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Haddayr Copley-Woods [userpic]

AUTISM SPEAKS DOES NOT SPEAK FOR ME

September 24th, 2009 (02:59 pm)

I guess it's Anger Day(tm).

I thought Autism Speaks couldn't do worse than comparing my child to a fatal car accident.

Turns out I was wrong:



I posted the following comment:
I will not be intimidated by "Autism Speaks." Autism Speaks does NOT speak for me, and it does not speak for my brilliant and beautiful son.

This is a horrible, manipulative advertisement. My family refuses to be an object of your fear, your pity, and your ignorance.

My son is not a car accident. And he is not a malevolent monster out to destroy my marriage, either.

Let people on the autistic spectrum speak for themselves. STOP SPEAKING FOR THEM.

Comments

Posted by: DebW (deborahw37)
Posted at: September 24th, 2009 08:10 pm (UTC)

That is a horrible HORRIBLE advert

So offensive I can only applaud your excellent response

Mine would consist mainly of expletives

Posted by: Jessie (orbitalmechanic)
Posted at: September 24th, 2009 08:11 pm (UTC)

Oh my god.

I made it to 0:49 and couldn't keep going. I don't understand this at all.

Posted by: Adrienne (ajodasso)
Posted at: September 24th, 2009 08:14 pm (UTC)

...good grief. That is offensive.

Posted by: sacwentie (sacwentie)
Posted at: September 24th, 2009 08:31 pm (UTC)

WHAT THE FUCK

Posted by: balgar (balgar)
Posted at: September 24th, 2009 08:31 pm (UTC)

I don't know anything about this organization, but the first half was creepy and sounded like it was talking about hunger, or cancer, or cluster bombs.

I'm not sure what I was supposed to take away from the second part -- that strong families will not allow autism to do all the things it threatened to do earlier in the commercial, or that families will hold themselves together until we have "cured" autism, whatever that would mean?

I don't know. I suppose it reminds me of commercials about depression, in which the depressed people are unable to perform basic tasks and ignore their dogs and let their kids run wild, and which mainly serve to make me more depressed.

Posted by: Haddayr Copley-Woods (haddayr)
Posted at: September 24th, 2009 09:42 pm (UTC)

The claim vaccines and mercury causes autism. They want a "cure." They never, EVER have autistic people speak for themselves in their ads. They make a huge amount of $$ off of frightened people. They do damage to our herd immunity with their anti-vaccine bullshit. They encourage chelation of kids with autism, which can sometimes kill them. They speak of autism as if it's a monstrous disease which robs us of our children.

One of the comments from an Autism Speaks supporter at the Youtube video pretty summed up the attitude of many members of Autism Speaks: "Nobody expects people with damaged brains to be able to comprehend the atrocity of being poisoned with mercury. That's why we offer to help you and we take pity on your ignorant display here. It's not your fault your brain doesn't work right. Please let us help fix it."

Posted by: mia_mcdavid (mia_mcdavid)
Posted at: September 25th, 2009 12:00 am (UTC)

Now, I'm totally NOT ok with their ideas or with them having any money. You can't *fix* these kids. We do NOT know what causes ASD, and it is bullshit to spend money on a "cure" when you are so wrong about the cause.

I love my kids. I am still sad that things are so difficult for them, though.

Posted by: Granola Girl (anterastilis)
Posted at: September 24th, 2009 08:45 pm (UTC)

What the fucking fuck??? I'm...I'm aghast.

(Deleted comment)
Posted by: Haddayr Copley-Woods (haddayr)
Posted at: September 24th, 2009 09:37 pm (UTC)

Good for you. I almost didn't post because I don't want to give them any publicity.

Posted by: Marissa Lingen (mrissa)
Posted at: September 24th, 2009 09:48 pm (UTC)

I don't have to look to stab, right? I can just stab with my eyes closed, and you will point me in the right direction for the stabbing?

Posted by: Haddayr Copley-Woods (haddayr)
Posted at: September 24th, 2009 09:52 pm (UTC)

Yes. Yes, I will. It's a deal.

Posted by: Tiger Lily the Ginger Cat (tigerbright)
Posted at: September 24th, 2009 09:03 pm (UTC)
Andromeda - WTF?

I have no words.

PS. Where did you find the link? I need to post about this myself, and write angry letters, when I find my words.

Edited at 2009-09-24 09:05 pm (UTC)

Posted by: Haddayr Copley-Woods (haddayr)
Posted at: September 24th, 2009 09:36 pm (UTC)

I get emails from Arie Ne'eman, who runs the Autistic Self Advocacy Network. You can sign up here:

http://www.autisticadvocacy.org/

Posted by: Tiger Lily the Ginger Cat (tigerbright)
Posted at: September 24th, 2009 09:45 pm (UTC)

Yup, I get those too. First got the link from griffen.

Posted by: Samantha Henderson (samhenderson)
Posted at: September 24th, 2009 09:07 pm (UTC)

"I will destroy your happy marriage." WHUT?

Posted by: Haddayr Copley-Woods (haddayr)
Posted at: September 24th, 2009 09:38 pm (UTC)

There is an oft-repeated and completely not backed-up statistic in the community of parents of ASD kids that says 90% of our marriages fail.

Posted by: Naomi (naomikritzer)
Posted at: September 24th, 2009 09:13 pm (UTC)

AAAAAAAAAAAAAAAAAAA

Posted by: Let go Let go Let Really go (maudgonne)
Posted at: September 24th, 2009 09:30 pm (UTC)
A messed up world but i love it anyway

Horrible.

Posted by: Gary A. Braunbeck (haceldama)
Posted at: September 24th, 2009 09:40 pm (UTC)

That is *beyond* offensive; it creates a whole new realm of sleaziness-disguised-as-PSA. To use such disgusting scare tactics -- not to mention the fact that the f***ing thing looks upon the autistic as objects of pity and revulsion, not human beings -- destroys any credibility they were attempting to gain. I, too, applaud your response. I have worked with both autistic children and adults, and the manner in which this...this...I can't even think of a word strong enough to characterize this offensive piece s**t -- the manner in which this portrays the autistic is sickening. You should be angry as hell -- but proud of yourself, as well. I admire you.

Posted by: Jackie Wones (little_octagon)
Posted at: September 24th, 2009 09:40 pm (UTC)
OMG Laptop

Oh my fuck. Wow...just, wow.

On the upside, I did peek at the YouTube comments from individuals with autism. Pretty damn articulate for a group of people who supposedly can't express themselves, IMNSHO.

Posted by: Naomi (naomikritzer)
Posted at: September 24th, 2009 11:18 pm (UTC)

IIRC, Autism Speaks has occasionally filed LAWSUITS against autistic individuals who had the temerity to criticize them publicly.

Posted by: Jackie Wones (little_octagon)
Posted at: September 25th, 2009 12:22 am (UTC)
EllieTongue2

At first when I read your comment I was all like, "Are you fucking kidding me?" but then my Spidey senses told me to check Google.

Sure 'nuff...

http://autism.about.com/b/2008/01/22/when-is-a-humorous-site-not-so-funny-autism-speaks-has-its-say.htm
http://www.aspieweb.net/aspieweb-being-bullied-by-autism-speaks/

I mean, even if the wearer of the t-shirt was nonverbal, maybe they still wouldn't want Autism Speaks speakin' for them.

Posted by: Jan Radder (janradder)
Posted at: September 24th, 2009 09:54 pm (UTC)

If autism tears families apart like they say it does in the first half, then how will those families stick together like it says at the end? This really, really, really pissed me off -- how dare they say our son is a freak and defective? Also? That Autism Speaks supporter you quoted in an earlier comment is a fuckhead.

Posted by: Fighting Crime with a Giant Dandelion Since 2013 (pameladean)
Posted at: September 24th, 2009 09:56 pm (UTC)

That's just grotesque. That is a sick, sick narrative. "I'm autism. I'm a sociopath and, like, Iago raised to the hundredth power, and I am coming for your kids and your marriage." Jesus Horatio Christ.

I see from comments that these are the anti-vaccine morons. It figures.

P.

Posted by: Haddayr Copley-Woods (haddayr)
Posted at: September 24th, 2009 10:03 pm (UTC)

What really bothers me about "autism speaks" is that they get a TON of donations by people who think they're helping. They are seen by so many as a legitimate organization, and they just AREN'T.

It's one thing to be pro-cure. Fine; we simply disagree. I am even willing to admit that because Arie's diagnosis is Asperger's instead of autism (he actually scored exactly in the middle of their score sheet and the doc picked "Asperger's" because Arie is so verbal, though, so I certainly see a lot of difficult behaviors and such) I might not truly understand.

But to pursue this goal by legitimizing pseudoscience and attacking vaccines just pushes you out of "group whose goal I disagree with" and into "group which actively perpetuates evil." Especially when you add in the dehumanizing way they depict people with autism.

Posted by: Jessie (orbitalmechanic)
Posted at: September 24th, 2009 11:15 pm (UTC)

You know what they sound like, now that I think about it? Those medieval descriptions of people with demons in them. You know, the ones where the original person is gone and their soulless shell is going to kill and eat everyone around them. Unless you beat it out of them.

It's nauseating, I really felt ill watching less than a minute.

Posted by: Haddayr Copley-Woods (haddayr)
Posted at: September 24th, 2009 11:17 pm (UTC)

YES!!!

And the awful thing is the tiny grain of truth in it; I remember saying to Jan, before Arie had gotten lots of therapy and grown older and started on Adderall: "I am now beginning to understand why medieval people thought some kids were taken over by demons."

That said, I am NOT medieval, which is why we educated ourselves and set him up for as much success as we could instead of, say, continuing with this flawed thought process.

Posted by: Jessie (orbitalmechanic)
Posted at: September 24th, 2009 11:24 pm (UTC)

Well, right, of course I can see how people would think that, if they were stupid and scared and clung to their own beliefs against all counter-evidence. I understand why people think and say a lot of revolting things about disability and adoption and gay people too. I just think we could have a higher standard than "if you only acted on your basest instincts and had not a grain of empathy or intellectual curiousity, this behavior would make sense."

Pathetic mean-spirited cowards.

Posted by: Fighting Crime with a Giant Dandelion Since 2013 (pameladean)
Posted at: September 25th, 2009 12:32 am (UTC)

It's all of a piece, I think, it's the same kind of narrative, whether they are going on about how vaccinations mandated by the government cause autism, or about how autism is a huge scary soulless force that will wreck everything. They like those bad stories.

And yeah, they are not legitimate and I'm sorry they get money. Is there an organization that should be getting it instead? Because I have a little to spare.

P.

Posted by: Haddayr Copley-Woods (haddayr)
Posted at: September 25th, 2009 01:39 am (UTC)

The Autism Society is an excellent organization, as is the Autistic Self Advocacy Network.

Posted by: mia_mcdavid (mia_mcdavid)
Posted at: September 24th, 2009 11:57 pm (UTC)
I hate to disagree...

who am I kidding...I'm fine with disagreeing.

I think this might have been differently and better executed, but it got it right, at least for some of us.

Having autistic kids didn't destroy my marriage, but it does do that to a lot of people--it's so stressful.

My son can NOT speak for himself--how can you ask him to???

There have been so very many times of struggle, pain, humiliation and loneliness because of our kids' special needs.

We have been kicked out of churches because of Tom.

Besides, if you had listened to it all the way through, the end was full of the voices of those who love their autistic families, who are determined to do their best for them.

Autism is a monster. It attacks one in 150 to some degree and it has caused me personally untold suffering. This could have been better done, but your dudgeon is misplaced.

Posted by: Haddayr Copley-Woods (haddayr)
Posted at: September 25th, 2009 01:36 am (UTC)
Re: I hate to disagree...

I did watch it all the way through. And the ending upset me even more than the ridiculous, melodramatic beginning. If autism destroys families and marriages and leaves people bankrupt, who are all these people surrounding the kids? Family? But, gosh they were destroyed.

I also don't expect your son to speak for himself -- he's only a teenager. But lots of adult autistic and Aspergian folks DO speak up for themselves, and Autism Speaks sues them and tries to silence them for speaking out.

Even if Autism Speaks didn't try to prevent people from vaccinating their children and have ads comparing having an autistic child to fatal car accidents, the horrific beginning to this ad in which they made NO distinction between the children themselves and the autism they have was just plain manipulative and offensive.

They are all cure focused, which is fine, I suppose. We just disagree that this is the only course of action -- I think making this world into a place that accommodates and understands autistic folks is equally important.

What upsets me is that their tone is completely and totally wrong in ALL of their ads. They make no mention of therapies that help except in a token toss-in at the end. They demonize while simultaneously pitying and loathing kids with autism. It's creepy.

As for "doing what's best for your kids," I don't think that chelating their kids is the best for them. I really don't.

I don't think my anger is misplaced. Is there a reason you called it "dudgeon?" That seemed extremely dismissive. The way people execute these things IS important. Of course having autistic kids is hard as hell. But the way this ad began, and even the way it finished, was as if there is nothing good about autistic kids at all. And that's just a lie.

Posted by: mia_mcdavid (mia_mcdavid)
Posted at: September 25th, 2009 02:30 am (UTC)
Re: I hate to disagree...

I love my kids, but I loathe their autism. I can distinguish between the two.

My Tom--have you met Tom? can't put more than a few words together, and those only with prompting. His only lengthy statements are echolalic, and you can't understand even those if you don't know the books he has. He's in a group home. He will never live independently. He has been hospitalized twice for generalized continuous violent rages.

Don't get me wrong--I hadn't realized till I read some of the comments to your post that these were the anti-vaccine nutjobs, and I have no sympathy with their pseudoscience. But that autism is horrible, and debilitating, and painful to have and to watch--that part's true. My boys' autism has broken my heart.

Posted by: Haddayr Copley-Woods (haddayr)
Posted at: September 25th, 2009 04:14 am (UTC)
Re: I hate to disagree...

I think this is what upset me so damn much about the video. Because there is a kernel of truth in it. Even though Arie is incredibly high functioning, I have had nights where I thought I would literally explode from the stress and the worry and the baffling nature of this disorder. I very much advocate for folks figuring out ways of preventing autism, such as some of the tentative studies scientists have been looking into with Vitamin D.

I also knew about Tom, although I haven't met him yet. But the tone that these ads take, even outside of their ridiculous endorsements of pseudoscience involving mercury poisoning and vaccines, dehumanizes and demonizes the children. It makes parenting our kids seem to be a neverending nightmare, and even with Tom I know you have some nice moments. It almost seems to come to the conclusion that they'd be better off dead, or never having been born. I don't think I exaggerate.

I believe that Arie's autism has given him some specific strengths along with the maddening frustrations: an extremely unusual eye for detail, an ability to focus on things for far longer periods of time than most kids his age (even if they aren't things I want him to focus on, necessarily), etc. Arie himself is shocked that anyone would want to cure autism -- he does not believe that he has anything that needs curing, nor do the kids in his class who are profoundly autistic. He and I somewhat disagree on this, but he at least deserves to have his voice heard and he at least deserves to be represented by people other than these fearmongers.

Imagine, for instance, an ad that realistically depicts the frustration of parenting an autistic child with referrals to actual, concrete help or education for your relations and your son's teachers instead of this hollow, melodramatic depiction.

Posted by: mia_mcdavid (mia_mcdavid)
Posted at: September 25th, 2009 01:52 pm (UTC)
Re: I hate to disagree...

Part of this is that "autism" as a diagnosis is so much a catch-all as to be almost useless; it can put Tom and Arie in the same category when they are so very different.

Posted by: Haddayr Copley-Woods (haddayr)
Posted at: September 25th, 2009 02:33 pm (UTC)
Re: I hate to disagree...

I agree completely. Oh, noes! We are agreeing in this thread that says "I hate to disagree"

As a matter of fact, they fit more closely than you may know -- there was apparently a very arbitrary decision by the U to label Arie as Asperger's instead of autistic, as his testing plopped him exactly on the center of the score between Asperger's and autism. And Temple Grandin is autistic, not Asperger's. The media reports on her as Aspergian because they are ignorant fucks who won't listen to her, but she didn't start speaking until she was 5 and through all of Jr. High and much of high school all she did was repeat phrases back at people in her echolalia.

There are long arguments back and forth often, I think, between parents of autistic parents when what we are experiencing is quite different, at least in terms of scale. You know Arie is sometimes violent (still -- sigh -- he attacked two of his teachers last week), but it appears to be very much on a different scale than Tom.

I am guessing this is why I can't see autism as a monster but instead as a sometimes awesome and sometimes awful part of Arie, but you see it as a monster. If someone handed me a pill that would immediately take Arie's autism away, I would cheerfully accept his refusal to take it and even encourage his refusal. I am guessing you would do the opposite, and it's all about how we have experienced the disorder.

Posted by: mia_mcdavid (mia_mcdavid)
Posted at: September 25th, 2009 07:26 pm (UTC)
Re: I hate to disagree...

Yep. As far as disagreement goes, at bottom we are made of fail!

Oh, and how I wish the antivaccine people would all contract polio!

Posted by: Haddayr Copley-Woods (haddayr)
Posted at: September 25th, 2009 07:45 pm (UTC)
Re: I hate to disagree...

Further up in the comments, a friend of mine mentions that although very few folks have died in Britain from contracting rubella (or is it measles?), quite a few women have been exposed to it in pregnancy, which makes their children blind and deaf. Even if the woman was vaccinated, just being exposed to an active case can cause this.

Information like this makes me wonder why it is legal to opt out of vaccinations.

Oh! And I realize that I misrepresented the insane asshole who was telling autistic people on the YouTube video that their mercury-damaged minds didn't work as an "Autism Speaks" supporter -- he also thought they were wrong about something. He was just a troll. It is true, however, that Autism Speaks keeps pressing for "more studies investigating the link between vaccines and autism," and their chief medical advisor recently quit loudly because of it.

Posted by: A Wandering Hobbit (redbird)
Posted at: April 17th, 2010 10:37 pm (UTC)
Re: I hate to disagree...

Not just blind and deaf: prenatal rubella is an environmental risk factor for autism. So if their goal is really preventing autism, they should be pushing the rubella vaccine on everyone.

Posted by: Greetings Fellow Comstoks! (fengi)
Posted at: September 25th, 2009 02:53 am (UTC)

I'm really disappointed with Alfonso for being involved with this. Given the sue-happiness and the psuedo-science, is there any chance they're connected to scientology?

I couldn't help but think, "Autism talks like one of the angels from Supernatural? I have to say if my kid was possessed by a deep male voice which narrated his condition, it would test my marriage because I'd be so busy screaming and hiding."

Also: "I am Autism. In the criminal justice system, sexually-based offenses are considered especially heinous..."

Posted by: Sasha_feather (sasha_feather)
Posted at: September 25th, 2009 04:36 am (UTC)

Wow.

One thing I am thinking about is how they ascribe agency to Autism here, as if it is a being with willpower, as if it has agency at all, rather than just being a name for a spectrum of diseases/conditions. And from there it's an evil agent, one that strikes at you and your loved ones, causes bankruptcy and marriage failure, but hey! Good news! It's an agent you can fight back against. With the power of LOVE, apparently?

Bizarre!!! And nauseating.



Posted by: Cody B. (codeman38)
Posted at: September 25th, 2009 06:41 pm (UTC)
own little world

What makes this video particularly awful is that, if you mute the sound and watch the footage silently, it's just a bunch of perfectly content kids and the occasional autistic adult.

The very same footage could have been used for something so much more positive. In fact, that's what I actually expected when I first read in a press release that Autism Speaks was releasing a film called "I Am Autism" and collecting these video clips for it. But no, it had to be this mess, which was worse than anything I had even imagined them putting together.

Posted by: thatgirl101 (thatgirl101)
Posted at: September 25th, 2009 07:58 pm (UTC)
flower

I am skeptical of all institutions and Autism Speaks will be lumped in with the rest for me, but I am hoping you can help me with something. You say Autism Speaks supports the vaccinations theory? I am not saying you are wrong, but where are you getting this info from? I don't see anything on their site. I read "Mother Warriors" and from my memory I thought Jenny was all pissed off because she can't find anyone other than parents to agree with her that vaccinations are the reasons for ASD. So, I am very curious where you are getting this info from...? (for the record I do not think vaccinations are the cause of ASD in my child)
That ad bothered me at the beginning and I have not seen it on tv so I won't get my panties in a bunch over it. For me as well, that ad does a good job of articulating my experience as a parent. This journey has fucking sucked. I understand some people with ASD don't want a cure and I get that, but I am tired of ASD and want to give my son a voice. I work all day with a son that cries and whines as his form of communication. I am scared of the future, but still hopeful. I hope that Autism Speaks can make more sensitive PSA's in the future. I also hope that you write them and share your feelings. Obviously one PSA can't articulate all view points, but I also feel that PSA could have been written better.

Posted by: Haddayr Copley-Woods (haddayr)
Posted at: September 25th, 2009 08:07 pm (UTC)

Every single one of their ads has emphasized nothing but negatives, and child with autism to: a fatal car accident, being hit by lightning, etc. In one of their pieces, a woman -- right in front of her daughter -- talks about how she contemplated suicide and murdering her child by driving them off of a bridge.

If this was just one stupid PSA, I'd have been annoyed, but not so scorchingly angry.

What especially bothers me is the tiny grain of truth in their ads: it is _not_ all fun and delight raising a child on the spectrum. I often felt crazy, isolated, terrified, and angry. I even disagree with my son Arie when he says he does not believe he or any of the kids in his autism class need to be "cured" of anything.

But the tone in all of their ads, and the scare tactics they use, and the unremitingly grim stance . . . . well, this ad in particular did not separate the children from the disorder. That was creepy. And none of their ads encourage inclusion, adaptations, or accomodations. They just make autistic kids and adults seem scary and dangerous.

As far as their support of the vaccine crap, I think this letter of one of their lead doctors says it better than I could:

http://www.autismsciencefoundation.org/ericlondon.html

What they keep doing is trying to be the "reasonable" voice in this. They keep saying: "We need more studies," when the lack of a link couldn't be more clear. They publicized a few court cases and supported parents who were suing vaccine manufacturers.

They are not solely focused on it; they position themselves as a dependable source of information and then they say these vague and suggestive things instead of speaking out clearly on the side of science.

I prefer the autism society -- they admit it's not easy, but then they SUPPORT parents.

Posted by: thatgirl101 (thatgirl101)
Posted at: October 1st, 2009 11:28 am (UTC)
flower

Thank you for taking the time to find that letter. It was honestly hard to walk last Sat for Autism Speaks (and raise over $600!) after we had this discussion. But, the walk went well and there other positives that we are leaving out.
I found this article that is similar to yours this morning. Thought you might like to see it.
http://jerobison.blogspot.com/2009/10/some-thoughts-on-autism-speaks-video.html
Thanks again.

Posted by: LdDurham (lddurham)
Posted at: September 26th, 2009 01:50 am (UTC)
Bring It!

That is just awful. Awful. Even in my darkest days, I never thought Autism was an evil entity out to destroy my life. I guess instead of reading and trying new things, I should have been getting my torches and pitchforks ready.
Thank you for sharing this. I've always been pretty ambivalent about this group. You've just made me realize I need to be a bit more vigilant against Evil Autism! Whoops, I seem to have swallowed a bit of the fear juice they spilled all over the place.

Posted by: BritHistorian (brithistorian)
Posted at: September 27th, 2009 03:52 pm (UTC)

Though I probably should watch this video ("know your enemy" and all that), I just can't bring myself to do it. I love my boys, and it's got me close to tear to know that there are people out there who think of them this way.

Posted by: Haddayr Copley-Woods (haddayr)
Posted at: September 27th, 2009 11:34 pm (UTC)

Good for you; why let it infect you? Wish I hadn't watched it, myself.

Posted by: BritHistorian (brithistorian)
Posted at: September 27th, 2009 11:51 pm (UTC)

I considered watching it at various points during the day, as I encountered references to it in various people's journals, but I finally decided that I had absolutely no desire to subject myself to it. Just knowing it's there - and that I can fight against it - is enough for me. And, in a strange way, something came out of that commercial: I'd never heard of ASAN before today, and now I've signed up for their mailing list. Take that, haters! :-P

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