"Dignity. What did it really mean? Was it self-respect, worthiness, and feeling important about yourself
or your accomplishments? And yet, dignity, or loss of it, seemed to make one feel as though the public
or private degradation was somehow deserved. When one person tried to injury another’s dignity,
because of jealousy or anger, he wondered how such a thing could make a person feel good about
being so offensive? "
A quote from "Walk of Fire" a book written by Pamela Hammersly
Our son Danny’s dignity and self worth were stolen from him, his human rights violated, treated worse
than an animal, treated like he was not able to understand what was being said or not able to feel emotional or physical pain, or not able to feel fear, like he was a non-human,and thus, didn’t deserve compassion or to feel happiness. He was abused physically, verbally, emotionally,chemically, unable to speak his mind or to defend himself, feeling cornered and threatened, he started to lash out in self defense. A mistake done by a member of the group home administration brought him back home, deeply traumatized and on the road to recovery if ever that’s possible.
Danny suffered ignominious treatment at the group home since he received Risperdal and the last years were the worse.We regretted for our lifetime the pain we caused him by our decisions. Writing is therapeutic for me and I hope by writing about his painful experience someone would learn something and change how the world looks and treats the adult autistic.
There are specific dates that keeps haunting my memory so I will write about them.
One is Monday, February 11, 2002, an angry caregiver said to me "What were you expecting? ". Indeed, what was I expecting? Caring caregivers had "rescued" Danny from the psychiatric ward where I had taken him when he couldn’t stop banging his head that weekend at home. They were arguing with nurses and doctors, one was expelled and left exasperated.the others continued to negotiate Danny’s freedom.
In that month of February we were happy for Danny, he was already three months off Risperdal for the second time and caring caregivers were pleased with his behaviour but concerned about mysterious bruises. A couple of weeks prior they’d called me to take pictures of bruises on Danny’s body and face, then a week before I was called again this time he had only a black eye, so I took a picture and I thought by Friday he would be alright. In that week I was reminded that I shouldn’t phoned during the week and to wait for the liaison to call me. So Thursday evening, as agreed, his liaison called me to let me know that Danny was doing "fine". Next day when I went to pick him up for his weekend at home I was shocked seeing his face covered in bruises.Both eyes were black and blue and one was swollen shut and bloody. I looked at his liaison who muttered, "he must have done it at night" quickly, another staff corrected him, "Why are you saying that! He has been doing it all week! ". For a moment I thought to call administration for an explanation, but then thinking again coming home he would relax and recover. Once home his brother stayed with him and I went to see their father in the hospital, didn’t get there he phoned me to come back home Danny was banging hard his head non-stop on the coffee table,with those severe injuries we couldn’t let him continue doing it.
At the last parents meeting the new manager had announced that from then on both homes would be closed same weekends, his announcement was received with some mild objections. In the past if I needed advice or help with Danny’s head banging I knew I could call the other house to talk to staff there. This time for support administration gave me a list of phone numbers of places whose people were no familiar with Danny, I objected to it as useless, still I phoned each place and even I phoned some of his caregivers, nobody answered,obviously.
We had opposed the use of Risperdal on Danny not only because it almost killed him (another sad date: June 5,1999) but because it changed Danny, from a fun autistic child, artistic talented and fond of playing video games into a scary monster I came to fear. Danny suffered while he was on and worse when off Risperdal, it caused painful back, neck, head spasms; frozen postures doing slow movements for hours and if interrupted he would aggress and/or bang his head hard. The group home physician who was also Danny’s family doctor wrote on his reports what he thought might have gone wrong and the reasons. For all of us and those caregivers who knew him from before it was apparent that Risperdal was behind his deterioration but not for administration despite knowing Danny for 9 years.
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We were always wondering what brought up this episode of self-injurious behaviour if that was the case. There were insinuations that it wasn’t really self-injurious behaviour or SIB. At that time for me to think that another human being /staff member could hurt Danny on purpose was hard to take. Still the idea of Danny punching his face and eyes to this extreme was disconcerting and distressing. More distressing is that he was doing it all week and not letting us know about it? Administration had no interest in finding out, like that was expected after all Danny wasn’t on any med, to them Danny needed to take Risperdal. They didn’t care to remember that before Risperdal banging his head at the group home was occasional and at home happened only twice. I remember Danny doing it like a wood pecker with an interval of six months in between and that was after almost a couple of years of living at the group home. After being on Risperdal his head banging became chronic almost doing it everyday, sometimes several times a day and even doing it at home. Kept off Risperdal he started to recover,staff members were pleasantly happy to see Danny back to his "normal" self so we were surprised and very upset when the group home administration coerced us to consent to give Risperdal for a second time, he immediately started to bang his head. Unless his SIB was related to mistreatment by a particular staff as other staff insinuated.
So,what other factors were there? A few weeks later talking to parents one mentioned in passing that more than a dozen of PRN drugs went missing in August 2001, confirmed by administration. Then another parent found her meds stolen from her purse. Could be the disappearance of these drugs the explanation for this episode? Their doctor wrote that Danny has a "paradoxical response" to drugs. And, that’s a scientific fact known for decades, that some people react to drugs violently with aggressive behaviour and/or self-harm behaviour. Was administration aware of that fact? They had to, the doctor sent his reports to them too. But another fact was that they could care less to read them, when asked they gave me many excuses why they haven’t done it. On learning of such disappearance I told administration that Danny was not safe with PRNs drugs floating around the group home, kept inside pockets of some irresponsible staff members as administration explained to me that they were allowed to carry drugs "for their own protection".
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The new administration said to me "forget the past" all well for him but not for us. The present was painful reminding of such "past" seeing our trusting child hurting. How can we, as parents, forget decisions we made that almost kill our child? I remember when the group home physician sold Risperdal to us in 1996 as a "wonder drug" that "it will increase Danny’s mental focus, increase his cognitive skills and would need less meds". When I read in the pharmacy book that it was an antipsychotic I confronted him with it reminding him of Danny’s bad experience with previous neuroleptics. At first he said that Risperdal didn’t have any side effects, then he corrected himself saying, "all drugs had side effects but Risperdal had the least". We believed him. On April 1997 he prescribed Risperdal to Danny. It looked like it was working but still he was in large amounts of Tegretol, Valproic acid and Propranolol (found out later on Ativan as PRN). So we reminded him to get him off all those drugs as promised. We wanted to see the "wonder drug" in action. The first sign of trouble came in October 1997 his liaison wrote that Danny wet his bed. By March 1998 he was urinating every 45 minutes.We had a young visitor from overseas and it was the most embarrassing memory for all of us. We made an appointment with the doctor who dismissed it as a minor side effect of Risperdal that probably "it has blocked an extra serotonin receptor but the most important thing was that his "rage behaviour was under control". We were befuddled, he couldn’t be talking about Danny, then it dawned on us those head bangs episodes that staff were talking about and happening only at the group home were perhaps the "rage behaviour" he referred to. The reduction of the other drugs went on followed by serious behavioural changes written in a note to the doctor and to us by his caring liaison. For the moment staff adapted at his incontinence by allowing Danny to urinate anywhere, making light of it laughing embarrassed. Danny was not laughing, he was confused, troubled and embarrassed at this out of his control new situation.
His liaison was getting even more concerned, the side effects were getting worse. That summer of 1998 he talked to us, wanted to adopt Danny, something that his father remembered in his last day, saying, "I should had let that young guy adopt Danny". Danny was home for summer and we noticed the behavioural changes too, at some moments Danny was restless, moving aimlessly, he was walking over the furniture, running in circles, unable to sit or focus on anything, no doing art work, no playing video games, his face was confused, clearly not comfortable in his skin. If he played video games, he’d get "stuck" like in a trance.Shaking his seat when he needed to urinate but unable to move, we were feeding him every hour and 1/2 or he would have a "episode" of nervousness and hyperactivity.
Early fall I caught up with the doctor in the way out of the group home after leaving his son at the group home and expressed our concerns to him, he told me to ask staff to increase/reduce as he had taught them and to follow his own son’s plan. Administration objected to that saying that was not possible to follow that they knew when his son destroyed things was the time to give him a Risperdal and he would calm in half an hour, in Danny’s case there were no warnings by the time he banged his head it was too late to administer Risperdal. Meaning for them it was better to keep Danny on a constant dose of Risperdal....despite the severity of the side effects? So something else was at play here that pique my curiosity, what was going on? Do we have a conflict of views here? I wanted more information so a couple of weeks later I mentioned this conversation to this member of administration who abruptly said, "I don’t recall saying that" I was taken aback.
In October the doctor ordered a reduction of Risperdal but when Danny reacting with severe non-stop head banging staff raised the amount fast. By Christmas 1998, Danny is home lying on the couch cover with a comforter, a very strange behaviour, usually he is busy doing art work or playing video games when suddenly I look at his face, he was perspiring heavily doing some strange movements under the comforter I lifted it and I saw him stiff, all twisted like a "pretzel". No, it’s not possible to forget the past, besides they asked me to do it but like good hypocrites they don’t......
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January 1999, this time Danny had to be off Risperdal. Staff took pictures of his "pretzel " postures,showed them as evidence to administration and finally the doctor ordered the withdrawal. The symptoms of withdrawal were disturbing and scary. We were left angry, distraught, with many questions. His father was left wondering why it took so long to get Danny off that drug, why the doctor didn’t responded faster to Danny’s liaison’s concerns. It was apparent for many that Risperdal was behind the deterioration of his condition but not for administration.To us it was an emergency for them "protocolos" came first. We presented our concerns to administration many times, what we got was a brick wall. We were frustrated at every step more so when we were blocked from presenting Danny’s case to the board of Directors, then came the threats of letting Danny go. In desperation we wrote to the investigative team from the Ministry of Social Services.
We were trying to understand the group home administration attitude, we started to examine every possible factor.We knew the organization was always looking for ways to raise money and parents were asked to pitch in. Parents presented many ideas. One year the doctor presented a "method" of diagnosis and treatment of mental illnesses in the autistic. It would bring financial benefit for the organization and also would save money for the government. It was opposed by a parent because left the organization open for lawsuits as it was coming from a general practitioner.A copy of a letter describing this arrangement was sent home to us in Danny’s home book which I filed under "Doctor’s reports" without reading it. If this was a case of a financial investment to protect, clearly administration overreacted in fear that their investment would collapse. At the end, what that had to do with us? If the doctor’s "method" failed on Danny, he was just one, they shouldn’t got up in arms, there were many parents that approved the doctor’s diagnosis and treatment and according to them their children benefit from it. I talked to parents who confirmed it, why they were so afraid/angry if one lonely one patient didn’t benefit? Apparently Danny was not the only one, thus the investigation.
Something else happened the administration attitude towards the parents changed, now they were a bit disrespectful, a bit sarcastic, condescending and even intimidating. In 2001,a new administration didn’t help matters came, still we were hopeful of improvements.Their negative attitude changed further,at parents meetings they played silly games while being asked how the money was spent. Eventually, parents meetings were ended. PCP’s were implemented dissolving the parents’s power base.
Even though legal aid said that Danny didn’t have any rights because he couldn’t speak , people in the know was explained to us they had all the reasons to be afraid, we could have sued them for breach of trust, breach of fiduciary duty, impinging on Danny’s rights and we could go on and so they decided to go into the offensive which surprised us and made us curious to find out why. They shouldn’t have worried we just wanted Danny as he was before Risperdal.
Then another possible factor. Recently, through Internet I read the interactions of Risperdal’s manufacturers with state agencies caring for the disabled, if that’s a fact it could explain the organization sudden change from rags to riches. A very interesting and compelling evidence way too coincidental in its timing of a drug manufacturer intervention. But it’s not up to us to discuss these possible evidence, it is up to people in power like our government to investigate and improve the care of the most vulnerable among us. It is up to them to change the perception of the adult autistic, to avoid unnecessary drugs in the "treatment" of the "autistic behaviours" that make some of them crazy violent. To provide choices of treatment, choices of environments. If a parent wants their child supported at home, that should be an option, if a parent wants a drug-free environment for their autistic child that also should be an option.
Now, if the parents believe their child benefits from psychiatric treatment, the government has the responsibility to monitor the amount of drugs given and the dosages. If they want psychiatrists, psychologists and behaviour therapists standing by and staff trained in detecting adverse effects that should be an option. I believed psychiatric treatment that mess up the brain of the autistic should be banned as sterilization of the mentally retarded was banned, but if the parents are willing, it should be an option in condition of full disclosure of the adverse effects. The right for choices faded when the Minister of Community and Social Services at the time, Hon.Sandra Pupatello, announced investing millions of taxpayers dollars in a network of psychiatrists with the purpose to seek and find mental illness among the developmental delayed. I don’t know if the new Minister Hon. Madeleine Meilleur changes anything.
Moreover I believe taxpayers money should be invested in monitoring the quality of life of those adult autistic living in residential care. Cameras is a must. Supervisors and tractables places to go another must. Money should be invested in providing a stable environment with consistently stable, cool, calm, collected support workers. The autistic should be matched with a compatible support worker. Staff members should interact with them in a positive supportive way not as their guardians. Another important aspect of their care is instead of spending money in expensive drugs, should be spent in good food/diet. Staff members should be in good physical condition to provide the autistic with proper exercise, staff members should provide the chance to create or share activities in a consistent manner. The government should stop medical discrimination so blatant at the moment. The autistic should be provided with means and skills to comunicate. They need adequate compassionate support trained in communication skills. The adult autistic deserves to be treated humanely. Interacting with well trained workers who won’t waste time looking at their behaviours as psychiatric.
Finally, the adult autistic can continue learning, continuos education/training should be provided. Individual funding should be in their names so that they or their families can select the best environment or select the most compatible worker willing to commit as much time working one to one, select those willing to spend time to get to know their particular way to communicate. The autistic needs a support worker so they can rely on for support and act as role models. The support worker for the autistic should receive a full time salary and benefits. It would be far cheaper than paying for administration, psychiatrists, psychologists and behaviour therapists who do not work directly with autistic. That’s it if the government wants to see improvements. At the end the only thing that my son Danny wanted to do was art work and to have a friend to spend time with him, to share his interests with. A quiet house, a comfy warm bed, good food, clean washroom... simple comforts.
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On March 1999, we had a visitor, an older cousin from overseas. He was sitting on our living room couch besides Danny trying to engage him in conversation while we were cooking in the kitchen, he came to tell us, smiling, that Danny perhaps didn’t like him very much because he had stuck his tongue at him for very long time. We told him that was drug related. He became sad. On seeing Danny shaking and having spasms while sitting besides him, he casually commented that Danny looked like a drug addicted going through a drug withdrawal, Danny’s father agreed, both men who have traveled extensively and had seen everything knew what they were talking about. At the same time we were watching David Suzuki’s show "The Nature of Things" on the medicinal use of marijuana for seizures and Tourette’s tics, it showed a child with seizures calming down after drinking milk and marijuana I thought that herb could help Danny with his spasms if they were seizures or tics. My understanding of the effects of Risperdal in the brain and nervous system were minimal. His cousin also told us how another younger cousin diagnosed with bone cancer had been able to withstand chemotherapy with the help of homeopathic remedies. That was the first time we heard of that word Homeopathy. It was big in Europe. About marijuana we read in the papers that Allan Rock, Minister of Health at the time, was conducting a research on the medicinal uses of marijuana. So we thought perhaps this herb could help Danny. I went to the group home physician and asked him to write to him on our behalf. His assistant phoned to let us know that they couldn’t do that marijuana was still illegal in this country. Shortly after administration phoned to let me know that they would "support us on anything as long as it was legal" . The physician further declined to assist us on reversing the effects of Risperdal by saying that he was not familiar with the use of supplements, vitamins and with homeopathy and naturopathy medicines, we then finished with his services. Even though we didn’t get the doctor’s support, administration supported us and we went looking for a naturopathic doctor. They were expensive, so I asked administration to help us financially with Danny’s money, he told me that there was not much money left on his bank account, we were surprised his caregiver has told us differently. For years we ask them to show us his bank statements of that year, we never got them.
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April of 1999 Danny was finally off Risperdal. Staff asked me if they could give it to Danny as PRN "once in a while to help him through the withdrawal" I say ok, I assumed that it meant a little bit here and there. While in the meantime I was trying to find a Naturopathic doctor, finally one phoned me back acknowledging that Danny’s situation was very complicated and he direct us to the Naturopathic Clinic where a 4th year intern would examine him with the assistance of experienced supervisors. Immediately, I phoned the clinic and made an appointment for the end of June and let administration know. Suddenly administration made an about face, they wanted us to go to another appointment with their doctor. We objected, we didn’t want to we had already made up our minds to try alternative medicine and he couldn’t help us there that we’d asked him, still we were told to go and to "just listen to him" that was a couple of days before the appointment with the clinic. So we went, Danny was not there, as might as well the appointment lasted 3 hours and at the end the doctor just had another antipsychotic for him. We were astonished! How many more? He had been on three typical antipsychotics: Thorazine, Stelazine and Mellaril, with serious side effects, the last one was the "wonder drug" Risperdal, an atypical antipsychotic, that almost killed him on June 5, 1999 and he wanted to prescribe another one: Zyprexa. We would be very irresponsible parents if we allowed it. At that appointment he also explained that the June 5 episode of abnormal movements apparently was the result of MSG or Chinese Food Syndrome and under his breath said that Benadryl would had stopped it. We left wondering how many things we were not told. It didn’t matter if two weeks later we went to the same restaurant, ate the same food and there was no reaction, we have never being concerned about MSG on Chinese food. After that episode we found out that Danny had been receiving "3 or 4 times a day Risperdal 0.25 mg, 3 or 4 a week" we asked his liaison to stop it "just in case".
Danny didn’t come for that appointment but he did for the Naturopath clinic, we were all there family and administration. Danny came with his liaison, shaking, having non-stop spasms, throwing his head violently backwards like having electrical shocks, the hand of his liaison holding his head to prevent him from hitting the wall. His face pained and confused. The treatment begun in August. We were told that they would follow "a treatment for schizophrenia not because he was but because Risperdal made him act as one". This treatment had many unknowns to me and I was very scared. To our surprise not even three weeks of treatment went by when the phone calls returned, the same member of administration would call us with a tired robotic voice telling us that "the treatment wasn’t working" we had just an answer "give it time".
All that year administration gave us a lot of attention, many phone calls in which we were told many things from being "ungrateful to a devoted doctor". We have finished with other doctor’s services and nobody had called us ungrateful or insisted to get back to them. They made insinuations that we wanted to ruin reputations and when I repeated again for the 10 th time that our intentions were just to reverse the effects of Risperdal and get Danny back as he was before, I got a sarcastic laugh. I could see that Danny was of not importance to them, whoever "them" they were because we couldn’t understand the transformation and we wonder for whom they were really working, we were confused by this new agressive, hostile attitude towards us.
Nine years had passed by, we thought they knew us well, we thought they knew Danny well and we thought we knew them. This man wanted Danny in larger amount of Risperdal, he said that staff thought that "there was something wrong with Danny’s head". Was he become blind and deaf? Apparently his memory was also affected. Where were he when Danny was having problems? Did he listen to staff describing the adverse effects? Did he read their own doctor’s reports? Were he listening to staff concerns, did he listen to our concerns? Danny’s father was besides himself, this man to whom he had entrusted Danny in April 1990 was a totally different person. He felt betrayed and felt angry. I even spoke to the executive director twice and it was of no help. Exasperated we told him that we wanted to present Danny’s case to the board, he blocked with a letter. For us it was an emergency for him we haven’t exhausted all "avenues". Then we received the first threat from him that they would "let go of Danny". We cooled down, something was going on the organization that needed to resort to threats to quiet us down. We needed to find out. At that time the Ministry of Social Services was doing an investigation and parents were asked to present their concerns we wrote a letter asking for "the freedom to choose an alternative treatment without prejudice". His father had a heart attack and the phone calls stopped for a while.
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I quit my part time job to investigate what went wrong with the group home doctor’s treatment. How is it that Danny on "meds" didn’t get better but worse. So I read all his papers with a medical dictionary. Reading his papers I found a reference to a diagnosis that he made in 1997, not finding it anywhere I asked administration for it who handed it over to me saying, "I thought you had it all this time". What we read on it made us even angrier. The doctor had diagnosed Danny with several psychiatric disorders. He had deceived us, he has lied to us. He has sold us Risperdal as a "wonder drug" that "would increased his mental focus, his cognitive skills, would need less meds and it had the least side effects". All lies. Throughout all the appointments he NEVER mentioned not once that according to data collected he had found Danny suffering from psychosis and in need of Risperdal. We let know administration of our disappointment, how angry we were, that we wanted those diagnoses erased. At one point, while we were at the annual Christmas party, the doctor raised his voice to say "parents don’t like to hear that their children are psychotic". Another time someone insinuated that we should have known about his theory of psychosis in the autistic. We could never associated psychosis with autism, they can’t speak how they can be diagnosed with psychosis? I went to the University of Toronto Psychiatric department, I went to their library I spoke to young students who direct me to seek answers in the Internet. I started to talk to parents, started to go to the group home to get to know more closely the staff members. To see what kind of quality of care Danny was receiving. The experience was an eye opener.
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The withdrawal symptoms were very scary. He was doing bizarre slow movements like in a trance, one specially terrified us he would twirl his shirt around his neck, we thought he would strangle himself . Another one was while eating to stick the knife or the fork deep inside his throat until gagging. I remember holding my breath trying not to react, my instinct was always to ignore and not to scream "No" or "Don’t" because it could make it worse. So, my tactic was to ignore, redirect, distract, divert, many times worked but hardly for the severe drug-induced frozen postures, stuck doing same action in slow motion for hours, head banging and head butting I would later see. The doctor told us that Cogentin would help him with those slow abnormal movements, but it didn’t, instead increase their speed. So, when staff members asked me if he could have Risperdal as PRN "once in a while to help him through the withdrawal effects" I said ok assuming it would be just that, but they didn’t, it was used far more often prolongating the withdrawal.
On June 5, 1999, we took Danny for a car ride and take out Chinese food to celebrate his birthday, it was his favorite meal and had it regularly all his life without any ill effects. When we were home at around 4:30 pm suddenly Danny started to move repetitively, picking up speed, doing over and over the same movements, crying, perspiring, wetting his pants, holding his chest would say "itchy" , his heart was beating fast on his neck, we thought he was about to have a heart attack. Most upsetting was to see him looking at us standing there not knowing what to do begging us to stop it, whatever it was, we just stand there helpless looking back at him no understanding what was happening. He didn’t want to eat, drink, anything he was going on like possessed. Finally fell asleep at around 1 am, we thought it was all over. Next morning at 8 am I woke him up for his meds and his right arm came out from under the covers moving like a snake and the movements started all over again to finally fading around the same time 4:30 pm. Investigating I was told that he had Risperdal 0.25 mg 3 or 4 times a day 3 or 4 times a week. I asked to immediately stop it just in case. The physician thought it was a reaction to MSG and, under his breath said that Benadryl would have stopped it. Later, we were glad that we didn’t know about Benadryl to give to him in that moment. This over the counter drug has a similar action as Cogentin. If Cogentin had accelerated his slow movements Benadryl would have done the same and Danny for sure would have had a heart attack from an increase of speed in movements.
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From June on we were reassured me that he was totally off Risperdal, however the drug-induced parkinsonism persisted (a.k.a late-onset extra pyramidal side effects). His "frozen" postures worsen. Doctors use many different wording, that adverse effect is also called "Tardive dyskinesia". But the doctor didn’t see it on Danny. Still Danny got "stuck" doing same slow movements and if interrupted he could, unexpectedly, with extraordinary super human strength, head butt and then he would bang his head screaming loudly. As he did to me on Christmas day 1999, from then on I was scared of Danny.
What made very angry because I was never scared of my son, his siblings were never scared of him. Feeling scared of my own son not only made me very angry but strong in my resolution to investigate to find out, why drugs didn’t help Danny but made him worse. Why the organization felt the need to threaten us. Were they afraid of us? In the meantime, whenever Danny came home for the weekends I needed his father to stay home and whenever Danny would get "frozen" I would call him to prevent Danny from banging his head or head butt me.
Risperdal changed Danny’s personality from a fun autistic child, from being a talented artist proud of his work, playing video games with his siblings to some scary monster we could not relate to. I used to take care of him alone, Risperdal made it impossible for me to care for him. It also made it very expensive for the group home to care for him. They had to adapt, renovate the washroom "especially for him" I was told. The experimentation with the drug Risperdal was expensive for us too. He got stuck to the shower taps turning it on and off with superhuman strength for hours until the tap would break. He would flush the toilet 40 times or longer until the handle broke. He developed disgusting bizarre behaviours like drinking water from the toilet bowl. Or, drinking from the tap water for hours. Nothing of that was observed by us at home before Risperdal, did he do all that before at the group home? Staff members who knew Danny said no. Just one said that the first time he saw Danny he was banging his head against the toilet and was asking why he wasn’t on meds. We learned later that drugs caused this bizarre behaviours and they do not need to be just the antipsychotics drugs, could be Benzodiazepines, anticonvulsants, blood pressure drugs, SSRIs like Prozac, and Danny was given everything and anything, it might be that he saw a reaction to Ativan or to Largactil.
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Our mistakes affected Danny’s quality of life, to his last day his father remember them and deeply regretted making them, if he had known better he would have done everything differently. The problem was that these people didn’t show us all the cards, they didn’t tell us their real intentions, they didn’t tell us the real intentions in prescribing those drugs, they didn’t tell us the drugs’s adverse effects, they deceived/ lie to us, drugs’s adverse effects were covered with diagnosis of psychiatric disorders that Danny that didn’t have. So, virtually, we were kept in the dark and Danny suffered as consequence. Because of his suffering,I need to write in full detail what was done to him and to seek justice. His treatment cannot be forgotten because is in the past. If we occluded the past we prevent others from learning, speaking up we prevent them from repeating the same mistake, hiding the past prevent them from improving the present and the future.
Personally I made many mistakes, one I most regret was that on Friday, February 8, 2002. I decided to take him to the emergency room after he couldn’t stop banging his head. Since early on the year 2001, administration wanted Danny committed to a psychiatry ward. And I have done for them, Danny was in a psychiatric ward lying in bed, kept restrained to a bed, given large amounts of Haldol, Benzodiazepines, and Zyprexa, who knows where he could have ended up if it weren’t for the intervention of caring staff members who came to his rescue. As I said since 2001, administration wanted Danny committed into a psychiatric ward, we didn’t know that it was sought of and expected by administration. I find out much later that the home administration has made arrangement with the hospital’s psychiatric department to commit Danny. Their own physician wrote that Danny has a "paradoxical response" to drugs. Later I found out that before this "incident" more than a dozen of PRN drugs had vanished.
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Everybody, administration, parents and staff knew our position on drugs and our relationship with administration got worse after they coerced us into consenting (November 2000) to give more Risperdal to Danny with false allegations and threats of sending Danny home. In 2001 came a new administration, Danny’s father, despite having a second heart attack after seeing Danny hitting himself again while again on Risperdal, was hopeful that "this new chap that looked intelligent" would listen to him. He went well prepared to the meeting armed with videotapes and calmly explained the situation, when the new manager ended the meeting saying that "we will have another meeting" he left the meeting livid, so angry he was that I was sure he was about to have another heart attack in the parking lot. He said, "You can have as many meetings with them and repeat yourself ad nauseam, they are not going to listen". But, I went to more meetings and after some pretty nasty, I was told to never going alone.
I wanted Danny off Risperdal, but then the threats changed from sending Danny home (1999-2000) to send him to the Whitby Mental Health Center (2001) where, they say, doctors there could take Danny off Risperdal. I couldn’t understand why the change in threats (I found out on April 2005). Clearly, administration was very angry with us, but we never suspect that in retribution they would to take it out on Danny.
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They knew discussing drugs with me it was a very sensitive topic to me. Yet, this new staff who became Danny’s liaison around October 2001, tried to talk me into approving the use of drugs on Danny with nonsense arguments which upset me and I lost it. Since then he became very hostile with me but I couldn’t believe that he would take it out on Danny, but he did and administration did nothing to prevent it. Later he told us, at the end of one of many protocols meetings, in front of the new manager who was there with me, that he was an ex jail guard with no experience working with the autistic. He was an ex jail guard with an attitude and was assigned to my son as his liaison after his brother- in- law quit. "Brother- in- laws" ? That was another surprise. Is this now a family bussines?
Some family/friends/staff asked us why we didn’t bring Danny home. First Risperdal changed his good nature personality into a scary monster. I was scared of him since he attacked in December 25, 1999. If his father had been in good health and financially secure we would have brought Danny back home.
Back again to that weekend February 8-10, 2002. It was very scary we couldn’t understand why Danny couldn’t stop banging his head. At the ER lying down in a bed he was calm but the ER doctor afraid that Danny would hurt himself again wanted to inject him with Haldol but he needed me to sign a consent form, crying I signed. An hour later the nurses came with a gurney to take him to the psychiatric ward. They were surprised to see him awake, after all he had received a large amount of Haldol and a Benzodiazepine. Danny was looking at me with a questioning look in his eyes so I explained to him and he went walking in front of us checking back on me for directions (which later surprised his liaison who said that Danny needed two or three staff to take him anywhere).
It was late,so I told him to get ready for bed and he did. Next morning we came with his clean street clothes, his meds and some food and to our distress we saw Danny chemically sedated and mechanically restrained to a bed. I asked what happened, the nurse wasn’t sure but apparently when a doctor came at 3 am to examine him he had punched him or that he awoke and wanted to go home or use the washroom and he got all confused, something, she didn’t know or didn’t want to tell us, and that’s why he was kept "sedated but rousable". I reminded the nurse again to give his anticonvulsants, she assure that they were given. Next day he was still sedated and restrained. So all together, since Friday night, all Saturday and all day Sunday, for over 55 hrs !!!
On Monday February 11, 2002, caring caregivers had to fight their way in, fight with nurses and doctors to get him out, they made a big fuzz until they got Danny out, one got expelled and angrily looked at me and said, "What were you expecting? Indeed, looking back, what was I expecting? I knew that the organization wanted Danny committed in a psychiatric ward but I couldn’t believe that they wanted it so badly.
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Tuesday, February 12, 2002, he had a grand mal seizure. Against caring caregivers objections to let Danny sleep the aftermath of the seizure this hostile liaison had taken him to the emergency room, I was told that when I went looking for him at the group home. So I rushed to the ER and that’s where I found him, Danny ashen face, falling off the chair. One female staff had discomfort all over her face, while the liaison angrily ordered Danny to stay sit. According to him, he was following (Danny’s) doctors orders. Danny would have to wait hours to be seen by a doctor. That was deliberated abuse and I confronted administration about it, who with blank faces, gave me no answers. It made me wonder again for whom these people were really working.
So the nurses had lied to me and didn’t give him his anticonvulsants so I went to speak to the ER psychiatrist to find out why he took him off all his anticonvulsants cold turkey, his answer, "something was making sick" and to make Danny whole he had restrained him, gave him large amounts of Haldol, a Benzodiazepine and Zyprexa.
February 14, Danny had an appointment with his psychiatrist, he got him off the extra benzodiazepine, put him back on Valproic acid and kept him on Zyprexa 5 mg/day "let’s see what it does for him" against my objections. Next morning, even though his father was in large amounts of morphine he asked what the doctor had said, after telling him, his comment was, "That’s stupid".
Since early in that week I had asked his caring caregivers to bring Danny to see his father, they promised me for that Thursday but for some reason they were not able to do it, by Friday it was too late his father passed away.
During this trying time the insensitivity shown by administration was appalling, they knew that Danny’s father was dying in the palliative floor of the same hospital. Trying to care for Danny and for his father became an horrible situation for me, his siblings were working full time, but caring caregivers came to my home to give me support saying "we weren’t here". Apparently, they were not allowed to give me any kind of support in their extra hours.
If they had listened to us, I wouldn’t had any problems caring for Danny. On Zyprexa 5 mg/day Danny’s head banging went out of control, yet, I was told by that hostile liaison and, his doctor was told, that Danny was doing "fine". Believing him we brought Danny on the Easter long weekend, it was a disaster, banged his head non-stop making holes on his bedroom walls, we tried to restrain him but we weren’t strong enough, he would stop and then an hour later went off again it was so bad that we called 911. Firefighters and paramedics came but in front of them he calmed down and say "No, please" to go with them to the hospital (Would I ever learn? ) after that he went to the washroom to drink tap water non- stop until dawn.
The situation was not realistic he kept his siblings awake when they needed to get up early to work. Obviously Danny was not "fine". I couldn’t understand why this man kept on lying. I questioned other caregivers what was going on, why he was allowed to lie, then I heard the words "evil and barbaric" and "wanting to break Danny’s spirit" and, something else: "Yes, we could quit but then more of his "kind" would be hired.....and, then who would be left to console your son? ". I talked to parents, yes, there is a serious problem with that man and they went on to vent on me but they didn’t dare to speak to administration for fear of retribution. I understand that, they are old and sick they couldn’t care for their children at home, so their children are at the mercy of the "kindness" of total strangers. At the parents meetings we were told to that we were lucky to have our children in residential care, we were told many other things that silenced parents and caring caregivers. After that we had to leave Danny in the home. We were preparing the house to be sold, we were painting, fixing walls, packing, but looking for a cheap house that’s when I would take Danny out most of the day until late at night. At the beginning I did it on weekends, but caring caregivers told me the problem were on weekdays when that man and his followers run the house.
And, then came December 2002,that’s another long chapter.
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That question "What were you expecting? " stayed in my memory. Indeed, what? We couldn’t get it. The fact is we weren’t shown all the cards, that’s why we couldn’t get it. We could speculate our failure to "get it" is basically related to how modern medicine have been brain washing us to think that doctors have all the answers, that they would show paternalistic compassion towards the most vulnerable and we expect many times the good doctor to pull out his prescription pad and write the name of a magic pill that would take away all our problems. A pill to make us feel good, to be whole, to be cured and to be "normal".
We were not getting that many times doctors and their "pills" do more harm than good. Most of the time doctors have no time to do a full disclosure of the drugs adverse effects. And many feel that some parents wouldn’t understand anyway and some doctors are not even able to identify them correctly. Some doctors confuse "autistic behaviours" with drug-induced bizarre behaviours, some drugs aggravate autistic behaviours, some drugs creates new even more bizarre ones.
Doctors’s intentions are simple, if the patient can’t speak or don’t behave normally, sedate them. Too expensive/hard to keep? Sedate them. We shall not forget the influence of the makers of drugs on their diagnosis and prescriptions and their need for increased profits by selling more of their products.
Obviously "autism" is a medical condition that modern medicine has no understanding of it. According to the latest information "autism" is NOT a psychiatric disorder. I will not discuss what is it and what could be the causes, nobody knows for sure. There are alternative treatments that work for some.....But, even though there is an agreement that "autism" is not psychogenic in nature and, moreover, that every "autistic" is different. Still doctors have a standard treatment and treat "autism" as such. Doctors agree that there is no "cure for autism" just "meds" to treat some "autistic behaviours" like aggressive behaviour. Experts says that if needed to be given drugs they should be last resort, the smallest dose, for the shortest time, under close supervision. The truth is "supervision" or monitoring does not exist, the rest is up to the group home staff members who some are excellent, but most, usually, have poor training (or, no interest, some abuse their position of power over the autistic). It is also up to the group home officials and their physicians. Those doctors working for group homes paid by the government depend on staff reports.
The fact is that having a diagnosis of "autism" condemned them to be medically discriminated against, they are no worth to waste precious resources on them.
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In truth, other resources are wasted, the wrong and very expensive ones. The most expensive is the conventional psychiatric "treatment" which is approved, endorsed, recommended, sought after by the government. Recently, the Ministry of Social Services announced that it had invested millions of taxpayers dollars in creating a network of psychiatrists whose order is to search and find underlying psychiatric disorders among the developmental delayed that the caregivers are nor even aware of and of course to "treat" them. The program is called "Dual-Diagnosis". Imagine the cost of paying for the services of a specialist like psychiatrists, psychologists, behaviour therapists, the cost of fancy new psychiatric drugs, the cost of treating complications from drugs like drug-induced diabetes....the crisis, the visits to the ER from injuries not only of the autistic but of their caregivers...
Compared with the cost of assigning a well educated support worker, well trained in communication skills, a consistently cool, calm, collected, compatible friend to work with each autistic; moreover to provide for each autistic a particular way to communicate....far cheaper, include benefits, job security, still cheap. The cost of running a drug-free group home where none is afraid to work with an adult autistic who is free of drugs, volunteers would be welcome and would stay.... where diet, exercise, activities of their choices are encouraged....every day education is continued...their potentials developed...
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A parallel campaign is to get rid of the stigma of "mental illness". We were told that there is "Nothing to be ashamed of, mental illness affect us all" or "Look I was treated for depression and now I am fine" or " The earlier the diagnosis, the better the outcome from treatment". If all that was not enough to accept that Danny is a danger to himself and to others as the group home physician in 1997 has diagnosed Danny, besides his autism, with multiple mental illnesses, my own description I made of him as aggressive when he was 7 years old should convinced me. The problem is at that time a Geneva Centre worker advised us to do that that "autism" was not enough for the government to release funds for his education and there was a lot of competition.
How do you find mental illnesses in the autistic? By watching their "behaviour". The problem is that the "autistic" has many "behaviours" that can be misinterpreted as psychiatric. The clue is in that word "interpretation" there is two ways to interpret the "autistic behaviour" as "comunication" or as "psychiatric". Usually the "treatment" sought after focus on the negative "behaviours". For instance in Danny’s case the group home focused on Danny’s head banging and "aggressive behaviours". Ignoring our observation that drugs were behind his head bangs. Despite the fact that drugs could caused and/or aggravated aggressive and self-injurious behaviours on some susceptible autistic like Danny. It didn’t matter that the group home physician wrote that Danny has a "paradoxical response" to drugs due, perhaps, to some problems with the P450 izoenzymes in the liver. Despite observations by caring caregivers that Danny was being "primed for violence" that was provoked into banging his head. Despite my observations that he was pushed and pulled but his doctor told that he was doing the pushing and pulling as the abuse continued relentlessly Danny learned to defend himself and started to lash out blindly. There were other factors that could cause "behaviours" it could be that he wasn’t feeling well, once I saw him rubbing his eyes one staff wanted him to stop, I looked closely he had an eye infection....
We understand that staff members had to prevent injury by physically restraining Danny, but at the same time he was not giving anything to keep him busy, something to do to distract him from self-injurious behaviour. At my request they tried, they bought his favorite video games but the amount of drugs had made him lose interest and caused to get "stuck" and the staff wasn’t encouraging him consistently, either didn’t care or didn’t have the time. It was only a TV, not even that, it was video tapes, one day stuff kept running the same violent movie that I saw played in the morning, played in the afternoon and evening, a movie that Danny saw every time he opened his eyes for a little while. Danny couldn’t move at all, one moment I saw Danny about to scratch his head a nervous staff jumped to restrained him with a "No, Danny".
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Apparently staff members complained of boredom so administration created pastimes for them, provide them with palm pilots and computers so they can register every aggressive movement the autistic did. Once I saw three episodes with a difference of a minute in his file. So staff needed entertainment, instead of engaging their autistic charges in activities, taking them for walks, they would watching them as lab rats. Those taking data with their computer were too busy to do chores like cleaning the washrooms, mopping the urine off the bedroom floors, doing laundry of urinated sheets, oh! I forgot the bed were hardly made with sheets or comforters. Doing some good cooking ( some staff were excellent cooks, when there was food in the fridge ), or whatever boring house chores need to be done in the maintenance of a house was done by dedicated staff members. Selected staff members were busy recording the autistic "psychiatric behaviours" to report to their doctors.
For that the "data" collected on their "behaviours" then it is passed on to the behaviour therapist or the psychologists for "analysis" working in their offices far removed from the scene, yet they are responsible for "interpretation". There is not mention of the factor/s that what caused those "behaviours". Data is made into a colorful graph which is presented to the physician/psychiatrist as "evidence" of the autistic aggressiveness. Data collection is so easy to manipulate by omitting factors that contribute to such negative "behaviours". That way is easy to "persuade" a physician to prescribe a drug/s or to increase it/them.
The fact is anybody can say anything of the non-verbal autistic or do anything to them and get away with murder.
It is very easy to make psychiatric cases of the non-verbal autistic. They can’t defend themselves. As I said, there is money for drugs prescribed from drugs manufacturers and money from the government when the "clients" are presented as "hard to serve or as a very complex case" "with comorbids" "dual-diagnosis" .
Another bendable loophole in human rights was to present Danny to his psychiatrist as a danger to himself and to others and the doctor should commit Danny to a psychiatric ward, which the doctor saw no reason to do it. Not even when approached directly by the home psychologist. After seeing Danny "not functioning" on Zyprexa 7.50mg /day he wanted to reduce it but he was told he could lose his license if by reducing Zyprexa Danny hurts staff members.
What irony! When I have seen over drugged "clients" hurting staff. It is a fact that these people know the negative effects of drugs on the autistic. Drugs can make some autistic crazy violent. On drugs some autistic can and have hurt staff, loved ones (usually the mothers),other house mates, and/or themselves. They know how dangerous these drugs are, drugs can kill the autistic or leave them totally disabled and dependent. They know that on drugs the autistic can destroy property, make holes on the walls, etc. They know drugs can exacerbate the negative features of their "autism". They can develop non stop seizures or status epilepticus; can develop psychotic seizures and the list goes on.
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Another catch 22 statement I heard from some doctors that look like is written in stone and repeated ad nauseam is that "despite adverse effects some patients need to be kept on their pills". Which is outdated, cruelly irresponsible and nonsensical.
The arsenal of "meds" recommended for the "behaviours of the autistic" is simple: tranquilizers and/or stimulants. Danny was given drugs that made him feel and act strange, caused severe physical and emotional pain and could not tell about, which is cruel and over all that he was tormented which is criminal. These drugs caused so severe physical pain that if felt by any normal person could be driven to suicide as seeing in some cases in the newspapers. These drugs suppose to work on a "chemical unbalance" in the brain which has no tests to prove it. Drugs, supposedly they work just in the brain, but unfortunately they affect the whole body sometimes in a very disastrous way.
Doctors opposing to "diagnosis" and "treatment" made on base of "behaviours" without a differential diagnosis observe that some drugs make a susceptible person, normal or autistic,to behave aggressive and to develop self-injurious behaviour; cause or aggravate mood swings, cause or aggravate anxiety, cause or aggravate seizures and the lists goes on. The group home administration knew all that, its physician wrote about it, psychiatrists, psychologists knows about it. It is a 101 course "Drugs and Behaviour". But the average parent do not know about it. Some staff members were aware of it, most could care less or were clueless.
And, then we have the rights of staff members to protect themselves from the aggressive autistic. Administration confirmed this fact: staff members "have the right to carry tranquilizers in their pockets to protect themselves" to administer as they see fit, no permission from administration or from parents were needed. Of course some staff members abuse that permission. PRNs drugs were found missing, parents were accused of stealing them, clearly my son was not safe with drugs floating around.
Where are the rights of the autistic that protect them from excessive use and abuse of drugs? They can’t speak, they have no rights.So if drugs make some autistic crazy violent and my son gets hurt or, if he has an opposite reaction to drugs and ends up hurting himself or staff, whose fault do you think it is? Who is responsible?
If drugs change the personality of an autistic person and hurts loved ones, hurts his housemates/peers and staff members, whose responsibility is to stop given these drugs?
So, when on that February 11, 2002, an angry caregiver said to me: " What were you expecting? " I was shocked and hurt, but indeed, what was I expecting? That was the date that Danny got Zyprexa. The group home wanted him in a psychiatric ward and on large amounts of antipsychotics. They got it! A drug that their own physician wanted for Danny, on that day of June 1999.
