Autism Speaks: Don't Speak for Me - petition

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As some of you may know, on May 9th, Autism Speaks launched a film titled "Autism Every Day".

This film alleges to reflect the typical, daily experience of someone with autism and their family members. While some of the experiences may happen some of the time, she has painted with a broad brush, and all completely negative.

Don't miss this chance to speak out. You can sign the petition electronically.

http://www.autism-hub.co.uk/autism-spea ... /index.php

Why Online Petitions Are Ineffective:

http://www.snopes.com/inboxer/petition/internet.htm

Quote from the snopes.com article:

Then the article goes on to state that the signers are anonymous.

Basically, snopes.com doesn't believe that petitions, in general, are effective; and that online petitions are less effective.

Sometimes--one in a hundred times, maybe--petitions are effective in getting what they want.

But for so little work, it's probably worth it to sign.

Still, does it matter whether the petition is successful? If you measure its effectiveness that way, then you're leaving out all the awareness it's raised when people were asked to sign it.

Anyway, this particular petition isn't really even asking anything to be done; it's just a list of people who agree with a certain statement.

It probably won't work. But I signed it regardless, just to show my support of the actual cause.

Well I think even if online petitions aren't the best means to affect change it affects far more change than doing nothing at all sitting behind a computer screen. Actually it takes more energy to sit here and argue how ineffective it's going to be moreso than just signing the petition.

I've signed it. Thanks for bringing that up, aspiesmom1.

I signed it, but with petitions, you have to actually be petitioning someone to do something, and I'm not sure exactly what that person is going to do with it.

This takes nothing away from your day other than a few minutes to read it. No one is standing with their hand out for a donation, it's fairly painless. And if it gets passed around, not just to us - people who either are on the spectrum or with loved ones on the spectrum - but to everyone you know - it will do a lot more good then then resending for the 400th time the email that Bill Gates will send you money to use email!

Maybe a little eye-opening is just what this world needs. Lots of well-educated, smart people still immediately think rainman as soon as they hear the word autistic. It's well past time that changed.

I'm not about condemn someone for trying to educate the public on how severe and hard to manage autism can be. It can be hard for some families.. and if others are saying it's NOT that hard.. good for them.

But maybe it's just some have it harder!

Sometimes it's a reality. These kids exist. If someone believes aspergers/autism manifests in a more positive way.. they should make their own film and educate the world in whatever way they see fit. As it stands petitioning against this film [ie the stereotypes] is kind of like bitching about the very existence of these kids IMO and discouraging helping them. Sorry but I honestly believe helping them is more important than worrying about stigma they may bring to the other kinds of autistics. What.. are they suppose to be hidden from the world because they might make others look bad?

I refuse to sign.

Thanks for posting a link to the film though. I hope those that signed actually bothered to watch the film first instead of being told what to believe. You certainly do not speak for me.

Last edited by riley on 26 Jul 2006, 12:34 pm, edited 1 time in total.

Hmmm. I don't know if I should sign up for that or not. Anyway, I would like to show my support.

This is the website I made about those stereotypes, includes some videos. (Read the whole way through if you want to get the idea. The first part reads exactly like the stereotypes, but is stuff people have really said, not made up in my head. And then the second part is about reality.)

I was a lot "worse" than a lot of the kids on that film at a lot later age. I'm sure if the parents on that film had been my parents they could have pulled all the self-pity-drenched horror stories they wanted out of the hat and put them on film. They'd have seen more than just meltdowns, too. They could have gone into institutions, filmed me slamming my head on the wall or sitting doing absolutely nothing and reacting to absolutely nothing, gotten footage at least as "scary" as some of the stuff used on the "before" pictures in the Judge Rotenberg Centers propaganda films, and then put their own voice-over about what they thought was best for me and what they thought my life was or could be like, and of course the utterly horrible emotional toll my existence took on them.

What the people signing the petition -- some of whom have kids "like that" or were "like that" or are "like that" -- are objecting to is the way people "like that" (like us) are portrayed. The claim that those horrible attitudes towards us are a product of our very existence is the exact problem we are fighting. Claiming it over again in defense of that video doesn't help us.

I did not see that video claiming anything of the sort. I saw it documenting how hard it can be to care for someone who has severe autism. I see no point in trying to perpetuate a delusion that it's not or pretending that parents/carers never get frustrated, desperate or depressed...

..or are they [we] suppose to be selfless martrys and pretend it's easy?

If society knew how hard it can be.. they might be a little more understanding when an autistic falls to the ground and has a sreaming fit in the middle of a supermarket, or kicks a total stranger in the shin.. instead of assuming it's lack of discipline. Hey.. they might actually be more inclined to donate money so the families can have more respite or so schools can have more teaching aids. Ignoring the bad isn't going to fix it.

The problem with the video is that it is 100% SPIN.

If it were a "day-in-the-life" video, with the ups, the downs, the good, the bad and the ugly all represented as they NATURALLY occur, then that would be a different issue altogether. However, you apparently failed to read through the petition, or read any of the information about how the video was shot.

ONLY footage of people at their worst, at the bottom, was used. Mothers were told no makeup, no hair combing, don't vaccuum, leave the dishes in the sink all week - whatever it takes. That's not a fair depiction.

I'm a diabetic. That's like coming in and videoing me only when I'm giving myself insulin, checking my blood sugars, and at times when my sugar is high or low and I'm sick and off-kilter. That's a very small part of my life. Am I a diabetic 24/7? Yep. And I have to keep that in mind with everything I do. But I have a good, happy life.

Same goes for my son. He has an AS dx. Does he have his moments? Absolutely. Have I sat on my bed and cried, wondering if I was doing right by him? Absolutely. But the joyous, happy, moments watching him give a presentation to his class on his favorite subject, or seeing his appetite for knowledge and how he absorbs it like a sponge far outweigh the minor pains of a few bruises during a meltdown (usually over sensory issues).

I am sure there are people who have reached the depths of despair with their families. To them, you throw out a lifeline, not videotape. Get them to a professional, get them off the movie. You do them, their family, and everyone else in the community a disservice otherwise.

What aspiesmom said and then some.

There's a difference between the way things really are, and propaganda designed to show not just even "the worst," but a heavily-spun version of "the worst". That video has already been used to make a murder of an autistic child (whose family had plenty of support and almost all loved her as she was) seem more "understandable". If that's the impact of said video, I want no part of it.

Read through my website and see if I ignore "the worst", or whether I get right into it but at the same time put it in the proper political context rather than leave all the worst stereotypes of "the worst" dangling to reinforce in every person who already thinks of disabled people as a tragic burden on society, who thinks that most of our parents can be driven to say things like "I thought about killing my autistic child but knowing I had an NT child stopped me".

Trust me, my parents never even thought that, much less videotaped it, in far worse circumstances than that mother was encountering at that point -- they were expected to put me in a state institution and give up custody, at the same time as being blamed for my being autistic in the first place, they had zero outside support, and I was nowhere near as affectionate as that girl in the video, yet somehow they did not think of killing me. They made a point of telling me that when this video came out, too. I told them I never even suspected them of thinking that, but that idea that this is a commonplace thing to think is one of the messages the video sends out.

In fact I did.. and I even watched the video itself. I figured that may be even more important.. or am I suppose to accept that only your interpitation is correct and I shouldn't have even bothered watching the video for objectivity? I also noticed this beneath the petition:

Yep.. that should get the numbers up.. get people to sign who don't know any better!

Really? There aren't many mothers that would wear makeup around the house looking after the kids. I don't see how thats missleading.

So one of the mothers has come forward and told you this? That they were ordered to leave the dishes in the sink? Can you prove this?

Thats nice for you. I am glad you have found a balance.

Let me tell you this. Aspergers and severe autism are two very different things. I probably have aspergers. Some autistics [severe] have more 'bad moments' than 'good moments'. I know from experience.

Last edited by riley on 26 Jul 2006, 4:06 pm, edited 1 time in total.

I really like http://www.autism-hub.co.uk/ (it's similar to http://autismplanet.com )

The developer behind it is a cool guy as well.

No, we don't want people justifying horrible acts towards any autistic person of any kind and making it sound like most people think of those horrible acts as understandable. Why does it become okay to portray us as an unrelenting tragedy and burden on our parents and so forth when the effect of this is not to create new services but rather to justify murder and get money for an organization that won't really do crap for us?

It's not what kind of child was on the video. It's the views the video was promoting. Which lead to horrible actions against autistic people. It has nothing to do with not wanting to be seen as "that kind of person". Everything to do with people deceiving other people (yes, parents were told to deliberately make their houses look worse for propaganda purposes, this was mentioned in an interview with the filmmaker), blaming all kinds of horrible crap on the existence of autistic people, and so forth.

And don't even go there with this portrayal having no real-life effects, I've already been in contact with a family who's felt the real-life effects of this views, a little autistic girl in that family was murdered and the video has been used to defend it. Have you ever had a so-called caregiver try to kill you? (I have.) If you had maybe you'd be less cavalier about normalizing those intentions (and in that same interview the person says that basically all parents of autistic kids have deep down wanted to kill us).