Danny gets a 2nd. psychological assessment: "ASSESSMENT GIVING AND RECOMMENDATIONS" 1986

This is an  exact reproduction of the psychological report. The psychologist writes :

"Mr. & Mrs. M. came for our assessment giving interview today, October 15, 1986.

I began by sharing with the (parents) our findings on Daniel this year and by comparing his performance on the tests last year. Daniel showed considerable improvement in his intellectual functioning this year. He received a mental age score of 6 years, 8 months which increased his IQ from 51 last year to 54 this year. Comparable gains Daniel also made on the Peabody picture Vocabulary Test, a test which purports to evaluate receptive language ability. Generally, Daniel showed slight but steady improvement on all other instruments that he was tested with. He clearly appeared to be more alert this year and generally to be more aware of his environment.

On the basis of parental responses related to the Alpern and Boll Developmental Profile, Daniel also showed gains in his physical development, in his academic skills and in his communication ability (more detailed data on this  and previous tests are included in the psychological report).

We subsequently discussed some of the problems that Daniel appears to present at home and particularly at school. Daniel apparently would bolt from the house and climb on the roof of adjacent houses. This is a cause of considerable and understandable concern of the parents. We discussed how the bolting might indicate both a desire on Daniel's part to be independent and able to move around his neighbourhood like other children his age, and the possible attention he receives from the obviously and understandably concerned parents. Clearly, Daniel's escapades alert the parents to the point that their reaction might reinforce this behaviour in Daniel. It was therefore suggested that Daniel be taken in outings, which apparently the family currently does, but also be told that, in the event that he bolts, he will be deprived of his outing for the rest of the day. It was felt that a program which emphasizes a positive attention to Daniel and his needs for freedom and being outdoors rather than reacting to his getting away  from home might be best at present. It is, of course, unfortunately, very difficult to advise the parents not to show excitement and apprehension to thereby prevent Daniel from being negatively reinforced through parental reaction to his escapades.

We subsequently discussed toileting. The parents feel that Daniel has somewhat regressed in this area, perhaps becausehe is very happy to play with hair shampoo and that necessitates the presence of others in the bathroom to supervise him. Apparently, Daniel also wants to be helped by his mother, and although he was able to manage to fully toilet himself in the past, he know  (sic)(meant to say "now") appears to require some assistance. It was felt that some attempt to remove the shampoo from the bathroom, so that Daniel might not engage in bubble blowing, as well as progressively weaning him from having an adult in the bathroom with him might be the appropriate steps to take. Daniel's cognitive ability certainly is high enough to allow him to understand the consequences of his actions but also, within limits, to be possible for adults to reason with him.

The discussion then revolved around exposure to danger. Although Daniel has apparently been shown how to cross the street he would nonetheless cross against oncoming traffic just to see the reaction of his parents to this dangerous activity. This is clearly a very difficult problem and one that may require very careful one-to-one handling by adults, reducing their negative attention-giving to Daniel when he crosses the street. We offered to be available to a one-to-one worker if the need for our involvement arises. However, we understand that both Aventure Place and the Geneva Centre provide ongoing behavioural consultation to the family and school.

Daniel's potential entrance to (name of group home) was then discussed. I emphasized how strongly our team felt about Daniel entering (a place), particularly because he has many positive points that would make him a good candidate for the facility. Also, it appears that his family may benefit from a placement away from home, particularly because Daniel is an inquisitive and daring child. Having in a context where behavioural consequences are consistent and systematic might really make for a much evener day for Daniel.

Some discussion revolved around the saliva smearing which Daniel presented last year and again this year. While he was tested, he engaged in this activity this year. Yet both parents and the school apparently feel that he he's not excessively preoccupied with saliva smeared. It is possible that the considerable stress imposed on Daniel through the testing might have exacerbated the relatively low frequency of exhibiting this behaviour under normal circumstances. Nonetheless, it was felt that, were the saliva smearing to increase, there may be a need to implement another overcorrection approach very much along the lines that were suggested to the parents last year.

I closed the interview by wishing the family all the best for this year and offering to be available to them as the opportunity arises in the future.

It was signed by  the head of autism clinic

Psychological Assessments circa 1985

ASSESSMENT GIVING AND RECOMMENDATIONS

Mr. and Mrs. Muller attended the assessment giving sessions on October 4, 1985. This session was conducted by Dr. Any Psychologist and Ms. Any Assistant. Dr. Any Psychiatrist also provided input on the issue of medication.

Mr. and Mrs. M. expressed a desire to know the diagnosis appropriate to their son's difficulties, as well as to receive recommendations for further skill development.

We  explained that Daniel's difficulty in communication and in understanding the world around him, accompanied by self-stimulatory behaviours, meet the criteria for a diagnosis of early infantile autism, and explained in more detail how in fact, Daniel's characteristics relate to the diagnosis. Subsequently, we proceed with sharing our findings with the parents.

According to information that Mr. and Mrs. M. provided in response to questions on the Alpern and Boll Development Profile, Danny is currently functioning in the physical and self-help areas at around the 5-1/2 to 6 year level. He is thus, pretty good in these two areas. We did recommend, however, that Mr. and Mrs. M. ensure that Danny in as much physical exercise as possible to increase his skill in the physical area as well as to help him channel his energy level somewhat. Furthermore, although Danny seems to be pretty good at taking care of himself, we suggested that Mr. and Mrs. M. further encourage him to do more for himself, that they treat him as a child of 11 years in this area, in order to help him to be more independent.

In the social area, according to parents, as well as in the communication area, Daniel's skills are more delayed, and are at approximately the 2 to 2-1/2 year level. We explained that this difficulty in these two areas is typical of the children we see in the Autistic Clinic, and strongly recommended that parents use sign language with Danny to enhance his ability to communicate  with others, and that they encourage him to sign in order to obtain things he wants. We emphasized that everyone involved with Danny must learn sign language and use it consistently, including his siblings and special need worker. We provided Mr. And Mrs. M. with an outline on sign language resources and materials that they may find helpful. Daniel has been already exposed to sign language but we felt that a systematic and concentrated effort should be made in this key area of functioning at the present time.

In the academic area, as reported on the Alpern and Boll, Danny is functioning at the 4-1/2 to 5 year level. This corresponds with the result of formal testing where Danny was able to comprehend and manipulate materials on a nonverbal test at around 4-1/2 year level. On a task which involved a language component, however, Danny scored at a lower level, at about 2 years, again corresponding to parent's perceptions of his language capabilities. Danny was able to understand the relationship between cause and effect, and was also very good at imitating actions performed by the examiners. He was attentive and motivated to copy those actions, again indicating a good potential for learning to imitate others and likely to communicate with signs.

 

Danny was also able to relate certain miniature objects to one another, indicating an appreciation at the way things relate to each other in his environment. We encouraged Mr. and Mrs. M. to continue working with Danny in this area of symbolic play and provided them with an outline on how to promote Danny's symbolic play abilities.

A concern of the M. and our own is Danny 's smearing of saliva. We recommended that parents deal with this socially difficult behaviour using the procedure of overcorrection, whereby every time Danny engages in that behaviour, he would be required to clean himself and the area where he smeared with (including tables and chairs) thoroughly with a solution of warm water and Lysol. Everyone, including mother, father, siblings and special needs worker, must follow this procedure consistently in order to eliminate the behaviour as quickly as possible, The procedure must also be followed in a matter of fact manner without emotionality or punitiveness, particularly since any additional stress or excitement may serve a reinforcing function and inadvertently increase the behaviour. We recommended that a hand-over-hand approach may be necessary at first to encourage Danny to follow through. The parents expressed interest in trying this approach.

In order to eliminate any additional excitement in the home and to assist to provide structure which Danny so much needs, we suggested that Mr. and Mrs. M. may consider having fewer guests in the home at a given time, as other children may provide too much additional stimulation and unpredictability which Danny may find confusing. The M. are apparently already taking care of this issue.

Further, we encouraged Mr. and Mrs. M.  to try to keep Danny busy with classification, seriation, and number tasks, such as sorting beans, macaroni or leaves according to size, shape and colour or to request that he help them around the house or during family outings.

Medication was suggested as another possibility to help reduce Danny's activity level and improve concentration. Dr. Any Psychiatrist discussed a number of medications and their potential side effects with the M., and provided them with a prescription for Stelazine, as parents were particularly concerned about Danny's ability to concentrate at school and Stelazine is considered to be helpful in this respect. Mr. and Mrs. M. will contact Dr. Any Psychiatrist in 6 days to keep him informed as to it's effectiveness with Danny.

We briefly discussed Danny's present school placement, which we feel is meeting his needs well at this time. For the future, we encouraged Mr. and Mrs. M. to consider placing Danny's name on the waiting list at both (group home's names) in the event that they may wish  to place him there when he becomes older. We also suggested that they visit both placements in the meantime to become familiar with the facilities available there.

Finally, we briefly discussed issues related to family functioning, and encouraged parents to continue, as they have been, spending time with all the of their children and to continue be sympathetic to their individual needs, including discussing the children's concerns with respect to Danny. Furthermore, we encouraged them to spend time by themselves.

We invited Mr. and Mrs. M. to feel free  to contact us should they have any concerns regarding Danny and asked that they contact us in 10 months to set up an appointment to have Danny reassessed.

15/Oct/85 #4RR-13 16/Oct/85 #5RR-1-2 dictated 11/Oct/85.vdc

Signatures of Psychometrist Research Assistant & Project Coordinator Child and Family Studies Centre and of Psychologist Head Autistic Clinic Child and Family Studies Centre.

Other People's Corroboration

As time passes on more people are corroborating our observations with their own personal stories. Total strangers to us, they don't know us and we don't know them. Some are befuddled parents like us and some are caregivers. Some are professionals like general practitioners or psychiatrists. Some are people who worked as reps for drug makers. They say the same thing we have been saying since 1999 when we observed Danny becoming chronically self-injurious and crazy violent after Risperdal.

We fought to keep Danny off and away from these drugs. His father in February 5, 2001, met with administration asking to stop giving these drugs to Danny because of the serious adverse effects, he showed them videos of his bizarre behaviour as evidence and talked of that Christmas day in 1998 when we found him twisted like a pretzel. His father went on speaking calmly of our concerns, he told them how helpless and scared we were when we saw Danny unable to stop moving on June 5, 1999, of him attacking me on December 25, 1999 and the intensity of his compulsions and obsessions, his physical strength extraordinary for a skinny guy, his frozen postures followed by head bangs. His father was livid when we were dismissed from that meeting with "we will have another meeting", he was so angry that I thought he would have another heart attack, hissing in anger told me, "What else is to discuss?... You can go to all his meetings and talk ad nauseam, they are not going to listen".

We were searching for doctors to helps us to reverse the effects of Risperdal and by the doctors' comments I realized administration were sending to them diagnosis  of psychiatric disorders made by their own physician which we have objected to several times, apparently adding some comments about our refusal to accept those diagnosis. I told administration to stop it and the man answered that he couldn't.

Apparently to justify their use of drugs on Danny it was important to them to present us as delusional parents who didn't want to accept the diagnosis that Danny was "psychotic". And to justify the use of deceptive lies in the selling of Risperdal to us in 1995, the physician voiced loudly the reason at one of our parents's meetings, "because parents don't like to hear that their child is psychotic".

After doing intensive research in 1999 we concluded that minor and major tranquilizers aggravated Danny's  "autism". We continued our research, we concluded that all those changes on his "behaviours", his "psychosis", moods ("bipolar"), his seizures, abnormal movements, "frozen" catatonic postures, altered state of mind or "out of it" states followed by sudden head banging and aggressive head butting, incontinence, etc. were all adverse effects of the drugs, they were drug-induced.

These drugs made our mild tempered autistic child "dangerous" not only to himself but to his family, to caring caregivers, to the other autistics. Doctors, group home administration and the government had closed wilfully their eyes and decided to ignore the drugs' danger. They are responsible. Took more research to concluded that the bottom line, the reason of their "blindness, deafness and muteness" towards drugs side effects was money. The more "complex" the case, the more money they would get.

We read many books explaining the direct cause and effect of drugs on behaviour. It was all there. Drugs can and do change the behaviour of people and not just some of the developmental delayed like an autistic, anybody could be affected.

Not only we had another mother (Ann Bauer) saying that drugs made her autistic son "crazy" but she also described an unexpected horrific attack on her persona by her beloved son, a very similar incident to my own (December 25, 1999).

And here we have the latest, Gwen Olsen, an ex drug rep, telling it all in a book and speaking up in YouTube under "Ex Drug Rep Manipulating Doctors". There she not only describes the different "strategies" taught by drug makers in order to convince doctors into using their drugs on their patients, but she tells us of her own experience with "mental illness". Gwen goes on describing not only the drug-induced changes in personality but the adverse effects like abnormal movements, the constant progressive mental and physical deterioration she observed in patients, but also the formation of suicidal thoughts and finally drug-induced violence that makes it precarious to live or care for the affected victims.

In her website gwenolsen.com she has a memorial to her niece, a 20-year-old victim of drug-induced "suicidal thought formation".

"Psychiatrists collected money from drug manufacturers for prescribing atypical anti psychotics"

 

 

These are not my words but were our thoughts in 2001 and so I asked point blank if Janssen and Janssen, makers of Risperdal, was a big donor for the group home because every autistic I knew was on Risperdal and diagnosed "psychotic", its executive director who is a psychologist, very quickly said "no", of course.....

This is the third part of Ann Bauer's story, and those words were her own words between quotations marks.

"In addition, they all warned -- each and every journal article, white paper and scientific treatise -- that the one thing practitioners should never do is prescribe antipsychotic medications, such as Abilify and Geodon, because they will make the symptoms of autistic catatonia much worse. And it might cause permanent damage."

To those two drugs, in my opinion, we should add the rest of their cousins, atypical anti psychotics like Risperdal, Zyprexa, Seroquel, etc., older neuroleptics, anticonvulsants like Valproic acid and Tegretol and the new AEDs like Keppra described as the "rage med", antihypertensives like Propranolol, SSRIs like Prozac and many, many, other drugs some sold over the counter. Lorna Wing and Amita Shah, said if drugs were needed to choose one without parkinsonism adverse effects, but I found such drug is hard to find, even I doubt it exists. Many autistics and NT children are chemical sensitive and dying from an overdose is a possibility, not to mention the unforeseeable brain damage of long-term use of those drugs.

The next question was, if Lorna and Shah recognize drug-induced catatonia in Danny without seeing him, would doctors in Toronto on "seeing" Danny do the same? From all those I went only one approach Danny, moved one his arms and said: "It's not rigid", the rest care little to even look at him. One was so scare of Danny that didn't want him in his office. No help from them.

So, perhaps we thought we are using the wrong word, let's try "Tardive dyskinesia". Is Danny suffering from TD? was the question asked to doctors. Again, confusion, one wrote of "late onset of extrapyramidal side effects". The rest attribute his problems to his "condition".

Then came the episode of June 5th, 1999, in which Danny couldn't stop moving for almost 24 hrs. The answer was  "Chinese food syndrome" from MSG. Still that was not a satisfactory answer and we look into another word "dystonia", we sent pictures to several websites describing dystonia and apparently that was it, an acute episode of dystonia brought by Risperdal.

Ann Bauer continues:

"The third thing I found was a Web site that described neuroleptic malignant syndrome, a slow poisoning by prescription that lasts (and this is the part that caught my attention) even after the drug is stopped."

Understanding that I asked the group home physician if Danny was showing symptoms of NMS, he said no. Some doctors believed that NMS is catatonia. NMS shows like fever, muscle pain like having a bad case of the flu and can be fatal if not recognize and treated timely. The average doctor is not familiar with NMS, which is scary.

A study done by the University of Toronto found that these drugs (Risperdal and Zyprexa) "linger in the brain". For how long? "As long as the person has been on them", a friend familiar with drugs  told us.

So Ann Bauer found out the "lingering" part of these drugs and the meaning of "tardive" or "late onset".

"Finally, believe or not, we've reached the hopeful, lucky part. Only I didn't know that yet."

"I was crazed. Throughout the early morning hours, I e-mailed people. The retired doctor from Stony Brook, N.Y., who had authored original work on autistic catatonia; a therapists from the Netherlands who claimed to have anew method for treating it; researchers at our local university. Then I went to bed and slept fitfully for exactly one hour and 40 minutes."

"When I awoke, at 7:30, my email was full. The most helpful response came from the gentleman once of Stony Brook, now professor emeritus of both psychiatry and neurology, a genuine mensch, living on Long Island with his wife. "Dear Mrs. Bauer", he'd written at 6:48 a.m., "I know of no one in Minneapolis who understands the connection between autism and catatonia. But the clinicians at Mayo are very knowledgeable. Would you like me to make a referral?" Other messages simply advised me to seek medical attention for my son immediately, to flush the medications from his system. "It sounds as if your son is, indeed, suffering from autistic catatonia," one doctor wrote. "But I believe most of the symptoms you describe are related to the inappropriate use of neuroleptics."

In the year 2000 we also sent emails to doctors describing Danny's "behaviours" or symptoms. Lorna Wing and Amita Shah sent us by snail mail a yet to be published article linking autism and catatonia, in it they described catatonia. Their description fitted Danny's problems in eerie detail. Others recommended Clozapine or Benzodiazepines together with Electroconvulsive therapy ECT.

Ann Bauer continues:

"How lucky can you get? Not only did the world's top expert reach across electronic airspace to help diagnose and refer a perfect stranger, but we happen to live just one hour and 15 minutes from Mayo Clinic, one of three places on earth where autistic catatonia is truly understood. And it's that rare healthcare organization where doctors are not allowed to take kickbacks from the drugs companies. But I'm getting ahead of myself."

"On April 30, my ex-husband and his wife put our son in the back seat of their car and drove like hell the 72 miles to Rochester, Minn. Exhausted after the 90 minutes trip, the three hour wait to check in, the half-year of tracking a drug-addled boy, they walked across the street to a hotel room after checking him into the hospital and had their first uninterrupted night's sleep in weeks."

"Then we drove to Rochester to meet with nine practitioners who'd been called to assess our son. It was  an interesting case, they told us -- and instructive. Within three days, they had performed a series of medical tests and evaluations, determining that our son was neither schizophrenic nor psychotic. He was autistic, exhausted, improperly medicated, borderline diabetic, and simple stuck. It would take them perhaps a month to detox his body of all the drugs and treat the underlying catatonia  that had dogged him for more than a year."

"This occurs in about 15 percent of all young people with autism," the team told us."We don't know yet why it happens, but we treat it."

Here I interrupt, wondering, what is the percentage of people with autism having a "paradoxical response" to drugs?.... that besides developing catatonia. Specialists that we went to, hoping to help us to reverse the effects of Risperdal and treat its induced catatonia didn't even bother to look at Danny. We find out why soon enough. We told the group home of our intentions, we told the doctors names and dates of the appointments. The group home had been sending ahead the diagnoses made by its physician (and, big mistake, Danny's family doctor until 1999), despite being told to stop it. Told a second time and asked why it continued doing it, a  member of administration, simple answered: "we have to". To that I asked: "Even if it's done by a general practitioner... in base of a faulty data?".

This use of "data" to make "psychiatric diagnosis" confirmed what we were told by a caring caregiver, "Anybody can say anything of the autistic and do whatever they want to them and get away with murder".

Later several specialists, psychiatrists not related to the group home, found Danny autistic, just autistic.....

Ann Bauer continues:

"And then they did. Magically, it seemed. On the morning after they began their regimen -- a combination of therapies that they orchestrated like a carefully choreographed dance -- our son awoke and stretched, clear-eyed, to ask us if we'd like to play a game of hearts. And after a slightly shaky start, he shot the moon, gathering all the tricks with controlled sweeps of his right hand, flashing us a shy but satisfied smile."

"Five days later, the New York Times ran a front-page story about psychiatrists in Minnesota who were collecting money from drug manufacturers for prescribing atypical antipsychotics, including Abilify and Geodon. According to the Times, "Atypicals have side effects that are not easy to predict in any one patient. These include rapid weight gain and blood sugar problems, both risks factors for diabetes; disfiguring tics, dystonia and in rare cases heart attacks and sudden death in the elderly."

And, I have to add.....paradoxical reaction, self-injurious behaviour or suicidal thoughts, violence, altered states of consciousness, seizures, abnormal movements, bizarre impulses, incontinence.....before Diabetes Risperdal causes hyperglycemia....muscle spasms so forceful they were like receiving sudden electric shocks throwing Danny's head backwards hard, or sharp pain in the neck while bending down to pull up his underwear or putting his socks. Getting frozen in postures or repetitive movements, interrupted could head butt you and head bang screaming......

Ann Bauer's story continues:

"Side effects like our son's -- almost certainly caused by a unique combination of the drugs and autistic catatonia -- were not explicitly cited. These facts, however were:"

"In Minnesota, psychiatrists collected more money from drug makers from 2000 to 2005 than doctors in any other specialty," the Times reported. "Total payments to individual psychiatrists ranged from $51 to more than $689,000. with a median of $1,750. Since the records are incomplete, these figures probably underestimate doctors' actual incomes."

"By this time, we four parents had resumed our life in Minnesota and were trading visiting days."

"After work on the night the Times article came out, my husband and I got on his motorcycle, puttered through rush hour traffic, then sped down Highway 52, arriving after dinner hour to find our son sitting at the table, playing chess with a nurse. She was hunched over the board, muttering; he was lounging in his chair, leaning back to watch television while he waited for her to make her move. There was a small crowd gathered around watching."

"He's killing her!" a patient named Richard crowed. "He beat her the first time in seven moves and the second time in four."

"The nurse raised her head and grimaced."

"Did you tell her you used to be a tournament player?" I asked, bending to kiss my son's woolly hair."

"Oh, no, I guess I forgot," he said vaguely and slid his eyes at me in a way I recognized from years ago, that quirky boy from long ago."

"After the visit, riding home through rolling farmlands and a scarlet sunset that was cracked with gold, I counted the ways we were lucky. The doctors at Mayo had assured us that our son's prognosis was very good: Even after the treatment was done, he probably would continue to improve and regain most of the ground he'd lost by summer's end. My son's supervisor -- a wise and gentle woman who'd never flinched, even when he was at his craziest -- had called to say that she was holding his job for him, maintaining his health insurance, and hoping for a swift recovery. My husband and my former husband's new wife had parented stalwartly through the very worst of times."

"And there was that one moment, as we leaving, when my son had put his hand on my arm and told me he missed us. He also missed going to Starbucks and walking in the sunshine and he wanted, more than anything, to go outside for just an hour or so. 'You could just lead me out of here,' he said, his face sober as a Lutheran minister's. 'If I walked past the desk with you they wouldn't even see me.' I looked straight up to him, this bearded man who, at 250 pounds is exactly twice my size, and started to tell him I thought the nurses probably would notice. But he reached out and touched my arm, gently, wrapping his fingers all the way around. 'I would only go out for a little while, you know. And later, I could come back. Don't worry, Mom. I can find my way.' "

Next "Autistic Catatonia and ECT" and "The Body Electric" by the same author.    

 

Justice for Danny

  There are people who has no shame on feeding off the misery of other people, making a high living out of it. That’s the conclusion I arrived from my observations, of my experience dealing with the administration of the group home after Risperdal caused serious adverse effects, almost killing Danny. It took me a long time to open my eyes and see the truth,...these people were not there for Danny, they were for the money that the government provided for his "care" and.... damn Danny!
The beginning of this particular group home tells the story of a group of parents who got together in 1974 to found a home where their autistic children would live a better life. They thought life in an institution was not for their autistic children, they believed their children could live a life free of sedation, free of physical and chemical restraints. Thirty years later this "principle" was deleted from its history, according to one of its psychologists the "treatment" of the autistic has "evolved".... to me it has "devolved" to barbaric times. Still in 1990 when my son was admitted at the group home such mentality of relying excessively on tranquilizers existed, but we didn’t know that. We thought Danny would be cared for with the same level of respect and compassion that any normal human child was entitled to and more so a disabled child. We were wrong.
We also were ignorant of the damaging effects of these psychiatric drugs on the autistic, worse in our son’s particular "autism". Parents and caring staff openly talked about "meds" which gave us the wrong impression of talking about "good" medications which in reality psychiatric drugs are not. They are given many names besides calling them "meds". In the 1970s average people called them "uppers and downers". In the autistic world, in the 80s and 90s they were described as "behaviour-control drugs". In books about medicines these drugs are called "minor" (Benzodiazepines) and "major" tranquilizers (neuroleptics/antipsychotics). In the late 90s they were called "downregulators" or "upregulators". Basically these "meds" are sedatives or stimulants with fancy names but with same sort of adverse effects. They are man-made chemicals foreign to the human body: blocking, suppressing, inhibiting normal body function; causing metabolic changes, taking away nutrients creating a "chemical unbalance".

 

*******************

 

Neurotoxic drugs whose effects are sought of, which is to immobilize/paralyze a person. The person becomes "stiff" unable to move, with time develop what is called drug-induced parkinsonism. These neurotoxic drugs so severely damage the brain that their effect is called "lobotomy by prescription". The use and abuse of these drugs exist in places where there is no understanding of autism compounded with total indifference towards the well-being of the autistic.The government could play a stronger role in controlling how much and how many drugs are given to the autistic. Moreover it should mind experts on autism who agree that drugs do nothing for the features of autism, but aggravated them. A well informed and caring government could offer a drug-free environment for parents who believe their autistic child is better off free of drugs. A caring well-educated government would have an independent lab test the level of drugs in the autistic to prevent over-drugging. Many times boredom and lack of activities are behind the autistic anxiety, SIB and aggressive behaviour and some staff recourse to give them PRN drugs, as consequence I saw in the last years, as a norm, the autistic sleeping 18 to 20 hours a day including my son.

Autistic cared by unsupervised staff are easy pray to abuse. I described what I observed to different members of the board of directors and to different members of administration. Their inaction allowed the abuse to continue and by doing nothing they were as culpable as those abusing the autistic.Their physician wrote the prescription for drugs and staff had permission from administration to administer them as they saw fit, according to administration in their own words, "for their (staff) own protection" and, may I ask, who is protecting the autistic from being over-drugged?
Of course, as in any organization contracting out their responsibilities, I found excellent caring people among the front liners workers, they were responsible caregivers that took the time to "bond" with their autistic charges, took their time and effort to get to know them, to build trust, rapport, to respectfully serve their needs, to encourage them to learn, they sang to them, played with them, took them out consistently, took trips to Florida with them, those caring staff worked hard, were resourceful and positive and advocated for their autistic charges and then, there were those who couldn’t understand the concept of "support" let alone "compassionate support". They severely lacked training and interest in learning how the autistic communicate. They didn’t know how, didn’t want to or couldn’t connect with the autistic. Those were the ones who caused trouble for Danny. But more trouble came from new policies from the new administration.

One day in 2001 I found staff reeling with anger because from administration came a policy of not showing affection to their autistic charges, they were not to touch, not to hug them, not to kissing them. Upset caring staff were saying the autistic were like children they wanted affection, they need it, a little hugging made them happy. We are talking of the adult autistic who has no idea of the value of money, but any show of affection was for him like winning the lottery. They reflect staff mood, I have seen that, if the autistic senses staff is in a good mood, smiling, they too smile and do their happy dances.
Administration was grand at playing with words saying that those staff who stood up for their autistic charges were "emotional" they "had an emotional attachment to...", insinuating with it that staff in order to be "professional" cannot have any kind of connection, any feelings, any rapport with their autistic charges....staff have to behave like unfeeling robots and get immediate compliance from their charges without any coddling or playful interaction, no singing, counting, nothing....I wonder why? Because of the false assumption that the autistic has no feelings? That they do not feeling pain? Or, perhaps, they assumed autistic are subhuman beings? Non-humans unable to feel emotions? The assumption that because the autistic cannot speak, have no intelligence? And so, denuded of their humanity, what were they? They weren’t animals, but for some staff they were not even worth of the care and compassion given to animals. Denied of their humanity thus do not deserve love... Or, by denying love and compassion to the autistic in their care were themselves exposing their lack of humanity?
Or, we were dealing with "professionals" unable to deal with emotions, unable to give affection, to feel affection?
In October of that year or in 2002, a behaviour therapist, or psychologist, showed me a video tape. In it I saw staff waking up Danny, there were four mornings, four different staff, their angry, unpleasant, aggressive ( i saw a female staff push Danny with her knee very fast), cold "approach" was described by him as "consistent" so his conclusions was that the "problem was not with staff..."
The feeling I had was that these "professionals" had trouble dealing with affection, a staff can be professional and sensitive. As caring staff were saying, "we are caring for human beings", "we are dealing with disabled human beings who are people-dependent". The moment that the "professional" saw Danny’s disability as a "disciplinary" problem it was like considering his disability a "crime". A crime punishable by abuse and mistreatment.

Or, perhaps, the "professional" thought he could "cure" his autism by being tough with Danny.

As his disability was "criminalized" the use of these disabling drugs were justified because Danny, as a "criminal", didn’t deserve nothing pleasurable of his own choice. I remember telling a doctor how Danny, fifteen at the time, was able to play video games and his response was "My 4 year old grand daughter can do that", meaning unless Danny was a rocket scientist his life was not worth of enjoying it....
Someone said, "As a society we are going to be judged as how we treat our less fortunate among us....".

Drugs' Adverse Effects

Some effects of the drugs were imperceptible, some were obvious. Staff, who knew Danny well, reported them to the doctor who, many times, dismissed them as of no significance. Incontinence, the most obvious, was dismissed as "Risperdal blocking an extra serotonin receptor". Others like pain at the tips of his fingers were imperceptible.

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.

 

Informed Consent

Adverse Effects of drugs, "All drugs have side effects" but we never expected them to be so damaging. We were so stupid not to ask. The problem was that in our minds was that these drugs were presented as "medications" and were given by doctors, and doctors supposed to help you heal... feel better. Even if we ask what to expect the doctor would have made it sound as something of not importance and remote to happen, said, I believe, absolutely intentionally, so we parents consent. Danny was a child, just 11 years old, what were these people thinking? Angrily, we asked ourselves.What do they care about? Prescribing these neurotoxic drugs to a child. We felt betrayed.
We were expecting words of wisdom product of their highly educated background, of their higher intelligence and many years experience. We thought of them kind and understanding and, falsely, they looked the part. We were expecting to light the way to lift our burden instead they brought misery to an already anguished family. They brought pain and suffering to an innocent child, a trusting child, a defenseless, non-verbal autistic child, and they did intentionally with full knowledge of what they were intended to do, prescribing drugs that would bring chaos and confusion to us and to him, reducing his potential to nothing.

Adverse effects were never mentioned to us. We heard someone saying they did, they lied. Much later we read the words, hard to pronounce, even if the doctor would have said those words we wouldn’t have understood them. So the doctor slept through our first appointment to wake up to write the prescription for Thorazine. Years later we read the words describing the adverse effects, we needed a medical dictionary to see their meaning of each and from there to search online for simpler explanations. If they were mentioned and spelled them out to us we have never consented. If they had explained what was the real purpose of their use we have never consented.
That’s what was lacking: "informed consent" and we were not duly informed of their intentions and consequences of using these psychiatric drugs on a bright non-verbal autistic child. Years later the deception continued, when we saw the damage and we opposed to the use of drugs, threats and false allegations were made to get us to consent.
So the government has formed a committee to educate front-line workers to identify drugs’s adverse effects on state-care children. I noticed doctors are not able to identify correctly the damaging effects, not able to separate "conditions’s behaviours" from drug-induced behaviours. If doctors don’t see them less would be able to see an average caregiver. I have noticed that. And then I have seen the indifference, the non-response. Some of Danny’s caring caregivers sounded the alarm to no reaction neither from us, nor from the doctor or from the group home administration. So, with committee or not, I don’t believe that situation is going to improve unless parents get educated or better, the government creates a drug-free environment for children and non-verbal autistic