From the infamous-in-neurodiversity-circles group Autism Speaks: a video showing shot after shot of autistic children on their own, while a sinister voice-over purporting to be an anthropomorphised Autism Entity talks about how he will take great glee in stealing your children away from you to hide them behind a wall, churning through your finances, breaking up your marriage, and making you cry every morning with worry for your child’s future after you die. Then the families appear and [a multi-voice-over] talks about fighting the Autism Entity as if it has kidnapped their “real” children and left them with some changeling who doesn’t have “real” feelings.
So, here’s their Major Message: Kids with Autism are just so Difficult to Know and Understand, and such a Huge Burden to Real People. Secondary Message: supporting Autistic people here and now to live happily and productively is not nearly as important as raising money for cure/prevention some many years in the future.
FFS. And after all that representation of Auties as difficult and embarrassing people to be around, do they wonder why other people don’t want their kids to play with the Autistic kids, or that employers don’t want to give Auties jobs? Probably not. Because it appears to be all about Them. Autistic kids have no voice in Autism Speaks, and adult Autistics who criticise them? Oh well, they must be High Functioning or have Asperger’s Syndrome and are therefore not even Really Autistic appears to be the party line, and they can thus be ignored, because it is Different for Them and they Don’t Really Understand. Even though HFAs and Aspies are included in the “1 in 150” statistic that Autism Speaks loves to use for fear-mongering.
Link round-up here. It has been suggested that the families of autistic kids shown in the video may well have not been aware of the slant that the video was going to take when they sent in footage of their kids first on their own and then surrounded by loving family and friends for the second part of the video. They were just following instructions for volunteer families from the group’s website, and were probably excited that the video was going to be directed by Alphonse Cuaron (he has a child on the spectrum). I really hope they were deceived rather than willingly demonising their own children. And I really hope none of their kids are devastated from watching themselves portrayed as bogeymen who are ruining their family’s life.
SotBO: obviously, the most disabling manifestations of autism, just like any other severe disability, do constitute a very difficult emotional and financial situation for a family to manage. I don’t want to minimise the challenges that places on families.
But that doesn’t make the kids with severe autism monstrous, and just because the neuro-diverse have difficulty expressing their emotions in ways to which neurotypical people accustomed doesn’t mean that they don’t have emotions. This shit about Autistics being hopelessly broken doesn’t do any Autistics any favours, and actively contributes to them being marginalised at at school and in the search for employment.
Categories: ethics & philosophy, media
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This my axiom, by me, which is mine 
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Hoyden About Town 
Thanks, so well said!
I only disagree with one small point, I don’t think there will ever be a cure, or prevention any time in the future. Autism is as much a part of human variation like homosexuality, and the medical model is not based on good science, but on assumptions.
-Kowalski
@ Kowalski,
I agree entirely on the cure/prevention thing and autism as a normal variation. It’s the Autism Speaks people who can’t see it like that.
@balneus,
I had read something about that Danish company. I think there’s quite a few IT fields where people are aware of the high proportion of Aspies/HFAs they attract, but they don’t always have senior management that’s willing to tailor management style accordingly.
tigtog said “or that employers don’t want to give Auties jobs? ”
Good call, although I’d draw attention to something I posted on a while back, a 2008 Harvard Business School Working Knowledge article about a Danish boutique software testing company that has a 75% of it’s software testers falling somewhere on the autism/Asperger’s spectrum… and on industry-standard hourly rates.
The firm (sensitive because the founder is the father of someone on that spectrum) is smart enough to use tailored management practices that don’t pressure their workers, and help them do their best, at tasks where they outshine “normal” people.
My slant on this was that the skills shortage is in management, wanting fungible production units, rather than being innovative in the way they tailor management style to the employee, making best use of the “idiosyncratically talented” available.
HBSWK notes that the Danish company is a leader in the field of testing, doing the “too tough to automate” tests for companies like Microsoft, Oracle, and Lego, and that there are lessons for all “talent management” groups in companies.
I think it’s a great example – the world wastes the talents of those who, with a bit of smart management, can make enormous contributions, but are too often consigned to the scraphead.
This is an example of a new business model, the “social firm” or “social enterprise”, which is further described at http://www.socialfirms.co.uk/index.php/Section2.html
Oops, I just read that part again and yes you did paraphrase *their* major message. My bad.
I’ve added a few words to improve clarity on that, Kolwalski.
What do you think happens to children when their parents see them as “normal” children possessed by the grotesque demon called Autism? that ravages their physical health, their sanity, their bank account, marriage and their other children?
How do you think they are going to treat their child, when they see it like that?
Because the child doesn’t see themselves as “normal, possesed by something else.” As two separate things, one the “normal” “good” child and one the evil demon spirit. They just ARE. They are what they are, one person, with many traits, some conforming some not. And here are their parents, behaving abusively toward them.
Their parents think they are abusing away the demon spirit. The children think their parents are abusing THEM.
And yes, the medical “treatments” meant not to help the child live a better life but to “train the autism out” somehow (much like, as mentioned above, homosexuality) — and the neglect and the segregation and the obvious sorrow at something about the child, which the child can’t identify (except that it is about hir) — that is abuse. A-B-U-S-E. Abuse. And if that implication feels painful, consider how your child feels living it.
So they engage in literal dehumanisation of the people they purport to be advocating for?
…This stuff isn’t doing any favours to us “high functioning Aspies” either.
But this fits so well with the narrative I always heard about Autism when I was younger. One mother of a kid I was babysitting for when I was 14 went off on a rant about Autistic kids. Apparently, a kid in her son’s class had bitten him. Instead of just being immature, maladjusted, or having a bad day… the kid was Autistic (in her mind). And her idea of how an Autistic child should be treated was to isolate him from all other children his age, forever. Obviously, I wasn’t about to tell her that I am Autistic myself; though had I, I would probably have been told “Oh, you’re not like those others…”
Also, check out the comments on this thread by a professional woman with Asperger’s syndrome. Gotta love the paternalistic “You’re Asperger’s is making it hard for you to see why you’re a terrible person” comments.
@Amandaw, you have hit the nail on the head. Some of the treatments that are touted as a cure for autism are horribly painful and debilitating (“chelating” especially) and the whole message the kid gets is that there’s something fundamentally wrong with how they think and act that Must Be Fixed.
@ Sunless Nick, I’ve edited the post to be a little clearer that it’s another voiceover with lots of voices saying the words rather than the actual families whose images are shown saying the words, but yes, that is what Autism Speaks is doing.
@magneticcrow, That babysitting situation must have been very hard to keep your cool in. And the thread you linked to, wow.
That said, I have had a couple of run-ins on forums with people who use ASD as a reason to demand that others accommodate their “quirks” to an unreasonable (IMO) degree. I don’t see why I should unquestioningly accept behaviour over the internet from strangers that I wouldn’t accept from my own autistic spectrum children. In fact, I find that having drilled my kids hard in the rules of manners/etiquette helps them socially, because they don’t have to be all “intuitive” about their responses, they can just follow the rules.
Apparently there was a group flogging Hyperbaric chambers at the last big Autism conference here. Appalling. People are performing medical experiments on their own children all in the name of illusory overnight “cures”. I’ll stop now before I invoke Godwin’s. But it is that bad.
I’ve been trying since I read this to think of a response. So far I’m too busy being shocked and angered. It’s like all those horrible, invasive questions I’ve been asked “What would you do if your brother didn’t have Asperger’s?” Well, I don’t know, because he wouldn’t be my brother!
Are there any Autism Advocacy organisations which focus on reducing stigma and teaching parents/siblings how to live with Autistic children, which doesn’t make it seem like they are a “terrible burden” or “not real”? I’d love to offer them my support.
@PharoahKatt: The Autistic Self-Advocacy Network (ASAN) works to minimise the stigma against Auties, and has established support groups. Their support groups primarily focus on teens and adults, but you could always ask them if they know of anything for children – I’d be very surprised if they don’t.
This reminds me of the now-infamous ”ransom note” ad campaign in New York City, sponsored by the New York University Child Study Center, which portrayed “autism” and “Asperger syndrome” as “kidnapping” people’s children. (There was a nice New York Magazine article about the campaign to shut down that ad campaign.)
My son is diagnosed with Asperger Syndrome (originally as autistic, but then the DSM IV came out), and we have been fortunate in mostly running into professionals who were prepared to see my son as a human being and helped him to feel like it was worth the pain and trouble to try to relate to the rest of the human race, as well as helping us to see the humanity in him. [*] It helps that he is an extrovert. He is now in college (engineering — no surprise!, especially given all the techies on both sides of the family), and has become / turned out to be a (mostly) caring, empathic, idealistic person who I am proud to call my son. Maybe he would have been just as wonderful if he hadn’t had Asperger’s, but he would have been a very different person.
[*] There have been exceptions. When he was about 4 or so, we brought him to one rather famous neurologist — who shall remain nameless — who ran roughshod over his sensitivities (and ours!), then accused us of bad parenting because he wasn’t cooperative, and insisted that his psychologist’s planned therapy (play therapy, etc.) was a waste of time, that we should instead focus on behavior training. Guess who we never went back to….