement with the different medications available. A combination was found and over the past 15yrs it has been adjusted several times. The physical result of catatonia is his twisted fingers. He holds an object to prevent further damage. Without his object, his fingers intertwine. His patterns stay apparent though…walking, repetiveness, zoning out and mutism are managable. Elis catatonic specialist has co-authored with several others specialist to produce the book covering every new aspect on catatonia/autism. Titled, From Psychopathology to Neurobiology.

  • What’s Going to Happen After I’m Gone?
    Jul 19, 2008 at 12:55 pm

    […] episode in her family’s life, when her son (at 17) was misdiagnosed as psychotic and had autistic catatonia. She’s also written about the struggle to find and help him keep a job, and how, too often, […]

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