I AM CONDUCTING AN INTERVIEW WITH AUTISM SPEAKS

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I was just talking to John Elder Robison about the interview on Facebook!

This is quite insane!

It's sounds like you're doing it right and I'm impressed with you making the effort. It's just that when people have really different world views, I think there's a limited amount that can be realistically expected. For example, here's a conversation between Richard Dawkins and Howard Conder, who is a religious leader. It wasn't a disaster, but neither was it all that good. Richard gives a great explanation of the evolution of the eye, but since Howard's coming at it from an entirely different angle, no, it didn't convince him. And Richard partially lost his patience.

Even though I myself am comfortably atheist/agonostic, went to a strict church as a teenager, had to rebel, and glad that I did, . . . all the same, on this one, I kind of think Howard presented himself at least as well as Richard. I mean, Howard went on a medical mission to Haiti (and sad part at the beginning where Howard lost a family member).

For what it's worth, here it is:

[youtube]http://www.youtube.com/watch?v=Wfe4IUB9NTk[/youtube]

I just received another email from Dana Marnane assuring me that her response would be in tomorrow. She was a very friendly and optimistic, and even said, " I can’t tell you how glad I am that you approached us and I am very hopeful that an open dialogue will be helpful to both points of view. We never stop learning at Autism Speaks."

I have these concerns, too. Speaking personally, if I was "cured," I wouldn't want to lose who I am. I don't want to lose my good spectrum traits. Maybe adding new skills is a somewhat different matter.

I mainly want the world to become more open. For example, if more of our educational and work opportunities were multi-path rather than single-path, I think that would make a big, big Huge positive difference.

Our institutions seem to "need" to define a person as either low-functioning or high-functioning. As if they're afraid to acknowledge that some people, in fact many people, might be medium-functioning. What help would we then give the person ? ! ? Well, why don't we have a back-and-forth conversation with the person and see what help he or she would like to receive.

I cant wait for the answers....this is sitting on the edge of your seat stuff!!

I understand autism speaks thinks they are doing what is right by us, but they need to see us as people, not just an illness.
You can cure an infection, but we are not an infection, we are people and autism is hardwired into our brains and bodies.
It is not just a "mental problem" either but a complex mind/body difference.

sorry for my rant. I guess I am not helping matters.

neverless...I cant wait to hear what she has to say.

Also I would like to see autism speaks do more about making services availble for us. I personally dont want a cure, but can sure take some assistance from time to time.

specifics,
training and providing assistance dogs for those who get easily overstimulated, and provide comfort for the autistic owner during high stress moments
real life social skills training (not some 1950's version), but one that addresses today's culture and social norms
creation of a computer application that one can type in the social situation, words, take pictures of expressions and body language and decode them.
advocacy for parrents dealing with non-compliant schools
better diagnostic testing for adults with ASD's and teaching mental health workers how to spot ASD's in adulthood
advocates to help employed autistics work with employers to make the working enviroment more tolerable
help fight the "weirdo" stigma of ASD's
develop devices that can help with sensory issues, like special sunglasses, or lense treatments to glasses, and ear devices.
more research on how to help us cope better and awareness to help the world try to understand us better.

And remember above all, do so with respect for our humanity, strengths, struggles, and what we contribute to the world however big or small.

Jojo

These are all very stimulating suggestions guys! I am incredibly excited to see how things move forward from here.

please pass on my suggestions to them. It is often said that we dont ask for what assistance we need but demand more assistance.
I really think the computer or smart phone application would really help us, but since I am a rare hyper-creative aspie...I can conceptulize it but I suck at anything computer-math oriented.

Jojo

Heartspring provided me with an iPad. It is extremely helpful! I'm on it right now! Thanks Heartspring (love you Connie!)

From my experience with Christians you can have all the evidence laid out in front of them and they still won't believe you.
While I think everyone is free to have their own views many I have come across will disregard evolution or the big bang or anything that conflicts with their understanding of the world, as fairy tales or 'scientific mumbo jumbo.'

Autism Speaks, however how many times I've disagreed with them in the past, have some understanding of science.

I'm ready to see if Autism Speaks can redeem themselves.
If they are changing their ways then I'm ready to forgive.

I have asked John Elder Robison for a quote addressing this issue. Please encourage him to provide one by posting on his facebook page at...

http://www.facebook.com/#!/john.robison

Thanks everyone! Your support means so much to so many!

John Elder Robison would like to provide a quote on our venture with the Autism Speaks interview but apparently he was labeled a "TMS Spammer" when he tried to join a couple years back, and doesn't want to go where he is not wanted.

I am lobbying to have this spammer label removed.

I cannot post on John Elder Robison's FB page. I need to have him blocked as I often eat while on FB.

I think you are a very talented young man. Your self promotion is excellent, and you questions are very clever. I will be interested to see how Autism Speaks spin their answers...because, in the final analysis that is all they will do, I am afraid.

Still you are almost certain to get at least some kind of contract work from them, which has to count for something in terms of your future career?

...and is as much as any of us can ever expect from them I am afraid.

A little profitable tokenism for useful and compliant individuals here and there.

Well, thank you! No need to get on his FB page. I have been in contact with him.

I am hard at work lobbying to have the "TMS Spammer" label removed from Robison AFF profile. I can not speak for AFF, but I am certain there are members on their who would value his insight.

If you are a member, please express your views on this thread...

http://www.aspiesforfreedom.com/showthr ... ?tid=23229

He seems to have been tagged as a SPAMMER (he is *NOT* banned) with significant cause:
http://www.aspiesforfreedom.com/member. ... e&uid=5903

Here is a rough guide to rTMS:
http://en.wikipedia.org/wiki/Transcrani ... timulation

It looks like lunatic fringe science to me, and seems to cost $300 for 30 minutes:
http://www.elata.org/tms-faq.shtml#_What_does_TMS_1

Of course, if he has never been connected to promoting this over priced, risky, pseudoscience, and is prepared to say so, the tag is in error and should be removed.

But as far as I know his only other claims to "autistic eminence" are writing a book and being the token autistic at Autism Speaks.

I've looked over your questions. They are valid questions, but I wish that several tougher questions had been included.

You do realize that you are giving a powerful and experienced PR machine another opportunity to spread their lies, don't you?

I know that you want a career writing about autism, but it is far more likely that Autism Speaks will successfully use you rather than you use them. They've been at this a lot longer, and they are not constrained by honor or a love of the truth.

I will not be reading their reply.

Last edited by AlanTuring on 19 Sep 2011, 4:44 pm, edited 1 time in total.