Report on my progress at autism speaks

Post Reply New Topic

about a month ago i joined an autism speaks chat forum with a mission to represent the neurodiverse opinions of this site on there. i feel i have made about an inch of progress so far. the biggest problem for me is my own diplomatic skills. i am a little over logical and i make a lot of enemies. i think that is partly ok because i have stuck to my guns and made my opinions clear. while it is apparent that autism speaks no longer uses legal bullying tactics to suppress autistics, they have carried on their activities indirectly. there is a guy on there who is an anti-vax quack, and he has a whole team of yes men with him. what they do is they promote his quack cures and their conspiracy theories, and then when an autistic person questions them they call them "rude" and say that is against forum guidelines. the ironic part is that i am trying really hard to be civil and they are breaking the forum guidelines, but i have heard that mods have in the past banned autistics on these peoples recommendations, while still allowing them to run rampant violations of their own ToS on the forum. but i am not banned yet, and i am determined to spread the word to parents of autistic kids on there without being banned. I think the most important part of what i am doing is to convert "lurkers" people who read but don't respond. these people are undecided and can still be made aware of other opinions out there. and thanx to someone on this forum who told me about converting lurkers. it has helped me understand the real importance of my mission.

such has been my experience

When I talk to other parents, I carefully side step those sold on the vaccine connection. They are either lost to logic, or maybe they have a co-morbid condition that could explain the apparent connection, but mostly they need their scapegoat, and there is zero point challenging that part of their belief system. I can talk about the techniques we favor as "meanwhile" concepts, things that can add another "layer" to what they are doing with their kids. OK, I know that if my ideas work they will attribute it to the crap treatments, but I can't control that. What I can say to parents who are listening to both sides is that nothing occurs in a vacuum, and that those of us who have NOT pursued bio-medical remedies are achieving incredible and startling results, using the standards and terms from the other side, enough to be convinced WE have the answer.

I also talk about terminology, because there is a big gap in how different members of the AS community use words. You have to use the same as the person you are talking to, agree with or not (you can always couch it with, "as you use the term.")

Anyway, keep up the effort. Even when you can't see the progress, it is there.

Last edited by DW_a_mom on 26 Nov 2011, 2:51 pm, edited 2 times in total.

You may want to rethink your approach there. The same thing happens right here on WP, and I suspect for the same reason.

If you join any forum with an agenda to educate users there, you are more than likely not going to be welcomed by many of the users. Especially if you jump right in and start telling them what you think.

The best way to be heard in any "unfriendly" environment is to join up, and do nothing but listen and ask questions for a while. Nobody anywhere likes someone they don't know to suddenly start challenging their belief systems and offering alternative ways of thinking.

People listen to people they know. People listen to people they respect. People respect people who respect them. The best way to learn to respect anyone is to just do it from the beginning. Don't wait to learn how. Just do it. Tell yourself that even though what they believe doesn't make any sense to you, they have a right to and a REASON for thinking as they do. Respect their right first. Explore their reasoning second. Let THEM teach YOU first.

Take your sweet time getting to the point of saying anything like "I don't agree with that," or, "This is what I think and why." Take your time expressing dissenting opinions, and WAIT for them to ask you why you think the way you do.

I'm not saying you went in there guns blazing or anything like that. I haven't seen the forum there. I'm just trying to offer some ideas and strategies that might help.

Well you might want to do some more reasearch on it, because it seems "Cure Autism Now" has merged with Autism Speaks, and the name of "Cure Autism Now" disterbs me and makes me concerned on the issues of it.

that was a while back. they still have parent boards to represent those people. believe me i am wary of autism speaks and always doing research. i have heard of the issue you mention and i don't support genetic projects they have.

good advice as usual. the problem is it is a slow forum over there that might take a while.

Funny thing on the vaccine, I was the first child my mother had. So my dad insisted on me NOT getting the vaccines, as in getting MMR. Instead, he had me get each vaccine separate. So, my sisters later got the MMR. My dad, as a kid was like "see, look how smart he turned out compared to the girls, it's probably because of the vaccines!" Anyway, now I'm the one with the NVLD diagnosis. Fun.

that is ironic. pretty much disproves stupid people but o well.

9 year old Hannah Poling – Sept, 21 2010 – US Government pays $20 million in Legal Settlement For Vaccine Caused Autism Case

are you saying you believe it? not trying to sound confrontational but i can't tell from your statement.

http://autism.about.com/b/2010/09/10/poling-family-to-receive-1-5-million-from-vaccine-court.htm

http://digitalcommons.pace.edu/cgi/viewcontent.cgi?article=1681&context=pelr

There have been children that have suffered serious side effects as a result of vaccines. There are risks, and the government does pay out settlements to those whom have suffered the side effects.

There has never been a case where "Autism" was the cause of side effects from vaccines however, there are cases where autistic like symptoms are reported as a side effect of the vaccine.

The case that Aspie Ross presented was one of those cases, and this individual was determined to have a mitochondrial disorder, that may have contributed to side effects that occured as a result of the vaccination. This case was brought to court in 2002, and was settled in 2010.

The first link describes this case. And the second link is a peer reviewed article that investigates the cases that have been settled, and expresses the need for a congressional hearing, to investigate if some claims that were termed as invalid should be re-examined.

This is exactly what Autism Speaks is continuing to support study for, whether or not in rare cases underlying conditions like mitochondrial disorders, may make an individual more succeptible to ill effects from vaccines. This one case, suggest a possible link, that merits the kind of research that autism speaks is continuing to support.

There is still a real area of concern here; although it appears to be a fairly rare concern, it is still a real concern.

The symptoms that are autism like that have been reported, legally haven't been defined as Autism, but never the less, it is no wonder for the parents that do have children that suffer side effects in these rare cases, that they blame the vaccine for autism like symptoms. Furthermore autism like symptoms can result in a diagnosis, based on observation of behavior; as the article states it's a fuzzy area.

The only way to fully clarify the issue, is through further research.

From the first link:

If these real concerns are ignored by research and science, it will potentially lead to more distrust over vaccinations, in general, because the potential of a problem associated with mitochondrial disorder, vaccines, and autism like symptoms has been clearly identified in a court of law.

OP, i understand your approach on that site, and i use a similar approach when debating on WP. i am not really arguing with the individual who is responding to me (as i know i will NEVER convince them of my point of view). rather i am arguing for the sake of the lurkers who may be on the fence, and also for the people in agreement with me who are not bold enough to speak up. the opposing members and i are creating a framework of information for other people to draw their own conclusions, and i hope to be convincing enough to win someone over.

For whatever reason, the majority of people at Autism Speaks seem to be wearing blinders and are only interested in curing Autism, blaming whatever they can as a possible/probable cause for it. The ironic thing is, that for a group called Autism Speaks, there are no people with Autism speaking!! ! They should change the name of the group to NTs Speaking for Autistics.

SO is it any wonder you get a lot of hatred for trying to speak there…

More or less, that's exactly where the phrase came from. "NT" Grandparents of an autistic grandchild that lost the ability to speak, wanting to provide a voice for the child and others like him that could not speak.

In this recent Penn State statement the founders stated their first and foremost concern has always been those with autism that could not speak.

The focus wasn't on autistic individuals that could speak, it was on the individuals that couldn't speak, and the organization and parents attempting to provide a voice for them through awareness and research. There was personal concern that the grandson with autism was impacted by vaccination, so that was an area of focus as well.

There are other organizations both physical and in the world of the internet, that focus on Aspergers; Autism Speaks main focus has never been on Aspergers, they aren't suggesting it has been through that Penn State comment, although they seem to be putting some effort into Asperger awareness now.

The individuals with Autism that cannot speak or have learning disabilities, while officially welcome on sites like WP, are rarely identified and heard. Instead, there is a section where parents with children that have autism can gain support from each other.

On many internet sites the main focus is on people with Aspergers; one would expect that when one sees descriptive phrases like "Aspies for Freedom", "Aspieweb", etc.

They still talk about individuals that are more disabled with autism, however the focus is on Aspergers.

There is often talk about advantages of Aspergers, good grammar and spelling is desired, elements that are specific to a select population of individuals with Autism.

That's good, there are many expressions of autism, each organization, and internet site, serves a different need of support for those within the entire autism spectrum.

Given what the motivation was that founded the autism speaks organization, I don't see it as unusual that the focus has been on a cure, and remaining legitimate concerns associated with vaccines are still being pursued.

Other organizations started up as support organizations so people that had the ability to communicate well with written language, could gain support from each other online.

WP is pretty unique in that all opinions are allowed, and ability to express those opinions are defended.

When autism speaks says "autistic community", they aren't talking just about autistic individuals. They are focusing equally on autism and the family and friends of individuals with autism as community; there is no separation or barriers identified as "NT" in that community, instead it is people experiencing difficulties and struggles with autism, along with the families and friends that are attempting to help those with difficulties and struggles.

I think if people can understand how different the circumstances of the autism spectrum can be for those that experience it along with the families, ranging from those that are completely incapictated, requiring 24 hour support, to those that work in research institutes, perhaps everyone can be more accepting of the needs of support that vary greatly, in the areas of moral, physical, and financial support.

At this point Childhood disintegrative disorder and Retts Disorder are part of the Autism spectrum, just as Aspergers is. Those two disorders are rarely discussed, because they are rare.

For this reason there are separate internet sites/organizations where the parents of those children can gain support from each other. People understand how disabling those conditions are for individuals that have them, so it's not likely that many are surprised that there aren't individuals with the actual disorders communicating there.

In effect this is the purpose that Autism Speaks has served for support, one more for parents of individuals, specifically children, that are seriously disabled by autism, many of whom cannot speak, that ordinarily wouldn't seek support on an internet site. There is a specific need for that support, and autism speaks provides it.

The organization does absolutely nothing for me; there is nothing in my entire life, that was influenced by it until I came to this site and became cognizant that the organization exists.

That's okay, my needs were met through other avenues, I found to help myself. I was lucky, I had the ability to do that. If there is one thing I have learned from this internet site, is just how fortunate I was that I had people in my personal life that accepted my differences to the point, where I felt like I belonged in this world.

Very true. But the problem I see is that if you have Autism, and can speak, your voice is not allowed, especially if you disagree with them. I'm all for speaking up for those who can't, but, any Autism group should listen to Autistics who can speak and express themselves, because we understand Autism better than anyone else, as we live it daily.

So it still isn't really Autism Speaks, but people who know people with Autism speaking for them…