Aspies For Freedom

That was the life of an adult autistic.

Isabelle,

Best luck to you and your son. I hope this petition will help get things changed in Canada; I've heard how difficult things are there for adult autists and disabled people.

Danny's art work is fantastic. I hope we hear that he's back to work soon, and feeling better.

You're a good person, Isabelle, to work so hard to help not only your own son, but others as well.

GOOD LUCK!

Sassy

Welcome Isabelle!  I signed your petition.  The more we can do to educate the ignorant politicians, the better for all of us.

Best wishes to you and your son.

Sorry to hear you're having such difficulties up here in Canada, it seems this is happening all too often with the government and medical system. It makes you wonder if they consider it one of the best, then why are they willing to destroy lives because of it? I'll be signing the petition. Danny's artwork is wonderful.

Hi Isabelle, you said "Since he had a serious adverse effect to Risperdal that almost killed him we have been trying to protect him from psychiatric drugs and from diagnoses of psychiatric disorders that he does not have."

Was he given the risperdal only once and had that reaction and then it was stopped? Or was it given over time and he continued to have the severe reaction?

Do you want one drug free home, so that people have a choice, or would you like many/most to be drug-free?

Important note to anyone signing the petition -

DO NOT give your full name and address when you sign, it appears for all others to see and could give personal security problems. Unless you are happy for others to see your details, simply put USA, UK, Canada, etc or a region of your country.

Thank you all for your support, know is very much appreciated.

Hi Isabelle, and welcome to AFF. I have gone and signed the petition, and read quite a bit of what is on Danny's website. I love his art, the colours are so beautiful.

You know, there is a class action suit against the makers of Risperdal underway right now, because not only is it not a wonder drug, but has done awful things to many other people as well. This is the info I got from http://www.classactionamerica.com . You have to be a member to get to the info, but membership is free.

Risperdal Linked to Stroke, Other Side Effects
The Kahn Gauthier Law Group is investigating possible legal actions against pharmaceutical company Janssen Pharmaceutica Products, LP, on behalf of patients who have been harmed by the antipsychotic prescription drug Risperdal (risperidone). In a warning letter sent to U.S. healthcare providers on April 16, Janssen has acknowledged 37 reports of stroke or stroke-like events, including 16 deaths, among elderly patients with dementia who have taken the drug. Janssen has been criticized for not taking this action much sooner, especially as it sent a similar letter to Canadian healthcare providers in October 2002. The legal actions under investigation would seek to recover compensatory damages from Janssen for the harm caused by Risperdal.

According to Janssen, Risperdal is used by more than 10 million people worldwide and is the world's number one prescribed antipsychotic drug. Risperdal was approved for use in the U.S. on December 29, 1993.

Side Effects

In addition to these newly-disclosed risks, two potentially very serious side effects have been associated with Risperdal.

One is Neuroleptic Malignant Syndrome (NMS), a potentially fatal symptom complex. Clinical manifestations of NMS are hyperpyrexia, muscle rigidity, altered mental status, and evidence of autonomic instability (irregular pulse or blood pressure, tachycardia, diaphoresis, and cardiac dysrhythmia). Additional signs may include elevated creatine phosphokinase, rhabdomyolysis, and acute renal failure.

The second, Tardive dyskinesia, is a syndrome of potentially irreversible, involuntary, dyskinetic movements. There is no known treatment for tardive dyskinesia, although the syndrome may remit, partially or completely, if antipsychotic treatment is withdrawn.

Other side effects possibly linked to the use of Risperdal include the following:

Psychiatric Disorders:

Frequent: increased dream activity, diminished sexual desire, nervousness. Infrequent: impaired concentration, depression, apathy, catatonic reaction, euphoria, increased libido, amnesia. Rare: emotional lability, nightmares, delirium, withdrawal syndrome, yawning.

Central and Peripheral Nervous System Disorders:

Frequent: increased sleep duration. Infrequent: dysarthria, vertigo, stupor, paraesthesia, confusion. Rare: aphasia, cholinergic syndrome, hypoesthesia, tongue paralysis, leg cramps, torticollis, hypotonia, coma, migraine, hyperreflexia, choreoathetosis.

Gastrointestinal Disorders:

Frequent: anorexia, reduced salivation. Infrequent: flatulence, diarrhea, increased appetite, stomatitis, melena, dysphagia, hemorrhoids, gastritis. Rare: fecal incontinence, eructation, gastroesophageal reflux, gastroenteritis, esophagitis, tongue discoloration, cholelithiasis, tongue edema, diverticulitis, gingivitis, discolored feces, GI hemorrhage, hematemesis.

Body as a Whole/General Disorders:

Frequent: fatigue. Infrequent: edema, rigors, malaise, influenza-like symptoms. Rare: pallor, enlarged abdomen, allergic reaction, ascites, sarcoidosis, flushing.

Respiratory System Disorders:

Infrequent: hyperventilation, bronchospasm, pneumonia, stridor. Rare: asthma, increased sputum, aspiration.

Skin and Appendage Disorders:

Frequent: increased pigmentation, photosensitivity. Infrequent: increased sweating, acne, decreased sweating, alopecia, hyperkeratosis, pruritus, skin exfoliation. Rare: bullous eruption, skin ulceration, aggravated psoriasis, furunculosis, verruca, dermatitis lichenoid, hypertrichosis, genital pruritus, urticaria.

Cardiovascular Disorders:

Infrequent: palpitation, hypertension, hypotension, AV block, myocardial infarction. Rare: ventricular tachycardia, angina pectoris, premature atrial contractions, T wave inversions, ventricular extrasystoles, ST depression, myocarditis.

Vision Disorders:

Infrequent: abnormal accommodation, xerophthalmia. Rare: diplopia, eye pain, blepharitis, photopsia, photophobia, abnormal lacrimation.


I think it is terrible that they drug just about everybody in those group homes, and it isn't necessarily to help the residents, but to make them all zombies to make their work easier. I am glad you brought Danny back home, so he can become his normal self again, and once more produce his art.

What is the reason she wants to put him on Risperdal to begin with? I don't understand. I know a lot of kids are on it who have Tourette Syndrome (unjustifiably so in my opinion). It stifles their creativity, makes them gain weight and transforms them into nice, easy little zombies.

I am glad you won't let them put your son on it! It upsets me every time I hear a child is taking Risperdal.

Hi Uschi,

Well, that's a good question. Why would they recommend it to a child who is progressing well, and is happy? I think its just the new rote answer of the moment.

Doctor:

"Your child has autism? Have you thought about trying risperdal. Its been shown to be very useful for children with autism. You really should think about trying it." and "Thousands of children like yours have seen improvement on this medication, its very safe." :roll:

I bet those exact words have been spoken hundreds of thousands of times in doctors offices around the world.

I bet Isabelle heard something similar all those years ago. Back then it was prescribed to young people with severe autism, now its prescribed to young children with high functioning types of autism as well.

Unless there is an outcry, it won't get better.

What I am wondering is, what does it improve? I have never been able to figure out why exactly they give it, and what the expected positive outcome is supposed to be. It can't possibly take away the autism. So, what DOES it do that's good?

My guess is, make life easier for the teachers and supposedly for the parents. But what about the child? Will it make life better or worse for the kid? Isn't that what should be the first consideration? Unfortunately, I know it isn't. It's all about 'managing the condition'  :-(  for the benefit of the people who have to be with the child. Do they ever consider that there could be people who like the kid just exactly for he/she is? Who'd rather not have the child's mind altered in such a way that they don't even recognize the original child any more?

Okay, I better stop, it's definitely one of my pet peeves as my above rant must show.

I remember one speaker at a conference my family and I attended was a doctor that spoke of medications that were beneficial to autistic children.  We were curious to see what he had to say, so we came in to hear him speak.  

I remember he was trying to explain how there were drugs that could stop (cure?) your child from stimming ...such movements like flapping.  When my oldest son raised his hand in the middle of this talk and asked the doctor what harm does stimming have on the child or anyone around the child, the doctor seemed perplexed and said stimming was not harmful, but that the drugs would keep the child from flapping and make him appear more like others.....at that, my family and I, taking up a whole row in the room....got up and left the room.  We had heard enough from this quack  :evil:

Hi guys. I didn't realize about the cautions with risperdal and seizures, that's something to keep in my arsenal. I'd already made my mind up to the extent that I hadn't checked for counterindications with seizures.

I'm glad you told me that Bonnie, its something to keep up MY sleeve, LOL as this doctor in her letter recommended to my pediatrician keeping its use up HIS (that's a quote).

Hey, I don't want to turn this thread too far from its original  intention (I'm really hoping for more signatures for Isabelle!). But just to let you know, this doctor made the recommendation of risperdal BEFORE she checked her facts about my son's case. I realize that her mention of using this drug is now a moot point...she's revised her original assesment after our visit, I have a feeling this recommendation is one of those "I'm always right" things. You know how it goes with doctors, they can't bear to back down once they've given you their opinion. I don't think she has any legs to stand on with this.

Bonnie, no worries, my husband and I are in complete agreement about the medication, and are VERY strongly against the use of any SSRI's for our son. I'll move back to the US and live with family before I'd let them force a medication on him that he shouldn't have, if it came to something as bad as you've suggested.

No, you're not paranoid, I've heard of similar scenarios to what you've suggested, happening here in AU, as well as in the US. But they're few and far between, and honestly, I've let my doctors know I've DONE MY HOMEWORK on these things. I don't think there is any way they could force treatment, and as its just been a suggestion at this point, I don't think they WOULD try to force treatment.

Here is where our story meshes with Isabelle's. Our son is at home, and we have control over his treatment. She has brought her son home from the group home SO HE WOULDN"T be forced to take these medications. As long as he was out of her care, its my understanding that she had no say over his treatment.

Isabelle, I wish you'd tell us more. Is there a danger of Danny being forced back into the group home at this stage? And if he is, would he or you have any say in his medication?

I think it is an outrage that once people like Danny are in group homes, that parents have no control over important decisions any more. So, they only have two choices: Either keep the adult child at home to look after him/her themselves and making sure of their wellbeing, or to give up any control over important decisions like medications when they send their kids to live in a group home.

It is hardly a fair choice.

This all sounds like a total nightmare, Isabelle. Especially when you were looking after an ill husband and couldn't have Danny at home, but knew that he was being mistreated. It must have been a terrible amount of stress for you. And it must have been very traumatic for Danny, too.

How do you look after him now? Are you able to work, or do you have to stay home to look after Danny? Do you ever get any time off, is anybody helping you? Can you leave him alone at home? Please excuse all the questions, but I am curious as to what it's like for you.

I looked at his photographs, and he looks like a very sweet, harmless person to me (and very handsome). Does he talk at all? How do you communicate?

Okay, I guess I am being an Aspie here, my questions never stop.