Almost all discussions about autism and autism related issues generate controversy. On one point, the use of aversives in treating autistic behaviors, there appeared to me to be almost complete unanimity in opposing aversives. I recently posted a comment, Autism's Rotenberg Dilemna, after receiving Dr. Matthew Israel of the Judge Rotenberg Center reply to a previous comment in which I expressed my dismay with that facility's continued use of aversives in treating youths with autism and challenging behaviors. [And after reading some of the often irrational internet comments about the JRC]. Dr. Israel's reply provoked me to move past a knee jerk, "accepted wisdom", response and consider the position of the JRC which is posted at RESPONSE TO JENNIFER GONNERMAN’S ARTICLE, “SCHOOL OF SHOCK. In that article Dr. Israel describes the use of aversives which are used to prevent self injurious and even life threatening behaviors:
In many cases the student progresses so well with this treatment that the aversives can eventually be removed entirely and the student can be returned to his/her local school system.
From testimony before the Ontario Legislative Assembly Standing Committee on Administration of Justice:
Honourable members of the standing committee, we thank you for allowing us to address you here today. We are here as parents and we have lived in a world that, fortunately, few parents see. Our daughter, Katelyn, suffers from severe self-injurious behaviour, and we don't use the word "severe" lightly.
In late 1992, when it was clear that Katie was not responding to the usually effective methods of dealing with her SIB, we were forced to make decisions that few parents must make. We could restrain her physically for 24 hours a day, with straitjackets and tie-downs. We could chemically restrain her and risk organ damage and other side-effects that neuroleptic and anti-psychotic drugs cause. We could place her out of the home, or we could use the SIBIS, the self-injurious behaviour inhibiting system.
We decided to use the SIBIS. It was prescribed by Katie's paediatrician, a caring and knowledgeable man who treated her for all the usual childhood conditions in addition to her self-inflicted wounds. The SIBIS delivers a small shock to the fatty part of Katie's thigh when she hits or bites herself. The shock is localized to the thigh and is more startling than painful.
Had Katie been born 20 miles to the east, and subject to the provisions in Bill 108 and Bill 109, we have no doubt that today Katie would be totally incapacitated by restraints, she would be sedated into complete inactivity, institutionalized, or worse. Instead, Katie is a happy, healthy 11-year-old with severe autism.
To better understand what would lead parents to make a decision like this -- to use an aversive device like the SIBIS -- and to put that decision in context, you should be aware of Katie's life so far.
Katie was diagnosed with autism at about two-and-a-half years of age. We were of course devastated. But she was happy and healthy and we thought we could help her function at her best with the help of supplemental programs and supports. It was immediately clear that Katie would have many of the stereotypical behaviours like hand flapping, rocking and infrequent eye contact. We learned to accept those behaviours while trying to help her develop her potential strengths. We knew we would have to be resourceful in recruiting professionals to help Katie, in the fields of mental health, education, medicine, physical therapy and speech and language.
We would like to relate some of the therapies we've tried and the interventions to help Katie navigate better in this world. Some of them did help her to a minor degree, some of them did not. None of them hurt her directly. Some were before the onset of her SIB and some after.
We took Katie to holding therapy twice a week for about two years. Holding therapy is based on the theory that the mother-child bond was somehow broken and that forced holding would help repair that bond. Holding therapy has since faded as the demand for efficacy data has increased. At about the same time, we heard about sensory integration. It seemed to us that this could be a real help to Katie. If in fact she was being bombarded with sensory input, SI could help desensitize her, thereby allowing her to make better sense of the world. We took her to a registered occupational therapist trained in sensory integration for over a year. Neither of these therapies benefited Katie very much, if at all.
Between the ages of three and seven, Katie had three speech and language pathologists who worked with her on various types of communication, including sign language, facilitated communication, pointing and gesturing, picture identification and portable computers with voice synthesizers. Katie always had the ability to pull us by the arm and point to what she wanted, but we wanted to expand this ability so that other people would understand what she wanted.
Katie was enrolled in a cross-categorical classroom with higher-functioning kids so she'd have good role models. It was in this classroom that Katie began having aggressive episodes, and as the school year went on, the episodes got more intense and more frequent. We took Katie to the University of Michigan child psychiatric clinic for about a year, hoping that Dr Luke Tsai's staff could help us find a reason for the aggressions and a way to help Katie control them. The treatment there consisted mostly of facilitated communication and a regimen of Anafranil. The facilitated communication was fruitless, as Katie would never use it at home, and the Anafranil made Katie more agitated.
We looked into allergies as a possibility for Katie's worsening behaviours, possibly an environmental allergy or food allergy. The environmental allergist told us we were in the wrong pew if we thought Katie's aggression and self-injury were a result of something in her environment. We decided to try a yeast-free diet, thinking that it couldn't hurt and maybe it could help. We were wrong. That diet led to an eating disorder that still rears its head from time to time.
We found that Dr Bernard Rimland was recommending megadoses of vitamin B-6, with magnesium and a natural substance called DMG, as a possible remedy for self-injurious behaviour. Not so with Katie. Dr Rimland later told us that behaviour worsens only in about 3% of the children. Katie was unfortunate enough to be in that 3%.
Just before Katie's seventh birthday, her self-pinching and wrist-biting accelerated dramatically. She also started slapping herself in the head more and more often. At first, we were advised to ignore these behaviours, as paying attention to them might reinforce them. That made sense to us. The problem was, it didn't work. Katie would pinch, bite and hit herself even when alone, so attention-getting didn't seem to be the motivation for these increasingly dangerous behaviours. While we were trying to find a reason for Katie's self-destructive behaviours, they were becoming more and more ingrained and we were losing our little girl.
By sheer accident, we found that Katie would hit less, albeit not much less, if she wore a hat. She started wearing a hat constantly and would not go without it even in the summertime. Shortly after she starting wearing the hat, she started hitting harder and faster, as if to defeat whatever protection the hat was providing. She then grabbed a hood that was unzipped from the jacket and wanted to wear that over the hat. Then we saw the same process of the hitting becoming harder and harder. When the hat and the hood together were no longer protecting Katie, we reluctantly bought her her first helmet. Shortly thereafter, she would hit the helmet with all her force. Our hearts broke to see Katie bashing the helmet that she depended upon so much. She couldn't live without the helmet, but she wasn't living with it either.
We were learning what is meant by restraint dependence. Katie's SIB was worsening, even as we added more restraints. She was now wearing stiff arm restraints that didn't allow her to bend her elbows so that it would be harder for her to hit herself, but they also denied her the ability to feed and toilet herself.
We were still looking into physical reasons for Katie's SIB, putting her through CAT scans, MRIs, X-rays and blood tests. All of these tests showed that Katie's only physical problems were self-inflicted.
In addition to looking into possible physical reasons, we took Katie to Western Michigan University psychology clinic, where Dr Patricia Meinhold, a clinical behavioural psychologist, evaluated her and began working with us on behavioural approaches to Katie's SIB. That relationship continues to date, and Dr Meinhold is now a paid consultant for the school district as well.
Wanting to know more about current medications used to combat SIB, we made an appointment with Dr Leonard Piggott, a well-known psychiatrist who worked in the field of autism for 30 years. Dr Piggott reluctantly informed us that there was no effective drug for the behaviours. He could only offer anti-psychotics and sedatives. We later tried Benadryl and Catapres at Dr Piggott's suggestion. It turned out that Katie's reaction to almost every drug is the opposite of the desired effect.
By late 1991, Katie's helmet wasn't serving its purpose any more. She was hitting it hard enough to break off most of her hair, resulting in large bald spots and abrasions at the back and sides of her head. Katie even smashed the shell on one helmet with the force and intensity of her blows. Her eyes were constantly blackened and swollen and she had bloody, open sores on both of her cheekbones. Her wrists were bitten down to the bone and her upper arms had divots from where she chewed the skin.
The bandages we applied to her arms just became more targets for Katie, as she chewed through them. The arm restraints also lost their usefulness, as Katie could bite into her upper arms, and banging her head on walls, door jambs and tile floors would take the place of her own hits. When both arm restraints and helmet were in place, Katie started biting her knees and ankles. There just wasn't any way to protect every inch of Katie from herself.
In February 1992, we were at our wits' end. Katie was alternating between living on a two-inch-thick gym mat in our living room and a padded, sectioned-off section of her classroom, being carried to and from the bus kicking, hitting, screaming and biting by as many as four people. The school had used gentle teaching and worked from books like Progress Without Punishment for well over a year, and now it seemed all we had accomplished was delaying the inevitable.
One day, the school called to say Katie was out of control again and they were afraid she might do permanent damage to herself. We knew this was serious, because Katie's school would never admit they couldn't control her. We picked her up from school wrapped in a blanket and drove directly to Ann Arbor and admitted her to the child psychiatric ward of U of M Hospital. That was the first night Katie ever spent away from home, and it tore us apart.
At about 9 o'clock that evening we called to see how Katie was doing and were informed by the nurse that they had given her 25 milligrams of thorazine and she was sleeping. Apparently, there was fine print in the admissions form that allowed them to use their discretion on medication without consulting us.
Katie was still groggy from the effects of the thorazine at 2 o'clock the next afternoon. When we asked what the plan would be for finding the root of Katie's SIB, we were told only that, "Here at U of M we medicate, and we medicate aggressively." There would be no behavioural plan, no plan to enhance communication, only medication. We didn't want Katie sedated into submission, so we had her released.
For two years, we had tried the proven methods of extinguishing Katie's SIB. We tried positive reinforcements, we blocked hits, we redirected Katie's attention from the self-abuse. Katie was always overly praised when she wasn't self-injuring. The problem was that those times were becoming fewer and of shorter duration. Katie would hit and bite herself for six hours at a time, stopping only when her strength was completely depleted, but the slightest noise or movement, even the dog walking by, would start the cycle all over again, day after day after day.
In the summer of 1992, we hired tutors to work with Katie on a daily basis, hoping that the consistency might help her get herself together before the school year started. But Katie's self-injury now had a life of its own, and it was taking over hers. She could no longer bring herself to go outside and play on her swings and trampoline that she once cherished. She could make it only as far as the patio, where the urge to bash her head into the brick wall of the house overcame her. Sadly, we sent Katie back to school that September in much the same condition that she left there the previous June.
By October 1992, Katie was hitting her head and face at a rate of 5,500 times per hour. Her wrists and upper arms were festering sores. Katie was refusing to walk at all, having to be carried wherever she went. She was back in diapers, undoing two years of toilet training. Katie was eating about every third day, refusing even treats in between. She had lost six of her 54 pounds and her ribs showed through her skin. Sleep only came to Katie when she was completely exhausted and then only two or three hours a night. A daily chore at our house was to soak Katie's blood-drenched nightgown in bleach.
When giving Katie a shower in the evening, my wife would roll up her pantlegs and stand in the shower with her to prevent her from slamming her head into the tile while I tried to wash her and clean her wounds.
My wife and I watched helplessly as Katie's physical and mental health deteriorated to the point that it endangered her eyesight and even her life. It was like watching our sweet daughter get into a terrible car accident every day.
At the end of October we decided to try the SIBIS. We knew of the SIBIS for about a year, but always thought we would find some less extreme way of dealing with Katie's self-injury. When we made this decision, we were well aware of the ramifications. We knew that reasonable people would disagree with us. We were sure the anti-aversive faction would come out of the woodwork to condemn us.
Katie would get no services from the state of Michigan, as there is a directive prohibiting aid to families who use the SIBIS. Of course, we knew that the school district would not allow it in the classroom, even though their own consultant, Dr Peter Holmes from Eastern Michigan University, later told them that it was the most humane thing they could do. But we had to help Katie, because she had lost the ability to help herself. Her SIB was consuming every waking hour.
The SIBIS trial took place on the last weekend in October 1992 at Western Michigan University psychology department. Dr Patricia Meinhold and some of her graduate students volunteered to conduct this trial.
That three-day weekend changed Katie's life, and ours. Katie immediately responded to the SIBIS. The two-hour drive home from Kalamazoo at the end of the weekend was amazing. Katie smiled, looked around and ate snacks the entire way. We hadn't seen her smile in what seemed like a year. Katie seemed as if a tremendous weight had been lifted from her.
In the next few days, about 99% of the hitting stopped. We later started using the SIBIS for the arm and wrist biting, and that too stopped almost immediately. Katie's face, wrists and arms were healing and she was eating and regaining her lost weight and she was sleeping through the night. My wife and I were overwhelmed. It was so wonderful to have our Katie back. We thought she was gone forever. We can now sleep through the night without hearing the sickening moan Katie used to make as she bit her wrists and arms through the night and the terrible slap, slap, slap that would inevitably follow.
It has now been more than three years since we started using the SIBIS and Katie is injury-free, her hair has grown back and she is healthy and happy, as you can see from the front of this. Katie no longer wears arm restraints, bandages or helmets, and she only wears hats or hoods when the weather demands it, just like the rest of us. But the scars Katie carries from those days are a constant reminder of how horrible and cruel life can be to a little girl.
We aren't here to say Katie's life is perfect now. She still has many serious deficits, both social and cognitive, and the tendencies towards SIB still appear from time to time. Katie has many obstacles ahead of her, but with the freedom from the SIB that the SIBIS provides, she can concentrate on overcoming them, instead of the obstacles overcoming her.
Finally, it's obvious that Bill 19 won't affect Katie or our family. We are here now because there is now, or will be, a Katie in Ontario, and she'll deserve the best quality of life her parents can give her. There is, or will be, Canadian parents who will have to face the decisions we faced. There won't be many. Our family is the only one we know of in Michigan, but there will be one or two, and it would be a shame if that Katie was denied effective treatment by a well-meaning government trying to protect her.
If in the course of these readings you come upon people who refer to themselves as advocates for children or advocates for the disabled who oppose the decisions we've made for our daughter, please ask them if all the so-called non-aversive treatments combined have a success rate of 100% in stopping self-injurious behaviour. When they answer no, please remember Katie's story and think of the beautiful face on the front of this submission.
Mrs Boyd: Thank you very much for coming and for sharing that with us. It takes a lot of energy to do that. I'm curious about the prohibitions within the state of Michigan and in your school district. Do they still pertain? You are still having to use this on a private basis?
Mrs Boyd: One of the suggestions that has been brought to us in the past is that perhaps, given that there are very few people who are shown to be helped by this kind of treatment, the option might be to have a process whereby the kinds of other treatments have all been tried and can be shown, to a court or to a capacity and capacity board, that they have not worked and that then there is that check and balance. Do you think that's a reasonable position for a government to take?
Mr MacKinnon: Yes, it depends on the time frame. Katie didn't have that long. Had the process been, say, a three-year process, plus appeals that the state would do or whatever, Katie didn't have that long.
Mrs Boyd: No, it would have to be a shorter process, but you did now about it for about a year before you tried it, so there would have been a period of time in there for you to look at that as a possibility.
Mrs Boyd: The problem for us is that we have had psychologists appearing in front of us who seem to believe this should be generally available to lots of people. We certainly had one yesterday in London who uses this in his office on a regular basis and seemed to think it was unreasonable for there to be any kind of prohibition against this. I gather you really believe that this should be available as a last resort in cases like yours, rather than generally available for behaviour control.
Mrs MacKinnon: If Katie should inflict, hit her head, bang her head, we have a remote and she wears a little box on her thigh. We say, "No hitting, no head-banging," and we press the buttons and she gets a half a second shock on a 9-volt battery. We don't even know why it works for her, but it stopped the cycle and she even welcomes it. She even hands me her leg set because she doesn't wear it all the time, and wants it on her leg. It prevents her from --
Mr Klees: Okay, we've had presentations from a family whose son benefits from faradaic stimulation. The story is very similar to yours. As you know, the previous law in this province restricted that use and this bill allows that to be used. I'd like to get your thoughts as well, because we have had presentations before this committee from advocates who oppose this and would like the previous law to stay in place and in fact, in their presentations, refer to this as cattle prods. I take personal offence at that terminology. I'd like to get your reaction to those who call themselves advocates for vulnerable people, but choose to use that terminology in this context.
Mr MacKinnon: I think it's very divisive, especially in light of the fact that we have more in common with those people than we have differences with them. We have this one difference with them and Katie is the beneficiary of this one difference and we get called names. We've been called worse than just using a cattle prod. It's a shame it has to come down to that. Of course, we take offence at it, but we've learned to live with it and we probably will have to live with it for a while.
Mrs MacKinnon: It's so rare that a child would develop this extreme behaviour. A lot of these people are passing judgement and they don't know us, they don't know Katie, they don't know what treatments we use, they don't know what doctors we've gone to. How our child suffered. We agonized over this decision, because we knew the ramifications, we knew these people would come after us, but we had to save our daughter's life.
Mr MacKinnon: And we knew that what I think is called ARCH here -- no services from them, we knew that. We knew all of the ramifications. We knew that Katie would not get services, that we wouldn't get respite, that there would be no help from any government agency over there.autism