Autism organizations

Post Reply New Topic

I have heard cons with regards to Autism Speaks. Why is that? Is it because most of the staff aren't autistic or don't have family members with autism? What do you think of Organization of Autism Research ( I think this would be for those of you who live in the Washington DC area) or Autism Society of America or Future Horizons or International OCD Foundation? I went to NAMI website and for some reason they listed autism on their website. But autism is NOT a mental illness! International OCD Foundation did list autism on their website since people on the spectrum can have obsessive interests. With regards to autism, no matter how mild or severe the person has autism, is it true that most have social skills issues? Do most autistics have issues with regards to thinking people are personally insulting them?

i don't know about everyone with ASD, but i know I hate it when people belittle or think less of me because i'm autistic. and yes, a very good number of us have some social issues, but it is extremely varied. this too pisses me off, when people assume that just because they have met one autistic, they have met them all.
i think most of the disdain towards Autism Speaks on this site comes from their position that autism is an "epidemic", a disease that should be eliminated. they have also no actual autistics working for them.
John Elder Robison worked there for a bit, but he resigned last year.
i don't knbow if you have heard all of this befofre or not, though.
i think this video explains it better...
[youtube]http://www.youtube.com/watch?v=ez936r2F35U[/youtube]

In my opinion, Autism Speaks is intentionally hostile to the idea of autism and those people with autism. I believe that it and its leaders have stepped in its own mistakes too often to be just accidental. Others have published details elsewhere about the statements and opinions of this group. Even its own insiders have resigned from the group.

However, other groups seem to do well.

The Autism Society of America enjoys a Panel of People on the Spectrum of Autism which advises the group?s Board of Directors. Its financial/transparency scores can be found at CharityNavigator.org (http://www.charitynavigator.org/index.c ... orgid=8321).

The International OCD Foundation has a large Board of Directors, staff and Scientific Advisory Board, but I couldn?t recognize any members as being people with obsessive-compulsive or other disorders. Its financial/transparency scores can be found at CharityNavigator.org (http://www.charitynavigator.org/index.c ... rgid=13203).

The Organization for Autism Research has a Board of Directors including directors who are parents of autistic people, a staff with ?support from volunteers of all ages and capabilities and interns? and a large Scientific Council which advises the Board of Directors. Its financial/transparency scores can be found at CharityNavigator.org (http://www.charitynavigator.org/index.c ... rgid=11285).

I found very little about Future Horizons Inc. which appears to be a business to promote and negotiate the speeches and presentations of leading autism researchers and others. As such, it couldn?t be compared fairly with the nonprofits you specified.

To get some idea about Autism Speaks you might want to check out this article by them.
http://www.autismspeaks.org/news/news-item/autism-speaks-washington-call-action

I personally dislike their focus on a cure and how much of the awareness they do consists of listing facts like how it affects 1/68 and more boys than girls, is a lifelong developmental condition, which at the end of the day really doesn't tell you anything about autism. I like some of the research they have funded, not the research that's only goal is to find a cure, but the much less publicized research into autism, some of which is actually useful in understanding and helping people with autism without trying to make us into things that we aren't. Also, what many people don't realize (as autism speaks doesn't make it clear, to say the least) is that it is set up as an organization that funds research, so very little of the money raised actually goes to fund programs or community level supports or anything else that directly helps provide services and supports to people with autism. They can be a bit misleading in that respect though.

But putting aside the public face of Autism Speaks and the views of its founders, I have surprisingly had a positive encounter with an autism speaks group and so I have some mixed feelings about the organization as a whole. I had heard so many mixed things about autism speaks, so when I discovered that there was an autism speaks club at my college, I decided to go see for myself what it was all about. After the first meeting, my only bone to pick with them was that they members didn't know much about autism beyond the few facts on the flyers they hand out. But for that club, it soon changed. I was invited at the third meeting to share about my experiences with autism, which I did. People were amazed to learn what it is like for me to live with autism and I was asked to share more if I ever wanted to. So long story short, I began speaking about some aspect of autism at every meeting. I began writing blog like articles that were then sent out in emails to the club members. My family began sharing my emails with other people, and it has been such an eye opener for some many people. The club members not only accepted me, but they encourage me to do something that I will be forever thankful that I did, and I even developed friendships with some of the members.

It all really boils down to this. Autism Speaks does NOT represent autistic people in anyway. It represents the parents of autistic children, their interest and their fears. Every parent who has an autistic kid always asks the question "What is wrong with my kid?" and fears that their kid won't be the person that they dream of, and that is what Autism Speaks feeds on. Parents are hoping that Autism Speaks will become that "magical fix my child" organization witch is nothing but a fantasy.

The reason I don't support Autism Speaks is because they see us as an epidemic and they want to wipe us out. They want to develop a screening test that will detect autism in utero, which will lead to the aborting of unborn autistic children. I'd also like to say that I feel there's something horribly wrong with the aborting of babies with genetic deficits, because I feel that everybody has a right to be born, whether they have a disability or not, and most people with disabilities are happy to be alive.