Autism Speaks: Don't Speak for Me - petition

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My point exactly - I don't want anyone putting across one viewpoint and making it sound as if they speak for everyone - this is a spectrum.

No one is forcing you to sign the petition. No one forced you to read beyond the first word that upset you. You are free to go. You are free to start your own opposing thread, with your own petition.

I understand the difficulties you have faced with your brother. I prefer not to put my life out as an open book on the internet, but I understand your heartbreak and hard work. I don't do this to minimalize your life or that of your brother.

Again, if this were a true "day in the life" video, then we wouldn't even be talking here.

Yet you informed me that I mustn't have read it as I didn't agree with you.

Clearly you don't as you assumed that all other autistics only have 'occasional' meltdowns rather than permenant unmanageble behaviour.

I was not comfortable talking about myself but YOU put me in the position of having to get personal to defend myself [which I will delete] as you inferred my brother's behaviour was all part of 'ups and downs'. Not everyone has ups to look forward to.. I wish my brother only had aspergers and not severe autism. At least he would have more hope then.

BTW. Of course I do not condone justifying murder because of disability. Neither do I think it's okay for women who kill babies for crying.

Last edited by riley on 26 Jul 2006, 4:17 pm, edited 1 time in total.

Again, you have chosen to hear (read) what you chose to. Which is most certainly your prerogative. However it is not conducive to continuing an ongoing, forward-moving, debate of the issue(s).

I sincerely wish you and your brother all the best.

I originally responded because you decided to try inlist everyone here to be part of a crusade.. so I actually watched the film you were petitioning against and it hit so close to home it brang tears to my eyes.. then you said that it's only my brother [autistics] having 'bad moments' when you haven't got a clue what all autistics are like. Some autistics are permenantly hard to manage.. your petition asserts that they aren't and you are wrong. This is why I commented as there are some parents who get no relief whatsoever [thats not to say they love their children any less though].
I did not pick and 'choose' what suited me either.. though you did provide instructions on how the film should be watched and told me I was wrong when I disagreed. Please do not elevate your perceptions above mine.. I would like not to argue with you but that does tend to aggrivate me.


Thank you for your kind wishes for my brother and I. I wish you and your son the best as well.

Last edited by riley on 26 Jul 2006, 4:57 pm, edited 1 time in total.

I cant beleive the mom said that in front of her daughter.

Like several people have already said nobody's denying here that autism can be hard. That isn't the point. It's the fact that this sort of propoganda is all Autism Speaks puts out and "advertises". Not even all kids with Autistic Disorder are consistantly like this, so it's a smaller percentage of the population that they're representing as the whole.

And the title "Autism Every Day" implies that autism is like this every day for all autistics.

If they made a video termed something like "The Bad Days in Autistic Disorder" or something I doubt anyone would have a problem. But to showcase it as though this is ALL autism is-- including the lesser known variations PDD-NOS and Asperger's Syndrome-- this is wrong and like aspiesmom1 said, is SPIN if ever there was one.

Not to mention I suspect many of the problems these kids frequently have are their parents who are so desperate to make their kids normal. Putting stress on them by making them do activities they have no interest in and causing tantrums. I'm not talking about necessary things like eating or hygiene but useless activities like what parents expect their children to play at. --Maybe a broad painted stroke on my part but I've seen so many parents who are too lost in their own grief at wanting a normal child that they forget the beautiful child they do have.

Autism Speaks never advertises the good. Autism Speaks, as well, is too lost up in its own grief.

I would like to clarify that while I posted the petition, I did not create it - I simply believe in it and so have posted it.

I would also like to thank all of the folks who have already signed.

Pi, one thing we learned early on with our son (with help from some good folks here at WP) that we had to let him be him, and follow his lead - and what a difference that has made in his lives and ours.

I'm glad you've been so wise.

Apparently this film is/has been given to congressmen to try shock them into bringing in the "Combating Autism Act". As far as I can gather the main purpose of this act is to force insurence companies to cover autism so that poorer families have access to actual treatment. Previously they had been falling back on the old school of thought that discompassionate mothers caused autism.

http://www.naar.org/news/render_pr.asp?intNewsItemID=288

I am so glad that I found out about this film.. and that it's been used to shame politicians into action. Is that a bad thing? How else do you get them to get off their arses? Do people think that autistics would be better off without early intervention and other therapies because the sales pitch isn't pretty? This film seems to have made a difference.. just like charities who have starving little black kids with pleading eyes sell sponsorships certificates to put on the mantle.

More on the 'evil' motivations for creating this film:
http://nyobserver.com/20060605/20060605_Ron_Rosenbaum_pageone_ronrosenbaum.asp

I know I'm pissing people off by offering another point of view.. but you can never have too much information and if people are going to condemn someone they need to judge them with all the available evidence and not heresay. I understand people don't like the way autistics have been represented but I don't see anyone picketing Dustin Hoffmins house.
She has shown an ugly side to autism. It exists. Someone else has shown a smart one [rainman/the cube guy], a funny one [Mr Bean? Homer Simpson maybe?]. No doubt tommorow someone else will give their own take on it. It's the way the world works.. if you want to get a message across you've got a limited amount of time on that soap box so you better get people's attention.

It's not even an ugly side to autism, though. It's an ugly side to attitudes about autism. Showing that without pointing out that the attitudes are the ugly thing, is irresponsible. Also, the Combatting Autism Act isn't necessarily a good thing in and of itself. So using that as evidence that the movie is good isn't going to convince anyone who views that act as bad.

There are plenty of ways to get on a soapbox while:

1. Portraying situations responsibly

and

2. Advocating actions that are useful rather than destructive.

The "Well it's publicity, isn't it?" argument gets really old, really fast. This stuff has already hurt autistic people in demonstrable ways, and very well may not truly help autistic people in the end either. That's what people are objecting to.

Many disability-related organizations have learned how to raise money for their causes without degrading disabled people. But it's always come at the insistence of disabled people, because in the first place the organizations generally don't care whether they're harming us or not as long as they get money. After they get pressured into doing things right, though, things get better. Without pressure, things do not get better. Hence, pressure.

Again.. my brother is going to be dependent on other people for the rest of his life. He is severely autistic and his condition means he misses out on alot of what life has to offer him. If he were cured yes it would be a good thing.. but I'm more interested in him getting as much help as possible as I doubt he will ever be cured.

I understand and appreciate both points of view.. just to be clear.. I even understand the objections people have to the method used so I do not need to be told for the fifth time. I'm just offering objectivity. Clearly severe autistics [non verbal/heavily dependent] are in the minority and there is much ignorance in regards to how difficult it is to care for them. I believe some people have BLINDLY signed that petition without even viewing the film or the site that goes with it which I feel is unfair. I would have been more respectful of a less biased introduction to the petition rather than a "Hey everyone sign this it's evil." I have given my opinion and some information to go along with it so other people can make an informed opinion instead of being told what their opinion should be.

Now I've given mine again. I look forward to someone else trying to shout me down with the same arguments and trying to belittle my point of view. If the film truly IS a bad thing and I am wrong [anything is possible].. what does it matter what I say? They can watch the film.. read the site info and come to that conclusion by themselves.

I would also like to be clear on something else. I will not tolerate anymore [however subtle] insinuations that I condone persecution, abuse or murder of the disabled. I do not and have been both a victim of it and an advocate against it.

But using this as a means to get politicians into action now makes it available to be used to drive more legislation later on. I would rather our politicians get an accurate viewpoint of what the spectrum of autism is like than a biased one that speaks for just one part of the spectrum. These same politicians will remember this video when they vote for other legislation later - legislation that may impact the Autistic community in negative ways. I'm not referring to health insurance as listed above - but this could be for just about anything else. Making us appear more disabled as a whole does nothing to give us means to help ourselves or become more accepted in general society.

I'm not saying anything about your viewpoint of the film - you've made that quite clear - I'm just saying that I'm concerned that this film is being used for educating congressman. I wouldn't mind one that showed this side of the spectrum as long as it showed all the other sides as well.

I've signed the Petition.

To get an 'accurate' viewpoint she would've needed a whole series.. how many [mainstream] networks would be interested in that? Hey I don't know.. she may still do more.. but how many people here have written to her and volenteered themselves or their kids for a show?
This is really the first time a negative view of autistics [with the meltdowns] that has been portrayed. Previously the compliant, obsessive savants have been represented. Ye old rainmain.. seems the idea of this 'charactor' does not evoke a sense of urgency in the public.. they see this autistic as more 'sweet', childlike [awkward] and gifted. Endearing almost. Many people are aware that geniuses like Einstein probably had aspergers. Why would they want to 'fix' minds that advance humanity? I'm guessing this woman wanted to educate about one specific autism.. it would be nice to cover all but if thats the one she identifies with.. well you write what you know so I can't really judge her or expect her to pour finances, work and time into something she doesn't really identify with. Most people aren't stupid either.. they are well aware of the 'quiet' autism and now know there is a different variation on the spectrum.

So how does this film erradicate the previous portrayals of the 'quiet' autistics? If it was the only stereotype I'd agree but it's not and doesn't change the other ones.

High functioning autistics shouldn't worry about the 'more disabled' ones making them look bad. There are plenty of movies etc where 'aspies' are depicted as being gifted superhuman geniuses.. they've have plenty of air time [in comparison] and if they are truly 'gifted' they should be using it to educate the public themselves instead faulting other people for getting off their arses. I see nothing wrong with someone shedding light on autistics that need that extra help.. but I find people who want to sweep their existence under the carpet somewhat selfish. If they want to protect the autistic community that bad.. why would they want to hide the worst ones?

Thankyou for trying to understand my perspective Adhocisadirtyword.
I won't be coming back to this thread though because I feel like I'm repeating myself which is exhausting and counterproductive.

Politicians don't give away money unless they're forced. They have no morals and those which they do have they simply adopt to "get down" with the common man. Same goes for insurance companies. So if they have no morals what's a little more suffering and hardship going to mean to them? It's having big names and big money attached to a cause-- like these parent groups are gathering. I suspect even if they showed both the good AND the bad to congressmen (or even if they painted the most hopeful, rosiest picture of autism) it would make little difference. If the group is big enough and has enough connections, it can get things done no matter what its goals are.

And this film is not just circulated amongst congressmen as is apparent by the fact that we've all seen it (and I don't believe any of us are congressmen). This is not what we should be aiming for to double as a scare tactic for congressmen and insurance agencies AND educating the public.

And taking a "it's better than nothing" stance is just lazy. There are ways to accurately educate the public AND to put pressure on congress to pass certain types of legislation in favor of the treatments now currently used for ASDs which seem to bleed all but millionaires dry.

There is NO REASON we have to take a half-assed approach to all this.

I'm half considering making my own film, after all the discussion going on about it. Apparently we need more educational resources if this is the best there is to show to the public.

What I want to know, though, is why one of the mothers was trying to get her daughter to go on a swing? First the girl cried, then she sat on the floor and had a meltdown - why not just ask if she wants a go on the swing in the first place, and if she doesn't, then find something else to do instead? Unless I'm taking too simplistic a view of it, of course. Any film is mediated and biased in some way, so maybe it wasn't actually the mum's fault ...

Also, regarding the 'I'd have killed her' speech - apparently while I was growing up, there were quite a few times when it was assumed that I was unaware of what was going on around me, whereas I can still remember said happenings years later. Which does tend to make one wonder.

I also appreciate riley's point of view - autism in its severest form, and the need for financially viable diagnosis and help, is a valid cause to be promoting. But I think it's more the way the film is being presented that people are protesting; it's made to look like the generic term 'autism' actually means 'my child isn't normal, is too difficult to cope with, and my life is hell because of it' rather than identifying that this is only part of the autistic population.