Monday, September 28, 2009

ASAN New England Protests Autism Speaks

In light of Autism Speaks' "I Am Autism" PSA and other controversial campaigns, the New England chapter of the Autistic Self-Advocacy Network (ASAN) is planning protests of Autism Speaks walks in Nashua (Oct 4) and Boston (Oct 18) . Walk locations are as follows:

Greeley Park
100 Concord St., Nashua, NH 03064
Registration opens 10am, walk starts 11am

Suffolk Downs
111 Waldemar Ave., East Boston MA 02128
Registration opens 9am, walk starts 10.30am

These protests come on the heels of successful Autism Speaks protests in Columbus OH and Portland OR. If you are interested in attending the walks in Nashua and/or Boston, please contact asannewengland AT hotmail DOT com.

Sunday, September 27, 2009

Autism Speaks, but What is it Saying?

An Analysis of Autism Speaks’ “I Am Autism” PSA

I am autism.
I’m visible in your children, but if I can help it, I am invisible to you until it’s too late.

“Children” falsely implies that autism primarily occurs in children. “Your children” shows that this message is targeted to parents of autistics, rather than autistics themselves. Autism Speaks cannot speak for autistics if it cannot even speak to us.

I know where you live.

And guess what? I live there too.
I hover around all of you.
I know no color barrier, no religion, no morality, no currency.
I speak your language fluently.
And with every voice I take away, I acquire yet another language.
I work very quickly.
I work faster than pediatric aids, cancer, and diabetes combined

Not only does this make autism seem worse than AIDS, cancer, and diabetes combined, but it also confuses prevalence rate with onset by using the word “faster”. Saying autism works “faster” than AIDS, cancer, and diabetes falsely implies that non-autistic children are rapidly being turned autistic.

And if you’re happily married, I will make sure that your marriage fails.

Your money will fall into my hands, and I will bankrupt you for my own self-gain.

How does autism make sure that marriages fail and people go bankrupt? This statement goes beyond warning and even beyond pessimism. This statement artificially injects a sense of certain doom into the situation. It makes no sense to give parents of newly-diagnosed autistic children this false sense of doom at a moment when they are likely to be the most vulnerable.

The line about bankruptcy brings to mind a eugenics campaign from 1926 that states: “Every 15 seconds $100 of your money goes for the care of persons with bad heredity such as the insane, feeble-minded criminals, and other defectives.” An advertisement comparing the intellectually-disabled and mentally-ill to criminals and calling them burdens on society would not go over very well today. Advertisements that characterize autistics as burdens on society should not be accepted either.

I don’t sleep, so I make sure you don’t either.
I will make it virtually impossible for your family to easily attend a temple, birthday party, or public park without a struggle, without embarrassment, without pain.

Why is parental embarrassment emphasized more strongly than anything the autistic child is experiencing? By not considering the way the autistic child feels, Autism Speaks again demonstrates lack of understanding and even lack of empathy toward autistic people. Moreover, the way to eliminate embarrassment at autistic behavior is to spread awareness about what autism looks like and what autistics experience. A group that spends 28% of its substantial operating budget on awareness should enlighten the public about autism, not use embarrassment as a threat.

You have no cure for me.
Your scientists don’t have the resources, and I relish their desperation. Your neighbors are happier to pretend that I don’t exist—of course, until it’s their child.

If these scientists are biomedical researchers, they will not have the resources because they are looking at autism from the wrong vantage point. Curing autism is not on the order of curing polio or smallpox. Autism is a way of being, not a disease that can be separated from the individual with the aid of medical treatment. Curing autism is less like curing a disease and more on the order of curing left-handedness or homosexuality.

Autism is much more than the handicaps secondary to it. There is a huge difference between curing autism and enabling an autistic person to communicate, self-regulate, mitigate sensory distress, and live independently. The former involves eradicating any non-normative individual difference, while the latter allows success in life for people on the autism spectrum.

I am autism. I have no interest in right or wrong. I derive great pleasure out of your loneliness.
I will fight to take away your hope. I will plot to rob you of your children and your dreams. I will make sure that every day you wake up you will cry, wondering who will take care of my child after I die?

These sentences again instill a sense of certain doom on individuals who are likely to at their most vulnerable. Also, the phrase “rob you of your children” implies that autistic people are missing their personhood. This phrase debases and dehumanizes autistic people, and leads to further stereotyping.

And the truth is, I am still winning, and you are scared. And you should be.
I am autism. You ignored me. That was a mistake.
And to autism I say:
I am a father, a mother, a grandparent, a brother, a sister.

...but apparently not an autistic person.

We will spend every waking hour trying to weaken you.
We don’t need sleep because we will not rest until you do.
Family can be much stronger than autism ever anticipated, and we will not be intimidated by you, nor will the love and strength of my community.
I am a parent riding toward you, and you can push me off this horse time and time again, but I will get up, climb back on, and ride on with the message.
Autism, you forget who we are. You forget who you are dealing with. You forget the spirit of mothers, and daughters, and fathers and sons.
We are Qatar. We are the United Kingdom. We are the United States. We are China. We are Argentina. We are Russia. We are the European Union. We are the United Nations.
We are coming together in all climates. We call on all faiths. We search with technology and voodoo and prayer and herbs and genetic studies and a growing awareness you never anticipated.

Technology and voodoo and prayer and herbs and genetic studies, but not genuine attempts to communicate with and understand autistics?

We have had challenges, but we are the best when overcoming them. We speak the only language that matters: love for our children.

If you love your children, love them for who they are. Understand their weaknesses and strengths. Bestow upon them no unrealistic expectations of success and no unrealistic expectations of failure. Work with them, and listen to them.

Our capacity to love is greater than your capacity to overwhelm.
Autism is naïve. You are alone. We are a community of warriors. We have a voice.
You think because some of our children cannot speak, we cannot hear them? That is autism’s weakness.
You think that because my child lives behind a wall, I am afraid to knock it down with my bare hands?

The wall metaphor brings to mind imprisonment imagery used in outdated psychiatry from the early 1900s. Simply put, autism is not a wall that a child lives behind. If you see autism as a wall that is separate from the child, you will not be able to knock down the wall without knocking down the child as well.

You have not properly been introduced to this community of parents and grandparents, of siblings and friends and schoolteachers and therapists and pediatricians and scientists.
Autism, if you are not scared, you should be.
When you came for my child, you forgot: you came for me.
Autism, are you listening?

From its title onward, “I Am Autism” uses anthropomorphism throughout. Although anthropomorphism can be an effective technique, the anthropomorphism used in “I Am Autism” falls flat by assigning a one-dimensional, villainous character to a very complicated and nuanced way of being. In fact, the entire cast of characters used in this piece is overly simplistic: autism is the villain, the child is a victim, and the parents are the saviors. Even beyond its simplicity, this model is totally incorrect. It separates the autism from the individual, and also undermines the strength of the individual by portraying him/her as a helpless victim.

“I Am Autism” demonstrates a serious lack of understanding of autism, as well as a serious unwillingness to address autism in earnest. The piece discusses how the autistics’ loved ones might feel, but does not address autistics’ experiences at all. This unwillingness to speak to us, and even speak about us, demonstrates that Autism Speaks is not suited to speak for us.

Thursday, September 24, 2009

Autistic Community Condemns Autism Speaks' "I am Autism" Campaign

“We are the true voices of Autism,” say Autistic adults; Campaign spreads stigma, prejudice and inaccurate information; ASAN vows protest of upcoming Autism Speaks fundraisers

Washington, DC (September 23rd, 2009) - The autism community reacted in horror today to Autism Speaks’ new “I am Autism” campaign, presenting Autistic people as kidnap victims and burdens on their family members and communities.

I am autism. I have no interest in right or wrong. I will plot to rob you of your children and your dreams….And if you’re happily married, I will make sure that your marriage fails. Your money will fall into my hands, and I will bankrupt you for my own self-gain,” says the “I am Autism” video, released yesterday and created by Academy Award-nominated director Alfonso Cuarón and Grammy-nominated songwriter/producer Billy Mann.

“This is the latest in a series of unethical fundraising strategies adopted by Autism Speaks,” said Ari Ne’eman, an adult on the autism spectrum and President of the Autistic Self Advocacy Network (ASAN), “This type of fear mongering hurts Autistic people, by raising fear and not contributing in the slightest to accurate understanding of the needs of Autistic adults and children.” ASAN’s Columbus, Ohio chapter has already made arrangements to protest Autism Speaks’ upcoming local fundraising walk and other ASAN chapters will be making similar arrangements shortly, said Ne’eman.

In addition to relying on fear and pity mongering to raise funds, the Autism Speaks video repeats frequently referenced claims of higher than average divorce rates amongst parents of Autistic children. However, a 2008 study conducted by HarrisInteractive for Easter Seals in cooperation with the Autism Society of America found divorce rates for parents of Autistic children lower than those for families with no children with disabilities. The video also relies heavily on the idea of rapidly increasing autism rates. Another new study, released the same day as the video, by the British Government’s National Health Service found that autism rates among adults are the same as amongst children, indicating that the popular “epidemic” claim of rapidly increasing autism incidence is likely false.

“This video doesn’t represent me or my child,” said Dana Commandatore, a parent of an Autistic child living in Los Angeles, California. “Whatever the challenges that autism may bring, my son deserves better than being presented as a burden on society. Autism Speaks’ misrepresentation makes my life and the life of my child more difficult.”

“Autism Speaks seems to think that parents' embarrassment at their kids' meltdowns is more important than autistic kids' pain,” writes Sarah, an Autistic blogger at the blog Cat in a Dog’s World, “Autistic people deserve better than what Autism Speaks has to offer.”

The new video is reminiscent of the December 2007 NYU Child Study Center “Ransom Notes” campaign, which consisted of faux ransom notes claiming to be from an anthropomorphized disability which had kidnapped a child. Those ads were withdrawn after two and a half weeks, due to widespread outcry from self-advocates, parents and professionals and the condemnation of twenty-two national disability rights organizations, led by the Autistic Self Advocacy Network. The Ransom Notes controversy was reported on by The Wall Street Journal, The New York Times, Good Morning America, The Washington Post and other major media outlets. ASAN announced plans to work with the cross-disability community on a similar response to Autism Speaks’ campaign.

“The voices of real autistic people, and of families who do not subscribe to the presentation of their family members as something sinister and criminal, clearly do not matter to Autism Speaks,” said Paula Durbin-Westby, an adult on the autism spectrum in Virginia, who serves on the board of the Autistic Self Advocacy Network. “Our community is furious about Autism Speaks’ continued exploitation and will be taking action.”

Selected initial responses to Autism Speaks’ “I am Autism” campaign from bloggers in the Autism community follow:

Club 166 (Parent):

“The above video takes up where the Ransom Campaign ended, and goes on from there. Not content just to dehumanize autistic individuals, the Autism Speaks video goes on to paint a picture of horror using the most vivid imagery it can find-your marriage will fail, you will go broke, you will never be able to function in society at all, etc…

Two years ago the NYU Child Study Center claimed ignorance of the way that autistic (and other disabled individuals) felt. The response at that time was heard throughout the country, even in major national media. I wonder what excuse Autism Speaks can possibly come up with this time.”

Turner and Kowalski (self-advocate):

“I am Autism Speaks

I will steal your voice and make sure you can never speak for yourself.

I will steal your parents’ money and spend it on a residence on Park Avenue.

I will use demeaning language to degrade, pity and marginalize you.

I have declared war on you.”

Emily (Parent):

“This is horrific. I cannot believe that these people thought it was OK to demonize a developmental disorder in this way, behaving as though autism were something separate from the people who have it, like a wart or a blight or a boil that should be burned off or lanced and drained before it infects someone else or destroys your marriage, rather than what it really is, a differential neural construct that is just as much a part of the people who have it as their eye color. Is there any other developmental difference or genetic disorder that could be vilified in this way with an assumption of impunity? Dyslexia? Schizophrenia? Tourette's? Depression? Chromosomal disorders? Doubt it.”

Sarah (Self-advocate):

“Autism Speaks seems to think that parents' embarrassment at their kids' meltdowns is more important than autistic kids' pain. They're wrong in that, and they're also wrong to suggest that donating money to Autism Speaks and trying to find a "cure" is the only way to solve this problem. Because while Autism Speaks-funded scientists play with genes in their laboratories, real autistic people are living our lives and will continue to suffer serious anxiety in many public places. Instead of writing another check to Autism Speaks, I suggest actually trying to figure out why an individual autistic person may be experiencing these difficulties. And taking steps on both a personal and societal level to ensure that public places are more accommodating of autistic people.

Autistic people deserve better than what Autism Speaks has to offer.”