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.

2 comments:

  1. Researching factors that increase the risk of having children who have autism and finding treatment that can help autistic people is a realistic goal. Curing autism is not. Autism is how nuerological pathways in the brain are formed in the fetus and it is impossible to fix that in a person. If people said they want to cure Down's Syndrome - nobody would donate money because it's obviously impossible.

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  2. This makes no sense!

    Autism cannot be cured at this point, but much improvement can be made.

    It is not a pleasant disorder to deal with, but there is so much support, resources, and strategies that can help people who want to make it work.

    IT is not a monster in the closet as this make it sound like but it's you or people just like you who have BOTH positive and negative to contribute to this world like everyone else.

    This makes no sense!

    This ad dehumanizes autism.

    'Autism' is not a tyrannical 'being' that has an overbearing power or control over your life where the only way to happiness is to get rid of it. Autism is not a highway to hell or a road to complete destruction of life.

    It's a big challenge, yes, but it is a part of you. It is OK to have autism, to accept it and the challenge that comes with it. Most importantly, it is possible to lead a good life WITH autism.

    Setting unrealistic goals will always lead to disappointment. Face it, understand it, accept it, and work WITH it, not against it!

    Again, this makes no sense!

    Hope comes from love, not from fear and hate. This ad makes one fear and hate autism. There is no hope in its message.

    Whoever is reading this, I want to give them hope.

    Autism is not fearful and not hateful. Autism is a mental-disorder, not a flash and blood enemy. Don't fight a ghost!

    Don't trivialize and don't enlarge! Welcome autism into your life! Understand the challenge, learn the strategies, use the resources, and love the person!

    Hajnalka Nyitrai
    Neuroscience
    Smith College
    10/1/2009

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