Theme
8:33pm August 3, 2015

Experiences at the Judge Rotenberg Center - Telling People’s Stories

andreashettle:

I would like to interview people who have been residents of JRC and people who have worked there.  It is incomprehensible to me that JRC still operates and my sense is that putting an end to the cruelty may hinge on people in positions of power hearing from people who have experienced life there. Until the Andre McCollins video became public, people were able to buy JRC’s story that the shock from the GED was like a pinch or a bee sting. Being able to witness the inhumanity of the shock has changed people’s understanding in important ways.

Offering people a way to tell their story in a safe way may make a difference. I am proposing an oral history/story project in which I help people tell their stories of life at JRC by interviewing people, writing their stories and giving people the opportunity to review/revise their story. It would then be up to each person to decide what he/she wants to do with the story. Some people may just want it as a personal record of their time there; others may want to share it more broadly. This could be done anonymously at the person’s discretion.  Each person will own and control his/her story.

Some people know all about JRC but when they hear about it in a person’s own words it can make it so much more real and only then does the horror of the situation hit them. One person’s story can make a difference.

If you are interested in sharing your story, knowing you will have complete control of it and if and how it is eventually shared, please email me at nancy-weiss@comcast.net.  If you know people who have been at JRC either as residents or staff, please forward this email to them. The best way for me to reach people will be people sending this request to others who may be interested.

Thanks for your help and interest,

Nancy Weiss

Signal boosting, because I would love to see this initiative succeed in gathering stories and maybe getting the Judge Rotenberg Center closed down. Nancy Weiss has been fighting against the atrocities at the Judge Rotenberg Center for MANY years, she’s awesome. 

Signal boost.

8:34am June 2, 2015

The Day I Spoke Up

jrcabuse:

     One of the last houses I lived in before I finally got out of that place was one I hated the most. The supervisor of that house had a really bad mean streak. I did my best to stay on her good side because if she didn’t like you she made sure your life was hell. Mostly I got along with her and bit my tongue when she tested me. But I was always stressed at that house, especially when she was in charge. I remember one day one of the other girls commented that we were being tortured. She got angry and said that we didn’t know what torture was, referring to her home country. But she was wrong, We knew torture very well. She had no empathy towards what we went through every day mentally and physically. She had the nerve to try and make us feel guilty for commenting on our own abuse. 

     It was a Saturday or Sunday. We were all sitting in the living room having some free time. One of the other residences called saying that a certain girl in our was on the list to go on a field trip with them. So the staff had to get her ready to go. She needed help dressing and stuff and she didn’t have any socks on. Staff didn’t feel like going upstairs to get the girls own clothes so they dug through the laundry that was downstairs with us. When they were giving her the socks I noticed they had another girls name on them. She was kind of my friend, and not even thinking I said, “hey —- aren’t those yours?” She said “yes”. Now I just want to say I didn’t do anything wrong. It was against the rules for staff to give our clothes or property to other students, although they did it all the time. And it was free time so I didn’t need permission to speak to my friend. But the supervisor got really mad that I said that. Her face turned nasty and my stomach dropped. She told me “No talking out!” I tried to hold it in, but the oppression, the fucking oppression, the power tripping staff who saw us as less-than. The policies and the “program” that stripped us of our basic rights to freedom of speech and freedom from cruel and unusual punishment. The program that denied my intelligence and personhood. I couldn’t take it another day. I came right back at her, saying “I was just helping my friend”. She says “no arguing with staff”, and it went back and forth from there. I knew I was going to lose all my privaleges by this point so I just kept talking. There was nothing I was doing on my program that she could shock me for. But she searched and searched my sheet. Finally she stopped and called the monitor from next door over. They had to call the monitor over to shock us ever since the prank phone call fiasco, so I knew what was coming. And I knew it was for a lie she made up. She lied and told the monitor I was tensing up, and they shocked me.

     I was so incredibly frustrated. I was at my breaking point. Staff did whatever they wanted and got away with it. And we weren’t even allowed to defend ourselves or speak up. At JRC, even if a staff is pinpointing you wrong, you are expected to accept it and the punishment, and then later write a “business letter” to your case manager telling them what happened. They teach us that we are punching bags and must accept all the shit done to us with out so much as a peep. That is teaching us to be victims that don’t matter.  I was sick to my stomach. I had to get away. I requested to call my legal guardian but was denied. I felt so unsafe there, with her. I knew she could make up any lie she wanted to hurt and shock me. 

     I gathered the strength, and ran up the steps and out the front door. As soon as I hit the cold winter air, my lungs tightened up from my asthma and I barley could make it across the icy front yard. I just crossed the street and I got grabbed from behind. It was the supervisor, and I felt like I was in a fight for my life. I couldn’t let her take me back inside, because now that we were outside, she could say I did anything and there was no camera to prove I didn’t. I knew she would. She tackled me into a snowbank and was sitting on me. I was trying so hard to get up. Cars were going by, and one finally stopped. A man got out, and told her to get off of me. I was yelling “help help”. She told him she had a right to do what was because I was in a “group home” and she was in charge. I kept asking him for help, and he got between us and made her get off of me. I remember I hugged that man, and I felt safer with that stranger then these staff I had been stuck with for years. He had called the police and when they came she kept arguing that she had a right to take me back to the house. But thankfully they wouldn’t let her. The police called an ambulance which took me to a nearby hospital. I felt so relieved to be away from her, like the world off of my shoulders, I had been so scared. They put me in an empty room at the hospital, and soon after, the supervisor arrived. She tried to come in the room with me and I freaked out. the security guard told the doctors that I was calm until she came near me, and they made her get out. After a while the weekend administrator came. She told me because of what I did I had to move to another residence with more staff. I actually felt relieved. I would be away from her. 

     I am so thankful to that stranger who stopped to help me. If he hadn’t pulled her off of me and called the police, she would have gotten me back in that house and shocked the hell out of me. It is amazing to me how all those strangers had more common sense and compassion then the staff and JRC program. It shows that what society considers wrong, is excused at JRC. Strangers saw me as more human the staff did. I was lucky that day, but there were many other days when I wasn’t.

Okay the following is not meant to take away from the impact of the story above at all, it’s just a reminder because of the symbolic super-importance the JRC has taken on in the minds of many people who have never been there or never been anywhere like it.  This should not detract at all from the horribleness of the JRC or the experiences of the people who have lived there or have been at risk of living there.  (I’m glad I didn’t have different parents, I would’ve easily been a candidate as a teen and young adult.)

So this is for everyone who wasn’t at the JRC:

Just a reminder that no matter where you are, these things are happening in  your backyard, right now.  You probably don’t even know how to recognize half the institutions in your area (many of them look almost like ordinary houses, these days), and your eyes may even glide over some of the more obvious ones as background scenery.  And things just as bad or worse are happening there, too.  The JRC sucks but there’s very little unique about it.  Focus on its uniqueness only contributes to the torture of others at other places.  Closing it may not even help some of its inmates:  Many will be sent to other institutions, and those institutions may do more damage than the JRC did for all anyone knows (and that can happen whether or not the person is consciously aware that the place is worse: it’s very common to be in a Stockholm Syndrome situation or one where you think a place is better because it lacks one specific thing that happened to you at another place, meanwhile it’s actually worse than the other place and you only realize it ten or twenty years after the fact when you look at the impact both actually had on your life – the worst place I was at had no locks on the doors, no bars on the windows, the windows were regular glass, no restraints, but it was utterly diabolical in ways that are far worse than things that other people would think are “objectively” worse… similarly many people I know who’ve been in both private and state institutions would take the state institutions any day, which causes surprise and disbelief among people who’ve only been to one or the other or neither – there’s no measuring stick you can easily use to say “this one is the worst” and I worry when JRC is singled out as the worst place anyone could possibly be… it’s an utterly horrible place, but unfortunately for disabled people everywhere, it’s one among many thousands, probably (I am not good at numbers but I think thousands at least)… so if you care about shutting down the JRC, please care about shutting down all the other places too, including the ones that are deceptively beautiful-looking but sometimes the most awful of all).

10:31pm June 1, 2015

ABA therapy is not like typical parenting

realsocialskills:

Content note: This post is about the difference between intense behavior therapy and more typical forms of rewards and punishments used with typically developing children. It contains graphic examples of behavior programs, and is highly likely to be triggering to ABA survivors.

Anonymous said to realsocialskills:

I just read your thing about people with disabilities and their interests. Don’t people do the same thing to typical children? Restrict access to things enjoyed until act ABC is completed? For example, growing up, I was only allowed to watch tv for 1 hour a day IF I finished all of my homework and schoolwork related things first.

realsocialskills said:

It’s not the same (although it has similar elements and I’m not a huge fan of the extent to which behavior modification techniques are used with typically developing children either.)

Here’s the difference: Most children actually should do their homework, and most children have interests other than television. Typically developing children are allowed to be interested in things, and supported in pursuing interests without them becoming behavior modification tools.

(Another difference: intense behavior modification is used on adults with developmental disabilities in a way that would be considered a human rights violation if done to typically developing adults.)

Using behavior modification tools for one or two things in a child’s life isn’t the same as doing it with everything in someone’s life. Intense behavior therapy is a violation on a level that it’s hard to describe.

Intense behavior therapy of the type I’m talking about typically involves:

  • Being surrounded by people who think that you’re broken, that all of your natural behavior is unacceptable, and that you need to be made to look normal in order to have any hope of a decent future
  • Having completely harmless things you do pathologized and modified (eg: having hand flapping or discussing your interests described as “a barrier to inclusion”)
  • Having those things conflated with things you do that actually *are* a problem. (eg: calling both head banging and hand flapping “sensory seeking behavior” and using the same reinforcers to eliminate both)
  • Being forced to stop doing things that are very important to you, by people who think that they are pointless and disgusting or “nonfunctional” (eg: using quotes from TV shows to communicate)
  • Being forced to do things that are completely arbitrary, over and over (eg: touching your nose or putting a blue ball in a red box)
  • Being forced to do things that are harmful to you, over and over (eg: maintaining eye contact even though it hurts and interferes with your ability to process information)
  • Having everything you care about being taken away and used to get compliance with your behavior program (eg: not being permitted to keep any of your toys in your room)

(Behavior therapy often also involves legitimate goals. That doesn’t make the methods acceptable, nor does it make the routine inclusion of illegitimate goals irrelevant.)

Here’s an explicit instruction from a behavior expert on how to figure out which reinforcers to use for autistic children:

Don’t assume that you know what a child with ASD likes. It is important to ask a child, observe a child or perform a preference assessment. When asking a child about reinforcers, remember that multiple reinforcement inventories can be found on the Internet.

You can also simply sit down with a child and ask them questions like “What do you like to do after school?” or “What’s your favorite food?“or “What toys do you like to play with?”

When observing a child, set up a controlled environment to include three distinct areas: food, toys, and sensory. Then allow the child somewhat free access to this environment.

Watch and record the area that the child goes to first. Record the specific items from this area that the child chooses. This item should be considered highly reinforcing to the child.

Continue this process until you have identified three to five items. Remember that simply looking at an item does not make it reinforcing, but actually playing with it or eating it would.

Notice how it doesn’t say anything about ethics, or about what it is and isn’t ok to restrict access to. This is about identifying what a child likes most, so that it can be taken away and used to get them to comply with a therapy program. (Here’s an example of a reinforcement inventory. Notice that some examples of possible reinforcers are: numbers, letters, and being read to).

People who are subjected to this kind of thing learn that it’s not safe to share interests, because they will be used against them. That’s why, if someone has a developmental disability, asking about interests is often an intimate personal question.

This isn’t like being required to do your homework before you’re allowed to watch TV.

It’s more like:

  • Not being allowed to go to the weekly meeting of the science club unless you’ve refrained from complaining about the difficulty of your English homework for the past week

Or, even further:

  • Not being allowed to join after school clubs because you’re required to have daily after school sessions of behavior therapy during that time
  • In those sessions, you’re required to practice making eye contact
  • And also required to practice talking about socially expected topics of conversation for people of your age and gender, so that you will fit in and make friends
  • You’re not allowed to talk about science or anything else you’re actually interested in
  • You earn tokens for complying with the therapy
  • If you earn enough tokens, you can occasionally cash them in for a science book
  • That’s the only way you ever get access to science books

Or even further:

Being a 15 year old interested in writing and:

  • Being in self-contained special ed on the grounds that you’re autistic, your speech is atypical, and you were physically aggressive when you were eleven
  • Having “readiness for inclusion” as a justification for your behavior plan
  • Having general education English class being used as a reinforcer for your behavior plan
  • Not being allowed to go to English class in the afternoon unless you’ve ~met your behavior targets~ in the morning
  • Not being allowed to write in the afternoon if you haven’t “earned” the “privilege” of going to class
  • eg: if you ask questions too often in the morning, you’re “talking out of turn” and not allowed to go to class or write in the afternoon
  • or if you move too much, you’re “having behaviors that interfere with inclusion”, and not allowed to go to class or write
  • or if you mention writing during your social skills lesson, you’re “perseverating” and not allowed to go to class or write

Or like: being four years old and not being allowed to have your teddy bear at bedtime unless you’ve earned 50 tokens and not lost them, and:

  • The only way to earn tokens is by playing in socially expected ways that are extremely dull to you, like:
  • Making pretend food in the play kitchen and offering it to adults with a smile, even though you have zero interest in doing so
  • You gain tokens for complying with adult instructions to hug them, touch your nose, or say arbitrary words within three seconds; you lose two for refusing or not doing so fast enough
  • You lose tokens for flapping your hands or lining up toys
  • You lose tokens for talking about your teddy bear or asking for it when you haven’t “earned” it
  • You lose tokens for looking upset or bored

Or, things like being two, and loving books, and:

  • Only having access to books during therapy sessions; never being allowed unscripted access to books
  • Adults read to you only when you’re complying with therapy instructions
  • They only read when you’ve pointed to a picture of a book to request it
  • You’re required to sit in a specific position during reading sessions. If you move out of it; the adult stops reading
  • If you rock back and forth; they stop reading
  • If you stop looking at the page; they stop reading
  • If you look at your hand; they stop reading
  • Adults interrupt the story to tell you to do arbitrary things like touch a picture or repeat a particular word. If you don’t; they close the book and stop reading.

Here are a few posts that show examples of the kind of thing I’m talking about:

tl;dr Intense behavior therapy has some things in common with methods that are used with typically developing kids, but it’s not actually the same. Intense behavior therapy involves violation and a degree of control that is not considered legitimate with typically developing children.

I was part of a behavior program where I was locked, with only one other child (we were banished from the adolescent unit for being too socially immature or some crap like that, I think the real reason was we’d banded together to take a stand against abuse that was happening in the institution on a daily basis), on the children’s ward of a mental institution,, and not allowed to go outside or walk to the cafeteria or do damn near anything normal unless I earned enough poker chips.  I also had a therapist who systematically struck me harder and harder in the leg until I made eye contact for a certain period of time.  These things are real and they are not like having to do your homework before you can watch TV.  At all.  Even slightly.  

3:22am May 13, 2015

Rilla of Ingleside (mild spoilers, this is your only warning, also cw for stalking and institutions and war)

It’s actually my favorite book in the entire Anne of Green Gables series.  I read the whole series once while recuperating from an illness:  I tend to read “easy” stuff at times like that, because my brain won’t handle anything better.

Anyway, this was a very surprising book to me.  It’s different from any other book in the entire series.  It sucked me straight into what World War I was like for at least some of the Canadian women left behind.  And it remains the only book written by a Canadian woman who lived through World War I, about the experiences of Canadian women during World War I.

To give you a glimpse of the changed tone – you know that famous imagination of Anne’s?  She says that these days the only use it is, is to give her vivid images of all the different ways her sons could die in combat.  They talk about body lice (!).  And Rilla grows from an irresponsible and frivolous teen to a responsible adult within the course of the book.

But the reason I was thinking of it today, is because there was an interaction between characters that reminds me of interactions I’ve had with my (primary) stalker.

There’s another girl Rilla’s age (they’re in their mid to late teens) who is quite a bit of an asshole.  Rilla, like all of her family, has taken the idea very seriously that as women it’s part of their job to be strong, so that their family, friends, and significant others who are off fighting the war don’t have to take care of their feelings in addition to the horrors they’re living with.  So they have very intense feelings about the whole matter, but they aren’t about to show them in public.  You can debate whether this is a good idea or not, but I could see the logic behind it in a way I never had before.

(I have a lot of relatives who are veterans, but I’ve never had anyone close to me go off to war while I was alive. This book gave me a window into what that can be like, and what it was like in a war that was unlike one anyone had ever seen.  The book also showed me how important World War I was to 20th century history and beyond.  It changed everything.)

Anyway, so the girl who was being an asshole, was not only not hiding her feelings (which would’ve been okay, in and of itself, it seems to me that’s a personal choice that can go either way for any number of reasons) but was exaggerating her feelings to get sympathy from others, and then pointing at Rilla and saying “See, she has no feelings even though her boyfriend and brothers are all off fighting.  She’s a heartless, soulless monster.”

And that made me feel really vindicated at the time.

Because my stalker was saying similar things about me.  She was posting all over the web about how distraught I made her, how I was ruining her life, making her lose weight from sheer terror (because I was “stealing her life story” and therefore must have been stalking her since I was an age too young to understand what stalking was… all of this being purely made up on her part to make me look really bad), and on and on and on.  And how since I was still fat (although I did go through a period where I was too scared of her to eat, I hold onto calories better than her for reasons both hereditary and related to prior starvation), and since I wasn’t writing about her, and since I wasn’t writing about how upset I was, and etc., then I must just be a heartless soulless monstrous sociopath who has no regard for the feelings of others and no feelings of my own.

The truth was I wasn’t putting my feelings out there because I felt that would make me more vulnerable, which is the truth.  Any time I showed her what really hurt me, she’d do whatever it took to hurt me in that way, and she’d gleefully announce what she was doing, but in a way where nobody else could understand she was threatening me. 

Case in point:  I once confided in her that a reason I didn’t like being accused of “copying people” (something she accused me of constantly) was that when I was in mental institutions, special ed, and day programs, there was this sequence of events that always happened:  One person would get upset, and get taken into the seclusion room or whatever passed for one in the place we were at.  They would get treated badly, of course, but not as badly as… the next person to get upset.  The next person to get upset would get accused of “feeding off of” or “copying” the first person.  And they would also get punished by seclusion room, only their punishment was worse and longer for being second.  And if a third person got upset, given that there were only two seclusion rooms per ward (plus sometimes wards shared seclusion rooms with other wards, and sometimes there was a bedroom with a restraint bed they could use as a seclusion room in a pinch)… at any rate, if the seclusion rooms on a ward were full, and you did something that resulted in them putting you in seclusion, they had to carry you to one of the adult wards, and they would treat you even worse.  Again, for “feeding off of,” “copying”, etc.

So when my stalker wanted to threaten me with something, she said “I will make sure that you are always second.”  A statement that sounds innocuous, but actually means “I am going to trigger the fuck out of you on purpose, and yet claim to be the one who’s really triggered and that you’re just feeding off of/copying me.”  That kind of thing.

Anyway, the asshole girl in Rilla of Ingleside reminded me of my stalker in that one way.  She didn’t issue death threats the way my stalker did, but she did run around claiming emotions well beyond the ones she actually had (which my stalker definitely did, don’t ask how I know, it’s too long a story, but I can say that many of the things she did to make it seem like I was hurting her emotionally, were purely setups on her part, not actually spontaneous displays of emotion in response to something I’d really done), and she did run around claiming that Rilla’s attempts to keep her own emotions in check so that she could function and so that her boyfriend and brothers wouldn’t have her to worry about while they were off fighting… that this meant Rilla was inhuman basically.  And that’s all very vindicating to read when you’ve been subject to that kind of treatment.

And yes, that’s one of many reasons that I don’t engage directly with my stalker or show most of my emotions on the matter in public:  Because I know it will just end up hurting me or people I care about.  It’s not fair that life is like this, but life isn’t fair.  And I was surprised at the level of depth in this book compared to the others in the series.  Not that I didn’t like some of the others, but this one has got to be my favorite.

(If you read it, get the version that wasn’t Bowdlerized to remove anti-Germaan sentiment and things like that.  Yes, there are some offensive things said in the book.  But i think they were reflecting what the author had actually seen and heard people saying at the time, and while she could’ve handled it differently I’m sure, she didn’t.  And I’d far rather read the version she actually wrote, rather than the version that was rewriten for her to take out the parts that later generations found unpalatable.)

I’m not sure whether it’s one of the books that is free, or whether you have to pay some kind of small fee tto read it – it all depends on the copyright date, and I remember the series straddling the date when copyright becomes an issue in obtaining the books.  I downloaded it online and put it on my Kindle, along with the rest, and had an Anne of Green Gables marathon while I was recuperating from some illness or another (I still don’t remember which – given the timing, I’m wondering if it was the onset of my 2008 health crisis, when the myasthenia and the adrenal insufficiency both kicked in with a vengeance – a time when I was also hiding that fact from the online world, for fear of showing a vulnerability my stalkers could exploit… and they would have, had they known how sick I was).  And it’s still probably my favorite Anne book even though it’s really more a Rilla book (Anne is her mother).

1:24am January 27, 2015

Still mad about great-uncle Lindy

He spent decades taking care of his mom, IIRC.  Not that this should be why he deserves to not live in a nursing home.  But he worked really hard to uphold the values in our family that say we take care of each other, we don’t throw each other away.  Meanwhile the rat bastard branch of the family have found a way to put him away.  And those of us who care don’t have the means to keep him out.  Those who have the means to keep him out don’t care. GRRRRR.

11:15pm January 25, 2015

My Great-Uncle Lindy :-(

Yesterday, I wrote a poem:
It talked about how my great=uncle Lindy was one of the people who taught me the traditional family value that when at all possible, family does not allow family to end up in nursing homes.  Even if that means, as Lindy did, moving in with your mother and caring for her for decades.
Yesterday, unbeknownst to me, my aunt and uncle put Lindy in a home.  He had gone for a walk at night without his dog and gotten completely disoriented, and he’s now living in a facility for people with memory issues.
It looks to me like a situation I have often feared happening in my family, including happening to me (which is why I have done a lot to set up care for myself that doesn’t involve either family or institutions).
That situation is:
  • Those who retain these values don’t have the physical or financial ability to put them into practice.
  • Those who have the physical or financial ability to put them into practice don’t retain these values strongly enough to actually do so, if they retain those values at all.
Which means the aging, disabled family member ends up living in a home.  It makes me want to cry.  Lindy is a great man, he loves animals, he always took in stray cats and dogs and got them food and medical care. 
I wish I still had an electronic copy (or any copy, really) of a photo of me with him taken by my mom in my early twenties, where we had the same crewcut, and nearly the same outfit (shirt, suspenders, pants), and the family resemblance made it all look uncanny.  There was a cat on my lap wearing a cone because of her recent eye surgery.
I never talked much to him, but I never felt I needed to.  Just being around each other was enough for both of us.  I felt like Mary Margaret Britton Yearwood’s poem about wild kittens:  

I see big cats race across the yard as my grandma talks in cat talk.

Cat talk sounds like this: Here kitty, kitty.

In cat talk, here kitty kitty means I love you.

I don’t see any wild kittens but I know they are there.

My boy told me so and my boy doesn’t lie about important things like kittens.

I am tired of sitting on the steps, so I hide under the house and sit in the cool black dirt.

I am a wild kitten.

My grandma can’t see me, but she knows that I am here.

That’s how I felt visiting Great-Grandma and Great-Uncle Lindy. I’d run around the backyard interacting with their cats (many feral or semi-feral), but they knew I was there and their love was enough.
I wish even more that someone could move into his house and take care of him the way he took care of his mom.  But he has no children, and all the people inclined to do this have no ability to do it, and all the people with the ability lack the inclination and the values.
Arrrgh.
8:47pm January 18, 2015

“We only took her home from the institution once. When it was time to take her back, she sat down, refused to get in the car, screamed, and cried her eyes out. It was so hard for us to forc her to go back that we never took her home again.”

— waaaaaaay too many parents of institutionalized developmentally disabled people… I hate hearing this story, from so many people, I hate it every time I hear it, because as usual, I don’t identify with the parents, I identify with the DD person.
2:02am January 8, 2015

I don’t remember when “What do you want to be when you grow up?” turned from a promise to a threat.

But I do remember being a young teenager and constantly scouting out places I could live as a hermit, trying to brush up on outdoor survival skills, being sure I would need them at some point.  Because I was going to be a hermit when I grew up.  There was no question.  Otherwise I’d be institutionalized or shunned by society or something worse than both of those put together.

3:10am December 31, 2014

“Decrease, that’s Dr. R. alright…”

— 

-a nurse at a mental institution I was in

Dr. R. knew what it was like to have to live most of your life on medication.  He didn’t feel quite like himself on his ADD meds. And he badly needed them in order to work at his job. Even with the meds his secretary had to work harder than most secretaries to accommodate him. Off his meds he literally could not complete a full sentence because his mind and interest raced from one topic to another so fast his mouth couldn’t keep up.  So he took “medication holidays” most weekend where he wouldn’t have to have many responsibilities that required concentration.  And his ADD was more severe than that of most people I met, so it wasn’t just a case of “I could function without my Ritalin, I just choose to take it or not on a whim.”  He could not function without it, he needed constant assistance from others without it.  And yet he still chose not to take it some days, because he found that he felt like too much of a different person on the meds, a person he couldn’t fully recognize or identify with.

As a result, he preferred to give his patients as little medication as he could get away with.  As in, the bare minimum to help the person function, and if it was not helping the function and he knew it, he would taper them off it altogether.

The nurses and psychiatric technicians who hung out behind the nurses station and gossiped constantly (but who suddenly were “busy charting” if a patient needed help)… I spent a lot of time in isolation rooms that had a door opening into the nurse’s stations.  And the nurses and psych techs loved to use neuroleptics (a.k.a. antipsychotics, major tranquilizers) and minor tranquilizers (a.k.a. sedatives, hypnotics, etc. stuff like Ativan/lorazepam) in order to incapacitate patients and make us easier to manage.  So one day, when I was tied down an isolation room just behind the nurse’s station, I heard them talking about Dr. R.’s decision to decrease one of my medications.  

Dr. R. had noticed, and written in his admission and discharge summaries, it went something like… “We’ve found that the amount of  medication required to control Amanda’s destructive behavior is uncomfortably close to, and sometimes exceeds, the amount of medication that renders her completely incapacitated.”  Well, yeah.  Neuroleptics work to control behavior.  And they are now and have been for at least ten years, been recommended for autistic people’s aggressive behavior towards ourselves or other people.  Eventually getting to the point where some doctors only know they’re prescribed “for autism” and prescribe them to all their autistic patients, which is horribly irresponsible.  Anyway, neuroleptics work to control autistic people’s behavior – and other people’s behavior.  They’re rampant in the developmental disability world for auties, people with intellectual disabilities, people with cerebral palsy, people with severe multiple handicaps, etc.  

And they work to control our behavior by disrupting the links between thinking and acting.  A person on neuroleptics may look tranquil, hence the word ‘tranquilizer’.  But on the inside, we may feel lost, confused, as if our mind has been scattered to the winds and we can’t find all the pieces and put them back together again, agitated, restless, furious, terrified, all these things at once.  But it won’t show on our face or body unless we get the side-effect of akathisia.  But so few people know about akathisia (severe restlessness that can escalate to violence) that they’ll take the akathisia as a reason to give more of the drugs that are causing it in the first place.  

Akathisia can become permanent, too – it’s a myth that tardive dyskinesia is the only permanent side-effect of neuroleptics.  (“Tardive” basically means symptoms that appear slowly rather than all at once.  The tardive movement and cognitive syndromes that can occur in neuroleptics are often permanent, even if you remove the drug.  There’s also acute versions of the same conditions, that do go away when you remove the drug.  Acute akathisia vs. tardive akathisia, for instance.)  The tardive syndromes I’m most aware of include:

  • Tardive dyskinesia, which can range from a slight involuntary movement at the edges of the tongue, to full-body contortions that are so severe they can inhibit breathing and kill people.
  • Tardive akathisia. That same psychological and motor restlessness, only it doesn’t go away once you stop the drug.
  • Tardive dystonia.  Any form of dystonia (a movement disorder, I’m too tired to Google it and give you information) that remains permanently after the drug has been discontinued.
  • Tardrive dementia.  Cognitive impairment that does not go away after the drug has been discontinued.

When I say “does not go away”, I don’t just mean the first year of being off of these drugs.  I mean that it doesn’t go away pretty much ever.  It may improve to an extent going off the drugs, but then plateau and stay at the same level.  It may actually get worse going off the drugs, because some of the drugs have effects that mask the full extent of the tardive dyskinesia or other tardive syndrome.

And did I mention that neuroleptics are generally a bad idea for autistic people with catatonia?  Yeah.  Not that they knew that when they were busy loading me full of thee drugs.  Because there were only two papers out on autistic catatonia at the time, and it didn’t even have the name autistic catatonia yet.  The first article that wasn’t a case study, came out about a year after I stopped neuroleptics.  But it explained why (I didn’t notice this, but my whole family did, so it must be real) the moment I went on neuroleptics – not even long-term, just my first dose of Thorazine  and Haldol for behavior control in a (different from the above) mental institution.  The moment I took them apparently my motor skills took a nosedive they’ve never recovered from.  It was like they accelerated the progression of the autistic catatonia.

I know someone else with autistic catatonia.  They were on Mellaril throughout a lot of their childhood.  It was only after someone decided to take them off of it, that they learned to use speech for communication.  They were twelve years old at the time.  In my case, I began showing obvious symptoms of autistic catatonia (not “catatonic traits that exist in all autistic people”, but actual deterioration of my motor and speech abilities) at the age of 11 or 12.  I was first given neuroleptics at the age of fourteen.  Which made me lose skills much faster.  When I went off of them at age nineteen, I had a period where everything got much, much worse, and then a gradual period of things getting better, and then I went back to my previous pattern of one step forward and three steps back, when it came to losing motor planning skills.

Anyway, I just remembered the scorn heaped on Dr. R. by the nurses, because he made it very difficult for them to use chemical restraints for their own convenience.  Shortly after this happened, they resorted to deliberately escalating situations – such as grabbing me and hauling me to the isolation room for no reason at all, with no warning at all – and if I struggled, at all, then I was a danger to others and it was okay for them to tie me down and drug me.  Dr. R. was not happy about this, so he assigned me and another patient who was getting treated similarly, a one-to-one aide from Visiting Nurses, who could take notice of anything the institution staff were doing to control me.  One day one of those aides saved my life, but that’s a long and traumatic story I have no interest in rehashing at the moment.

Suffice to say, for Dr. R.'s patients, “Decrease , that’s Dr. R…” was a good thing.  He didn’t always succeed, and he had all the dangerous biases that decades working as a psychiatrist would give a person.  But he tried.  He tried to give the smallest amount of a medication he could, that would still work, and he’d work with you on “drug holidays” if that’s what you and he felt you needed.  So despite his shortcomings – ones he shared with most in his profession, unfortunately – he was still the best psychiatrist I ever ran into.  It wasn’t just the ADD either – he grew up with a speech impediment and social problems, and he had attempted suicide at least once as a teen.  When he heard about the autistic community’s use of the word “cousins” (people who are not autistic but share many autistic traits, especially perceptual or social traits), he said he was a cousin.

And he’s the one who helped me get off my psych drugs in the end – all of them.  It was harrowing, even tapering slowly.  But we both acknowledged it had become a “the old lady who swallowed the fly” situation – most of the drugs were to treat side-effects of other drugs.  In psychiatry there’s an unfortunate tendency to look at side-effects as “this always existed and the drug just unmasked it”.  Like… my neurologist gave me a migraine drug once, Topamax, that changed my personality in a very severe way.  And when my friends told him what was going on, he just said “Discontinue it, immediately.”  Within psychiatry, those personality changes would’ve been said to be an underlying psychiatric condition that the Topamax unmasked, and I’d be given drugs to “treat” that condition, which would then “unmask” more conditions I didn’t really have, and so on.  So he helped me get off of everything.  He believed in me even when people were saying the withdrawal symptoms were proof I belonged on the drugs after all.  He stuck with me the entire year it took for me to get back to what was now normal to me.  He continued to make some major mistakes, but now that I was a legal adult and off of my meds enough to think clearly, I was able to get away from those mistakes in a way I hadn’t been able to as a child.

I never became the next Temple Grandin, which is what he wanted me to be.  But I think if he’s still around (he was old and had a heart condition, so he may well be dead), he’d be proud of what I’ve accomplished in self-advocacy and research alike.  And he’d be glad that my physical problems were finally being diagnosed for what they were – he’d early on had to help me fend off doctors who believed my physical problems were psychiatric in nature just because I had a developmental disability and a long psych history filled with diagnoses and misdiagnoses.  I hope he got a chance to watch at least some of that unfold.  I lost touch with him after he retired.

Anyway… I’m still proud of him for decreasing my meds and helping me get off of them, and believing in my ability to get off of them, even in the face of overwhelming pressure to do the opposite and have me so sedated (actually, at that point, twice the toxic dose of a neuroleptic, plus another neuroleptic on top of it) that I was falling asleep everywhere and having atonic or myoclonic seizures every few minutes when I was awake.

I’ve always been ambivalent about him – he seemed like a character in a book who is good but has a tragic flaw – but in this area, I am absolutely happy with the majority of decisions he made.  The majority, mind you.  But that’s more than I can say for any other psychiatrist I’ve ever had.  I really lucked out, because he was rarely on duty, and the night I came in I was assigned to him because he was on duty that night.  He instantly figured out that I was autistic (even though I was there for suicidal behavior), he saw me as something akin to an “idiot savant” (his words, not mine), and he developed a strong bond with both me and my family that carried us through some of the worst bullshit we encountered in the system.  Which was good because, as my mother pointed out, my parents were never educated in how to deal with an autistic teen with a seemingly sudden explosion  of neurologic and psychiatric problems.  And he decreased my meds when possible.

9:04pm December 1, 2014

The White Institution (written ~2002, events 1999)

I walked down the street
With my eyes on the building of white
I knew they were like me
Autistic and trained not to fight 

They rocked behind bars and
I knew I belonged there not here
Not out on the streets
With the ones who had never known fear

My body moved forward 
To ocean with sand and with stars
But my thoughts, they went back
To the white institution with bars 

As slugs we might be
But the world it had fashioned a shell
Not home anymore
Not here, not on earth, but in hell

madeofpatterns this is my best attempt to recreate from memory the poem I wrote about that white institution with the tiny yards full of wrought-iron bars, and the beautiful gardens that nobody ever actually walked in, that I saw anyway. I can’t find my last post referencing this place or I’d link it. If I ever find the original version (probably in my computer that’s in the shop) I’ll post it if it differs significantly from this version.

4:16am October 25, 2014

Memory from sixth grade

On the first day of sixth grade, we were all brought into a room by… I forget the guy’s title.  Our little private school was always trying to emulate far fancier private schools, the ones on the East Coast, and had aspirations of becoming a prep school.  (They did, eventually, add on a high school that was a prep school, but that was long after I left.  When I went there it was preschool through eighth grade and decidedly not a prep school.  I was one of a few middle or working class people who actually went there. Most people were upper middle class or rich (and honestly the two were so far above me I drew no distinctions.  My parents put themselves into debt sending me there.)  


So there were titles like Dean, Principal, Headmaster, Associate Head, and so forth, and I never could keep straight who they were or what their jobs were suposed to be.  Aside from showing off their expensive ‘environmentally friendly’ technology at every turn and encouraging people to see them as amazing eco-responsible people just because they could afford an electric car, for instance, back when nobody could.  So I know whic guy took us into the assembly and gave the spech, but I don’t know his name, his face, or his job description.

The very first thing he said is “It’s very important to remember you are not junior high students yet.”  I guess he thought we needed reminding because we’d gotten the nifty new uniforms that the sixth grade shared with the junior high.  No more ugly plaid jumpers, just dark blue skirts, polo shirts, and dark blue sweaters.  I really liked the new uniforms, as uniforms go, and was rather excited about the change.  In the same way that you get excited in an institution about gaining a level and getting more “privileges”.  Each year at this school, you would get new privileges, like the ability to eat lunch in certain areas, etc. And I was especially prone to getting excited about these things. 

One of the saddest things I ever read was by an autistic woman in a nursing home who had written to the MAAP newsletter.  (More Advanced Autistic People – it was written back when being thought high functioning was considered a rarity.  The autistic self-advocacy movement in the form of ANI has had very rocky relations with MAAP over MAAP’s insistence that ANI not bring any nonverbal “LFA” people to their conference.  ANI of course did not comply with this demand.)  Anyway, the woman was living in a nursing home that also took people with psychiatric or developmental problems. And she was thinking of leaving.  But then she said “But I’m not sure I should leave, because there’s some realy exciting stuff coming up on my level…”

And that broke my heart.  Because if she left, she could do those exciting things witout needing to “gain a level” to do them.  But she was too trapped in the institutional mindset to see it.  I almost cried when I read it.  I hope she is out of there by now.  And by choice, not by having died or been transferred to another institution.  Because she deserved freedom (with whatever support she needed to survive).  And she deserved to never have to think of herself as part of a level system.  I was part of a level system in most institutions I was at.  Some of them I utterly refused, seeing it as the mind and behavioral control tactic it was.  Other times I went along with it because you can easily get sucked in by promises of being able to go off the locked unit for 5-minute supervised walks and stuff.  Anyway.

All of which is why I always say schools are a good training ground for institutional life, and I mean it.  People think I’m trivializing institutions when I say stuff like that.  I think they’re trivializing the damage that schools do to children.  Just because, by this generation, practically everyone in the USA has been through formal mass schooling doesn’t make it a good thing.  Just because, for some people, school is the only refuge from an abusive home environment, doesn’t make it a good thing, it means we need better refuges.  But school is basically a place where people are thrown in with kids their own age, expected to learn good social skills (as in, not bullying) from people as immature as they are, and not taught to interact with people from a variety of ages and backgrounds.  In the USA, most learning is competitive rather than cooperative.

My mother found my brother this amazing classroom that shouldn’t have been amazing, but that I wish I’d had growing up.  In this class, each child was known to have strengths and weaknesses.  Each child helped teach their strength to all the other kids.  For instance, a kid really good at the alphabet would teach other kids the alphabet, paying closer attention to people for whom learnin the alphabet is harder.  In this way, every student learned, and every student taught, and the goal was to bring every student up to speed on what the other students were doing, rather than to compete to see who could out-learn each other.  If I had to go to school, I would choose a school like that class.  

Ideally though, I’d want the entire system overhauled.  I would want places where anyone of any age could come to learn any subject from anyone willing and able to teach that subject.  Sort of a cross between a school and a library.  You could have a 90-year-old learning to read alongside a 2-year-old and a 10-year-old if that’s what they all wanted to learn.  And in addition to learning (in groups, or one on one, whichever worked best) from the teachers alone, it would be like that school my brother went to – students learning from students.  (My father also had some of that going on by default – he started school in a one-room schoolhouse.  HIs one-room schoolhouse was much better than mine, though, because mine was special ed and it sucked.  He describes experiencing culture shock when he first had to go to a regular school, where you had hall monitors (“Hall monitors!” he still says with incredulity) and couldn’t go to the bathroom without a pass, and things like that.)

Anyway, back to the lecture the guy was giving us on how to be sixth graders.  Anyway, after informing us we were not, definitely not, junior high kids yet, he got very serious and started talking about maturity.  He said something like, “You’re going to find some of you are growing up faster than others.  Some of you are going to want to still play like you did at recess in your earlier grades.  And some of you are going to want to read, or talk about serious things.”  And literally every single person seated near me, when faced with the description of the kid who wasn’t maturing fast enough, turned around their heads and openly stared at me for quite some time.  Like you could hear them all turning around in their seats to look at me.  I felt horrible.  I knew it was true, that I wasn’t catching up with anyone socially, not even after repeating a grade, but there was no need to humiliate me about it.


2:11am October 25, 2014

dendriforming:

There actually seems to be a very specific “institutions trying not to look like institutions” aesthetic style. The JRC’s “non-institutional” furnishings look eerily similar to the furnishings in the new pediatric psychiatric inpatient ward they’re bragging about here. Same with the pediatric psych ward at Johns Hopkins.

How long will it take for the combination of aggressively cheerful colors and geometrically ~innovative~ but ergonomically dubious furniture to become a known thing?

I remember writing years ago about how the moment I saw the decor in the JRC I knew it was not just a bad place but a very, very bad place. Most parents unfortunately don’t know how to spot that stuff. Institutional veterans do. There was a time when I begged to go to a state institution rather than this one place, and I ended up having to go to that place anyway because there were no beds at the state institution, but everyone thought I was just crazy for begging to go there instead. But what I saw was a place trying too hard to look good. And I was right. By the end of my 6-9 months there, my entire family used the name of the place almost like a swear word. And my mom actually, when hearing the name of the family therapist (whose job it was to tell my mom that she had caused my “infantile psychosis that led to schizophrenia in adolescence”) said “may she rot in hell”, which is extremely out of character for my mom. My family still uses that place as a benchmark of the most stress you could possibly be under. Like “it’s not just bad, it’s [name of institution] bad.” And they had beautiful grounds, beautiful everything, with a heart from hell.

4:14am September 21, 2014

fullyarticulatedgoldskeleton:

boys-and-suicide:

raksolnikov:

parenting tip: talk to your kids about mental illness. tell them they might have a hard time. tell them they can ask for therapy and medication. tell them they aren’t alone. tell them if your family has a history of mental illnesses and which ones. just fucking talk to your kids and be there for them.

This would push through so many barriers

Tell your kids about disability, too. My dad KNOWS about mental illness. He went online and “educated” himself with shit from like Nami.org, before I was officially diagnosed. He has not ever accepted that I’m disabled and his denial has endangered my life.

Also teach your kids about choice.

Teach your kids that the psychiatric system and programs coming from it can be dangerous, especially if you’re severely mentally ill and not getting better from the treatments.

(i.e. you’re not what I used to call the “three-day depressives”, who never saw how bad the institution was because they’d come in for three days, get put on medication, feel fine, leave, and never come back, and would talk about how wonderful the place was while I was tied down in the next room being tortured for staff amusement)

I was severely psychiatrically disabled (although I still maintain there was no diagnosis that fit what was going on, so I just got a lot of random diagnoses ranging from psychosis to adjustment disorder… but I was definitely not one of the more valued types of mentally ill people) and I got treated like crap by a system that couldn’t fix me.  They blamed me.  It was awful.

And they need to know that the system is not their last hope.

I know someone who almost decided to do a school shooting, in the seventies.  Why?  She’d been horribly depressed, suicidal even.  They put her in a psych ward where she was tortured to the point she still has the physical scars on her body.  (Which is not about bad apples, it’s about an environment that creates abusive people even if they weren’t to begin with.)  And to her, the psych ward had been presented as her last resort, the last hope that she had of leading a happier life.  When that didn’t work, she was willing to commit suicide and take out as many people that she blamed for her problems (bullies, teachers, etc.) as she could.  Luckily she was stopped by her conscience in time, but not until after she’d acquired a gun and made plans.

And that is just one of the most extreme examples of what I’ve heard happening when the psych system is presented as your only hope.  In my case, I had no homocidal tendencies, but I did try to kill myself many times because the psych system didn’t remove my urge to kill myself no matter how much therapy I got, how many meds I got, it just got worse.

Kids need to be taught there are other choices.  They don’t have to take meds.  They don’t have to see a shrink.  They don’t have to go inpatient.  There are risks to doing all of those things, and kids need to be taught that, too.  They don’t need to be taught the shiny utopian view of the psych system with magical powers to make us all better.

And I hate NAMI with a passion, and have ever since I first heard of it.  It was my first experience with an organization about a group of people, run only by family members and professionals of that group of people, and treating actual psychiatrically disabled people like shit when they weren’t tokenizing them in some way.  I know some psychiatrically disabled people who work within NAMI trying to change it, and I wish them luck, but I don’t hold out a lot of hope.  I really hate NAMI.  NAMI is not a good source of information about anything at all.

And they think calling them “brain disorders” or “neurobiological disorders” or “NBDs” for short, will actually fix anything.  Ha!  I remember NAMI touting a book called  "Don’t Call Me Crazy".  One of my favorite books is “Call Me Crazy” by Irit Shimrat, who is (by the labels of the psych system) schizophrenic and has been very active in the mad pride and ex-patient movement.  And she’s one of the people who uses crazy, mad, lunatic, and insane as descriptions of her experience because she feels they capture them better than a clinical label.  Her book was amazing to me when I read it.

2:25am September 20, 2014
Anonymous asked: (1) I'm 14 and I think I might have Autistic Catatonia. Ever since I was maybe nine or ten, I've been 'freezing'. I figured out a similar method of grounding myself that you described in one of your posts on FC. When I was younger it started with 'wiggle your toes' but now it's 'move your eyes'. More recently, I've been stuck stimming. I used to be completely verbal but now it's getting harder and harder to talk and to have my words mean what I want them to mean.

(2)There’s no longer a delay to some of my echolalia for the first time in my entire life. I’m scared. I’m so fucking scared. Maybe it’s just that I’ve been conditioned to think catatonia=terrible awful thing, but it seems like the end of the world. If everything goes right, I’ll be in college in a year, but I don’t know if I’ll be able to do that with catatonia. I guess what I’m asking is, could you give me a realistic hope because I’ve lost the false one and what’s left is despair.

I can’t tell you what your future will be like, either functionally or in terms of what part of society you’ll be living in.  But I can tell you that there are lots of people with autistic catatonia who live on our own.  Not live without help, but still don’t live in institutions.  

Jim Sinclair, who is extremely famous in the autistic community for founding ANI and Autreat, has autistic catatonia.  

I never really finished high school.  I skipped to college, then went to special ed high school, then community college.  But I never actually finished and got the curriculum and everything from either junior high, high school, or college.  The only graduation I ever attended was special ed, and that’s because they’d graduate anyone who was leaving.  So my education was extremely spotty, and university didn’t work out for me, and I probably shouldn’t have even been trying college but I did.

And anyway… then I moved out on my own and discovered exactly how few daily living skills I had left.  If it weren’t for my cat and someone who helped me over the phone, I would’ve starved to death, and I still starved a lot, just not to death.

Anyway, I was able to get services.  If you don’t have any sort of autism diagnosis now, you should try to get one (possibly with the new “catatonic features” qualifier if you can wangle that without the shrink going “oh no it’s not catatonia because you’re not a stereotype” or something) because having a childhood autism diagnosis will help you immensely if you need services as an adult.  I got my first autism-related diagnosis at the age of 14 and that probably saved my life.  Some places won’t accept adult diagnoses, or will only do so with a fight.  Of course some places want you to have an IQ under 70, too, and there’s not much you can do about that in one of those places other than move, unless your IQ is actually under 70 (which I don’t know, because you can’t tell by looking — Donna Williams has written nine books and has an IQ of 67).

Anyway, I needed services really badly, and I got some help from the local Center for Independent Living and from my family, and I qualified for services.  They tried to ignore us.  Like they tried to pretend the deadline hadn’t gone by, and didn’t return our calls.  Things like that are common tactics — they expect you won’t call back, and if you don’t call back they’ve saved money because you haven’t gone hunting for those services.  But we got the local Protection and Advocacy to send them a letter demanding that they tell us whether I qualify or not, and suddenly they acted like all that never happened, “Oh yes you qualify,” etc.

So services have allowed me to live on my own outside an institution.  I’ve had to fight to stay out of institutions (including group homes, ICF/MRs, nursing homes, etc.) over the years, for both autism-related and physical disability related reasons.  But I am out.  And I live my own life.  It’s not the life I expected growing up:  I don’t have a job, I need help with a lot of things that most people don’t.  

However, I’m free.  And I have been able to carve out a life for myself in freedom.  And that means the world to me.  Because when I was your age, I was certain I’d end up in an institution for the rest of my life.  Because people told me one of two things:

1.  You’ll get better and you’ll be living totally independently by your early twenties.  Maybe you’ll be a little eccentric but you won’t be disabled.

2.  You’ll stay the same or get worse and end up in an institution.

Both of which amounted to the same thing:  ”Stay how you are, and you’ll end up in an institution.”

I didn’t know about the disability rights movement.  I didn’t know about the self-advocacy movement and the parent-advocacy movement for people with developmental disabilities, both of which are responsible for the existence of services outside of institutions.  I didn’t know I had choices.  I didn’t even really know I was autistic, I thought I had some mysterious thing with no name.  I heard the words “autism” and “developmental disability” and they went right over my head so I decided they were something between unimportant and scary, and clung to misdiagnoses that at least I could understand (like psychosis).

So I didn’t know any of that stuff.  And autistic catatonia didn’t exist as a diagnosis back then.  When I was 14, they diagnosed me with autism, and they mentioned catatonia at some point, but they didn’t put the two together, they saw catatonia as solely a form of psychotic behavior.  (Even though catatonia is associated with many purely neurological conditions.)  There were two papers out on autistic people who experienced catatonia, and both of them were single case studies and not very well done.  It wasn’t until around 2000 that they were doing studies on entire groups of people with autistic catatonia, and it wasn’t named “autistic catatonia” until a few years after that when a medical journal did an entire issue on autistic catatonia.

As far as medications go, lorazepam has been known to help autistic catatonia, and I and several people I know have been helped by it a lot.  There are also environmental modifications you can do, like moving to music with a very regular beat, which can help you move.  Tony Attwood mentions autistic catatonia in his older book “Asperger Syndrome: A Guide for Parents and Professionals”, and I think it’s also mentioned in “A Complete Guide to Asperger Syndrome”.  I don’t know why he was one of the earlier people discussing it at all, and I don’t totally trust him, but I’m sure he’s seen more than his fair share of patients with catatonia.  (People with Asperger’s and PDDNOS can get it just about as easily as people diagnosed with just plain autism.  The one factor that seems to stand out as a risk factor is having been socially passive in childhood.)

By socially passive, I mean Lorna Wing’s categories of social engagement in autistic people.  There’s a lot wrong with those categories, not the least that an autistic person can be many of them at once.  But I think the passive category truly shows tendencies that can later come out as catatonia, and that it seems more real as a category than some of them.  It’s also the rarest of the social categories.  But any kind of autistic person, from any category of autism that’s ever been devised, can get autistic catatonia.  I know people with Asperger’s and no speech delay or speech impairments in childhood, who are now mute because of it.

Here’s a description of those categories in case it means anything to you:

3.2.1 The aloof group

This is the most common type of social impairment. Behavior may include:

  • Behaving as if other people do not exist;
  • Little or no eye contact made;
  • No response when spoken to;
  • Faces empty of expression except with extreme joy, anger or distress;
  • No response to cuddling;
  • If something is wanted, carers’ hands may be pulled towards the object;
  • May respond to rough and tumble play well, but when this stops return to aloof pattern;
  • Seem to ‘be in a world of their own’.

3.2.2 The passive group

Least common group, features include:

  • The child accepts social approaches;
  • May meet the gaze of others;
  • May become involved as a passive part of a game.

3.2.3 The active but odd group

Children of this group make active approaches to others but make that contact in strange ways, including:

  • Paying no attention to the other party;
  • Poor eye contact although sometimes may stare too long;
  • May hug or shake hands too hard.

3.2.4 The over-formal, stilted group

Seen in later life, this behavior is common in the most able person with autism. The following characteristics tend to be displayed:

  • Excessively polite and formal;
  • Have a good level of language;
  • Try very hard to stick to the rules of social interaction without really understanding them.

So basically aloof means you avoid social approaches and act like they don’t exist.  Passive means you accept social approaches but don’t initiate them.  Active but odd means you make strange, one-sided social approaches that strike people as unusual or eccentric at best (think Luna Lovegood in Harry Potter, kind of).  And formal means that you do make approaches but you communicate in an extremely formal manner even in casual conversation (think Ernie MacMillan in Harry Potter).

I’ve had elements of all four, and most autistic people do.  I was aloof around other children in early childhood, and in late childhood I learned to sometimes make active-but-odd approaches.  But overall, throughout my life, I’ve been unable to make social approaches easily yet if someone else initiates them I can usually participate.  That distinction — can’t do it without an external prompt, can do it with a prompt — is exactly the distinction that is often found in movement, memory, and thinking in people with autistic catatonia.  So it’s no wonder passivity is related.

Anyway, so when I was your age nobody even knew what autistic catatonia was.  It took me six years after my initial autism diagnosis (which occurred at your age) before my doctor saw Lorna Wing and Amitta Shah’s paper “Catatonia in Autistic Spectrum Disorders” and diagnosed me the moment it was faxed to him, because I had had all of the features pretty much as long as he’d known me.  And he’d known me a long time by then.  That paper is still the best overview of autistic catatonia, especially because unlike some of the bullshit Dirk Dhossche put together, it doesn’t advocate electroshock therapy (the kind where they zap your brain) as a treatment.

Dirk Dhossche wants electroshock (ECT) to make a comeback.  So he studies anything that he thinks will help him do so.  Which in practice means severe catatonia and severe depression.  He’s also an asshole, don’t ever try and talk to him.  Donna Williams and I got treated very rudely by him when we objected to the ECT thing.  He told us that we just didn’t understand severe catatonia, even though Donna used to not move for months on end and was cared for by her family because she just went completely still at one point in her adolescence.  But Dhossche was having none of that, he just acted like we didn’t understand.

If you consider ECT, understand that it’s a crapshoot whether it will work (it usually doesn’t, it’s basically like whacking your head with a sledgehammer and hoping it’ll reset something rather than leave you with brain damage), it’s usually reserved for the most severe cases, and everyone I know with autistic catatonia who has had ECT came out the worse for it.  Like one woman who lost all of her memories and had to relearn everything including how to talk.  She almost died when the ECT sent her into status epilepticus.  (If you’re epileptic, don’t go anywhere near ECT.)  She’d had milder epilepsy beforehand but now her epilepsy is extremely severe.  Another person I know with autistic catatonia who was on ECT for awhile, said that waking up from it was the most painful thing she’d ever experienced.  And it didn’t help the catatonia or anything else she had either.

Anyway.  So.  At your age I had nothing on autistic catatonia.  And yet somehow by my twenties, I was living on my own.  Not because I had the capacity to take care of myself.  But because there was this third option besides “get better and never need an institution” and “get worse and need an institution”.  The third option was “get worse and get services that allow you to remain in your own home”.  You should start planning for those services now, and one important thing in many places is a pre-age-18 autism diagnosis, so if you can get one, good, and if you can get one with the catatonic features qualifier attached, even better.  If you already have one, very good.  (But if it’s Asperger or PDDNOS you might want to get a newer one where it’s all Autism Spectrum Disorder, because some places will deny services for people with Asperger’s, PDDNOS, or atypical autism, and only take people with an autistic disorder diagnosis.  These days there is only one autism diagnosis: autism spectrum disorder — and having that diagnosis may help you if you already only had a PDDNOS or AS dx.)

And if those services don’t exist in your state/province/country, or don’t exist for people meeting your description, you might want to join with advocates, I guarantee they exist somewhere, who are working to help create a world where nobody has to live in an institution of any kind.  The developmental disability self-advocacy community does a lot of that work, and I think the Autistic Self-Advocacy Network may be involved in some of that, although I don’t know how directly.  (And whether it’s actually them going in and trying to convince the state to provide better services, or whether it’s just PSAs and the like.  I just don’t know.)  Being involved in that advocacy work means two things:  One, you might change your area’s policy on the matter.  Two, you’re likely to be hooked up with people who can help you advocate for services if and when you need them.  Because self-advocates and parent-advocates tend to know the system inside and out.

Anyway, you should be planning for that possible future now.  It’s possible you can live on your own without all that support, or that you could live with family or friends or someone willing to provide that support outside the system.  Those are all things that people I know with autistic catatonia have done.  But if you do need the services, you’ll be glad to have planned.  Having all the right paperwork showing that you’ve had all the symptoms and functional limitations and stuff, goes a long way to getting services.  (And things that are a nuisance at 14 can be life-threatening as an adult.  As a child I was very disorganized, and that didn’t seem like it would be a huge disability as an adult, but it was, because my inability to clean my desk at school was tied to my inability to clean my house and avoid living in total filth, and my inability to be organized enough to even get food and eat it.)

You have a huge head start on me and a lot of people who weren’t diagnosed with autistic catatonia until adulthood, and that’s why planning now for the worst-case scenario is important.  You might also want to be planning for communication devices and the like, for times when you are unable to speak.  There’s also software for things like computers, tablets, iPads, iPhones, Android, and the like that you can get.  Often under “text to speech” or similar things, also sometimes under “autism”.

Also something has happened to me that I did not expect.  I acquired a severe case of secondary adrenal insufficiency.  This means that my pituitary gland (near the brain) doesn’t produce ACTH, which tells the adrenal glands to make cortisol.  And my adrenal glands don’t make enough cortisol even when stimulated by flooding my entire system with ACTH.  This is a dangerous and life-threatening condition, and I will have to take steroids the rest of my life.

But.

Ever since I got it, I’ve frozen less often and had fewer periods of moving really slowly.  I still have trouble speaking, I still have serious trouble initiating movement, but I’m much better than I was.  And it seems to have coincided with a huge drop in my cortisol levels.  I don’t know what that means, in terms of anything, but I thought I’d tell you that weirdly enough a chronic illness can sometimes make autistic catatonia better, at least for awhile.

(And I wonder… cortisol is a stress hormone.  Lorazepam treats stress, among other things.  And stress is a known factor in the development of autistic catatonia.  So I do wonder if there’s a connection between severity of stress and severity of symptoms of autistic catatonia.)

Anyway I’m rambling.  I don’t know if I’ve given you enough hope.  But when I was your age, hope would’ve consisted of “It’s still possible for you to become severely disabled and live your own life, as you want it lived, outside of an institution or group home.”  Which doesn’t mean you’ll necessarily get that, or that you won’t get stuck in an institution (I’ve done about 1.5 years of time in inpatient mental institutions of various sorts, spread out over 4 years, and that doesn’t count what I call “community institutionalization” where you’re under institutional power structures but technically live in the community) but at least there’s hope that you can.  Because I exist, and Jim Sinclair exists, and Donna Williams exists, and so do lots of other people living our lives in our own homes despite severe disability brought on by autistic catatonia.

Also… 1/3 to 1/6 of autistic people, from the research I’ve done, lose skills in adolescence.  Of the 1/3 number, ½ of autistic people gain those skills back after adolescence.  So it’s possible that’s what you’re experiencing, too, and that you might regain some of these skills after your hormones quiet down and your brain matures.  Adolescence, brain-wise, ends in your mid-twenties.  I didn’t regain any skills at that point, but emotionally I became very stable compared to before.

I hope any of this information has been helpful.  I know how scary it is to be 14 and facing a very unknown future with autistic catatonia — and in my case (not sure about yours) everyone either had a totally bleak prognosis for me or was in denial about how bad it was and that it was only getting worse.  And for me, knowing that there were other options besides institutions and getting better, would have helped me a lot and even probably saved me a few suicide attempts.  (Something I don’t recommend as a way out, at all.)

If anyone else has any words of advice, they’d be welcome in reblogs and responses to this post.

TL;DR:  Even if you end up with serious functional limitations as an adult, it’s still possible for you to live outside an institution and control your life.  It can be hard to get those services in some places, but they do exist.  And the earlier you plan for it, the more prepared you’ll be.  tI’s even possible that if you’re in the system already, they can do a “transition plan” that involves getting you services as an adult when you leave high school.  But I don’t know what if any DD or IEP services you’re getting already.

5:36pm September 8, 2014

LGBTQ/crazy problems #29183

While coming out, go to an LGBTQ community center.

Mention time spent in mental institutions.

Hear utter horror in a woman’s voice as she asks, “For being a lesbian?”  The entire room tenses up and freaks out.

Say “No,” and explain the actual circumstances of your commitment to mental institutions.

The entire room lets out a collective sigh of relief and someone actually says “Oh, that’s okay then.”

Leave, while restraining urge to kick everyone’s teeth out.