I remember that moment, it was a weekend at home he had started to colour and, suddenly, with pain on his eyes run to the kitchen turned the tap on and run cold water on his fingers, then with concerned eyes looked at his finger wondering what was going on. I thought the crayons accumulated under his nails was causing him pain and tried to clean them with his nail clipper but it was too painful.
Years later researching the drug Risperdal and its adverse effects I read that it numbs or kills peripheral nerves ends. The sensation was described as numbing, or as pins and needles, or as burning or sharp pain. Risperdal affects another bunch of sensitive nerves located on the penis, the effects is called priapism: sudden, painful erections. Danny had them waking him up in the middle of the night and his own way to deal with this problem was to talk to his organ saying: "Don’t do that" or squeezed it down. I observed it but I didn't know what was it and couldn't think what to say or what action to take. It just stayed in my memory. Of course it was seeing as another "oddity" of his condition.
On drugs Danny developed a sort of "dances" while walking that weren't there before, noted by caring staff and were found "funny" by other staff, something to laugh about. It was thought done "purposely" because Danny smiled while "dancing". For the group home administration it was proof of "mental illness".
The mayor abnormal movements caused by Risperdal, as the physician wrote, were "late-onset of extra pyramidal side effects" a.k.a. parkinsonism, akathisia, tardive dyskinesia, etc.
At some point Danny showed concern at losing control of his body as it got worse, down frightening. "Bizarre behaviours" is another adverse effect but I would described them more as blind "bizarre impulses" for instance his tendency to run became unstoppable that was seeing as "his" hyperactivity. His opening and closing of the car door while I was driving was another dangerous Risperdal-induced behaviour that went under his "OCD" and as each autistic is different they all had their own drug-induced "bizarre impulses".
Drug-induced seizures were explained as "The autistic tend to develop seizures in their teens" we could have believe the physician if a staff didn't tell us that Danny was kept sedated from Monday to Thursday in 6mg of Bromazepam 3x/day. Clearly his first grand mal was brought by sudden withdrawal of Bromazepam. Danny was kept sedated to prevent him from pulling the cast on his arm. He had a severe injury on his arm after hitting a windowpane in the group home washroom. We observed similar "behaviour" after giving him Ativan, Tylenol #3 and Benadryl as recommended by the physician. We thought nothing of the last two, their names familiar to us, and suspected the unfamiliar one: Ativan. Eventually we learned that Bromazepam, Lorazepam all drugs that ended on "pam" and Ativan belonged to a family of drugs called Benzodiazepines a.k.a. minor tranquilizers and they can induced seizures not only by sudden withdrawal, they are highly addictive and make some people to act violently. And, that Tylenol # 3 was called Atasol and had codeine in it. There have deaths from the use of Atasol. Benadryl, a cough syrup, a suppressant, its formula close to Cogentin in its use as treatment for extra pyramidal side effects, they are anticholinergics, anti parkinson agents and some people react in a "paradoxical" manner to them like Danny did.
My words to described to the psychiatrist his drug-induced parkinsonism or EPS were "catatonia" "out of it" "getting stuck" "holding frozen postures", for reasons not clear to me staff didn't agree with me so they came up with their own words saying Danny stood there "like lost in thought" "like gathering his thoughts". Getting "stuck" mentally and physically were considered part of "his" OCD nothing to do with Risperdal. The most dangerous part of seeing Danny "stuck" was to interrupt him, he would suddenly and unexpectedly head butt staff or bang his head screaming.
Risperdal continued damaging Danny's brain and central nervous, what is described as "tardive", late onset. He would have "seizing" episodes in which he had no control or even recollection. One episode came about when needing to urinate badly during a car ride with me, I stopped the car on the first country road I could find which still was fairly busy with rush hour traffic. He went behind the car towards the bushes, took his time to pull his pants up and, then, got "out of it" circling the car spinning slowly with the head resting on the car window pane, I knew I shouldn't interrupt but I sensed he was about to head bang so I tried gently with low soft voice to get him inside the car, there was no response. I could do nothing but watching, he proceed to fix his eyes in a point on the back passenger window pane and moving his neck and head stiffly, like a robot, very fast, hit it hard backwards breaking the glass in small pieces. Danny immediately came out of his trance looking at me questioning with wide eyes if he had done that. In the past "questioning" with his eyes after such episodes was negatively interpreted as Danny showing "remorse" for his "destructive behaviour". We argued that such bizarre "behaviour" was never seen before Risperdal but none on administration who suppose to know Danny for 9 years dared to agree with us, doing that, apparently, would be like accepting responsibility and of course held liable to us. The increased on his hyperactivity and lack of control of his impulses were explained as part of his "condition". And, drug-induced inability to move to follow orders as staff demanded was thought "behavioural" and it was described as "non-compliance". His drug-induced negativism "No, please" got the worse of some staff who got angry with Danny. Which prompted a particular staff to write on his "protocols" that the way to deal with his "non-compliance" behaviours was to "be firm" to which his sister objected to because it made his condition a disciplinary issue which it was not the case. That staff was verbally telling staff and even to Danny’s sister that "Showing him who is the boss" "Who is in charge" got Danny going. Yes, anybody would comply if apply enough force, from "being firm" to physical intimidation and to abuse was a very small step.
****** The more Danny was accosted and tormented the more he got stuck on "dances" and routines.****
A caring staff concerned at several Risperdal-induced adverse effects and wrote about them. Here we have to remind the reader that Danny was also given large amounts of Valproic acid (VAP) for "seizures" and as "mood stabilizer". Disorders he didn’t have. Anticonvulsive drugs share similar side effects with an atypical anti psychotic: bizarre behaviours, rages, psychosis, emotional liability, abnormal movements and so forth. So, Danny was given two neurotoxic drugs. At one point Danny was on VPA and Tegretol , another toxic anticonvulsant similar to VPA and staff wrote about its effects on Danny's manner of walking, doctor was unconcerned.
We thought of anti seizure medicine as such, medicine to treat seizures in people, children and adults. However staff wrote that VAP given to Danny as "mood stabilizer" it made him more unstable and they observed Tegretol caused Danny to walk back and forth. On both drugs Danny was found sleepy "not functioning" the same prescribing physician. While I was doing research it took me a long time for me to see and believe what I was seeing that meds for seizures were as bad or worse than the atypical antipsychotic like Risperdal. It was baffling. It took me a long while to accept that these drugs: VAP and Tegretol, were neurotoxic more so to a chemical sensitive autistic like Danny and the unnecessary large amounts given to him were behind of some of his "odd", SIB, aggressive behaviours.
We didn’t know the real purpose of using "behaviour-control drugs". However as time went on we realized that its final goal were to "immobilize", to "stiffen", to induce "parkinsonism" on the disabled person to make him unable of making demands on staff, moreover these drugs make them mute. Tegretol, for instance, took away Danny’s little speech. Risperdal, on withdrawal or on PRN, induced such a severe episode of constant movement so intense and lasted for so long we were sure that he would drop dead of a heart attack. His need to move in the most erratic manner, doing circles or spinning was seen as "his" own doing like "evasive behaviour". His drug-induced changes in "moods" as bipolar. But without a doubt the most scary drug-induced behaviours were aggression and banging his head or SIB also described as "rages".
Risperdal was stopped after causing severe "late-onset of extra pyramidal side effect". The doctor ordered done in 3 weeks time. Cogentin was added to "care" of his slow movements but instead it accelerated them.
After the episode of constant movement that we thought he was about to die of a heart attack, the posturing followed by head bangs increased. We were fearful for Danny but I was never afraid of him, that changed on Christmas Day 1999 several months after Risperdal was stopped, if it really was stopped. That day Danny "froze" after taking a shower, there he was stark naked "stuck" turning a doorknob for hours. I fed him there, music was on, I sang to him, promised MacD, KFC or coke, nothing! After 5 hours thinking if I used authority voice I would shock him out of of this trance I told him to go back to his room...suddenly he turned towards me with an ugly face trying to grab my arms to head butt me. I escaped twirling my arms and running to the basement, he went on to bang his head on the kitchen countertop. Since then I was scared and never wanted to be alone with him and his father had to intervene if I saw him getting frozen.
The only other episode in which he blindly attacked me was after he was given Thorazine for a very short time. He was 11 and in that day February 1986 we had had a very long day, we had an appointment at the Hospital for Sick Children, I forgot what for, I do remember that it took hours to see the doctor. I kept him busy with his math and spelling and promises of a car ride and goodies after picking up his siblings from school and he had been very patient. But, then at the very end, catastrophe! The car broke down in the way out of the store leaving the parking lot. I thought no problem we were very close home, we'd walk. But Danny couldn’t leave the car no matter how much I explained and I talked, finally I tried to pull him out and when he came out, he angrily wanted to run without looking, we were by busy rush-hour Yonge Street so I grabbed him and he fought me very hard. Across the street two young policemen saw us struggling and came with their cruiser, with the help of the police we got him inside their car where he, still fighting, punched me breaking my glasses but once the car moved he came to himself, all smiles. He went in the house, sat in the couch happily with his "goodies", still thinking that it was "behavioural" I punished him by taking them away, Danny looked at me with wide eyes in surprise wondering if I had gone crazy. It was clear that he didn’t remember his "tantrum". Later corroborated by some staff that he was not aware during those "episodes".
Many years later I learned that all these drugs: minor and major tranquilizers, also called Benzodiazepines and Neuroleptics, typical and new atypical anti psychotics, anticonvulsants, antihypertensives, "sleeping pills", painkillers like Atasol or Tylenol #3 with codeine are behind these 'out of it" episodes, SIB and aggression. Among many other names it's also called "paradoxical reaction". It could happens to anybody, normal people, usually children, the developmental delayed, the elderly and the elderly with dementia. What make them susceptible to have a "paradoxical reaction"? There are way too many explanations. In my son's case the group home physician blame the P450 izoenzymes in the liver.
******** One staff reminded me of the Thorazine-induced "incident" as proof of Danny's "innate" aggressiveness. I guess he never read the group home physician writing about "paradoxical response" to drugs. I kept on repeating to administration that I was never scared of Danny before Risperdal. Danny and I we had an understanding and we loved and trusted each other very much. Danny would have never tried to hurt me consciously but under the influence of these drugs yes he did blindly, not aware. The Thorazine-induced "attack" was not the same as Risperdal-induced attack, the latter was far scarier. Danny was a child then and in 1999 he was a young man, slender but stronger and taller than me, so I became scared of him. Very coincidental, after several of his group home mates were diagnosed as "psychotics" and given Risperdal, mothers were saying one after another "you know my son is psychotic?" and "I am scared of my son".
A coincidence! ******** Or, ultimate goal?
Now I can say with total certainty that the "routine" use of drugs were behind all the "crisis" my son went through. At home before Thorazine we just had to watch Danny, he was a busy boy, had a selection of electronic gizmos to play with. After Thorazine his autistic behaviour became unexpected and erratic, urinating on his bedroom floor, had bizarre impulses like climbing on a pile of desks and trying to throw a chair through a window, the screams of teacher and co students saying "No","No Danny", "Don’t Danny" made matters worse, in that state you need to remain calm and to tell him what to do but his teacher insisted that he needed to learn the meaning of "No" saying it angrily and in a scream. Got to the point that I decided to follow the advice of our Geneva Center worker and get him into a "Treatment Centre" which at the end I was told it wasn't but was a regular "school". Well, apparently Danny liked this "school" for a little while then problems came up with Danny not able or didn’t want to get ready to go to school, a way to tell us that something upsetting happened to him? During our car rides if we went too close to that 'school' Danny would say, "No, please". Was a combination of the effects of Thorazine and inadequate support? Very possible. School people were telling me something was going on in there, he didn’t want to go to that school and once inside the school he didn’t want to go to the washroom. More disconcerting twice he passed blood in his urine...I went there hoping to "see" something, the only thing I observed was anger, angry teachers... angry at my presence? Danny was a quick learner and loved to be challenged in math but apparently at this "school" he was "kept there" and giving the same math sheet over and over "to keep him busy". No wonder Danny was feeling unwelcome there.
***********One observation, I noticed that the "ideal" disabled is the one that does not make any demands and sits quietly in a corner completely invisible *************
Danny was admitted to the group home on April 1990, by November we were shown a tape Danny head butting his liaison, in that tape Danny looked dazed, so we suspected drugs, but we dismissed that idea, besides they wanted us to to go to our doctor to get a prescription for a tranquilizer. Danny first episode of banging his head happened at the group home in February followed by an episode in which he received a severe cut on his arm from hitting a window pane in the group home washroom. We were left wondering, Danny never gave us this trouble. One day his liaison wrote that Danny on Ativan was acting, talking like "normal" I decided to see it at home for myself. So on Saturday morning I gave Danny Ativan, Tylenol 3 and Benadryl as doctor suggested and sent him to a "program", the director called me asking me what did I give to Danny because he looked "doped up". I was left speechless I wasn’t expecting that! Later that night around 1 am Danny wanted to go to the washroom but instead of using the toilet he tried to bang his head against the window so, timidly, we suggested to administration that Ativan could be behind this sudden banging of his head or head butting. Of course there was no major response.
After so many years of observing and reading I came to the conclusion that drugs did cause or aggravate aggressive and self-injurious behaviour (SIB) on some of the autistic.
********That some drugs make some people violent is knowledge found on 101 books of medicine and if it could happen to a "normal" person chances are higher for someone as fragile, or "chemically sensitive" as an autistic.*******
I decided to get to know the home where Danny was living, I got to know the staff, the other adult autistics living there, the parents and even some people in administration. I had to understand what was going on. I was appalled at what I saw, Danny didn’t have a proper made bed or a comfortable one to sleep on, no pillow where to rest his head. The quality of care was uneven as the culinary skills of staff, Danny survived on peanut butter/ nutella/ jam sandwiches. Not to mention the cleanliness of the washrooms. No wonder the autistics had all kind of gastrointestinal problems. Danny had so much trouble settling in or having a good rest, the group home rely on tranquilizers to get Danny to accept these appalling conditions.
********By 2001 the conditions got worse****** 
I remember one day I found staff talking excitedly then I saw yellow leather gloves every where. Staff told me that administration had provided staff with those gloves to protect their hands from another autistic young man, we will call him "Tim". Tim came late in 1999 and according to some staff was "severely psychotic". In 2002 Tim was given a new drug or increased the dosages of his drugs and has taken to scratch hands but the episodes were so suddenly that many times there were no time for staff to put the gloves on. So as I watched I saw staff hurt by Tim. I saw a new staff (a young female) crying while another staff cared for the deep scratches in her hands she got from Tim. Staff was talking being suddenly grabbed by the head, suffering scratches. Suddenly, with no precedents, being pulled down on the ground by the hair, one of those incidents I happened to be present and I intervened, staff came running, told us to leave the kitchen but at the last minute I looked back to see Tim on the floor hands up as hooks and the female staff kicking him, I don’t know if she made contact.
At another time we were sitting in the living room talking when Tim came in walking around with eyes half closed then sat down, I thought he was going to sleep, for some reason I stood up and suddenly he grabbed my head so fast, my glasses fell off, I was left in shock I didn’t see it coming, there was no indication, no clue of that about to happen, I thought that was it, but caring caregivers said it was not and springing into action they gently laid him down on the couch he was having a seizure. I am sure it was a drug-induced psychotic seizure, his face went gray, his eyes up flickering, his hands stiff like hooks, finger nails digging into the hands of a caring staff who was holding his hands down, as I was explained later to prevent him from hurting himself. After it was over he was given another tranquilizer, this time a even more powerful that he had as PRN and fell asleep, to all of us present there it was sheer senseless! Staff was saying that he was on a "cocktail of death".
*************In base of my observations I had concluded that drugs used as "behaviour-control drugs" or as chemical restraints, cause some autistics to hurt themselves, hurt caregivers, hurt family members, not to mention the adverse effects of long-term use of these powerful neurotoxic drugs*********************
Risperdal made it impossible for Danny to move, sometimes couldn’t get out from the car for hours or get up from his bed and when he finally moved he would bang his head, where staff would forcefully sat him on the ground restrained him physically. The first time I saw him physically restrained I was shocked and I expressed my concerns to administration who sarcastically scoff at my suggestion for a more gently restraint. I explained this physical restrain looked to me more like punishment for something that was beyond his control, to me this "new behaviour" was induced by Risperdal. Still staff dealt differently with this "new" Danny, some were very compassionate, they sang to him, others sang and count, others make deals with him and gave him time alone to proceed. I approved of this gentle treatment but then came along this ex-jail guard with attitude announcing that more drugs and "to be firm" was all Danny needed. He was speaking openly that Danny needed "to be show who is in charge". Seeing how easy was to physically intimidate Danny into moving/"complying" some new staff used and abused him. New staff did as taught. Now when Danny was in large amounts of Zyprexa, he just couldn’t move, he was "stiff" I remember seeing Danny being forced to move, two staff carrying him by the arms, Danny screaming, urinating and/or defecating on his shorts in the way to the washroom. His head banging intensified so much that his family doctor "demanded" that the group home make Danny wear a helmet and he called me to make me understand his "demand" and to take him seriously. All the while I kept asking to lower the dose of Zyprexa. Even his psychiatrist wanted to lower his Zyprexa because he was "no-functioning" but administration was saying that any reduction should be done in a psychiatric ward. Many times I saw him sitting alone in front of his breakfast for hours twirling stiffly his fork, flies in and out his helmet, other autistics stealing his food and Danny getting upset crying "no, please". These were horrible times, inexplicable in its cruelty.
Danny was deprived of everything that could make his disability bearable, no love, no food, not a good night sleep, no dignity, no activities of his own choice. He was constantly terrified and made feel as worthless trash. Caring caregivers did their best to protect Danny without losing their jobs. After seeing Danny sleeping on a cold vinyl mattress 6 inches off the a floor constantly flooded with urine because of his drug-induced incontinence I asked to replaced his "broken" original bed, custom-made by his father, with a similar one of same quality, given a proper mattress, pillow and bedding as the other autistics in the group home had. Danny was not a destitute and we were not living in Dickens’ era. I was told that Danny will get a better mattress after he "save" his money, there was no other way. After 8 months the new mattress arrived and one morning I saw Danny lying on a pool of his own urine because the mattress was waterproof. Right away I bought sheets and waterproof mattress cover. Next time I was there they were gone.
I argued drug-induced incontinence is preventable, just stop giving Danny tranquilizers and stop terrifying him, but that was no the way seeing by administration tranquilizers were needed to stop Danny from banging his head, it didn’t matter if their own charts showed a decrease when Zyprexa was lowered or while he was off Risperdal. It was upsetting to see Danny dealing with incontinence, clearly it was humiliating. I saw him wetting his pants or urinating every 45 minutes, defecating on his pants. Staff relating how Danny wet his pants while sitting on his chair. Staff telling me that Danny was scared of that particular staff wetting his pants just seeing passing by so scared was of him. I saw Danny crying when in the way back from a doctor’s appointment the man asked him what he wanted to eat, crying said "McDonald".
While Danny was off Risperdal he moved easily and incontinence faded. So, when administration demanded the doctor to put Danny again on Risperdal we were astonished. Even though the doctor agreed on a very low dose of Risperdal Danny started all over again unable to move, urinating in our cars, not to mention head banging and something new: punching himself. I was thinking incontinence just happens to Danny so I asked staff if the other autistics were incontinent they did not answer but when I was a passenger in the group home vehicles in the way to doctor’s appointments and not matter how much they cleaned the van stank worse than our car. Then I saw others with wet pants, so Danny was not the only one. Let me point out that before the introduction of Risperdal the home vehicles were fairly clean and our cars were in perfect shape.
It just leaves you shaking your head..... how could these people stand it?
************************ 
The last months at the group home Danny was watched over every second and if he tried to scratch his head a staff would jump saying "No, Danny". By now Danny was lashing out, hurting even his favourite caregiver. A week before coming home a caring staff told me that " I don’t feel safe caring for your son, he is being primed for violence". He was off Zyprexa and by what caring staff reported to me Danny was being provoked verbally, not allowed to eat or sleep and sometimes woken up suddenly by a drunk staff. No wonder he came home weighing 129 pounds, skin and bones.
Before Danny came home for good he was getting more and more nervous, how long was he going to tolerate being abused? I was wondering how could I bring him home? I was terrified watching his aggressive behaviour. Will we manage? While I was pondering how to adapt the house and prepare his siblings to Danny home coming, he learned to defend himself, he had the fastest karate moves I had ever seen, even an amateur boxer run scared of him. At the group home staff was allowed to watch boxing, violent movies, so ok, did Danny learn from them? But his new learned self-defence started with self-injurious behaviour and staff crowded him to physically restrain him, so if he saw them slowly coming up to him he would get even more nervous, screamed and would try to punch himself or karate punch/head butt in self defence. I learned that twice had hurt his favourite caregiver. That couldn’t continue. Victoria day, after a long time, I brought him home, he was so happy, I was telling him, "Danny, you’re staying home for good" but his caring caregiver phoned she was back and to take him back, so I did. Danny never trust me completely from then on.
But, next weekend, suddenly the opportunity to bring him home presented itself, his caregiver had decided to sent him to a campsite for a "vacation" but next day a member of administration called me at home that Danny was in such state that they were afraid that he would kill himself or kill staff and of course they wanted to take him to a psychiatric ward but I said, "No, he comes home". So, Danny was hand over to me by that member of administration and scared as I was I just run with Danny. At home Danny was a nervous wreck, checking every door to see that they were locked, sometimes getting up at night to check every room over and over. He was so nervous he couldn’t eat, if I got too close he would hyperventilate ready to attack anybody that got too close to him. Episodes of frozen postures and head bangs came and went, broken walls, broken window panes, hospitalizations, he was evaluated by two specialists found autistic, nothing else.
********** That’s the way the home administration wanted to present Danny as a danger to himself and to others, to convince other doctors that he was a very dangerous individual. That’s why I saw doctors running scared of Danny. The main purpose for the home was to justify the excessive use of tranquilizers and their demands to get him admitted into a psychiatric ward. Now, several years later in my care, drug-free, he is recovering from the abuse slowly ***********
Summarizing, drug-induced behaviours were reported to the home physician by staff and he explained them away as part of his condition, "idiosyncratic" was the word he used. It is true that the autistic has some "behaviours" that can be misinterpreted as psychiatric this fact makes the non-verbal autistic "ideal" for psychiatric "treatment/experiment" but in the observation of the autistic behaviour another factor is not considered and is the interaction with people.
So from the outset everything plays against the non-verbal autistic:
1.- They are considered "mental" even if the condition is described as "neurologic" is treated as psychiatric, no difference.
2.- The obvious, they can’t speak, so how the non-verbal autistic can tell the doctors how drugs are affecting them? They have only their "behaviours" so in distress their behaviours increased, get more nervous if mistreated by staff but...
3.- Their distressful behaviours, drug-induced or staff related (mistreatment or inadequate support) are interpreted as an increase of his "idiosyncratic behaviours" or as a consequence of an underlying mental disorder like "psychosis" "bipolar" "anxiety" etc, etc. drugs are increased and the autistic gets in the merry-go-around of drugs.
4.- They are so easy to get them addicted/dependent on drugs
5.- Another obvious: they cannot complain and
6.- they never get better, a bonus for the drug manufacturers. They go from "crisis" to "crisis" of violent episodes of aggression or SIB.....and at every increase of dosage or adding of a new drug, they just sleep 18 to 20 hrs a day becoming the "best" "ideal" disabled, quiet, invisible....
7.- At the end they gain weight, become diabetics or, totally "stiff" dying young from "living" in a "cocktail of death".
**********************
Parents, I never understood the attitude of some parents, were they intimidated into silence? Were trusting individuals? Or, they give up on their children. I was told, yes, they were afraid of retribution, afraid that staff would take it off on their children, some even believe that the group home in all its power was entitled to make decisions regarding the well being of their children as it saw fit. At one point parents were united on the purpose to work together to get the best for our children, all of the sudden that ended. "Divide and conquer" worked. A total mystery to me, they looked intelligent and educated, I got excellent advice from some of them and still. Conveniently everyone involved close their eyes to the excessive use of psychiatric drugs on the autistic until some of their children got hurt, then they negotiated ,with lawyers involved, a better place for them. Excessive use of drugs on the autistic is without doubt a bonanza for the drugs manufacturer and ultimately for doctors and agencies who would receive lots of money through them and government’s sources because drugs make their already "complex cases" even more "complex".
Simple equation: more complex = more money.
We are talking about a "condition" that has no treatment, doctors "treat" the "behaviours" and so the person born with it or acquired as a toddler does not improve. Man-made drugs, synthetic chemicals foreign to the body take away instead of nurturing. Make some autistic crazy violent and other grossly obese to end as diabetics.
********************** 
As I was saying, one of the most humiliating adverse effects brought on my son by the use of drugs was urinary incontinence, as time went by also became fecal incontinence. As a toddler I had a hard time potty-trained him, but when I did it was a major triumph. Adventure Place teachers played a great role on it. He needed to urinate every 2 hours and he was a "regular" before his everyday shower.When he started to urinate on his bedroom floor after Thorazine, it was assume it was a "behaviour" by his Geneva Center worker who advised us to use an "aversive behaviour modification" program that after a year we gave it up and, I was told its "failure" would be blame on me, as his mother, for "not following the program".
His incontinence came back started after being 7 months on Risperdal 1.50 mg/day his liaison wrote that "something curious happened Danny wet his bed". It went worse, after almost 10 months he needed to urinate every 45 minutes, which was needless to say disturbing to Danny. I remember while in car outings with him and still able to convey his needs he would verbalized "go bathroom" rocking side to side frantically, getting louder, with every second that passed, looking desperate for a washroom or wanting the car to stop so he could void on the side roads. He didn’t want to wet his pants that would be very embarrassing for him, that much pride he still had left on him. He also got to know that gas stations had washrooms so if we stop at one he would run towards it while I run to get the key. Commenting over his incontinence some caregivers laughed embarrassed, but that was no joke for Danny. As a compromise caregivers thought a good idea for Danny to urinate on country roads which was perceived by some people as a "pervert exposing". After 9/11 stopping to urinate at country rods became even harder, people saw him, took my plate number and next I knew police was at my door. People see autism in children but do not recognize it on adults. The general assumption is that the autistic child "disappeared" as adult safely kept away in a institution or group home and on "meds". People, including doctors, are ignorant of how drugs affect the autistic.
****************** 
Responsible caregivers and more about "meds".
One of Danny’s liaisons was so concerned about the detrimental effects of Risperdal on him that he talked to us and then wrote a letter to the doctor. For his caring independent initiative he left the group home because "his father got sick". A pattern I noticed when caring staff stood for Danny or simple cared for his well being, they quit or were fired. According to administration it was wrong for staff to have, the exact words were, an "emotional attachment" to their autistic charges. Administration criticized as "too emotional" the interference of some caring caregivers of the treatment that Danny was receiving. While the bully liaison who said that "he worked for...and didn’t had to be friends with Danny" was considered "professional". I was shown a tape in which 4 staff would seeing waking up Danny, the psychologist saw "consistency" in their approach while I saw cold, uncaring, threatening, angry, institutionalized care and even saw one pressed her knee on his side to get Danny moving.
On the use of drugs, I was told several times, that Danny was given Ativan about 6 or 8 times in all those years, but "he did receive therapeutic levels of Atasol" which was news to me, no doctor wrote a prescription for Atasol as PRN for Danny. I never heard of Atasol, looking it up I find out that Atasol is Tylenol 3 with codeine and caffeine !!!! I was left wondering why the need to switch Ativan for Atasol, both are as bad. Again, later on, I was presented with a list of drugs given to Danny in which is mentioned Atasol. Given in large amounts if that was the "therapeutic" levels approved by the doctor or manufacturer, it could be harmful for Danny. It is not mentioned the strength of the codeine in the particular Atasol. But as we read the doctors’s reports that was not totally true, Ativan was his PRN from the start and staff was allowed to take Ativan in their pockets while in outings with Danny. As they were unsupervised there was a strong possibility that some staff abused that permission. So a protocol on the administration of Ativan was done to prevent its abuse. But staff was still left unsupervised in possession of drugs no prescribed by Danny’s doctor and confirmed with impromptu information by staff telling me, "If Danny can’t sleep Tylenol 3 knocks him out".
Reading the group home physician reports we notice how he systematically covered up the drugs’s adverse effects by diagnosing psychiatric disorders in Danny, conditions that he didn’t have, saying anything, everything but to avoid blaming the "meds" or the lack of adequate support. Nobody contemplated the possibility that life in a group home was not for Danny. Moreover "the structured environment" that a group home could provide is a myth. The care is uneven as its best and its reliance on drugs endanger not only Danny’s life, staff but of his loved ones.
******************** We can conclude the excessive reliance on psychiatric drugs in the care of the autistic endanger not only the life of the autistic but of all involved directly on his care ******************* 
Interaction with front line workers. Firing staff, as I started to notice that any staff who dared to talk to me or suggest that the changes on Danny’s mood/behaviour were drug- related was promptly removed. In the past staff commented how well Danny got along with some of them while ignored the rest. I would say that’s typical behaviours of anybody, why Danny couldn’t have favorites, why he couldn’t choose his friends?
In general, the "treatment" of the autistic is an outrage, is an outright abuse of their basic human rights. I found out while seeking legal advise I talk to a legal aid lawyer who asked me if he could talk, I said no, "if he can’t speak, he has no rights" was his answer, thus the autistic are not human enough to be entitled to the protection under human rights law. There is a misconception that because the autistic can’t speak has no feelings, we found differently as others did: "Behaviour is communication" for the autistic, but those same "behaviours" can be read any different way. Also, for the average person, those behaviours seen as harmless in a child are scary and dangerous in the adult. So, it’s easy to read distressful behaviour in the autistic as psychiatric when they are calling for help.
We found that nobody care for the adult autistic, the home physician used to comment that doctors want quick money from easy to care patients, they don’t want to waste time and resources on the autistic, and he was right, of course, because the mentality out there is that autism was and still is a "psychiatric" disorder even if is defined as "neurological" consequent treated as "psychiatric". "There is no difference in treatment" a doctor told me looking directly into my eyes.
No wonder "autism" in their medical texts books is barely mentioned, seeing as a "mysterious" condition many saw the opportunity to make money off autism and off "desperate parents".
"Paradoxical Response" to drugs existed in medical books. Why the group home didn’t want to accept this fact on Danny? Its own physician wrote 3 times "paradoxical response" in his reports. We wonder why no doctor could say "do not give these drugs to Danny, he has a paradoxical response".
Danny’s very first experience with drugs was in a plane trip from Atlanta back to Toronto. He was a bit restless and so the hostess offered Dramamine, I remember observing him closely, he quieted down for a minute, even closed his eyes for a few seconds and then went on to become even more restless, louder vocal noises and kicking the seat in front of him upsetting the passenger sitting there. If we have known about the term "paradoxical response" in relation to drugs that sedate or stimulate and known their meaning, we would have understood and prevent further use of these type of drugs on Danny, but we didn’t know and we were left confused, wondering....and I believe that’s the state that some doctors wants us to be so they can take advantage of confused parents so we fell easily into their web of lies and deception.
********************
Now, if in 1980s the use of the computer and Internet was widely spread like is now, it could be a bit tricky but still desperate people falls to their deceptive manners, now more than ever with drug manufacturers marketing advertising drugs to treat many disorders/diseases, made up or real. If one listen carefully to the adverse effects that are said at warp speed you wonder if they are worth it, the adverse effects are worse than the "disease" supposed to cure. In 1999 when I learned how to use the computer and research online I was cautioned by administration about to be careful going online that a lot of trash and misinformation were written there, like I was a child unable to distinguish trash for veritable scientific studies and the irony was their own physician was inviting us, parents, to visit his website and shortly after the group home launched their own.
Internet was an amazing source of information. As we got educated, our anger grew, we felt taken by these so called "experts" allowing our innocent child to be a victim of their irresponsible, disturbing, cruel, criminal "behaviour" uncaring ignorant greedy approach to autism on Danny. Their words in their defense is "mainline medicine" and "professional standards of care"
We were left shaken at seeing their naked bodies, seeing their soulless angry spirits.....we wonder how they can sleep at night, how they can live with themselves, how they can go to church to take the Host or confess.....I remember listening the priests preaching from their pulpit, reading Jesus’s words about what happened to those that hurt children...
On reflection, I must have used words like "to calm him down" in describing Danny’s "behaviours" as I was ignorant of its psychiatric connotations. Later, I remember the efforts of psychologists/behaviour therapists, staff, trying to put words in my mouth saying, " Danny needed to calm down" meaning he was "agitated" instead of our words "to slow him down" referring to his tendency to run to release excess energy from his hyperactivity.
All our efforts were to seek their understanding, not realizing that the group home administration and staff were doing all sort of dances around us to sound like they agree with us by repeating our words because agreeing with us on the negative effects of the drugs on Danny was tantamount to admit culpability and that was not allowed.
