This sounds like me.
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[quote=Amy]Many parents try 'cures' like MB12 shots, and they use them on aspie kids too.
Are you aware that any cure could easily be forced onto adults with autism?
People with conditions like bipolar and schizophrenia can be forced to have treatment, so why would autism be treated differently if something became available? This is a lot truer than tou may realize.
It may be hard for you to see it from our perspective.We have met adults with autism who are homeless and are not getting the services they need, meanwhile the general public are focusing on a cure for small children. Where is the balance? Here again,I must agree with you.This is a MAJORproblem that has not been addressed.I'm surprised to see this statement here,we have another goal in common.
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From what I'm told, the immunological issues associated with autism are now being compared to HIV/AIDS, and there may be some cross-over in the research. Same goes for Alzheimer's-similar things are happening with the two distinct disorders.
NO SERIOUSLY WTF? THIS CONTRADICTS ALL OF THE PRESS THEY PUT OUT.They give you no clue,either on their website,or in any of their literature,that they have read any of the research I have about what I have called "autoimmune AIDS",or the autoimmune dementia that can occur in autism.
WOW! This blows me away.Please Amy,I beg of you,please send me a PM with this woman's email address !
Learning this was worth joining this board alone!
As far as showing a fair representation of autism, we absolutely do talk about and show AS, HFA, LFA, PDD--virtually anyone that could be identified with autism. I think the issue you have is as much with the media as it may be with organizations like Cure Autism Now. The family most commonly associated with Cure Autism Now are Jon Shestack and Portia Iversen's family. Dov, their oldest, happens to be severely affected and non-verbal. However, in most cases, we are not actively pitching stories--we help educate reporters and connect them with all sorts of families. American media are very interested in the complexity of autism these days and often cover stories of successful treatment and productive adults with autism.
When I said that we must show children that are more severely affected, my point is that we can't not show them--we are funding research and biomedical treatments for those kids. Our whole organizational mission relates back to those kids and familiarizing people with the challenges they face is essential.
Sounds good to me.
So does this.
"Matthew Belmonte's research was into functional magnetic resonance imaging, which looks at brain functions. Okay, I see that Matthew is listed at ARC. But it still doesn't sound like he's the guy you're talking about.
The reason a lot of families don't understand the protesting is that,although they know there are people with autism that don't want to be cured, we are not looking to force a cure or treatments on anyone. I know it's more complicated than that, but what I'm getting at is that these families don't understand why anyone would want to stop the work that organizations like Cure Autism Now are doing to develop biomedical treatments and to help make a better life for their kids. Many kids express their desire to learn to speak, to connect with others and to lead more productive lives. This is what those parents want for their kids. I'd ask you to just imagine if Cure Autism Now or NAAR sent protestors to Autistic Pride Day to oppose your mission. (Don't worry--we're not!)
Talk soon,Hillary"
I replied -
The problem is that there is no guarantee that people won't be forced, people with autism were still forcibly sterilized by law until the late 1980's in sweden for instance. Do you know that at in Mass. that autistic kids get electric shock treatments as therapy?
They have to wear a device that shocks them if they misbehave. They don't get a choice about that, why would they have a choice about a cure?
If you want more info on the Judge Rotenberg Center there is much on the AFF site, we are actively campaigning against their treatments.
"I know it's more complicated than that, but what I'm getting at is that these families don't understand why anyone would want to stop the work
that organizations like Cure Autism Now are doing to develop biomedical
treatments and to help make a better life for their kids."
OK Amy,let me ask you this,has CAN! actually come out and condoned actions like those of The Judge Rotenberg Center ? Why not have people protest them instead ?
OK,let me say this,I am not a "curebie".Nor do my personal experiences give me any reason to "celebrate autistic pride".Autism,and the various comorbid diseases that go with it,have made my life miserable.I come at this,with an entirely different perspective than either side.That's not the point of this reply.
Hillary here,has given me an entirely different viewpoint on CAN!,than the one they put out there for public consumption.If the emails here are any indication, they get it,they can be worked with.Yes there are differences of opinion,but her side of this exchange,does not tell me they are insurmountable.