Getting the Truth Out About Autism · 2005-09-19 18:40

The Autism Society of America recently issued a press release announcing a “rebranding campaign,” replete with a new patriotic-themed corporate logo; a website redesign; and a “jarring new initiative… portray(ing) the harsh realities of autism that are not currently communicated to the general public.” According to the press release, the initiative is specifically “targeted at corporate donors and those outside the autism community”—that is, it is designed to attract contributions and attention to the Autism Society of America, which now arrogates to itself the title, “The Voice of Autism.” Its new campaign is currently supported by Adamec’s Harley Davidson, Enterprise Rent-a-Car Foundation, Metropolitan Life, Janssen Pharmaceuticals, Coca Cola North America, MBNA, and Autistic Care.

ASA’s “jarring new initiative” takes the form of an expensive website, “Getting The Word Out on Autism” (www.gettingthewordout.org). The Flash-powered intro shows a photograph of an African-American family of three, parents facing away from each other on the left, a forlorn-looking, presumably autistic boy on the right. Ominous ripping sounds accompany bars of text that flash across the screen. Inch by inch, line by line, the photograph is slowly ripped in two.

1 in 166 children are born with it
24,000 will be diagnosed with it this year
It is growing at a rate of 10-17% per year
It is more common than multiple sclerosis, cystic fibrosis, or cancer. Combined.
Currently there is no cure for it.
It can tear a family apart.
It… is autism.

Segue to the home page, where the presumably autistic boy is pictured alone. We do not know whether the boy was happy to have his picture taken. We do not know whether he has been paid for the use of his image.

We read the introduction:

Living with autism can be a very cold and lonely life for a child. Not to mention, very challenging for the whole family. One day, that child living with autism, will grow up to be an adult living with autism.

Further, we encounter a Biblical reference:

Why are we doing all of this? Why not just turn the other cheek like so many before?

Like so many before…—here suggesting that the ASA alone seeks to “put all the pieces of this puzzle back together”—that is, unlike its competitors for financial support in the “autism world.”

Moving on to “Autism 101,” we find a photograph of a girl—presumably autistic, huddled against a wall, hugging a stuffed panda. We do not know whether the girl is afraid of the photographer, or whether she wishes to be photographed. We do not know whether she has been paid for the use of her image.

A brief definition of autism is followed by the 1:166 prevalence statistic. The drama then heightens, the sense of urgency escalates:

That’s 66 children per day, nearly three an hour, one every 20 minutes.

Autism is then anthropomorphized as uncaring, malevolent, no respector of persons:

Autism knows no racial, ethnic, or social boundaries. It doesn’t care how much money you make, what kind of lifestyle you lead, or what your education level is.

Three videos are linked from the page, “Real Life Stories.” Their titles—“The Six Letter Word,” “1 in 166,” “Autism Doesn’t Care”—suggest that autism is a dirty word, a stroke of bad luck, a heartless monster—a thing that might strike even wealthy, well-educated families—that is, even those families being targeted by this high-bandwidth fundraising campaign.

The videos open with typewritten text against a dark, gritty wall, then fade to the image of a well-dressed Caucasian woman in a pale business suit, sitting on a pure white couch. Neither her children, nor her husband, nor the presumably autistic children displayed on the preceding pages, are anywhere to be seen. She speaks of the difficulties and altered expectations brought to her life by the existence of her two autistic children. She states that her children are the source of her “greatest joy and greatest sorrow.” She speaks of the hardships that she and her husband endure; one must watch the children while the other dresses for work. She speaks of buying diapers for a longer term than she had anticipated—until each son was five years old. She speaks of her “devastation” that her younger son did not thrive in the same day care center that an older son attended. (Presumably, it is inconvenient for a two-career professionals’ marriage to be burdened with children on the autistic spectrum.) She speaks of her shattered dreams—her children might not become the “great pianist” or “great artist” or collegiate that she had hoped for. (Presumably, she is unaware, or chooses not to acknowledge the fact that pianist Glenn Gould, artist Andy Warhol, and a great many prominent academics and intellectuals, have displayed pronounced autistic traits.) She speaks of not being able to do “the normal things you do with your kids.” (She does not speak of what her sons like to do.) Hers is not the life she thought that she would have. She says,

There is nothing normal about our lives. Nothing.

She wonders aloud about all the possible causes for this “tragedy” that has been brought to their lives:

Is it something I did when I was pregnant? The food I ate? The vaccines? Is it my living in this environment? Is it… any number of questions?

She asks any number of questions, except for the question that so many seek so doggedly to avoid:

Might our children have been born autistic? Might autism be part of the human condition, and part of our family heritage?

The mother assures us:

I’m very careful about what I say in front of them in terms of negativity. I think they’re much more aware than even I know they are, so I never express around them or to them that I’m sad I am about the way they are.

But she does not seem to consider whether they might not be aware of how she speaks of them to the entire world. Might they not already be aware that she refers to them as the source of her “greatest sorrow”? As the source of their family’s utter “abnormality”?

We do not see them, and we do not know.

We do not know whether anyone ever considered whether the boy or the girl in the photos, or the unseen children of the tragic mother, eyes glistening with tears, might one day be disturbed to learn that their images and their stories and their mother’s sadness about “the way they are” were used to provoke horror and pity, and to attract funds to an organization that describes their “cold and lonely” existence as capable of “tearing families apart,” and proclaims that their survival to adulthood is “devastating.”

Yes, “devastating” is not only a word used by the mother, but also by the Autism Society of America. In the initial version of the site, the last sentence of the first paragraph read:

Even more devastating is one day, that child living with autism, will grow up to be an adult living with autism.

These words were changed with days of the site’s unveiling, to words presumably less inflammatory—less objectionable to those who spoke out to object. However, the goals and the tactics of the campaign remain unchanged—this, in spite of prior objections voiced by many members of the Autism Society of America.

Indeed, representatives from 197 local chapters from around the nation had met in Nashville, Tennessee more than a month prior to the unveiling of the “jarring new initiative,” had an opportunity to view the site, with many grassroots leaders reportedly protesting the use of such pity-mongering fundraising tactics. Such protests, however, ultimately had no influence upon the Board’s decisionmaking.

Money is everything, it seems.

The individuals who conceived and produced and seek to profit from this campaign clearly assumed that “adults living with autism” might not care that an organization claiming to advocate for their needs characterizes their lives as “cold and lonely,” and would be so dismissive of the potential and value of their lives as autistic people, to the point of describing their survival to adulthood as “devastating.” In fact, it is “devastating” that a public education and fundraising initiative launched by an organization formerly known for its embrace of autistic citizens of all ages and all levels of functioning, should so blatantly pander to the emotions and to stereotypes of autism held by those who are not themselves autistic.

It is truly “devastating” that the Board of Directors of an organization that proclaims itself “The Voice of Autism” would portray autism as a thing, and disregard the fact that autistic is a kind of people. While it cannot be denied that many individuals on the autistic spectrum experience significant difficulties throughout their lives, it also cannot be denied that many of those difficulties arise from rampant misconceptions about the nature of autistic difference, including the unfortunately widespread perception that they embody a form of “devastation,” that they are dissassembled “puzzles.” Such misconceptions perpetuate a climate of fear, pity, mockery and exclusion of autistics, and prevent them from achieving personal fulfillment.

It is laughable to think that the ASA Board of Directors might think that such a hoary corporate development strategy is “innovative.” In fact, the “pity-party” approach to fundraising has been prominently condemned by disability rights activists for years. Jerry Lewis and the Muscular Dystrophy Association were forced to reconsider their tear-jerking, “poster child” fundraising techniques years ago, and to issue apologies to those they had demeaned. This was a great step forward in affirming the right to dignity of individuals with disabilities, and their right to be free from exploitation by nonprofit organizations in their fundraising efforts.

Alas, this history seems lost on the Board of Directors of the Autism Society of America.

Considering all the money obviously spent on the ASA’s “jarring new initiative,” one must ask: How can such an endeavor possibly enhance the quality of life for individuals with autism? Should “Be Cured or Be Forgotten” now serve as the organization’s motto?

One also might ask whether the true “devastation” represented to the ASA by the existence of autistic adults, is the possibility that some of them might one day be able to communicate their own priorities, protest the perpetuation of pathetic and exploitative fundraising techniques, and challenge the ASA’s hubristic self-designation as “The Voice of Autism”—a voice that disregards the objections of its own constituency, and of autistic citizens themselves.

Fortunately, autistic citizens have taken the initiative to do just that. It will be even more fortunate if the world is willing to pay attention.

Getting the Truth Out is a powerful presentation about the “harsh realities of autism” by an autistic woman who has chosen anonymity because the images and experiences she presents are so personally revealing. The realities of which she speaks are far different from those that the besuited professional woman in the videos, or the Board of Directors of the Autism Society of America, are likely to acknowledge.

Getting the Truth Out is about the realities of living as an autistic citizen in a world where the voices of autistic citizens are routinely ignored. It is about systemic injustice embodied in institutions and organizations that disregard the expressed needs of autistic citizens themselves in favor of the desires of those who care for them—no matter how temporary the caregiver status might be—and that appropriate images of autistic people—usually without their knowledge or consent—in order to advance their own economic interests.

Getting the Truth Out is a long read, and well worth it. It is best read in its entirety in a single sitting, which will probably take most visitors at least a half-hour. A video of the autistic woman using her communication device contains a particularly powerful message.

I urge you all to listen to that message.

From Getting the Truth Out:

Here are the words that should go with any pictures of me.

I am not an empty shell. Nobody is.
I am not a walking automaton devoid of anything inside me. Nobody is.
Nobody kidnapped me. I am right here. As are all of us.
As we are now, all of us are people and always will be people.
We may learn things or not learn things or forget things.
We may learn things without looking like we have.
We may look like we’ve learned things without doing so.
You will call us Kanner’s and Asperger’s.
You will call us high-functioning and low-functioning.
You will call us regressive and early infantile.
You will call us genetic and poisoned.
You will call us retarded and genius.
You will call us an epidemic.
According to your rules, not the rules of reality.

Throughout, we will remain at the deepest level people.
We will throughout remain who we are meant to be.
We speak with as many kinds of voices as there are autistic people.
We speak with our mouths. With our fingers. With our behavior. With our being.
In ways that may conflict or you may find hard to understand.
But our voices form a chorus, dissonant and harmonious alike.
That is more the voice of autism than anyone else will ever be.
We’re here whether you see us or not.
We’re real people whether you see us or not.
Our existence, our worth, and our personhood are not dependent on you.
They’re not dependent on being rescued.
They’re not dependent on being brought back from somewhere we never went in the first place.
They’re not dependent on you putting us on your false pedestal as holy fools or inspirations.
They’re not dependent on you pretending we’re exactly like you in a misplaced effort to make us comfortable.
Our place in the world is not always where you or we intend it to be.
Our place in the world does not always make sense.
Our place in the world exists as we are now.
Don’t ever forget that many of us are saying this to you with actions.
Every moment of the day.
Just as loud as we would if we had the words I have now.

Comments


  1. What She said. I’m too choked up to reply now, and could have nothing to add. — Clay    2005-09-19 19:58    #

  2. A person who probably is in a position to know, said that the photos on “getting the word out”, the ASA site, are stock photos and not of autistic people at all. I would guess that the first photo probably is a stock photo used to represent family breakdown or arguing that upsets a child.

    The person who said that they were stock photos said she had seen one of the photos on another site discussing drug abuse or violence or something.

    I guess we could ask ASA to confirm that.

    I don’t know if it’s worse that they are just “store bought” photos of models, or if that’s better because at least the models signed releases and maybe made some money off the deal. — Mirepois    2005-09-20 03:37    #

  3. Mirepois – I know that stock photos are commonly used in the UK to give a ‘human face’ where people want to remain anonymous (for example, for recruiting foster carers of teenagers who don’t want to be broadcasting that they are in foster care), but that there is always a disclaimer somewhere that this is what they are doing – I didn’t see one on the ASA site.

    (and not only did Enterprise-rent-a-car muck up my car rental they sponsor nasty websites too. Will definately not be recommending them to anyone) — MW    2005-09-20 07:06    #

  4. Mirepois, your friend was right. I searched today and found:

    The couple in the Flash intro, and the girl on the “Solve the Puzzle” page:
    http://www.fotosearch.com/IGS356/is540-031/

    The sad-faced boy:
    http://www.fotosearch.com/IGS164/is17058/

    The girl cowering against a wall:
    http://www.fotosearch.com/PHD162/25299/ — Kathleen Seidel    2005-09-20 18:11    #

  5. Lots and lots here, strongly and well put and truly, about the stereotypes of autism the ASA buys into. Thanks, Kathleen! — kchew    2005-09-22 17:50    #

  6. Once again, Kathleen, you have found something on which we can agree. I assure you that ASA is NOT the voice for my child, and I am not impressed by their new image. Not all of us in the biomedical movement are motivated by our own selfish desires to make our own lives easier. Every decision by a parent of a child on the spectrum—indeed a parent of ANY child—must balance the needs of the child, and not the parent.

    I was indeed moved by Getting the Truth Out. And Getting the Truth Out illustrates issues between the biomedical and neurodiversity communities that warrant further discussion (civil, of course). — Wade Rankin    2005-09-23 11:55    #

  7. We can usurp these ASA guys and create greater awareness of Autism and our place in society…but we have have to get Active and move fast.

    Listen, we, the Austistics of the World, are the most intellectually powerful community …ever.

    That said, we are enjoying a brief window of opportunity to be heard and respected due to the prevlance of email, blogs, etc. which are instant-but-serial communication forms. Our brains process information this way, which is why we tend, generally, to do so well with them.

    However, this age is going to end soon. I know this from my current employment as an engineer for a telecom manufacturor. “Real-time” commmunication is the the next-wave of prevalence on the “Big I.” ...and the technology is already there. When Voice and Video over IP become ubiquitous, in the same that email and blogs are now, we will have lost an important edge.

    So, we have a short window within which to band together and become “autisitic activists” and help shape a world in which we can be “outsiders” but with respect and accepted value, rather than disdain and bewilderment. — Jason Terry    2005-09-26 04:03    #

  8. Hi, I work with a couple of autistic fellows,so its been important to me to find this information. I need to define the reality of my work, ask the right questions and percieve the answers, when they come. — David Scott    2005-10-04 08:22    #

  9. I thank you from the bottom of my heart for having this available for me to read! I knew my boy understands more than he can say. My new outlook is, “He’s different! Ain’t it cool?” — echotig    2005-10-05 20:33    #

  10. There are times when I can’t speak for my boy. He still cant speak for himself. Thankyou for doing your part to give hime a voice. — bigwhitehat    2005-10-09 04:38    #

  11. I actuly had the stomach to read the site before I read this artical. There were many parts that I wanted to just scream at those idiots about. One thing that realy stuck in my mind was taht they compared autism to C.F., M.S. and Cancer. It is a false analogie. The three things they mentioned were diseases, diseases that are killing people around the world. Autistics don’t die because they are autistic. Unfortunately though some die because people don’t accept them. It goes back to the whole, war protesting durring world war two. government oficials said protesting the wasr was like yelling FIRE in a crowded theater. They are trying to make a point htat has no basis in reality. the two things are not conected. — Katie    2005-10-15 00:30    #

  12. I think your assessment of the article by the ASA lacks the perspective of a parent with a child who has autism. My daughter has autism and is doing much better now since she underwent intensive therapy, but for about a year prior to and a year after her diagnosis, life was hell. Your assessment of the mother in the article was more than a little judgemental. Autistic individual come in all shapes and sizes, and they also present with many different levels of functioning—many do not talk, nor are able to utilize any sort of language, verbal or non-verbal. For many children and adults living with autism, life IS a prison. If the ASA gets results from this article that realistically portrays the functional level of many autistic children, then more power to them. — KimKat    2005-11-14 00:33    #

  13. Thanks to everyone for visiting, and for sharing your comments and observations.

    KimKat, I am a parent of two adolescents, one with an autistic spectrum diagnosis. My assessment is the perspective of a parent, but it is obviously a perspective not shared by all parents. I have not critiqued an “article that realistically portrays the functional level of many autistic children.� Rather, I have critiqued a slick, carefully crafted propaganda website designed by a well-paid advertising firm, using stock photography, emotional language, and studio-filmed and edited, possibly scripted and/or fictional “testimony,� to evoke fear, horror and pity, and thereby stimulate the transfer of funds from the onlooker to a nonprofit organization.

    The video presentation provides much information about the emotional state of the mother, but provides only vague and ambiguous information about the supposed “functional level� of her children. The mother does not describe significant regression; even though her younger son is not speaking at the age of eighteen months, she enrolls him in day care, which suggests that he did not display significant impairment in his home environment. She states that her sons’ language is atypical, not nonexistent. She states that her children “were not toilet trained until they were five�—an inconvenience that many parents have had to cope with, but that distresses some more than others, and that some feel moved to bemoan more loudly, and more publicly, than others. The mother’s perfunctory reference to her children as the “source of her greatest joy� is swiftly overshadowed by “and greatest sorrow.� Throughout the remainder of the piece we hear nothing positive about her children or her family life. If the mother was not an actress, and if she said anything positive about her children during the filming, it was carefully edited out of a presentation obviously designed to accentuate the negative.

    Far from being realistic, accurate or informative, the Getting the Word Out website perpetuates inaccurate stereotypes about autism and disability. By focusing solely on the experience of parents of young children, and completely excluding the perspective of those who are themselves autistic, the site perpetuates the misconception that autism affects children only, and gives short shrift to the concerns and needs of autistic adolescents and adults. By including only the mother’s speculations that her children “will probably have to have supervision for the rest of her life,â€? the site perpetuates the misconception that children on the autistic spectrum do not develop, and that the majority of adults on the spectrum are (or should be) under custodial care. By including only the mother’s speculations about environmental contributions to autism without balancing them with mention of autism’s well-documented genetic component (even though she admits to having two children on the spectrum, a clear indicator that autism runs in her family), the site validates and even encourages the tendency of families to respond to socially-induced stigma by minimizing or denying the possibility of genetic transmission. This tendency to deny genetic transmission of objectively troublesome and socially devalued characteristics is very familiar to genetic counselors, and is not limited to autism. — Kathleen Seidel    2005-11-14 11:18    #

  14. Hi, I work with a couple of autistic fellows,so its been important to me to find this information. I need to define the reality of my work, ask the right questions and percieve the answers, when they come. — Celebs-iq    2005-11-18 13:01    #

  15. What an incredible piece. It shone a new light on our perceptions of autism. Thanks so much – Sandra Sinclair, www.autismvoice.com — Sandra Sinclair    2005-11-30 00:05    #