Saturday, November 24, 2007

Autism and Aversives - Autism Parents' Hard Choices

If your autistic child engages in self injurious, self mutilating, or life threatening behavior would you try to prevent such dangerous behavior or allow it to continue? If you chose to eliminate the behavior how would you do it? if the choice is between drugging your child or using a behavior modification program employing a 2 second "bee sting" type skin shock what choice would you make? If the choice is between the skin shock aversive approach and continual medication what choice would you make? If the choice is between the skin shock aversive approach and persistent use of physical restraint what choice would you make?

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:

Aversives, in the form of a brief, 2-second skin shock to the surface of, typically, the arm or leg, are added to this treatment for only certain extremely difficult-to-treat behaviors that have failed to respond to positive-only treatment in the student’s previous placements as well as at JRC. The procedure feels like a hard pinch and, unlike the heavy and often ineffective psychotropic drugging that this procedure typically replaces, has no negative side effects. Rewards and educational procedures alone are tried for an average of 11 months at JRC before JRC considers the addition of aversives. In addition, the use of aversives has to be pre-approved, on an individual basis, by the child’s school system (through the IEP process), the parent, a physician, a psychiatrist, a human rights committee, a peer review committee and a Massachusetts Probate Court judge. Currently,only a minority of JRC’s school-age students receive skin shock as an aversive and even in these cases its use is very infrequent, less than once per week in the average case.

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.

I subsequently received some feedback from parents who used aversives to help end serious self injurious behavior in their autistic children including testimony of some parents before a committee of the Legislative Assembly of Ontario. I am re posting all of this testimony in its entirety and I ask that anyone reading this comment take the time to consider this testimony carefully and with an open mind.
Susan Handon said...

My name is Sue Handon and my daughter Crystal is a JRC student. She came there 3 years ago because every other school that she attended had failed to help her. She has Smith-Maginis syndrome. When she is maintaining self control she is the sweetest person you could ever meet. But when she is out there emotionally she is a danger to herself and others.
Crystal is deaf in one ear and severely impaired in the other due to self injuries to her ear. She is speech impaired, learning disabled, mentally retarded and emotionally disturbed. She has bitten herself so much until she has dark scar patches on her arms, hands and legs. She boke out windows and tore doors off hinges. The only solution offered me was medication to the tune of 10 different types daily. She became a guniea pig for Drs. Prior to her admittance to JRC she weighed 175 pounds. It was suggested that I start her on insulin because she started showing signs of diabetes.
To date Crystal has lost most of the weight, she is on no meds and doing well. This is because she has finally gotten a true Behavior Modification Plan.
It is not easy as a parent to make the decision to agree to this type of treatent but it was necessary. Though I understand people's reactions to my choice of treatment I don't understand the lack of understanding for us as parents being placed in this position to make such choices.We have all tried many methods but this is the one that is working. None of us would hurt our children. We are just seeking help for them.

Anonymous said...

Dear Facing,

I was an elementary school teacher and my wife a school social worker when our son was born. Although we both had worked with children with challenging behaviors, we were not prepared for those that our son exhibited. "M" has high functioning autism with severe obsessive-compulsive behaviors. Only desperation compelled us, with our extensive background in the mental health/educational field and a deep love for our disabled son, to use a treatment that causes pain, albeit minor, but those medications our son took caused much pain and were not successful. It is difficult for those who do not have a severely disabled child to understand the desperation parents feels when they lose hope. To make a long and painful story short, M has been to several prominent psychiatrists on autism, numerous medications, reward-only programs, counseling, a special education day school and two out of state residential facilities. In fact, one residential facility dumped him into a psychiatric hospital because they could not control him. They had all failed!

Before we consented to have M receive the skin-sting therapy as a supplement to the extensive rewards program at JRC we tried it ourselves. We were skeptical that it would even work given our son’s challenging behaviors. However, within a couple of days of starting the treatment his major behaviors (aggression, property destruction and noncompliance) were drastically reduced. Even though “it doesn’t hurt that much” (his words) it helps him control himself and he receives applications very infrequently. M has continued to grow and progress in the last four years and is now recently received a high school equivalency diploma. This is from a student who made no academic progress in his three years of conventional residential schooling. Specifically JRC was able to get him to school on time, wear his glasses, do homework and have his behaviors under control in class so he could learn.

Ours is just one of many, countless success stories and so we ask - Why would anyone want to take a school like the Judge Rotenberg Educational Center (JRC) and shut it down? Where would the students go? Those other places failed them!

When M’s first residential school failed, the clinical director told us that if his second placement also failed, we should find a place where he would be comfortable (no demands) because that’s what she would do. Don’t we as parents have the right to decide if we want to warehouse our child on medication or give him a chance with a skin shock treatment?

JRC is also heavily regulated by agencies in Massachusetts and has numerous safeguards for the aversive therapy: parental, physician, individual court approval/monitoring and a independent court appointed lawyer to represent the student’s interest; continual videotaping of all residences, vans and the school; a human-rights committee of which my wife and I are members; two-person approval before an application is
administered; close supervision by an experienced psychologist; periodic reviews be done by outside professionals of any students with whom the GED has been employed for two or more years, and termination of aversive therapy as soon as it becomes unnecessary. The parent association also has its own lawyer. As you can see, the parents of the children at the school have not abandoned them. Rather, they have chosen the best possible treatment plans for them. Please note that parents are not compelled by the state to send their children to JRC. If they do have their children attend the school, they do not have to sign for the use of the temporary skin shock treatment. Furthermore, they can withdraw their consent at any time.

We do not see the use of a harmless two-second-skin sting, with no negative side effects, used on the average of once a week, and ended as soon as behavior improves, to be “cruel treatment.” It is a small price to pay to literally save lives, prevent self-mutilation and to give our children a quality of life they would have nowhere else. Having our children heavily medicated with ineffective psychotropic drugs, restrained for long periods of the day, placed in isolation rooms and warehoused “to control unpredictable spontaneous’ dangerous behaviors is the alternative our children face. We view that as cruel treatment!

We can be reached by mail at: Parent Association c/o JRC 240 Turnpike Street
Canton, MA 02021



Anonymous said...

I am the parent of a almost 15-year old boy with PDD, who has been attending JRC for over 2 years. Everywhere I read posts aout JRC, all they seem to focus on is the skin shock. No one is up in arms about the major crisis in this country that has our children being drugged with DANGEROUS psychotropic medications! These drugs have never been tested on children and continue to cause SERIOUS health problems, and even death. How come no one addresses this? I don't see any politicians going up against the current medical establishment who are little more than drug pushers. It makes me sick when I think about how many drugs my son was forced to be on with side effects such as abnormal liver function, high cholesterol, severe weight gain, seizures, hallucinations, suicidal & homicidal thoughts, paranoia, and psychotic episodes.

Most people don't know this but if you refuse to put your child on these drugs they can and will take you child away from you, and charge you with neglect.

Before JRC, my son was attending a school for Emotionally Disturbed children. He spent most of his time in a padded room, due to his frequent aggressive outbursts. He was drugged out of his mind and couldn't learn. The doctors had him on a minimum of 3 psychotropic drugs at a time. The school district had a 30-day outpatient evaluation done on him at a psych hospital where he received no less than 1 shot of Haldol a day. It was their conclusion that he be placed in a long term institutional facility. Essentially lock him up and throw away the key.

To me that was insane. Give up on my 12 year old son? No way! I was fortunate to find out about JRC and get him admitted there. He's been off the drugs for over 2 years now, and has made immense progress. His head is clear and he has caught up academically. His outbursts have decreased in frequency from several a day to once every 1-3 months. He told me he never wants to go back on those drugs.


Ilana Slaff, M.D. said...

I have identical twin brothers with severe life-threatening behaviors extreme and rare even for persons on the autism spectrum. I have been practicing psychiatry over ten years and I specialize in persons on the autism spectrum. I recently completed an autism fellowship. Yet, I have only seen a handful of cases which can be classified as severe as my brothers. My daughter is also autistic. She is five, nonverbal but I am thankful she does not have the behaviors which my brothers exhibited, although I am in tremendous debt paying $90,000 for one year tuition for her school, plus speech, occupational and physical therapy. For her first month of school I had to drive her every morning and start my job at 11 AM, leave at 7:30 PM, get home at 9PM and do the same the next day. Thank goodness my extended family has been supportive. Her school does not employ the use of aversives and she does not need it. I did try to get her into a public school which was appropriate for her, but they only accepted seven children from all of New York City last year and my daughter ended up on the lottery wait list. When I attended the lottery there were many parents in tears. If NYSED (New York State Education Department) truly cared about these children there would be an appropriate placement for each and every child. Public school programs here many times are not providing the services which are in the child's federally mandated Individual Education Plan. New York City public school autism programs are also using methods with no scientific evidence such as the Miller method and the Option method when there are methods with scientific evidence. Using an invalidated method when there are validated methods to treat a condition is unethical. I do not understand how people can take NYSED reports seriously when many of their own public schools are not in order.

Regarding my brothers, one twin has lived at JRC for
almost twenty years. Before arriving there he banged his head so severely he had to have surgery to close it. He would bang his head suddenly, even during the night without a clear reason. He was in a hospital for over five months, and my parents were told his insurance was running out and they would have to flip the bill. He had no education in the hospital because he attacked the teacher. He also became very sick from the medications used to try to control his behavior. He had obesity, drooling, sedation and tardive dyskinesia. At one point he could have died from neuroleptic malignant syndrome from his haldol. The medications did not control his behavior. In the hospital he had one to one at all hours and he still needed repeat suturing for repeated head banging. The board of education requested my parents waive my brother's right to an education. They said there was no place which would take him. My mother found out through her internist about the Judge Rotenberg Center. We got him transferred within a few days of the insurance running out. He was taken off all his medications there although he still has permanent tardive dyskinesia. He is happy there and states he wants to "stay at JRC forever." He enjoys the reward store and going on trips such as the zoo, museums and special olympics. I am calm to put him in the back seat of my car with my small children and take him out. (Prior to arrival at JRC he would attack my mother while driving). He does receive skin shock on average once to twice a month. At times he will actually ask to wear the device because he knows it gives him boundaries. Most of all, head banging is a thing of the past.

I will now discuss my other twin brother. He once did very well. He had full time job for two and a half years and traveled independently. He moved into a group home during this time. One day another worker was teasing him and repeatedly was telling him he had to work until 5 PM when my brother knew that he leaves at 4 PM. This was a fixed routine for him. My brother became so agitated he grabbed the other worker's butcher knife. I understand that my brother had to be fired. Since then, he has gone down hill completely. He started to develop a compulsion regarding fires and tried to place himself and someone else on fire. He has run into traffic. He also was aggressive, tried to punch and choke others for a minor problem, i.e. a staple being out of place on a chair. He was placed on about fifteen different psychotropic medications in various combinations. He developed obesity, sedation, hypotension, tardive dyskinesia and generalized seizures, once on a subway platform during a snowstorm. The medication has not been helping his symptoms. He has been hospitalized since July. His group home understandably is unwilling to take him back and New York does not want to fund Judge Rotenberg Center for him (and he cannot live with his closest relative). After four months in the hospital, they have now suggested the Brooklyn Developmental Center which I will visit next week. I think even the Judge Rotenberg Center positive behavior program may be sufficient for him as there is consistency there. He did well in his day school when he was younger. Unfortunately in New York State the agencies funded to treat persons over the age of 21 do not have direct care staff appropriately trained in the principles of applied behavior analysis and consistency of a behavior plan is a problem in the agencies. My brother never required medication
when he was in his structured and consistent day school program before he was 21 or when he had his job. I feel for some of my patients who have behavior problems and they just get suspended or terminated from their day programs. They are home, some possibly dangerous and overwhelming their caregivers beyond belief.

My parents tried different approaches to my brothers, even took them to a doctor in Europe for a treatment. My grandfather spent about half his life savings to finance the trip. There is no medication which has shown to be 100% effective to control behavior like my brothers have. Positive behavior interventions are not sufficiently effective in all cases to suppress problem behaviors and there is a meta-analysis in 1999 that clearly shows this. As far as other methods proposed such as TEACCH and sensory integration, I think they can be helpful for some symptoms but they have never been shown to sufficiently treat the types of behaviors my brothers' have. In fact a small study on sensory integration resulted in an 11% decrease in the frequency of self-stimulatory behaviors. This does not cut it for a life threatening condition. However, there have been 111 peer reviewed articles on behavioral skin shock. I received the New York Medical College Award for Academic Excellence for my research on medication and behavioral skin shock to control life-threatening behaviors in persons with mental retardation or autism. Medication can sometimes be helpful but results are mild to moderate to decrease frequency of behavior. Behavioral skin shock gets on average an almost 100% decrease in frequency of behavior in subjects. My brother would be dead without this therapy and my other brother is dying.

Imagine if you had an illness requiring surgery to your head and you were told this illness could be otherwise treated with a two second skin shock once or twice a month (which is my brother's average). Imagine if you had to give yourself repeated insilin injections and you were losing your eyesight or having a heart attack (side effects of medications plus more) and someone told you that these illnesses can be prevented and you can live years longer with a two second skin shock once or twice a month? Perhaps you rather have disease or injury. Perhaps not. Whatever you may decide, only my brother's family has the right to make that kind of decision for him.

To have a family member with special needs is stress enough. To be in financial debt is more stress and to have to deal with life threatening behaviors is even more stressful. I find the criticism directed toward the Judge Rotenberg Center to be further stressful. I feel my family is being judged and marginalized after all we have already been through.

From testimony before the Ontario Legislative Assembly Standing Committee on Administration of Justice:

Mr Gregory MacKinnon: Thank you, Mr Chair. Our submission has specifically to deal with subsection 66(12). I'll just start.

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.

We hired a private gymnastic coach, who worked with Katie at least two times a week for three years. This did help Katie develop gross motor skills, coordination and strength.

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.

We had Katie in play therapy and music therapy, with so-called normal peers.

We tried Katie on Ritalin, on the advice of a neuropsychologist who herself was a high-functioning autistic. That trial kept Katie awake and agitated for 24 hours.

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.

My wife and I again thank you for allowing us to address you here today.

The Chair: Thank you, Mr MacKinnon. We have three minutes each caucus.

Mr Duncan: Thank you for your presentation. I don't have any questions.

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?

Mr MacKinnon: The SIBIS is with Katie in school now, after negotiations, and the state still has a directive prohibiting aid to families who use the SIBIS.


Mrs Boyd: Can you tell me on what basis they put that directive in place?

Mr MacKinnon: I don't remember the wording they used, but it's an aversive treatment.

Mrs Boyd: They prohibit aversive treatment.

Mr MacKinnon: Yes, they prohibit it.

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?

Mrs Denise MacKinnon: Within a time frame.

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 MacKinnon: Which we did.

Mr MacKinnon: Right. We knew about the SIBIS for a year, but Katie's self-injury had been going on for two years, so we had ruled out --

Mrs Boyd: Tried everything.

Mr MacKinnon: -- a lot of the methods earlier because they were just standard methods that worked for most kids.

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: Right, and with our daughter, it's a prescription from a doctor. You can't just go to Radio Shack and buy it.

Mrs Boyd: No, no one was ever suggesting that, including the psychologist, believe me.

Mrs MacKinnon: Some people don't realize that it is a prescription.

Mr MacKinnon: It is not a device to be used for hand-flapping or rocking back and forth.

Mrs MacKinnon: Life-threatening behaviours.

Mr MacKinnon: I don't think a parent would allow that. I give parents more credit.

Mr Klees: Thank you very much for your presentation. Perhaps you could, for the benefit of the committee, just give a very brief description of what this procedure does and how it works.

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 MacKinnon: If she's in an agitated state, she'll pick it up off the desk and hand it to us.

Mr Klees: And have you felt this shock yourselves?

Mrs MacKinnon: Yes.

Mr MacKinnon: Oh, certainly, more than she has.

Mr Klees: Could you compare it for us? What would it feel like?

Mrs MacKinnon: Like a light socket.

Mr MacKinnon: It's less than-you know, when every kid puts their finger in a light socket, it's less than that.

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.

Mr Klees: So the prohibiting legislation in Michigan certainly caused your daughter a great deal of pain and agony over a number of years.

Mr MacKinnon: It did and it cost her in time, pain, and it's still costing her in services that she should be eligible for.

Mr Klees: We commend you for your courage.

The Chair: Thank you, Mr and Mrs MacKinnon. Not only is your love for your daughter, Katie, evident, but for the unknown children and parents who are agonizing at this moment of the same ailment.

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