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observer9292
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20 Sep 2009, 6:20 pm

So, I get a flyer in the student center about this "Autism Awareness Day" where an Autism Speaks representative was supposed to speak on campus. So I go, thinking that maybe I was wrong and that Autism Speaks might be misunderstood and wanted to see it myself.

I was completely wrong. First off, the speaker called autism "scary" a number of times, called autism an epidemic spiraling out of control, continually referenced autistic people not being able to speak and consistently running into traffic, and Austim Speaks was dedicated to prevention, treatment, and a cure to end their suffering and not be dependent on others all the time, stating the extreme costs of caring for autism without stating any cost-effective plans, and stated that while lots of research said there was no connection to vaccines and autism, that Autism Speaks was going to keep looking for one. She told a story that she was driving her car along a road and saw a boy "creeping like a cheetah" and went in front of her car. She "thankfully was going slow enough" to stop in time, whereupon he went to the side of the car and stated the make, model, and all the details about the car. The Autism Speaks person of course helped him and sent him to the NASCAR event Autism Speaks holds. I found this very coincidental...

At the end of the speech there was a Q&A session. I stood up, stated my name and that I had AS, and said that Autism Speaks was BS, told only about the worst cases, staged the Autism Everyday video and stated how appalled I was at the murder-suicide quip of Allison Tepper Singer in the video, and that I didn't want to be cured.

Her response? That she didn't talk much about a cure, had a relative with AS, and he probably didn't want to be cured either (which didn't make any sense to me). She never explicitly denied the staging of the video and stated that most mothers probably think about murder-suicide, to which I responded, "of course they do," whereupon I was completely blown off after that. I look back and would have done a some things differently, but I was so angry that I had to sit there for an hour with a person saying that I'm a burden to society and that I was the only person apparently not in support of Autism Speaks there (it's the national philanthropy of a sorority and almost all of them were from there) that talking as the minority voice in a crowd bugged me.

There was a funny part of the speech though. At the autism walks that Autism Speaks holds, they have Star Wars stormtroopers there. The speaker stated that whenever a kid wanders off, they look for the stormtroopers because that's probably where the kids are. I had to contain myself for that one.

The other funny part was there was absolutely no publicity for this event. It was in no newspapers, including the student one. There was no mention of it in the student newspaper the previous week. The speaker told some students to ask normal questions about autism, and the speech was geared towards fundraising for the walk mostly. Given the fact that most of the crowd was the sorority, I'm under the assumption that I wasn't supposed to be there. I completely ruined the moment for them.

Im not sure what to do after this, whether it be to write a letter to the school newspaper or the sorority saying to find another sponsor for autism, etc. Anyone have any ideas?



PlatedDrake
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20 Sep 2009, 10:36 pm

All i can say is, pardon the french, but DAMN. I would have payed to see faces drop when you stood up. I will admit, this speaker sounded more like some "Hitler" wannabe. As far as who to contact, i dont know. If you have a psychologist that handled your dx and is nearby, find out from him/her. Or perhaps something in the community. The internet is at your disposal . . . there is a site out there for where you are, you just have to find it. :)

Granted, i dont know much about Autsim Speaks, but from the look of it, they need to either be shut down, or redone. To tell the truth, i have never once seen a flier for them at any of the places ive been to (be it a school or a TEACCH facility). Heh, with no fliers at places like that, im guessing the school system doesnt support them either. :twisted:



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20 Sep 2009, 10:42 pm

I have a few contacts in the sorority world ... I'm curious as to which sorority it is, that made this their national charity. Maybe I can work on changing that.

Thanks for sharing your story. Interesting, very interesting.


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auntyjack
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21 Sep 2009, 7:58 am

observer9292 wrote:

Im not sure what to do after this, whether it be to write a letter to the school newspaper or the sorority saying to find another sponsor for autism, etc. Anyone have any ideas?


I suggest join ASAN and get support from other Autistics in your area. It is much easier to do things when you are not alone.



Vector
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21 Sep 2009, 9:40 pm

Thanks very much for going and for speaking up. You made a difference. I think it would be great if you could write letters to both the school newspaper and the sorority. People at your school have a chance to learn from you about better ways to be supportive. If the event is covered by your school paper, it might be worht contacting the reporter and asking if he or she would be interested in doing a story about the controversy surrounding Autism Speaks.



Maddino87
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22 Sep 2009, 9:23 am

I would never have got the courage to do that in front of so many people. You standing up like that definitely squashes the generalizations the organization would try to promote. Were you nervous?

Whatever sorority that was, I just hope they don't do that speech here.



southwestforests
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22 Sep 2009, 9:28 am

observer9292 wrote:
She told a story that she was driving her car along a road and saw a boy "creeping like a cheetah" and went in front of her car. She "thankfully was going slow enough" to stop in time, whereupon he went to the side of the car and stated the make, model, and all the details about the car.


Okay, there is the saying "Truth is Stranger Than Fiction."

But, yeah, right. :roll:
I'm sure it happened and happened exactly that way literally; and, of course the account contains no embellishment whatsoever as the speaker obviously isn't the type to do so.
Right :?: :P


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southwestforests
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22 Sep 2009, 9:32 am

observer9292 wrote:
At the autism walks that Autism Speaks holds, they have Star Wars stormtroopers there.

So, that makes Autism Speaks Darth Vader then?
Don't stormtroopers represent violence?


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observer9292
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22 Sep 2009, 5:10 pm

southwestforests: I'll go under oath and under threat of perjury and repeat everything I said. The car story is 100% true. I understand it seems unbelievable, but it actually happened. Also, I believe that since Autism Speaks is looking for a cure for something genetic, and whether that's positive or not it's still eugenics. I cracked up because of that stormtrooper reference.

DW_a_mom: Apparently I can't email you the sorority and the university. My name is Brian, and I go to the University of Delaware (where the sorority is). There's no way the sorority would forget me.

Maddino87: Nervous wasn't the word. I was completely surrounded by other Greek members (there's an associated fraternity too). To make things worse, almost all of them knew someone who had autism and affected their lives. I'm sitting there for the entire hour like, "there's no way they're going to believe me..." But I did it. Actually it was very hard and I don't think I made the best case concerning staging the Autism Everyday video, and my tone of voice may have been misunderstood at the end. Maybe no one even believed me. But really, I look back and realized that I just stood up to an organization that raises millions of dollars, so why really should I not speak up anymore? So two days later I fully participated in a group discussion without any fear. It's completely changed the way I think about things.

I found it really weird that someone could stand up there with pictures of the walk having shirts that say "cure autism", be looking for a cure of autism, and then state, "Well I really didn't talk much about it tonight" and stating that some people with autism may not want to be cured. By me saying she explicitly did not deny the staging, she said, "I disagree," but didn't actually respond specifically to the accusation and didn't give any reasoning concerning the disagreement. She said something about a transitioning to adult packet AS has in response to my accusation that they don't help autistics though. Her face when I accused the organization of doing that video was priceless though. There also was an audible gasp when I stated that Autism Speaks was BS. One girl was leaving and said, "I can't believe that just happened..."

I'll explain my point further: the flyer of the event stated autism was a disease. It is my opinion that this entire speech was a way of making money by putting autism in the worst possible light. I'm DEFINITELY not saying all autistic people don't want to be cured and that we shouldn't help families with severely autistic members. In fact I think they need more support. I don't understand how autism can come in all shapes and sizes and have a person speak only about the worst cases and label the entire spectrum like that.

I was so sad there was no video or reporting about this. I would have loved to have some proof that I did this, especially for people like southwestforests, since I feel the story was surreal too in ways. I really feel now that I wasn't supposed to be there and this was supposed to be just planning for the walk...



wildgrape
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22 Sep 2009, 9:02 pm

Beautiful work, observer!! You have a right to be proud of yourself for that intervention. I hope you are, because we are all proud of you. You definitely had courage.

By the way, I am sure that southwestforests was doubting (sarcastically) the accuracy of the speaker's story, NOT YOUR TELLING OF IT.



auntyjack
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23 Sep 2009, 4:32 am

Why Autism Speaks Does Not Speak For Us

http://asansouthwestohio.blogspot.com/2 ... rsity.html



CockneyRebel
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23 Sep 2009, 7:45 am

I wish that I would have been there. I would have done the same thing, as well. Imagine them being put on the spot by two autistics. I can just see it, now...


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DW_a_mom
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23 Sep 2009, 6:18 pm

auntyjack wrote:
Why Autism Speaks Does Not Speak For Us

http://asansouthwestohio.blogspot.com/2 ... rsity.html


Ah, lots more details!

To the OP: they tell the sorority in that article. It is, unfortunately, one of the ones I do not have any contacts in. So I'm out of ideas on how to help from my end.


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observer9292
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23 Sep 2009, 7:25 pm

Yeah, I'm not really good at picking up sarcasm...

I sent an email to ASAN looking for options, and am currently writing letters to the school newspaper and the sorority. What I need is some American organization(s) to recommend in place of Autism Speaks and if anyone had any recommendations or input, that would be great. I'm going to mention ASAN, Jessica Kingsley Publishers and other efforts in Great Britain and Australia, "Don't Mourn for Us" by Jim Sinclair, and "Thinking in Pictures" by Temple Grandin at least (of which some JKP books and I think Temple's book are in the college library). I really could use some input into for whom they should raise funds for autism. The sorority seems to care to care a good deal about autism.

The state agency for autism and the Asperger page run through the college (OASIS; you may have heard of it) both mention Autism Speaks in their links. I've heard mixed things about GRASP and I myself am skeptical after reading "Asperger's from the Inside Out" by Carley (plus the "Philadelphia" Charter's meetings are in Berwyn, which is at least 30-45 minutes away from the city). The opening made it feel that he really didn't want to have AS. I was recommended by the people who diagnosed me (an Ivy League institution, which I also need to contact for resources) about Autism Network International and Autreat, but I never remember hearing anything about them here, but if Autreat is really what I think it is that seems like an outstanding idea to raise money to send families there. The Autism Society of America recently did a fund-raiser here and their website seems OK, and it's probably a good idea to contact the students that did that.

Another option is to run a student group, which I am strongly considering.

I appreciate all the positive things said about what I did. It really makes me feel great.



auntyjack
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27 Sep 2009, 3:41 am

this might prove useful if you are interested in advocacy.

http://chronicle.com/article/Autism-as- ... digm/47033



Dark_Red_Beloved
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29 Sep 2009, 9:47 pm

observer9292 wrote:
What I need is some American organization(s) to recommend in place of Autism Speaks


Here's a few links from the Wisconsin Area.

http://www.asw4autism.org/ <--State

ASSEW (South East) http://www.assew.org/
ASNEW (North East) http://www.asnew.org/
ASGM (Madison) http://www.autismmadison.org/
ASFV (Fox Valley area) http://www.focol.org/asfv/
CVAS (Chippewa Valley area) http://www.geocities.com/wicvas/
CWAS(Central Wisconsin area) http://www.wausau.k12.wi.us/east/Studen ... Autism.htm <-- Regional

and I'll bet there are similar organizations in Ohio as well.