Home » 2016
Yearly Archives: 2016
On 27 January 2008, Autism Speaks co-founder Suzanne Wright (d. 2016) published a short editorial in Parade titled “Autism Changes Everything.” That op-ed has been repeatedly cited by autistic people and others critically examining rhetoric about autism in the public sphere, but it has disappeared from Parade‘s website, and so far (as of August 2016), you have to go back to several year old captures in the Wayback Machine to find its text. They’re doing a good job of trying to make it disappear from the internet. (But the internet remembers forever.)
Here is the text of that awful piece, preserved for posterity (meaning, so current and future advocates can have it as a piece of evidence in the rhetorical war on autism — and by extension, on autistic people), so we don’t forget or lose records of the things they’ve said about us:
AUTISM CHANGES EVERYTHING
[Photo: Suzanne Wright and her grandson, Christian.]
My grandson Christian and I used to sit by the side of the road together and talk about the different vehicles as they passed. He loved to name them all—mail truck, delivery truck, garbage truck. Our home videos, now too painful to watch, show a happy little boy reveling in the new role of big brother.
A few months later, this bright, beautiful child was somehow slipping away from us. His words left him, and his playful personality gave way to frequent and intense tantrums. His potty training disappeared. He began to suffer from gastrointestinal problems and recurring infections. The sensation of sand under his feet now made a walk on the beach feel like torture. Autism had its grip on Christian, and it was taking hold of our entire family in the process.
For a while, we mourned the loss of the little boy we knew and all we hoped he would become someday. And then we got back to loving and celebrating the wonderful child he is and how much he has to offer.
My husband Bob [vice chairman of General Electric] and I simply could not fathom why so little was known about a disorder that was devastating thousands of families like ours. Where were the impassioned speeches on the floors of Congress? Why hadn’t anyone told us this could happen to our grandchild—to anyone’s child?
Some may view autism as the disease du jour, the cause of the moment. That trivializes what many are enduring. Families are literally going broke trying to provide their children with the services they deserve. Adults with autism are failing to meet their potential.
Our grief evolved into feelings of anger and, eventually, determination. We started a foundation called Autism Speaks and, working with thousands of remarkable parents, have brought this issue front and center. With the help of the United Nations, we are taking this effort global. This year, April 2 will be World Autism Awareness Day.
We’re now playing catch-up as we try to stem the tide and ultimately eradicate autism for the sake of future generations. If we continue our current trajectory, we’ll get there in my lifetime.
In April 2014, the U.S. Food and Drug Administration held an advisory panel hearing on a potential proposed ban of aversive conditioning devices used for contingent electric shock — the Judge Rotenberg Center in Canton, Massachusetts, is the only known institution to currently use such devices for behavioral modification. Ian Cook, a survivor of the JRC who spent several years in that institution, gave testimony in person. This is the transcript of that testimony taken from the official hearing transcript.
MR. COOK: Hello. I am Ian Cook. My legal name is Hilary Cook. And thank you for having me here today. I was a student at JRC from 2006 to 2009 and was on the GED-4 for the majority of the time I was there.
The only good thing that the JRC did for me was taking me off of my medication. It turned out they were at the root of my problems. The GED, however, didn’t help me at all, on the contrary. I had been put on the GED due to my previous aggressive behavior. That said, I cannot remember a single time I was ever shocked for said behavior.
Most of my shocks were for noncompliance or disruption. In fact, I was also subject to a method known as BRLs. While I was sitting in a restraint chair, a staff would burst into my conference room — I was one-onone alone with staff — and screamed at me to hurt him holding a knife. Even though I did absolutely nothing and sat there in shock, not having any idea what was going on, I would receive a shock from the GED device. This happened a couple of times a week, at first, and left me in a constant state of fear, never knowing when I’d be hurt for no reason.
My experiences from the GED have affected me to this very day. I now suffer from a fear of authority, a fear of being controlled, and I panic when presented with either.
A side note. I was in an abusive relationship two years ago, and part of why I fell prey to it — my belief — is that JRC instilled a lesson in me that it is okay for people to hurt me so long as they are trying to correct me.
I have, to the best of my knowledge, not experienced any beneficial effects, both either short term or long term, from the effects of the GED. I would strongly suggest, based on my personal experience and my ongoing difficulties, that the FDA ban the current and future use of the device.
Thank you very much for having me.
Content/TW: Abuse in institutions, extreme ableism, behaviorism at its absolute worst, coercive treatment.
Jennifer Msumba, a biracial autistic woman, was held in the Judge Rotenberg Center for several years. After testifying via video at the U.S. Food and Drug Administration’s advisory panel hearing in April 2014, she began to write a blog documenting her experiences at the JRC. She also spoke on an October 2014 panel (along with disabled attorneys Deepa Goraya and Shain Neumeier) at Georgetown University on disability and institutional abuse.
In June 2015, Jennifer published a page from her behavior sheet at the JRC to her blog. This is a text-accessible version of the sheet (which was shown as an image).
And here’s a handy list of abbreviations/explanations for the euphemisms and blatant duplicity:
OOS = out of seat
1 GED-4 = one shock from the GED-4
helmet = sensory assault helmet that covers your head and assaults you with awful white noise
lose points = points toward getting a reward
touch electrical items in an attempt to dismantle or defeat its use = trying to take the GED shock device off or to prevent it from shocking
GM = general monitor? not sure
HDB = health dangerous behavior(s)
U/D = urination/defecation
MDIS = maybe “manipulative, destructive, or inappropriate speech” (?)
NCMP – “non-compliance” (and manipulation? unclear)
EdSoc = educational/social
LOP = loss of privileges (basically, disciplinary status)
WATC = individualized learning software that JRC uses (I believe)
IVB = inappropriate verbal behavior
Aggress1 – 1 GED-4 (legs/waist/cross-overs/helmet for 1 hour) OOS without permission (to exclude rewarding environments and the All Purpose room) out of bed without permission (to exclude bath-ops), make verbal or written threats to aggress, aggressive posturing,: any physical aggression towards others including attempts (to include biting, hitting, punching, pulling hair, choking others), spit at others.
Destroy1 1 GED-4 (legs/waist/cross-overs/helmet 1 hour; lose all points) Property destruction to include attempts and threats (verbal or written) (to include bang objects, kick objects, throw objects), slam doors, touch electrical outlets without permission, touch electrical items in an attempt to dismantle or defeat its use.
HDB 1 1 GED-4 (Legs/waist/cross-overs/helmet 1 hour; Lose all points.) Blatant attempts to hurt self (including head bang, attempts to cut body with objects i.e. CDs, stick items in body i.e. tacks, push pins, etc. ), attempts to commit suicide (to include lying objects around neck), runaway (to include attempts), remove seatbelt without permission, attempts to remove restraints (e.g. waist, ankle, crossover, helmet), make suicidal gestures, pick fingers to cause redness and/or bleeding, violent head shakes, pick scabs, self, hit self, scratch self to cause injury, drop self to floor, verbal threats to harm self (to include comments about health dangerous behaviors or dying, such as ‘don’t bang your head’, ‘kill me’-excluding when speaking with treatment team or nursing), pressurize ears/eyes for more than 3 seconds, self-restraining for five seconds or more (e.g. forcefully wrap hands in clothing, forcefully pulling clothing into body, forcefully wrapping legs/arms around chair, and forcefully pull self into GM table), repetitive hand movements in front of face, tense up for more than 2 seconds (to include fingers), remove shoelaces/drawstrings without permission.
HDB Inap. U/D 1 GED-4 (Lose All Points) Defecate or urinate anywhere but in toilet.
MDIS1 1 GED-4 (legs/waist/cross-over/helmet 1 hour, Lose all points) Swear at others (to include nonverbally), yell, scream, steal (to include food), instruct or request others to exhibit negative behaviors, make threats or comments about breaking behavioral contracts, clear desk or table of objects forcefully, forceful jumping at inappropriate times, loud repetitive disruptive talk out, racial comments, sexual comments/gestures, expose self (to include removating clothing at inappropriate times- excluding shoes/socks).
NCMP1 1 GED-4 (legs/waist/cross-over/helmet 1 hour; lose all points, 3 step direction) Blatant NO, refuse to follow any given direction (3 step direction), attempt to remove or defeat the purpose of the GED, refuse physical prompting
MDIS2 NO Ritualistic behaviors (i.e. hesitating before passing through doorways, repetitive tapping of objects, having to touch something with both hands instead of just one, etc.)
EdSoc1 NO (point fine) Personal space violation, stop work, mimic others, rude gestures (to include sticking out her tongue), rock with appropriate stimulus, avoid eye contact, non-functional manipulation of objects for more than 5 seconds, facial grimacing, pace, take shoes off without permission, write bizarre letters/notes/etc., spit food (not at others), hand play while seated at GM, cry at inappropriate times, perform a learned task incorrectly, leaning off the side of the chair and sitting backwards in the chair BUT will exclude turning head around and also to exclude turning head around in response to a commotion or a crisis, suck thumb, negative reaction (crying, stomping, noises, comments) to change in schedule or information given to her, repeatedly rub head.
EdSoc2 NO (Lose all points) Lending/borrowing/giving/receiving of items, make medical complaints without foundation, lie, threaten/intimidate/complain/talk back concerning staff decision/pinpoint/conduct, failure to follow student rules, make/accept phone calls to/from family when on LOP, intentionally blow air on others, touching other students belongings without permission, refuse to complete task/chore or intentionally complete WATC work incorrectly, misplace/hide/leave behind restraint bag or individual restraints (i.e. leaving helmet/restraints/entire bag at the house before transport to school and vice versa), leave a supervised area (to include attempts), spit/drool/blow nose on self, run through buildings to include hallways/classrooms/residence, stand/climb on furniture, rude comments of a vicious/hurtful nature, manipulate staff, sudden tic-like body movements, any communication/interaction with [CENSORED] (including speaking to or staring at, Any rude behavior during presentations (ex: falling asleep, closing eyes, talking, rude facial expressions, etc), saying ‘hell’ or ‘damn’.
EdSoc3 NO (Lose all pts.) Refuse to eat more than 50% of meal.
IVB1 NO (Point fine) Argue with staff/student, interrupt others, nag, talkout, speak in an inappropriate tone of voice, tease others, laugh/sing at inappropriate times, bizarre speech (‘I’m going to heaven today’), comments about hearing voices/seeing things, nonsense noises, verbal repeating, talk to self, negative comments (to include to or about other students/self).
In April 2014, the U.S. Food and Drug Administration held an advisory panel hearing on a potential proposed ban of aversive conditioning devices used for contingent electric shock — the Judge Rotenberg Center in Canton, Massachusetts, is the only known institution to currently use such devices for behavioral modification. Jennifer Msumba, a biracial autistic survivor of the JRC who spent several years in that institution, gave testimony via video. This is the transcript of that testimony taken from the official hearing transcript.
MS. MSUMBA: Hi. My name is Jennifer Msumba, and I wanted to make this video as my opportunity to express what happened to me when I was at the Judge Rotenberg Center, in regards to the GEDs and how it affected me. I was there from the year 2002 — March 2002 until April in 2009.
When I would get a GED, I would get — most of the times I would get a very bad muscle cramp that would last me for one to two days. I would get burn marks on my skin. They like to call them small, raised bumps. They’re burn marks. It’s electricity going into your skin, and it’s very itchy and it stings afterwards, and you have these circular marks where you got the GED. I also at one time was given several GEDs in one leg in a row, and I had a terrible pain shoot all the way through to my foot. And after that, I had no sensation in my skin on the lower half of my left leg. And for about a year, if I would touch my skin, I couldn’t even feel anything that touched my skin, from that.
Also the GEDs will, what they call, misfire a lot. That happened to me in double digits, where it would go off by itself maybe if it got wet. One time I got caught in the rain. Other times, if they give a GED to someone else nearby and that device is too similar to yours, it can set yours off. Then I had times when the staff made mistakes and mixed up whose device they’re using. So they’re meaning to give a GED to another student, and they give it to you. I’ve seen some people’s just go off and keep going off and going off over and over, and staff would literally to have rip open the bag and pull out all the wires to get it to stop. These are things that you were getting shocked for no reason at all, not even for behavior. It’s an accident, and it happens all the time.
It’s not safe. It doesn’t feel safe. I ended up having nightmares weekly, if not nightly — at least once a week — about JRC and the GEDs, about being on the GEDs. In these nightmares I’m getting shocked. During the day, if I hear certain noises, like the Velcro they use to keep them closed, I freeze. I feel like it’s about to happen to me. Or if I’m having a hard time, I start to think I’m there again and that I’m going to get shocked for it. I’ve been to dozens of horrible places, hospitals, residential schools — and I have never once had a nightmare about any of them.