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".
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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....".
