I remember the selling of living in a group home. The words used were that Danny would live in "a structured environment", "he would benefit from a structured routine". Those were good marketing strategy, but they were also the biggest lies ever said. To begin with: the constant change of staff; the worse, the uneven care, some staff were excellent, some were not and how these factors affected the adult autistic? Of course affect them, was it recognized? Verbally, yes, but nothing was done instead it got worse. How many times parents vocalized their concerns saying that, at any giving time, "I never know who is the person caring for my son ?!".
The autistic, child or adult, even a normal person, needs the constant presence of a carer. All of them need a carer that has a stable personality, providing a positive, stable environment. Simple.
But it wasn't for administration or the ministry. In relation to "stability", how many times administration threatened (or I was asked or Danny's doctor was asked) to send Danny to a psychiatric ward and keep him there until he was "stabilized". I objected saying that "stability" does not come in pills. I couldn't understand why their threats changed from sending Danny home to send him to Whitby Mental Health Center, at the end, to any psychiatric ward.
Clearly, we understood these were threats based solely in retribution. I guess the more we object to the use of drugs on Danny the more threats we got.
Finally, in April 2005, it became clear. One of his caregivers phoned me to watch a TV news report about the barbaric treatment given to an adult autistic at the hands of the Ontario Government, specifically at the hands of The Office of Public Guardian and Trustee. That poor man was taken into "custody" on December 2000 and kept for 4 months in the most deplorable conditions that a civilized country could force on another human being. We are in the 21st century, seven years into it and, that autistic man is still confined behind Plexiglas walls despite his constant requests to let him go home, an abhorrence.
And, in 2001 we got the first threat to send Danny to a psychiatric ward, a place, we believed, that no autistic belongs. Now I understand. One member of administration explained to me that if I allowed or consented for Danny to be admitted into a psychiatric ward I would have lost control over his treatment, control over Danny. Danny's doctor didn't agree with them despite pressure. He was told if he allowed the reduction of Zyprexa he would be responsible if staff member got hurt or if Danny hurt himself. Here we have a variation of a unwinning "game" played for the last 100 years, a sort of a catch 22. As one psychiatrist said, long time ago, the crazy are those who say they are not, but if the patient admitted to be crazy....either way they are given "treatment".
The "treatment" in many cases is worse than the 'disease' or "condition". My observations were that drugs caused Danny to become aggressive and to bang his head. This reaction to drugs is found in a book like "Drugs and Behaviour" and many others books, it is mentioned by many psychiatrists, it is found in the papers written by the group home physician that minor and major tranquilizers, Benzodiazepines and antipsychotics like Risperdal and Zyprexa and many other drugs, can make some susceptible people to behave aggressively and/or to do self-harm. It's worse for those with autism and many are non-verbal unable to tell doctors how drugs are affecting them.
I observed how a heavily drugged autistic hurt staff. Peers were hurt, loved ones were hurt and became scared of their own children like I did. Even I was grabbed during a visit. Danny became aggressive and self-injurious while on drugs and worse off drugs. Studies have found that drugs like Risperdal/Zyprexa lingers in the brain for very long time. And, if it wasn't that scientific fact, then, perhaps, Danny was given drugs without my knowledge. Some staff acknowledged, administration confirmed, that they were allowed to carry drugs in their pockets for their own protection and to administer them if they felt in danger. As usual, caring caregivers observed that some staff abused that permission. As it happens, on December 1999, Danny, supposedly being off Risperdal since April, went into a "frozen" posture, "stuck" to a doorknob when I interrupted him he attacked me. Since then I, too, became another mother scared of her own son.
Danny's unfair "treatment" created division among staff members, there were those "close", loyal to administration, then there were those daring to stand with Danny. Then there were those who silently kept on working....and, of course, there were those who didn't care one way or another just taking advantage of the opportunistic "situations" created by management decisions.
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