I don’t know why I keep doing this. Well, I do, I guess. The facts need to get out there, and people also need to know that autistic people’s negativity towards Autism Speaks is well-grounded and based in fact. It’s not just some irrational negativity.
My rant, adapted from a message board debate:
The “I Am was offensive to a great many autistic people, and therefore warranted an apology. Whether the majority of their supporters supported it or not is irrelevant; the fact is it was hurtful to some people.
Any film is at best an approximation of “reality,” and I don’t think that was a fair representation even of those particular children. Are you aware that the families filmed were told not to clean their houses, dress themselves nicely, follow their children’s usual therapy schedules for the week prior, etc. before filming in the hopes to make them appear more hopeless? That’s not reality.
Furthermore, the major problem with the Autism Every Day video is that a parent—who then held a high position within the organization—talks about how some days she thinks of killing her daughter. She is presented sympathetically. That is a major problem!
Many autistic people—and not just those who are deemed “low-functioning,” BTW—do have some behavior challenges due to autistic impairments. I did, and still do, though I am not generally deemed low-functioning. But that doesn’t mean that those moments of difficulty represent the entirety of our lives! I have to say that I would be extremely upset if my parents went out of their way to make my life more difficult than usual, filmed me while I was having a meltdown, and then used that footage in a film that suggests that autistic people’s lives are only suffering and meltdowns. And used my suffering to raise money. That, to me, is unconscionable.
There is a similar problem, BTW, with the “I Am Autism” video, which uses footage of real autistic people—some of them adults who may not have consented to their images being used in that way. I find that incredibly insulting and problematic. To use people’s images to suggest that their disability is horrible, causes parents to divorce, etc…this is not okay. At all. And taking down the video from the web after a lot of people raise a fuss doesn’t make it okay.
It’s not simply a matter of supporting research or not. “Research” is a pretty broad category. I’m not going to say that no research funded by Autism Speaks is useful, because that’s not true. But broadly speaking their research priorities are not where I think they should be. And I resent that they are using my existence—because I am included in their “1 in 110” stats—and that of people I care about to raise money when very little of that money is going towards concrete gains for autistic people. I have the right to object, because they are claiming to speak for me while presenting problematic media representations and all but ignoring the bread-and-butter issues that people with disabilities face today.
And even though they may have taken down “I Am Autism,” I don’t think that we’ve seen the end of bad media representations from them. I believe they are still using the whole “Chances of your child being in a fatal car accident: 1 in 24,000. Chances of your child having autism: 1 in 110” schtick, which I object to. It may not be as obviously horrendous as “I Am Autism,” but I still object to it. I think their style of “awareness” promotes fear-mongering rather than genuine understanding, and I am worried that they are increasingly becoming “the face of autism” to the American public. And I think that even people who aren’t completely on board with neurodiversity should be worried, too. It is never a good thing for one organization to monopolize the public discourse on any given issue. Especially when, in this case, that often comes at the expense of actual autistic people being heard. I’ve seen way too many articles ostensibly about autism or related issues in which not one single autistic person is quoted. Oftentimes those same articles do quote an Autism Speaks representative, sometimes saying okay things, sometimes not. But to my mind, if Autism Speaks was really interested in including autistic voices, they would tell reporters to talk to autistic people too in writing these articles/news segments. Even autistic people hand-picked by them.
But I have yet to see strong evidence that they are genuinely interested in including autistic adults in meaningful ways.
Ugh. Even a split second of that rhetoric can do damage. :(
Locate your Children Quickly, Reliably
It’s every parent’s nightmare: the disappearance of a small child.
You’re at the park watching your 18-month-old dig in the sand. You reach into your beach tote to retrieve a water bottle, glance back to check on your toddler, and she isn’t there. Your eyes quickly scan the grassy perimeter, your heart begins to palpitate, and you tell yourself to stay calm while you ask for help. Every second brings increasing anxiety, until the moment when your child is, at last, safe and in your arms again.
1. Autism Speaks talks about us without us. Not a single Autistic person is on Autism Speaks’ Board of Directors or in their leadership. Autism Speaks is one of an increasingly few number of major disability advocacy organizations that refuse to include any individual with the disability they purport to serve on their board of directors or at any point in their leadership and decision-making processes. In large part this is due to Autism Speaks’ public relations strategy of presenting Autistic people as silent burdens on society rather than human beings with thoughts, feelings and opinions.
2. They use fear and stigma to try and raise money off the backs of our people. Autism Speaks uses damaging and offensive fundraising tactics which rely on fear, stereotypes and devaluing the lives of people on the autism spectrum. Autism Speaks’ advertising claims that Autistic people are stolen from our own bodies. Its television Public Service Announcements compare having a child on the autism spectrum to having a child caught in a fatal car accident or struck by lightning. In fact, the idea of autism as a fate worse than death is a frequent theme in their fundraising and awareness efforts, going back to their “Autism Every Day” film in 2005. Indeed, throughout Autism Speaks’ fundraising is a consistent and unfortunate theme of fear, pity and prejudice, presenting Autistic adults and children not as full human beings but as burdens on society that must be eliminated as soon as possible.
3. Very little money donated to Autism Speaks goes toward helping Autistic people and families: According to their 2008 annual report, only 4% of Autism Speaks’ budget goes towards the “Family Service” grants that are the organization’s means of funding services. Given the huge sums of money Autism Speaks raises from local communities as compared to the miniscule sums it gives back, it is not an exaggeration to say that Autism Speaks is a tremendous drain on the ability of communities to fund autism service-provision and education initiatives. Furthermore, while the bulk of Autism Speaks’ budget (65%) goes toward genetic and biomedical research, only a small minority of Autism Speaks’ research budget goes towards research oriented around improving services, supports, treatments and educational methodologies, with most funding going towards basic research oriented around causation and genetic research, including the prospect of prenatal testing. Although Autism Speaks has not prioritized services with a practical impact for families and individuals in its budget, its rates of executive pay are the highest in the autism world, with annual salaries as high as $600,000 a year.
— Ari Ne’eman, ASAN President.
<p>I might be writing an article about being autistic and proud and trying to get it published in one of my Uni’s newspaers.</p>
Autistic Pride Day is on the 18th. I’m sure we could discuss this and think of something to do before then. :)
I am taking a break from STFU, Curebies! for an indefinite period of time. Evan should pick up the slack (though with one mod who has more going on, we may end up with less posts).
A more detailed announcement can be found on my personal blog.
My brother has Asperger’s (which is a mild form of autism). It’s not a matter of not loving people as they are, it’s a matter of trying to help them live happy lives without struggling with the developmental problems that come with being autistic. My brother’s absolutely, incredibly intelligent, but people make assumptions about him because of his speech impediment and social interactions. I love him tremendously for who he is. But if I had the chance to free him of it so he could get a higher paying job, make friends more easily, and just live like those without it do? You bet I’d take it.
This sounds to me that you’re deciding for him (I read nothing about him having any input there). That’s really skeevy - in fact, it’s coercive. His mind, his choice.
Not to mention that a cure is… most likely scientifically impossible. And that seeking it is quite a magnificent waste of time (harmful and stigmatizing - there is nothing “less healthy” about an autistic brain versus an allistic brain). There are far better ways to help actual, real, existing autistic people, and fighting against the dominant cultural narrative about us is one of the most important ones.
It’s the people making the assumptions who are at fault. I’d rather not people make assumptions based on my (a)sexuality, and I’d rather not people make assumptions based on my disabilities. Ableism is to be fought along with heterosexism - neither is acceptable (nor is sexism, racism, classism, cissexism, gender binarism, of course).
Also, it’s rather ridiculous to differentiate between “mild” and “severe” (or “high functioning” and “low functioning”) autism because there’s no clear-cut differences and the criteria are rather superficial.
ETA: “Trapped” language (“free him of it”) is also problematic. Autism is a part of me, it informs my personality and my personality informs it.
It just makes me sad that people like this girl are spending so much time trying to “beat autism”. Couldn’t we just dedicate our time to loving people as they are instead of trying to “cure” them?
This definitely needs to be here. I apologize for being
scarce virtually nonexistent on this blog for quite some time.
I do think this girl’s heart is in the right place, but she should not be investing so much time and material resources into pursuing an unrealistic - and extremely morally questionable - goal.