Entry for March 3, 2007

I observed two facts:

(a) Caring for autistic’s is easy business, most of them are non-verbal, can’t say much, even if they do in a particular way, it is rarely encouraged and is too expensive to invest in more education, we were told. And, parents are just relieved/ grateful that anybody is willing to care for them, considering the alternative which was their children spending the rest of their lives in a psychiatric ward mechanically/chemically restrained to their beds, if they were lucky to get a bed. Ironically, but that was exactly what they were doing, the difference they were just chemically restrained, sleeping 18/20 hours a day. In the later years, one autistic, in particular, slept in luxurious comfort, in a double bed.

(b) It’s very easy to make psychiatric cases of the autistic, all those "behaviour-control drugs" administered to the autistic "as a matter of routine" have, among many other adverse effects, "bizarre behaviours". They do have "bizarre" behaviours, drugs just make them more.

Self-injurious behaviour among the autistic is well-known and considered part of their "condition". As one doctors said, "they just do", others have several explanations, one of them was, "the autistic bangs their head to get attention" and, then, there are those who say is because they are feeling pain....in their guts.

Against all that abundance of theories I compared Danny’s self-injurious behaviours, it was not a match, the last one made me hesitate, could it be? Many times, it looked like he didn’t have control over his SIB, being head bangs or punching his face. In the earlier years his episodes of SIB were only happening at the group home, not at home. We concluded that the occasional use of drugs at the group home caused him to SIB occasionally.But when Danny was kept for two years on Risperdal and then taken off of it because he was showing "late onset of extra pyramidal side effects", explained in simple words he was becoming "stiff". The doctor assured us that Congentin would resolved quickly those symptoms and wouldn’t take long for Danny to get back to what it was before, he was wrong.

Among many adverse effects and serious changes on his personality, his head bangs became chronic, they were more severe, worse it was an everyday occurrence and, sometimes, several times a day !!! And, it was not only occurring in the group it was happening in our home !!!There was no doubt in our minds that the damage was done it was clear his head bangs were drug-induced. Not so for the group home management.

Then we found out about "The Alien Hand Syndrome" apparently a feature of parkinson disease, a feature of drug-induced parkinsonism and of brain injury. To us that could be the best explanation.....unless a better one is discovered.

As remote as possible it was making sense.

We had to look into a every possible explanation.

On online we found a lot of information, many were very hard to read, many were hard to understand.

Soon we became adept to see the trees from the forest and we started to understand.

People in power, in position of authority with education, whenever is money involved make decisions or say statements in which they personally or their organization would receive financial benefit and when questioned they play with words, using complicated sentences to obfuscated the average person from the plain, simple truth.

Many under pressure develop split personality. Most of them when confronted suffer suddenly from memory loss or have selected memory loss. Speaking from their sides of their mouths or thinking aloud. Usually it was us who misunderstood them. Retracting anything said before....that could affect their security of their jobs

What the autistic needs is qualified people to give intelligent, sensitive, compassionate support. Staff can make a difference in the lives of the autistic. There is a lot of money that is wasted. Money that should be exclusively to provide with individual care and attention for at least 6 hours a day. Money is wasted on psychiatrists, psychologists, behaviour therapists. The salaries of those specialists would pay handsomely for qualified front line workers, for their benefits and security of jobs. Worse staff members times is wasted taking data looking at the autistic as lab rats instead of interacting with them, getting to know them,becoming their friends. Money should be used to provide consistent activities that the autistic can count with every day as was done in not too far past. Money was wasted using electronic gadgets to show to doctors how psychiatric were the autistic and in the need of drugs to manage their out of control behaviour. Money should be used in buying electronic gadgets for the autistic to use to communicate,instead of keeping under sedation in their rooms, in their beds or sitting in chairs. The adult autistic can still learn more if given a chance.

Money used in paying for psychiatric drugs should be use to pay the salary for a good cook to guarantee healthy meals and snacks for the autistic. They loved good food. I have seen them. Money should be used to buy cameras to monitor staff members actions and to prevent abuse. Good caregivers didn’t mind that idea, they have seen bad staff physically intimidating or abusing the autistic and lying about it saying that the autistic did it to themselves and many honest staff lost their jobs after reporting them to administration. Money should be used to get managers overseeing and participating with frontline workers to see that the autistic’s rooms are warm, beds warm, bed dry and have beddings according to weather, has pillows,had pajamas and a routine of preparing for bed.

This not the end. It is the beginning of an amateur sleuthing.