What is the truth about Autism Speaks??

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Um... AS has a discussion board??? I was lumped with people who post on a board I didn't know exists. How about that.

Fwiw, longtime AIDS activist that I am... That statement about more diagnoses than HIV, cancer and whatever the other one was is completely untrue!

The facts about HIV AIDS...

These are estimates:
People living with HIV/AIDS in 2007 33.2 million
People newly infected with HIV in 2007 2.5 million
(courtesy of http://www.avert.org)

In fact, more people will die this year of HIV/AIDS than there are autistics in the US (172% increase since 1990 included, btw).

I never noticed that little note until now. Geez, yet another thing to call AS out for. Does it ever end?

I blew a gasket here, last night and I apologize. I may not see eye to eye, with a a couple people who've been posting in this thread. Just as I was posting the stuff that I did, out of democracy, I'm also apologizing out of democracy, but also to make all members feel welcome.

I think your gasket may have been deleted. I got a "this post does not exist" message.

Sorry Pepperfire, but please don't try sneaking the same half-truths past me.

You quote things like "more people will die this year of HIV/AIDS than there are autistics in the US". Now, you have to admit that what you are comparing there is deaths from AIDS, world-wide, with diagnosed autistics in the US.

However, you are right to note that I wasn't scathing enough about this "fact":

Your comments make it clearer how devious this statement is. (And it got past MY B/S detectors! I feel quite embarrassed to say.)

Yes indeed... I suspect:

• Incidence and diagnosis of AIDS in children in the US is not common.
• Incidence and diagnosis of cancer in children in the US is not common.
• Incidence and diagnosis of diabetes in children in the US is the most common of the three, I would guess, by a long chalk.

So, one unspectacular truth. Diabetes, once established as a problem, is simply, and completely, manageable. By that, I don't mean to belittle it, at all.

Then two emotive and generally terminal afflictions thrown in to get people's attention.

Now Lau, The fact is that 1.5 million people worldwide will die of HIV/AIDS this year; that is more than all of the autistics in the US. That's a fact, not a half-truth. I'm sorry, I must have missed the part of that statement where it limited the numbers to just the US... in fact, what are the worldwide numbers? Certainly if THAT many people are autistic in the US and all things being equal, those numbers must be about similar to every other country in the world... don't you think?

If you want to joke about half-truths, though, HIV/AIDS isn't exactly what people die from, it is the detrimental affects of the opportunistic diseases they get because their immune systems are compromised that they die from. HIV/AIDS itself doesn't really kill anyone.

For that matter... does autism kill anyone?

here's an extrapolation for you, if 62.5 per 10,000 is the assumed prevalency rate, how does that translate to 6.8 billion? Math anyone?

You're kidding, right? You're getting huffy because I accidentally misspelled/typed your made up, internet pseudonym? Surely your parents didn't name you Pepperfire. That's a bit much, but if it makes you feel better I apologize. You're not a Peppertree. You're a Pepperfire.

If you seriously don't think Autism Speaks for Autistics, try telling that to the tens of thousands of people across the country and even the world who think it does. You're in the minority and those thousands of people that support it really don't care what you think. As a matter of fact, all of this bashing and fighting with this group will boomerang and end up having a negative impact on World Planet and Aspergians that they deem as troublemakers.

The way you build bridges is not by bashing, insulting and starting wars. It's by creating a dialogue with those in power, working with them and moving forward from there. If the organization still won't bow to what you believe, it's time for you to move on. You can't make every Autism organization on this earth walk to the beat of your drum, especially when you don't even have Autism. There are many organizations out there I don't care for, but my time is not spent bashing them or their members.

Post the link to Midnight In Chicago so we can see what they do.

Thank you. That's what I've been trying to say. They are painting the pictures of themselves, their community and movement on their own and it's not a very pretty one. If the only thing out of their mouths is bitterness and anger, who's going to listen to that? Their message may turn people off and away instead of putting people firmly in their corner which is where they want them.

For all those people who hate ASpeaks, what is your plan to promote Asperger awareness and get the things you need for your community? What's the plan? I see so much need out there for Asperger services, particularly for kids. There needs to be people out there fighting for things like SID so some of these kids can make it through a school day without overload. They need to fight for Social Skills classes and Job Preparedness Training before transitioning Asperger kids out of high school. They need to broaden the "Mental Health" category with insurance companies so that Autism includes Aspergers and those who suffer are able to get services covered without pay. These are just a few of the needs I see that aren't met in the community. Why aren't the people on this board active in organizations that push for these things, instead of bashing one that is doing great things (in my opinion) for Autism?

This post of yours if the only thing "huffy" around here.



Sorry dude, but what have you got your panties all in a twist over? What do you care what I think of Autism Speaks anyway?



No, from where I sit, your time is spent flaming people in WP. What's the difference bub?



Google Midnight in Chicago yourself, friend.

I'm feeling particularly huffy right now.

Pepperfire, I love reading the information you post and learn a lot from it, but you do post as if you are in a huffy mood. I don't know if you mean to, or if you read it that way, but to a (mostly) NT like me, that is how it seems. Just in case you have any interest at all in knowing that.

NewportBeachDude is right about how one needs to navigate the world to get what they want. As many at this site understand through life experience, the world doesn't just look at how much you know, and navigating the unwritten rules of negotiation and ingratiation is extra difficult for Aspies. I have this conversation all the time with my son. He sees things so clearly, and where he wants to go so clearly, but that it can't just all fall into place that way makes no sense to him. My job is to help him navigate all that, and he is slowly getting it, and adapting to it. Anyone who wants to affect real change will need to acquire that skill.

Yes there is bitterness and anger; but I agree and have always agreed that creating contructive dialogue with them is the best way to go. Afterall, few would take us seriously if we fail to give an honest and mature debate. You are the one who's painting the pictures with your rhetoric. You are starting to make us sound like mindless, violant fundamentals.



Giving speeches about Autism and Aspergers directly to the wider community and local media, gaining the support of our Members of Parliament that has given a real benefit to people's lives and hopefully their futures. Some things that we, the Aspies and staff of our collage have already done and continue to do.

Last edited by SDFarsight on 17 Mar 2008, 5:51 pm, edited 1 time in total.

Did ya ever notice that the people who accuse you of being "huffy" are the ones that ticked you off in the first place?



And I disagree with this statement how?

NewporBeachDude has picked and chosen what he wants to see of my posts. If he bothered to get to know me and why I'm here, he'd know that I'm here for the same reason you are; to learn about how I can navigate my world, through the experiences of others.

He's decided that he's going to paint whoever he likes with his broad little brush, and woebetide the person who disagrees with him, because, after all, I'm not really autistic anyway. Right after not bothering to have enough respect for me to use my chosen name, what the heck was that comment supposed to do if not tick me off?

I personally don't appreciate being condescended to. I don't appreciate being lumped into a pile with other people (most of whom I don't even know), I don't appreciate being accused of being "huffy" just because I pointed out that he had my "name" wrong.

If I come across as "huffy" to an NT, it strikes me as more his baggage than mine, because honestly, DW, I am entirely ambivalent to what he thinks.

Fwiw, I'm here for the same reason as anyone else. I don't agree with Eugenics and if anyone is supporting eugenics, well all the power to 'em, but it isn't my thing. Someone started a thread entitled "What is truth about Autism Speaks" and I decided to post the truth as I saw it. If NewportBeachDud wants to think that is the be all and end all of me, then that's his error.

I have never said that there is no good in AS, in fact I've said the opposite. BUT, I will continue to state and restate unequivocally that any Autism organization that supports the concept of eugenics isn't about to get my support.

Pepperfire, maybe huffy isn't the right word, but you do tend to come out with guns blazing. I think your screen name suits you, and I mean that as a compliment.

I don't know all the details about anyone, I find it difficult to keep all the screen persona's straight, to be honest. I would assume that peppertree v. pepperfire was an honest mistake, given that I recently called him NewportBeachGuy because that is what my memory was able to come up with. I prefer to go with "pepper" and "newport" to avoid those types of problems, actually.

Gosh, the rest ... I guess I've posted my opinion and all I'm doing now, really, is playing because I do NOT want to get my work done!

Last edited by DW_a_mom on 17 Mar 2008, 6:43 pm, edited 2 times in total.

Pepperfire, if you do a search on NewsportBleachPseude's posts, you'll see that he get a kick out of winding people up, covert and overtly, and isn't an aspie and is just a playground style, internet bully. Just ignore him and eventually he'll pick on someone else. [But he will follow you from thread to thread for a while.]

I have no problem with an autistic charity that promotes warnings signs of Autism so parents can dx their children at a younger age. I actually aprove of it. But I find Autism Speaks to do more harm then good since they show autistics as just low functioning people that don't have a chance at a future. Also I believe that they also downgrade autistic people to a statistic.

He'll be wasting his time. Forewarned is forearmed. Thanks for the heads up.



Oh, no, lol, I think at that point... I was huffy, I'm still feeling huffy over this guy. And based on the PMs and other comments I've received, I'm pretty sure it's justified.



Calling me "Peppertree" was probably an honest mistake, which is why I pointed it out. The other day, I pointed out to someone my difficulty with the way they used the word myriad. I wasn't being huffy, I was simply pointing out that my name was "fire" not tree. Unfortunately, rather than give me the benefit of the doubt, the BeachDude decided he'd take the opportunity to attack me... Now, is being called "huffy" an attack? No, not all by itself, but throw in a "you're not allowed to have an opinion about autism because you're not really autistic" comment and anyone with my brain is going to see the deliberate insult.



Aren't we all??

I shouldn't play during the day, but I was in avoidance mode.