Aspies For Freedom

Behind plexiglass walls in a group home.

"Friday, April 22, 2005
Fighting for a dignified treatment, our story sound like it would occur in a far, far from home in some barbaric country, but it is happening here in Ontario. A 34 year old autistic severely autistic man from Welland, is being held in solitary confinement in a group home, while his family pleads for his return home. " End of quote.
The author is Lauran Sabourin

The video has been erased.

First off - could you please explain to me whether 'Danny' is your son?

And regardless of who he is in relation to you, what does 'Danny' have to do with the vague article about which you cannot seem to find any factual information? I find this really confusing, what are you trying to say? Is this a repeat posting of the petition you removed a link for about a month ago?  :?:

I completely agree with the petition on 'Danny's Site' but it seems to have little to do with this particular case that you are using for what purpose exactly?

I really don't think you are doing this petition any favours by trying to hype up support with some dubious report that you admit yourself you cannot even verify!  :?


Without knowing what actually went on it's impossible to decide whether or not this unspecified 'severely autistic man' aged 34 needs to be freed.

Sketchy articles very rarely convey the truth and unless we are told what he supposedly did and what medications he is on and why, I don't think it is for the general public to decide whether or not he needs to be taken off them!  :roll:

Yes it has long been proven that pumping people full of meds is not the answer but it seems equally silly to just cry for action without even knowing what he is on, why, and at what dose. Certain meds do have great benefit against things like panic attacks, aggression, self-harm etc. IF they are applied with consideration.

E.g. not just pumping someone full of them, or sedating them just for the hell of it.


IF this unspecified man is actually confined for no reason, IF he is pumped full of meds, IF he is just fed through a door (seems a bit odd... I mean what so he just sits there and poos and wees himself because he is locked in?) etc. etc. then yeah sure it's terrible.

But do we actually know any of these things? Do we know why he is in the home, why he was put into solitary?

Do we know if he is kept in the home and in solitary 'indefinitely' (or whether it was just a temporary measure)?

What is his exact condition (does he have any other issues in addition to 'being autistic'? Looking at your own son it may seem horrible to imagine the same being done to HIM, but what if someone living with your son was aggressive and a danger to your son, would you still think that it was wrong to ensure the other person was kept away from your son etc)?


The article says very little about the actual facts, just that he is "in solitary confinement" and that this is a room where he stays on his own, and that he is on some unspecified medication, and that his family want him out. But what the general circumstances are or why he is in there in the first place - not a whisper.

All we know is that "neighbours made allegations our of fear". Were those allegations justified?

If not, why not, and why have they not been checked?

If yes, why should they have to be exposed to the danger, just because the person they are fearing is autistic?

Also -I don't understand whay you are trying to say with the part about the man''s movements being similar to your son's.

If your son is autistic, and this man is autistic, don't you think it's normal that they share characteristic movements seen in many people with severe autism?

How is this something that means he "should be freed"?  :?

Thank you for your reply. Things done to a non-verbal autistic are barbaric in nature, they are done out of fear or by staff who wants total compliance. There is a Chapter of Rights for the Autistic signed by most of the European countries. There is also the voice of an expert in autism saying that meds does nothing for the autistic.

Yes, I believe is to make it easy to care for them.

The rights of that 34 year old is also violated even if he is solitary confinement for a  minute or an hour. To be a non-verbal autistic is not a crime that requires confinement and isolation. Some drugs make some people crazy violent, there are a lot of studies confirming it, aggravates the aggressive behaviour of some non-verbal autistic endangering the safety of others. I saw staff being hurt. Staff told me of being hurt.

Having panic attacks is not a reason to medicate, at least not in the case of a non-verbal autistic. I have seen the right way to help a panicky autistic and the wrong way. Antianxiolic drugs and tranquilizers used as routine aggravated the intensity of the panic attacks.

Some called lobotomizing with drugs. They lose control of their emotions. Drugs sedated or kill the high functioning parts of the brain and let emotions run wild.

Another non-verbal autistic went through a time of aggression from 8 to 13 years old, his mother refused to medicate him and now at 30, that man, a heavy tall man at 6'4" height is the calmest of all. He had panic attacks and some staff knew how to calm him down without meds but others aggravated his panic attacks and was given Ativan. When he reacted to physical abuse, he was given Risperdal and his weight went from 200 pounds to 350.

People who are not psychotic, normal or autistic, given antipsychotics they become psychotic. They can develop abnormal movements or extrapyramidal side effects, parkisonism, akathisia or tardive dyskinesia.

Some parents fought against meds and now their children are calm and easy to get along. One despite given all sort of drugs included antipsychotics became calm, so far that I know. Another boy I know, after 15 years on large amounts on drugs, is shuffling his feet, sleeping all day and pacing all night, lost all his hair, hardly can blink his eyes and he still is aggressing.

The effects of Risperdal were severe, caused emotional and psychological changes and caused abnormal movements.

So, as I said barbaric things are done to the non-verbal autistic. Excessive use of drugs, excessive physical restraining, solitary confinement, when what they need is tools of communication from very early age, calm people to give support and willing to learn the way they communicate.

I still do not quite understand - how are 'things' barbaric? Which specific case or circumstances are you talking about?

In any case: I definitely agree that more education needs to be provided and useful strategies for staff (as I do not think it is always feasible for parents to provide care in all circumstances), and I do agree that more needs to be done to highlight the problems that can result from excessive medication.

My psychiatrist told me that very low doses of Risperidone can help with some types of anxiety and intrusive thoughts, and that a lot of the horror you hear about is because they are hopelessly overdosing this med, since not only do many autistics need smaller doses of some medications, but esp. antipsychotics have terrible side effects, and it is scary how often side effects are simply ignored because the patient becomes "easier to manage" (well 'dead people' are easy to manage too but would a serious doctor prescribe killing people to 'heal' them?).

Of course I must say I do not believe that restraint, solitary confinement  etc. is always condemnable because you have to draw the line somewhere between how much freedom everyone gets and how much the other patients' freedom can be jeopardised.

Granted, autism alone, with sensible measures to avoid distress and sensory overload, rarely causes the kind of aggression that may require such mesures, but there is a very high co-morbidity for Bipolar for example as well as other problems, and all the care and consideration can sometimes not stop a rage attack from happening.

I edited my posts and  I tried to answer with more details your questions.

Parents need also education. I have seen parents aggravating  the 'behaviour' of a non-verbal autistic. In my case I was taught by several teachers I learn to be calm, collect, and to no react. To speak in soft voice. To tell him what to do instead of scream 'no' or 'don't do that' with a matter-of-fact voice.

But, I was lucky I found good teachers. Nowadays many teachers overreact and ask for pills, Ritalin, Risperdal, etc. whatever is in fashion.

Some autistic on drugs are in danger of dying or, as staff/ other parents said of 'becoming toxic'. There was one who lost a lot of muscle from 'serotonemia' I believe is Malignant Neuroleptic Syndrome, he is learning to walk again.

My son lost control of his arms and legs, his muscles are so tight, he has to make a tremendous effort to move them the right way, this is one of the 'things' that I called barbaric.

There is more. I will continue.

Thanks

That is so true. I mean OK, I do not think you can *blame* the parents for not knowing how to interact, (about as much as you can blame the autistic for being autistic). It is more that when they REFUSE to learn how to do so, that it becomes something that they are "to blame" for.

I do think it would make a massive difference to parents if they were by default given information and offered basic training in this when a child is diagnosed.

I mean OK you'd think a parent would go out of their way to find out everything possible, but many seem to be so overwhelmed that they end up stickin gto what they know, and then end up confused why their child behaves OK in school or therapy but not at home (of course inconsistency is about the worst thing for an autistic child!).

Isabelle said "Parents need also education. I have seen parents aggravating the 'behaviour' of a non-verbal autistic. In my case I was taught by several teachers I learn to be calm, collect, and to no react. To speak in soft voice. To tell him what to do instead of scream 'no' or 'don't do that' with a matter-of-fact voice."

I totally agree with that Isabelle, for non-verbal, semi-verbal, and verbal. My son has had teachers who are proud to boast of their years of experience, and yet they haven't grasped that basic concept yet.

Noetic wrote

Surely you can't be serious. Did you actually READ the preceding post? Just about everything mentioned in it was barbaric.

Why do you consistently argue long and hard to defend the status quo, Noetic?

Did YOU read her post? She clearly stated that she EDITED it after I responded to elaborate on what she meant!

My post referred to the original version which was a bit vague and did NOT contain the information that was later added. Hence the comment that she has now edited and added to the post!

Also, how exactly do you justify declaring my post "defending the status quo"?

Unlike your usual vague complaints and demands, I actually made suggestions for ways in which the status quo could be changed for the better - how does making suggestions for improvement equate to "defending the status quo", precisely?  :?

Paradoxical drug effects are typically found in children. Barbituates tend to rev children up which is why they are prescribed Ritalin, a stimulant, to calm them. This is because children do not metabolize drugs as well as adults. I would argue that this is equally so for autistic people, so it doesn't surprise me that they would experience the same thing.

Personally, I do not think those drugs are good for ANYONE. There really is no science behind it, just marketing. An excellent book on the subject is Toxic Psychiatry by Peter Breggin. Unfortunately, his ideas about autism are completely outdated and wrong (he only talks about autism for about two pages, though) but he fully supports the wishes of parents NOT to medicate their autistic children.

And I used to work with an agency that worked with the developmentally disabled. And the way they treated their autistic clients was appalling. And when they found out that I was also autistic, they tried to cheat me out of my pay (they still owe me for 17 hours, but it's more trouble than it's worth to get it back). They treated all autistic people as if they were retarded, including me, but since I quickly lost all respect for them, I didn't care. It only made it easier for me to lie, cheat, and steal to protect my client from them as they were slowly driving him to suicide. I actually found the smoking gun document that proved to the state that my client was being abused so he could switch agencies. And they had no idea that I was the one that did it because they thought I couldn't possibly be clever enough. (And I also learned that lying could be fun and is abysmally easy if people think you're stupid.)

They were totally blind to my client's distress, and would tell him to shut up if he got noisy. And then they would dismiss my interpretations of his behavior because I was not an expert and had no experience. The fact that I was similarly wired and had some idea what he was experiencing mattered not at all. They just wrote both of us off as stupid and not worthy of account.

My supervisor loved to talk about her years of experience, but her way of dealing with autistic people was manipulative and abusive. My client was scared shitless of her and he would scream for hours in anticipation of her coming. She was also incompetent. Towards the end, she completely neglected to buy food for my client. I ended up buying groceries out of my own money so the guy wouldn't starve.

The tragedy was that no one took the time to notice that even though the guy could barely talk, he was extremely intelligent. I would say he was even smarter than me. If he wanted to ditch me, I stayed ditched. He was impossible to find if he didn't want to be found. I also swear that he was psychic. I was trying to get him to use the phone again. He had developed a phone phobia due to a previous abusive caretaker, whereas he never had a problem with the phone before. The phone rang and I asked if he wanted to answer it. He said no. I asked if he minded if I answered it. He said, "Don't bother. There's no one there." I picked up the phone, and it was a recording.

I'd probably have a phone phobia too if I received phone calls from a recorded voice!

Lilbangladesh, the things that you wrote about in your post are very disturbing. It would be interesting to know what country these things happened in, if you want to reveal that much information.

I don't agree with you that stimulant drugs are not useful. There do seem to be plenty of studies showing that stimulants like nicotine, caffeine and prescription stimulants can enhance cognition or performance in certain situations. I do object to kids being given dexxies or Ritalin instead of an accurate diagnosis or genuine understanding and support. That I object to.

This was in New York City. Good Lord, everything this agency did was against the law. I wasn't even properly trained, and they violated labor laws with me, but it's not as if the state of New York could be bothered to enforce the law. That man is out of the hands of that horrible agency, but they're still in business torturing other people.

And there is a difference between OTC drugs that one can administer oneself (and I admit to being a caffeine freak) and powerful psychotropic drugs. Of course caffeine can enhance performance. So can vitamins. Coffee helps prevent colon cancer by making you poop, even. These are relatively harmless substances. Risperadal and Ritalin are not and forcing anyone to take those drugs is a crime. No one has had their brain and body seriously damaged by caffeine.

I didn't think Risperdal was a stimulant. I thought it is one of those horrid neuroleptic/antipsychotic drugs. Have you seen this web site?

Autistic People Against Neuroleptic Abuse (APANA) http://www.dinahm.pwp.blueyonder.co.uk/

It doesn't surprise me that caffeine might prevent colon cancer by keeping things moving along. If you have a child with constipation just a few sips of coffee does the trick.

They are both psychotropics though. Anything that affects the mind is a psychotropic drug.

Neuroleptics aren't good for anyone.