a disturbing trend in this forum favoring autism speaks

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Once again, they wanted to eliminate autism when they thought it was a disease that was capable of being eliminated. They now know better.

They HAVE explicitly stated that they are not trying to find a prenatal test. They went on record in the interview that I conducted.

Go to their website and do a thorough investigation of their motives for genetic research. They have a science section. Look past all the easily misinterpreted PR and see what they are actually doing.

Less than 100 years ago that screen your looking at would have been considered a pipe dream.

Are you really so selfish that you don't care because you won't be around to see it?

My past efforts have emphasized the need to keep things public.

Another interview for Wrong Planet would be very easy to organize. What would be asked? I wouldn't want to be redundant.

The last time I conducted an interview all hell broke loose, even though I collected the questions from people on the forum. I wouldn't want that to happen again.

True it was a fiasco for you. I could see that you would be reluctant. But you have the contacts in autism speaks and that's what matters. If you want to avoid a controversy say it was a community effort or even just use my name I don't really care who has to be stuck with potential blame as long as the questions are answered well. But at any rate just pm me to start the discussion on that because a debate here could get long and hijack the thread.

Mind linking to a page where they make this specific statement?

Not at all.

http://www.aspiesforfreedom.com/showthr ... ?tid=23241

And I will go ahead and copy the questions and answers regarding a cure and a prenatal test...

2. Autism Speaks funds the Autism Genome project, described, on autismspeaks.org, as, "the largest study ever conducted to find the genes associated with inherited risk for autism." What specific benefits might this research provide the autistic community? Why might so many autistics oppose such research?

A:  We are working hard to understand the biological basis of autism as this will help us target medical treatments to the individuals who need and want them. We now know that autism isn’t one condition, but rather many conditions with many different causes and biologies. Genes are one way of helping to categorize the different autisms so that treatments can be more effective. For example, some, but not all, people with ASD have sleep problems and, in some cases, it appears to be linked to a gene involved in melatonin production (melatonin regulates our sleep cycle). By identifying individuals with that genetic variation, we can hopefully identify those people who would be most likely to respond to melatonin supplementation. This is just one example, but there are many others like it. Genes are one of the best ways of subtyping and understanding the biology of autism so we can develop interventions that can help people with medical problems, such as sleep and GI problems, seizures, food allergies, and so on.

3. In 2007, Autism Speaks merged with Cure Autism Now. Does finding an autism cure continue to be one of your organizations primary objectives? Do you believe it is legitimately possible to "cure" autism, and if so, what exactly would such a cure entail? What characteristics would be removed from a cured individual and what characteristics would remain?

A: Our organization has four main objectives – to raise awareness of autism, fund research into the causes, better diagnosis and more effective treatments of autism, to advocate for families (for instance – insurance coverage for validated treatments) and to providing resources for families such as the transition toolkit for adolescents who are becoming adults, community grants to expand community services, create housing and much more, as well as information on where to get assistance around the country.

As our mission relates to “cure”, our goal is to reduce suffering associated with autism, in all its forms. Some would call that a cure. Others would call it remediation of disability. For others, it means acceptance and empowerment.

One of the things that is so challenging about autism is the fact that there’s so much variation in the way autism is expressed in people. Some individuals can have a productive and creative life, and they aren’t looking for a cure. They’re interested in being accepted and getting access to services to help them adapt to the world with their special skills. At the other end, there are individuals severely affected who have significant medical conditions, like GI distress and have never spoken. For those individuals, the prospect of a cure for autism is really important because to that person “cure” means being able to communicate and free of pain. That results in a lot of different perspectives of where our priorities should be.

4. A growing body of scientific research suggests that we are rapidly nearing the development of an amniocentesis test to detect autism, much like the procedure currently used to detect Down’s syndrome. Does funding provided by Autism Speaks in any way enable the development of such a test? If a prenatal test for autism was developed, does Autism Speaks believe that it should be made available to the public?

A: Autism Speaks is not funding any research to develop a prenatal test for autism. That is not our goal. The genetic research Autism Speaks has funded is aimed at finding biological causes, as described above.

Wow, that's changed my opinion of them completely. Can't honestly believe that's come out of Autism Speaks

Shocking, isn't it?

I think it is very important for people to read and reread this interview.

I also wrote an introduction called Speaking and Listening, which I have posted here.

I've complained a lot about WP over the years, and I've had various arguments with moderators and even, at one point, Alex, but I'm still here. So I'm thankful that this is a relatively free forum.

I reckon Autism Speaks need to let me in on this whole thing, how do I get them to fly me out to write on their blogs and give presentations?

well what i found with that interview was that it just really raised more questions. he said that eradicating autism was never a goal of autism speaks. why did they used to say it was then? i would also suggest to autism speaks that they broadcast their apology on tv as a psa right now. because while they admitted a grudging apology to a small audience after a lot of push and shove they haven't intended that apology to reach a larger audience in the general public. the apology should be televised. along with ads to help hire autistic people.

Pm me any questions that you are interested in having answered.

Also, over on the computers forum I have a post called "Where are all the Autistic Techies? Need Your Help" about getting involved with Hacking Autism.

Here is the link...

http://www.wrongplanet.net/postt178929.html

Alex is my friend. He is a cool guy and I talk to him regularly. He was also unjustly crucified for attempting to work with Autism Speaks and have a positive influence.

I've been called a sociopath (Ooh, I HATE that word), a Nazi Sympathizer, an Uncle Tom, the autistic anti-Christ, a hack, a sell-out, an attention whore, a supporter of genocide, etc... My family and friends were stalked online. People spent HOURS attacking me. A rumor was spread by someone that I was on a lethal medication combo and I received pms from people scared for my life.

What did these people accomplish? They made Autism Speaks look really, really good. Congratulations to them!

They did that because you work at Autism Speaks? Was that members of this forum?



Indeed, resorting to those tactics does nothing to help a cause at all.

I don't work at Autism Speaks... not exactly. After the interview they hired me to do a bit of writing and I was happy to oblige. I was banned elsewhere for being an undercover employee of Autism Speaks all along, which is absurd! I live with my parents!

Some of these attacks occurred here, but many more occurred elsewhere. People over here were quickly reprimanded for their inappropriate attacks.

@tambourine-man that was unacceptable. i was not one of these people. i understand their fear. fear makes you a little crazy sometimes. but i think at heart most of them meant well but got out of control. i would forgive them. the thing is you are a little bit of a celebrity, whether you like it or not, and people care about you. i think it is ridiculous that someone stalked your family. their time would have been better spent stalking autism speaks.

Oh trust me, I know you were not one of those people. I know who they were. I've forgiven them and moved on, which is why I'm not naming names.

I'm a celebrity? I don't know about all that, but thanks!