04-09-2008, 08:17 PM
04-10-2008, 08:00 AM
I think Autism Speaks should change what they do before they change what they say.
04-10-2008, 08:20 AM
Gareth Wrote:
3 - Cease any and all support for chelation and ABA
They should at least stay neutral on the controversies if they want to represent the autism community.
04-10-2008, 12:12 PM
I'd like to point out that I believe it is a common practice for newspapers and magazines to alter the text of people's "Letters to the Editor". They excuse this practice by claiming that this is editing to make over-long letters more brief and readable, but I know that the editing can sometimes alter the meaning of contributions. You do have copyright on everything that you write the moment that you write it, but that fact is in practice irrelevant to the issue of a publisher altering/editing your text.
I would also like to say that there is a long, long tradition of sell-out autistics who sell books and go along to conferences run by The Establishment, and make a living as after-dinner speakers etc etc, all the while rubbing shoulders with curebies and autism experts who can't tell the difference between a psychopath and an autist, all the while lending credibility to the big, powerful organizations and the powerful people. I hope I am never that hard-up for a buck that I even think about going down that road.
In my experience it is a waste of one's time even communicating with most academics and other power-trippers who do not have a clear and consistent pro-neurodiversity attitude. I have never been pleasantly surprised.
I would also like to say that there is a long, long tradition of sell-out autistics who sell books and go along to conferences run by The Establishment, and make a living as after-dinner speakers etc etc, all the while rubbing shoulders with curebies and autism experts who can't tell the difference between a psychopath and an autist, all the while lending credibility to the big, powerful organizations and the powerful people. I hope I am never that hard-up for a buck that I even think about going down that road.
In my experience it is a waste of one's time even communicating with most academics and other power-trippers who do not have a clear and consistent pro-neurodiversity attitude. I have never been pleasantly surprised.
04-10-2008, 03:04 PM
honestjohn Wrote:
morning_after Wrote:
I keep seeing the word chelation come up. What does that mean to all of you?
***************
My father and mother (who are into homeopathy) do/did chelation for a couple of years. My dads father had heart disease - I think that is why my Dad does chelation..
What is ABA?
I keep seeing the word chelation come up. What does that mean to all of you?
***************
My father and mother (who are into homeopathy) do/did chelation for a couple of years. My dads father had heart disease - I think that is why my Dad does chelation..
What is ABA?
Isn't chelation alternative for heart diseases?
ABA is behavior modification therapy by rewarding wanted behaviors, often controversial because it is sometimes used with punishment, where Judge Rotenberg Center should be the extreme example, and the wanted behavior tend to be a copy of the behavior of a neurotypical child - not necessarily with much practical benefit.
An example of a useful thing ABA could be used to teach is brushing teeth.
04-10-2008, 03:52 PM
Because sometimes other teaching methods have failed, it's just me trying to fetch an example of a practical skill that some use ABA to teach.
04-12-2008, 04:52 AM
earthmonkey Wrote:
Gareth Wrote:
[ABA] Seems a horrendously traumatic way to teach it.
I don't see how it would be traumatic if it doesn't use aversives, or teach people to be ashamed of their autistic traits. As far as I know, not brushing your teeth is not a part of being autistic.
It is my understanding that there are at least two different ways that being autistic can impact on ability to brush teeth. Firstly, I think the action of tasks such as tooth brushing and doing up buttons can be difficult or impossible due to poor fine motor skills and/or executive dysfunction type stuff (which I really don't understand myself as I've not seen it first-hand).
Secondly tooth brushing is a sensory activity, and for people who have sensory hypersensitivity (or the widely used label for it; Sensory Integration Disorder) this can be difficult. When one of my kids was too young to brush their own teeth I had a terrible time doing this for the child as I was constantly setting off a gag reflex, and we had to stop constantly due to retching. This child now brushes their own teeth, as a person's own touch does not "set-off" the senses as much as the touch of another person. I had no problems like this with our other kids who do not have amplified senses. If you want to know more about this kind of thing look up info about "Sensory Integration" put out by OTs.
I doubt that Pavlovian training like ABA would in any way remedy issues such poor motor ability or sensory hypersensitivity.
04-12-2008, 04:57 AM
honestjohn Wrote:
I used "positive reinforcement" with all three of my kids. I gave them charts of the things I wanted them to eventually do for themselves - they got the benefit of not having me hover over them while they brushed their teeth and other day/night routines. WHat is wrong with positive reinforcement? ---still not sure what ABA stands for.. is that like behavior modification?
Does the name Pavlov ring a bell? 
04-30-2008, 01:16 PM
morning_after Wrote:
Ok, nicolas posted this on WP
Hello all.
Just thought I'd share some updates on this whole topic.
First, I met this week with two advisors in non-prfit organization and fund-raising about helping me put this whole thing together. After reading everyone's concerns, I wanted to make sure to do these completely outside of AutismSpeaks's purview. We had a long dinner and talked about the specifics of getting some rcognizable names on-board and for how to get some attention to them on a national level.
Second, amusingly enough, I called the office of Special Projects at AutismSpeaks to follow up with them about issues such as "no right to re-edit" etc. The lady didn't call me back. A week later I called again. No response. I made a third call. Still nothing. I am going to try again by email this week.
I suppose she might just be very busy, but it looks more and more like the offer was completely insincere. I wonder what the best way to make THAT fact known might be...?
Nicolas also sent me this message when I sent him the questions you asked
Autism Speaks has not only not provided a means for submission on their site, they are not responding to phone calls or emails about the topic now! I'm more than a little peeved.
I still plan on doing the videos independent from their organization, but may need some time to set it up.
My direct email is nicho@chipchair.com. People can submit to me there for the time being if they are interested in being part of the project. Just note, submitting does not mean someone WILL be part of it. My goal is to get stories from all across the spectrum and across the country (possibly the globe..?). And selection will probably not begin for a couple of months.
But by all means, share them. In fact, I encourage people who want to share their stories to start a thread on Autism Speaks' message board as well mentioning the project and why it is happening without that group.
Nicholas
PS Thanks for following up with me and collecting those questions
Hello all.
Just thought I'd share some updates on this whole topic.
First, I met this week with two advisors in non-prfit organization and fund-raising about helping me put this whole thing together. After reading everyone's concerns, I wanted to make sure to do these completely outside of AutismSpeaks's purview. We had a long dinner and talked about the specifics of getting some rcognizable names on-board and for how to get some attention to them on a national level.
Second, amusingly enough, I called the office of Special Projects at AutismSpeaks to follow up with them about issues such as "no right to re-edit" etc. The lady didn't call me back. A week later I called again. No response. I made a third call. Still nothing. I am going to try again by email this week.
I suppose she might just be very busy, but it looks more and more like the offer was completely insincere. I wonder what the best way to make THAT fact known might be...?
Nicolas also sent me this message when I sent him the questions you asked
Autism Speaks has not only not provided a means for submission on their site, they are not responding to phone calls or emails about the topic now! I'm more than a little peeved.
I still plan on doing the videos independent from their organization, but may need some time to set it up.
My direct email is nicho@chipchair.com. People can submit to me there for the time being if they are interested in being part of the project. Just note, submitting does not mean someone WILL be part of it. My goal is to get stories from all across the spectrum and across the country (possibly the globe..?). And selection will probably not begin for a couple of months.
But by all means, share them. In fact, I encourage people who want to share their stories to start a thread on Autism Speaks' message board as well mentioning the project and why it is happening without that group.
Nicholas
PS Thanks for following up with me and collecting those questions
NAAR and CAN (the 2 who merged into autism speaks) both had similar behaviour when contacted by individuals on the spectrum. Try contacting them with a different email address and pose as a parent and see what response you get. If they respond faster, that says a lot.
05-01-2008, 06:51 PM
Have they yet to give a reason for this?
05-02-2008, 09:01 AM
While looking on the autism speaks cite to get that evidence of chelation I came across this:
http://www.autismspeaks.org/community/fo...php?t=6611
Quite a sad case, if autism speaks offer no help whatsoever while they're on record as threatening to sue an autistic child and their current state of not following up on this "offer" then it speaks volumes.
http://www.autismspeaks.org/community/fo...php?t=6611
Quite a sad case, if autism speaks offer no help whatsoever while they're on record as threatening to sue an autistic child and their current state of not following up on this "offer" then it speaks volumes.
05-02-2008, 08:28 PM
Ivar T Wrote:
Seems abit like Autism Speaks is just charity that gives money to poor snobs unhappy with their children - not really part of the autism community.
Please point out that part on their tax return:
http://www.aspiesforfreedom.com/autismsp...0_2006.pdf
If you excuse the title, here's some choice extracts:
http://www.aspiesforfreedom.com/autismsp...d_dirt.pdf
05-03-2008, 12:00 PM
morning_after Wrote:
Which is bs.
?
05-04-2008, 05:13 AM
My confusion was as to the meaning in this context:
"Which is bs" could mean multiple things in the above post.
"Which is bs" could mean multiple things in the above post.
05-05-2008, 08:59 AM
pikajedi4 Wrote:
damned if we do, and damned if we don't.
if we go along with it, we lend it our support, and make ourselves look like hypocrites
if we DON'T go along with it, they turn round and say, "see, we told you so; they have no talents".
if we go along with it, we lend it our support, and make ourselves look like hypocrites
if we DON'T go along with it, they turn round and say, "see, we told you so; they have no talents".
It's a moot point because they don't seem to actually be taking submissions for anything approaching formal publication but we have other venues to show creative talents. What people are more likely to do is say "hey, look - autism speaks aren't so bad, yet these crazy people still won't accept that".
To me, it's quite comparable to the gates foundation giving to a stereotypical "good cause" while mr gates himself and his company (microsoft) are still doing all their usual tricks. It's a "hey, look - I may have got rich through dishonest means but i'm a good guy" trick. Autism speaks are trying to do a "hey, we really do care about autistics" trick. The problem of course is that even if they were in this case serious, publishing some writing means absolutely nothing practically and in fact would probably just serve their PR more.