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TESTIMONIALS

Adult Victims Speak Out: First Person Accounts of Their Abuse WARNING: The following first person accounts of abusive behavior modification (ABA) and restraint may be disturbing. However, what is documented here is the truth -- the lived experience of persons with autism being brutally violated by those who are purporting to provide a health service. (Sometimes even purporting to provide "recovery.")

"Trapped....over and over again..bruises..eye contact forced...takedowns..." If I said "Yes give me the medication" I would have been giving in. If I said "No" then I was being non-compliant and would have to be tied down. If I said "No" then I must not want to get better. If I said "No" then I must just want to make a big spectacle of myself, and get all kinds of attention.

If I ran away from people holding on to me, or touching me, it was because I "wanted to be restrained." If I fought as was an instinct, it was because I "wanted to be restrained." If I went limp or rigid, I also "wanted to be restrained." There was nothing I could do aside from do exactly what they wanted, or "want to be restrained."

If I reacted in instinct to people holding me down, by screaming at the top of my lungs, I was being "melodramatic" and "overreacting." It was "come on Stephanie, it's not that bad." It was "You have to quit the melodrama." It was screaming until everything went white, with no ability to think or do anything except be terrified. It was seven people, some of them quite large, on top of a 15-year-old girl, and telling her there was nothing to be so afraid of.

It was being tied down in the "Quiet Room" (which is rarely quiet unless its empty or the occupant is drugged into unconsciousness) and trying not to look at people's faces, trying not to show them I existed or was reacting, only to have eye contact forced, more laughter, "Come on Stephanie, we know you can see us."

It was listening to the people outside the Quiet Room, discussing my case as if I couldn't hear them, making judgements about me that were untrue, and getting drugged if I got angry about them. It was finding that the next day, I had bruises all over my body --- more than I ever got from the physical abuse I went through outside the hospital.

It was that moment of terror where the whole world disappeared and all there was was that terror. Over and over again. Until that terror was etched into my brain very deeply.

It was being tied down for the first time, and not knowing quite what was going on. I was face down on a table, and they stretched my legs and arms so tight the circulation went out of them. I screamed what seemed to be forever, and I realized I was alone in this blank room, and screamed and hyperventilated some more. I didn't know when I was going to be let out, and I wanted to tell someone that my leg was going numb.

I could see a one-way mirror on one side of the room, and could see the people on the other side of it. They came and went, and I could hear them mutter things to each other. I yelled for them to let me out. I yelled that my leg was going numb.

After a long time, they came in and told me that unless I could be quiet, they wouldn't let me out.

I couldn't be quiet. I was terrified and trapped, and I hadn't learned to just "freeze" yet. I kept screaming.

Eventually they came in and asked me to swallow some pill.

I refused.

Then they were pulling down my pants and I don't know if you've ever been strapped to a table and had your pants pulled down, but it brings all kinds of terrifying images to mind. It turned out they were giving me a shot. I didn't really feel sedated, but eventually they let me out.

The day after the shot, my therapist was there with me. I was acting strange, I am told, and saying there were little people running up and down the halls (I had never used to say things like that, before medication, and suspect the medication made me slightly delirious and hence "psychotic" and hence "needing" more medication). Then I began to lose control of my jaw. I couldn't move it. My therapist told me its perfectly normal for these medications (this one was Haldol) and not to worry about it. Soon my jaw clenched tighter. I put my fingers in my mouth to try and control it. After concluding all I would do was trap my fingers in there, I took them out.

Eventually, I did convince someone somehow that it was a problem, and they gave me a shot of Cogentin (an anti-parkinson's medication) that made it clear up. My reaction to Prolixin, much later, was very similar, only that was the time I refused medication so they said they'd have to tie me down. They were disapproving because they said that I would have to take it anyway, so I must just be acting "defiant" or something of the like, to make them have to tie me down first.

It started out with a similar reaction as to Haldol. They said "give it time." Eventually, my tongue stared to swell and I couldn't talk properly. They said "give it time." Then my windpipe started to constrict. They still said "give it time." I said that I couldn't breathe. They said, "If you can talk you can breathe, give it time." It started to swell more, and I started to choke trying to breathe. They laughed and told me I was being melodramatic. Then my one-to-one nurse (who my doctor, the only one there who had my best interests in mind at all, even if misguided sometimes, had ordered) came up to me. I was lying in some weird position in the entryway to my hospital room, terrified and choking. She asked me if I couldn't breathe. I indicated that I couldn't. She said she had asthma and understood that I was serious. She went and got help. She is why I'm still alive.

A reaction to the medication was "noncompliance," "melodrama," "defiance," "attention-seeking behavior," or any number of other negative things. In short, a reaction to the medication was my fault, according to these people. Also, an instinctive reaction to being touched when I did not want to be touched, or a reaction to being held or dragged or sat upon or restrained by multiple people at once, was the same things. None of these people thought of what would happen to them in the same situation--perhaps the same thing. And who would be there to tell them they were being non-compliant or all those other things?

I had an idea for a training session for them--have them jumped by 7 people at once, with no warning, held to the floor, dragged, demeaned, laughed at and injured, and see if they could manage to act "normal" in that situation, or "compliant." See what they would do if they had to spend the night, or longer, in heavy restraints after all that, being lied to about how they would be let out soon if they were just quiet enough. To this day, I still find myself sometimes sleeping in the same positions that I was restrained in. I never used to sleep in those positions. It got rained into me. I still find myself trying to blow the hair out of my eyes instead of moving it with my hands, because when my hands were restrained I couldn't do it.

I used to point out to them sometimes that they were restraining me only for "staff convenience" which is technically illegal. They laughed at me. But it was true. I sometimes was restrained because I was sitting in the wrong part of the hallway, and wouldn't move, or was sitting motionless in a chair trying to "disappear." During those times of course, the would tell me I had been restrained for being "aggressive." This is because they would converge on me from all sides, and try to touch me or move me. Sometimes they would try to pick me up, or they would yell at me. If I startled or fought back, I was considered "aggressive" and carried into the Quiet Room to be restrained, sometimes after a lengthy "take down." If I did not startle or fight back, and simply went rigid, they would take me into the Quiet Room and tie me down.

A "take down" was not some sort of neat procedure you'd read about in a manual. It was a very painful procedure, often with unnecessary forced used (I could swear some of those staff enjoyed it). Basically, when you "needed restraining," the staff would tackle you to the floor. Sometimes they called in extra staff, as if the several in the unit weren't enough to completely overpower some of us smaller folks. Sometimes the staff were called to a different unit, and you could see them jogging away looking very businesslike and professional, and you would know what they were doing. They would jam you into the floor, hold you down as hard as they could, and sit on you. Sometimes, if you weren't too terrified to notice, you could hear them laughing and congratulating each other on what a "good job" they'd done.

It was a terrifying experience, but showing the terror meant that you got more ridicule and punishment. I used to scream at the top of my lungs, only to be told to quiet down or that it wasn't that bad, sometimes I vaguely remember being pounded on, on these occasions, but it is difficult to remember through all the screaming. The other alternative was to go rigid or limp, and allow them to carry you into the Quiet Room (always the final destination) and tie you down. During those times, they would sometimes refer to you as "catatonic." They would try to force you to respond to them, in any number of ways. This proved to me that what they wanted was not cooperation---They really wanted some kind of response, and probably some kind of satisfaction.

Usually there would be another staff member who wasn't doing the restraining, to herd the other patients into their rooms before the "takedown" began. This was so none of the other patients would "play hero" as the staff so scornfully called it, and try to "rescue" the victim of the takedown. The patients were told that it was for their own safety and protection that these "takedowns" happened, but most patients had been on the receiving end of one, at one point or another and knew better.

From the Quiet Room, if I wasn't making noise myself, I could usually hear the staff talking about me and the other patients. I learned a lot in there about their disrespect for most of the patients, and their favoritism toward "cooperative patients." Of one girl who stayed in there with me, they used to say "She's a crazy little girl. Sweet, though," almost affectionately. This was because she barely ever talked to anyone, and was quite polite and cooperative, and never violent. Of another girl they said not to believe her when she said she was raped, because she was "the sort of person who makes that stuff up for attention." During the next group I heard the girl tell about her rape. I mentioned matter-of-factly that the staff had told each other not to believe her, and that I didn't understand why they were pretending to listen to her. The staff were not happy with me for "breaking confidentiality." I had never signed any agreement saying that what the staff said amongst themselves was confidential. They knew I could hear them from the Quiet Room (and said so many times when I was in there), so if they really wanted to keep something confidential they shouldn't have said it.

They said all kinds of things about me, after restraining me. I could hear them theorizing about what was "wrong" with me. They said it was my fault that I was the way I was because of the drugs I had taken. Or they said that I "just wanted attention." They had lots of other speculations , which I can't remember at the moment but which usually involved blaming me. "Amateur Psychiatrists" is what my doctor called them, scornfully. They hated my doctor, too, because he cared about me. He used to sneak me food and candy in the Quiet Room when he came to visit me there. One time he snuck in Altoids breath mints and one of them fell on the floor. The staff demanded to know what it was, and didn't believe me when I said it wasn't a pill, and that it was an Altoid. It took a long time to convince them.

They also hated him because he wanted to decrease my medications. He knew the medications were sedating me and not helping me. They said, "Decrease, that's R" when R was his last name. They didn't think he knew what he was doing. There was a time period when, in withdrawal from the medications (withdrawal from antipsychotics can have a strange effect on ones thinking), I refused to eat. I had done what felt like a scientific experiment on the food. If I ate the food, I could not remember my day. If I did not eat the food I could remember my day. I told them that the food must be drugged. (I think that in reality it may have been food allergies and intolerances, which definitely effect my mental functioning). I demanded sealed food. They would not give it to me. This went on for at least a week. My parents and brothers snuck in food for me occasionally, but eventually it was discovered by the staff and I got in a lot of trouble. They asked me where all the oatmeal came from and made me get rid of it. They asked me if I knew how dangerous it was to keep food in my room (dangerous from what, I still don't know). They continued to refuse to feed me what I demanded, on the basis that by feeding me they would be "feeding a delusion." By feeding me, they would be keeping me alive, is more like it.

Eventually, my doctors heard of this. They ordered the staff to give me food that was sealed along with Ensure liquid nutrients. The staff very grudgingly obeyed. One day the staff brought me food that was opened already, and I refused to eat it. They called my "spoiled." (I didn't understand this either--there was a girl in the next room who would throw the food "at" staff, something I wished I had the gall to do.) That's the other thing--there were patients a lot more openly rebellious than I was. I wished I could be like them. One girl would cheek her medications, and when she got caught at that, she would take liquid medications and spit them in the staff's face, grinning.

This stuff sounds cruel, but when you've been in one of those places thats the kind of sight you really like to see. I never spat medications at the staff--I simply, eventually, refused them. I had the right to refuse them under law (until my parents signed a paper), and I used it to my fullest ability. I did not have the right to refuse them in the Quiet Room, however, so I got a lot of shots. I did, however, do some things that made me proud of myself in the odd way that you can only be proud of yourself when you really hate a place. I sometimes, when upset, would jam a chair through a wall, which produced satisfaction from the sound and feel of breaking a small part of the place, and then when I saw the workmen have to come in and repair it I was really satisfied.

I would also attack the staff, which I did not feel so good about. But there was no where else, a lot of the time, to point the rage that comes from living in one of those places. The first time it happened, I was really terrified by what I had done. The nurse was frantic and terrrified, and describing it to the other sttaff as I was lying in the Quiet Room trying to piece together what had happened (which was that I had contemplated it for a few moments, and then, without realizing it, sort of snapped). She eventually came into the Quiet Room, and the only thing I could think of to say after hearing her description, was "I can't believe I did that."

She told me how angry she was with me, and that she ws thinking of suing me for injury. I told her (truthfully) that I couldn't quite remember what happened yet. She asked me why I'd just told her I couldn't believe what I'd done. I tried to explain about having heard her description, but she didn't believe me. Eventually I did recall what happened. I had been looking at her, and feeling very upset, and eventually jumped on her. At that point, all I know was that I was doing anything I could to her, and all she was doing was standing there and saying my name over and over again.

Eventually I was pulled off her, "taken down," and taken to the Quiet Room. This kind and degree of aggression was not normal to me. I had rarely attacked people in the past, and onlly when highly provoked and overloaded (and at these times I was not together or coordinated enough to do much damage). This was different--it was rage, focused on a person. Before that, I had basically been a gentle person, if occasionally likely to use my claws in a moment of panic. But something about living in those conditions made me downright violent. Actually, although I am not fond of violence, I have been congratulated by many people, some patients, and some not, for attacking that particular nurse, who was notorious for being mean and cruel. That hospital is now closed, and I hope that she never gets a job in the field again.

After once, the pattern continued. It was as if something had snapped, and I couldn't stop. I would see a staff member and suddenly jump on them, sometimes feeling rage and sometimes in a strange automatic sort of way. I didn't always know I was going to do it. They always said I did, because I would "smile" right before hand. I don't remember smiling, but I guess is that the "smile" was really the same predatory baring of teeth that goes on in other animals. I was also told that it sometimes looked like I was trying to "hug" the staff. I think that this must have been also like a non-human animal, in which the "hug" is a fighting stance.

Again, I think it is noteworthy, that you can take a basically non-violent person, put them in a psychiatric hospital, and come out with what I just described.

***Pseudonym used to maintain confidentiality.