Offer from Autism Speaks, please give your opinion

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Yes, we should do this. This is an excellent opportunity to have some influence, and to give the positive side of autism, that's so often not mentioned.

(We should not speculate about historical or living persons and their supposed ASD. I'm talking about people like Albert Einstein and Bill Gates. Speculating will make us look desperate, as if we couldn't find success stories in real life, and the stories will not be reliable. )

But I'm a little bit confused though. What kind of stories? Is it interviews, articles, or what? And what kind of people? Famous ASD cases, or the random person, or what?

Hey, we're not exactly in the position to be a major public presence, so we should take these opportunities where we can, while also making it clear that we are not to be pities or compared to AIDS patients.

I was also at the UN meeting and Suzanne Wright did seem to be open to the possibility of putting positive stories on the site. Although the "positive" stories they showed to the UN were pretty negative.

How did she compare ASDs to AIDS victims?!

Unfortunately AutSpks is here and isn't going to go away. They will condesend to give us a platform, while carrying on regardless. Their portrail of autism is skewed and in some places, blatantly false, and they are fundamentally anti-autism. I won't be AutSqueeks pet monkey, rolled out at parties to show the in-laws just how well they've trained me. I don't think you should either. By all means flood them with positivity but found your own mainstream organization and get Alex to have a meeting with Gates for funding... The sooner Das Ubergeek comes out the better.

Thank you everyone for the feedback. I hope it keeps coming.

Some people asked about:

1. What was the AIDS patient comparison?
She was referencing my question about a "stigma against autistics" that was being worsened by their ad campaign. Her answer was that Autism Speaks was working hard to remove the stigma through their awareness campaign and that she thought "it's going very well" because "once awareness filters down through our society at all levels, the stigma takes away" (sic). But then she said the Ad Council had never taken on a campaign for "a disease" before, and that "you can well remember the stigma that we had with AIDS... that was a milestone to get over that stigma and I think it's just a matter of time." I believe she meant well by it, but it did reveal pretty clearly the way she sees things currently. I hope I didn't make it sound like something worse than it was.

2. What would I submit to them?
I'm open to suggestions from anyone. My only fixed goal is to find stories that help the parents and people at Autism Speaks -- or any NTs anywhere -- to start seeing a shared human condition. I want to keep as a motto for my team "Atypical, not abnormal." Instead of seeing autistics as "broken" I want to help NTs see how the experience of living can be the same, even if the life lived is very different.

I was thinking short video interviews with auties who are, for lack of a better phrase, well-adjusted in their lives now. Maybe they live independently and have a family of their own now. Maybe some who still require a level of supervision and care, but have found some success in a career. People who have made great contributions to our world because of their autism. And especially, people who were lower functioning as children but who are now thriving. It is critical that the folks at Autism Speaks start to understand that these people are not "cured". Their autism didn't "go away". They learned to embrace it, and others around them learned to accept instead of trying to change.

Alison Singer wrote an article not long ago saying that she didn't see how aspies and autistics could even be categorized together. They don't look at all alike to her. I'm sure there are many many parents out there, who have the same misgivings and are developing the same horrible prejudices she has. It would be great to reach out to those people and help them see that LFA and HFA are not mutually exclusive conditions, but shades of the same condition. Maybe we can help them learn the truth before Mrs. Singer gets her propaganda hooks into them.

Those are the kind of stories I would like to get out there.

I have 3 sons aged 9, 8 and 4. My older 2 have Asperger's. I love and enjoy all 3 of my sons.

The biggest difficulties I encounter comes from lack of acceptance in the wider community, lack of adequate support, and lack of understanding by medical professionals and teachers.

My sons are aware that there is poor understanding about Autism / Asperger's in the community.

However I am very scared about when they start hearing Autism Speaks messages. We are always working to build their self-esteem, but I am scared about when they start seeing/hearing these negative advertisements.

With regards low-functioning/non-verbal autistics. Nobody knows exactly how much they understand. But they are not deaf! I'm am sure that the negative messages get through and would be a huge barrier to their function/anxiety/depression etc.

Apart from Autism Speaks hearing from a range of Auties/Aspies, I think they need to be aware of the level of heartache and despair their negativity causes.

My Aspie sons don't cause me despair. I think they're amazing and I have learned so much from there. What causes me despair is the negative media portrayals and difficulty accessing appropriate support for them.

There is a posautive youtube group. Here are a bunch of videos by individuals with autism/asperger's and their parents.

http://youtube.com/results?search_query=Posautive+Youtube+group+&search_type=

In the context, the comparison between autism and AIDS isn't that bad- it sounds like she just meant that both are incureable and subject to bad press.

Shame she didn't mention that much of the bad press for autism was caused by her foundation!

There are a few similarities between HIV and autism, but by comparing the two, she inadevertently casts autism in an extremely bad light- why couldn't she have chosen another chronic disability? One where people have learnt to live with their differences and portray themselves in a more positive light, for example the deaf community. By associating autism with an incureable fatal viral infection, (one often associated with a search for a cure) she has compounded the belief that autism is horrific and must be eradicated at all costs. Surely highlighting the differences between autism and deadly diseases such as HIV would be a better step towards acceptance?

edit: I voted 'no' in the poll, but I'm kind of changing my mind- I read the person aboves post and it has several good points

I would be all for it, but I am hesitent to say yes.

The reason is that I don't want to come off as if I support their videos and the other stuff they put out.

I think that if we do it, we have to have them agree to saying that we are not in favor of a cure and ask to be respected as we are.

Keep your friends close and your enemies closer.

It is better to have a camel inside the tent peeing out than outside the tent peeing in.

Proceed with caution.

I didn't read all the comments, sorry, but, where do I have to send my history then? Because after a lot of struggle in my teen years now I am happy, have a girlfriend, attend college, everything is good to me now.

The only way that I can see something like this to be an approach that I can personally accept is if all of the spectrum is appreciated, not just those that are high functioning. All people have value, because they're human, not just becuase they earn a paycheck, or can raise a family, or even speak. If that's the kind of autism awareness that's going to come out this, then leave me out of it. I have a son on the spectrum that will probably live on his own, and hold a job as an adult, I also have one that probably won't do either of those things, or possibly speak. I accept them both just as they are, and I am working hard trying to get society to, too. Can you take a wild guess at which one's future I fear for the most? I'm getting kinda sick of this whole AS haughtiness toward LFA. It's like saying "society should accept us, and not expect us to change, but the ones on the lower end of the spectrum need to change for society." I don't understand this logic.

I'm so mad right now, that I don't even know if I'm making sense, so I need to go calm down for a bit.

And I just learned to be happy as I am. I do not want to be cured and do not want to support anyone that tries to cure me.

That said, I do think I would like to send them my first blog post from here.