Now is the time for respect. In fact, I think respect is long overdue. From the perspective of an autistic, for respect to begin, some folks have to:

1. Stop misrepresenting or re-interpreting what austistics say.
2. Let autistics speak for ourselves.
3. Stop dismissing autistic perspectives as invalid.
4. Stop imposing artificial divisions among us.
5. Listen to what we have to say.
6. Stop throwing us under the bus.

On April 1, 2010, in advance of World Autism Awareness Day, I ran into an article on The Huffington Post written by a well-meaning woman, Liane Kupferberg Carter, whom I believe is unaware of her own bigotry and prejudice. An article asking for civility in a most uncivil and disrespectful manner. Given the date, I only wish it had been an April Fool's prank.

I include the entire article here in parody. Because bigotry and prejudice are so deeply ingrained, people often fail to recognize their own prejudice. In the parody, I have altered the text to highlight the bigotry and prejudice. I want the reader to recall that, while I too find some of the words I use as distasteful as anyone, there once was a time not all that long ago when these words were so ubiquitous people often failed to recognize their hateful nature. Imagine, if you would, the parody was written 150 years ago by a well-meaning person—a white abolitionist even—without the self-awareness of their own prejudice.

I hope the irony of writing such hate-filled bigotry while calling for civility stands out as clearly to you as it does to me. I hope even the author, herself, can see it when presented this way.

Based on The Huffington Post, April 1, 2010 – Autism: Time for Civility

On April 2, we will celebrate the third annual World Negro Autism Awareness Day. But there is a war raging within the negro autism community.

Parents are still pitted against each other over the vaccine issue, despite the fact that numerous well designed scientific studies have failed to show any causal link.

Negro Autism parents still fracture along the biomedical divide. Some parents say they have "recovered" their children from being negro autism, using treatments that are often expensive and/or haven't been rigorously and scientifically tested, while other families - mine included - have tried many of these same therapies and seen no results, or disappointing ones at best.

And then there is the neurodiversity movement. A growing number of people with House Negro Asperger's Syndrome or higher functioning negros autism are calling for us to embrace being negro autism, saying, essentially, don't fix us, we're fine. They believe that society ought to concentrate on accepting negro autistic people, not curing them. But try telling that to the parent whose field negro child doesn't speak, or will never be able to care for himself, and you will ignite a powder keg of pent-up rage.

We are seeing this play out in the news this week, with President Obama's recent nomination of Ari Ne'eman to the National Council on Disability. Mr. Ne'eman, founder of a self advocacy movement for house negros people with high functioning autism, is the public face of the neurodiversity movement, and would be the first person with a disability to serve on the Council. Many negros people affected by autism hail this nomination. Other white negro autism advocates are sharply critical. Jonathan Shestack, co-founder of the advocacy group Cure Negros Autism Now (CAN), a group that merged with The KKK Autism Speaks three years ago, told the New York Times: Why people have gotten upset is, he doesn't seem to represent, understand or have great sympathy for all the field negros people who are truly, deeply affected in a way that he isn't.

I happen to agree. But the fact is that appointing a negro someone from the spectrum to the Council - even though he does not speak for all negros persons affected by autism - is still a promising step, so long as it focuses greater awareness on negros autism.

I've experienced this war in the negro autism community firsthand. I recently published an essay called Cure du Jour, expressing my frustration with snake oil salesmen who prey on the desperation of parents with unfounded promises. People who disagreed with what I wrote vilified me in the white negro autism blogosphere, calling me a selfish, bitter and bad mother. But the next day I received a heartening email from Paul Offit, M.D., author of Negros' Autism's False Prophets: Bad Science, Risky Medicine and the Search for a Cure, who said, A brave, clear, forthright opinion. For which, no doubt, you will be hammered by those who hold a different opinion and, instead of engaging in honest debate, make things personal and mean. Hang in there... Sometimes doing the right thing isn't the easy thing. This is a man who knows a thing or two about personal and mean; since the publication of his book, he has received death threats.

Yeah. Death threats.

So on the eve of World Negro Autism Awareness Day, where do we go from here? Where is our community's common ground?

We all know the statistic. 1 in 110 children born in the United States today is negro diagnosed with autism. We still don't know what causes it. The numbers keep growing, and we don't know why. But whether you are trying to heal negros autism through genetic research, environmental studies, or are urging acceptance of neurodiversity, there is one thing on which everyone can surely agree: we love our children. They deserve greater awareness, acceptance and opportunity. We desperately need more research on promising treatments, and programs to meet the housing and employment needs of a population that is rapidly aging up.

On the eve of World Negro Autism Awareness Day, I'm pleading for more civility in our community. Open debate that is not personal, petty or mean. There's just too much at stake. How can we expect Congress to listen to us, when we are so divided among ourselves?

Our children deserve our respect. Our commitment. Our hope.

We aren't the enemies.

Dark skin and thick lips are Autism is.

I know some people will jump to conclusions and criticize me for throwing blacks under the bus. That is not my intent. I mean only to show that autistics are still under the bus and regularly get thrown there. While I have replaced every occurance of autism above, I do not want anyone to think I object to the word or that I am trying to turn it into some unspeakable A-word. I have no problem with the word. I am autistic, and I am happy with the name. I am not so happy with the meltdowns, which I take every measure to prevent—with great success. I am not so happy with decision overload or inertia. But I am happy with the name autistic and what that means for how I value things and how I see the world. The word is not the problem—the prejudice and bigotry behind the word is. Let's end the bigotry and prejudice before we have to abandon the word. Specifically, I object to the bigotry that divides autistics into arbitrary groups and to the prejudice that turns what makes me me into an enemy.

I also don't want anyone thinking I reject everything Liane Kupferberg Carter writes. I agree with her on many points she raises. Autism is a disability, and autistics do need support. Some autistics need a lot of support.

I tried posting a comment on The Huffington Post in reply to the original article. I consider my reply quite measured, calm, reasonable and substantive. It appears HuffPo forever banned me from posting comments immediately upon sending it. Apparently, Huffington welcomes writers to write bigoted and dangerously prejudiced articles that actually put people's lives at risk but bans anyone from pointing out the obvious nature of those articles. Ostensibly, they censor to protect the feelings of the writer and to foster substantive dialog. Oh, the irony.

Arianna Huffington owes me no platform, so I make my own. The exact text of my original reply was lost to heavy-handed censorship, but as I recall, it was very close to:

How can you say I deserve your respect and plead for civility when you call me the enemy?

We do have mutual enemies: ignorance, fear, bigotry, prejudice, hatred. Perhaps worst of all: indifference.

Misleading phrases like "a self advocacy movement for people with high functioning autism" are bigoted and foster dangerous prejudices. Amanda Baggs wrote recently exactly how such prejudice risks lives.

The words pervasive and developmental have real meaning. My autism is as much a part of me as the color of my hair, skin and eyes, and self-advocacy is for all of us—not just some of us.

That was what I wrote as a comment in the context of the original article and among a multitude of voices. Since I own this platform, I will elaborate further. Let me be clear:

1. It is no more civil to dismiss our organizations, movements and institutions as only for high functioning autistics than it is to dismiss the organizations, movements and institutions of african ethnicities as only for house negros.
2. The opinions expressed by Jonathan Shestack are misinforming rhetoric offered by a hate-filled propagandist. A hate-filled propagandist given a strong, clear voice by the NY Times.
3. Those who seek to divide us along some arbitrary and meaningless divide, seek only to deprive us our united voice and thereby our rights and our dignity.
4. Autistics receive as much personal and mean vilification from online kooks as anyone else—including death threats. However, autistics have greater reason to fear murder. Yeah. Actual murder.
5. What is a powder keg of pent-up rage if not dangerous hatred?
6. My austism is as much a part of me as my race. It has shaped my perspective and my values for every moment of my life. The statement Autism is the enemy is uncivil and rings as hateful to my ears as would blindness is the enemy or deafness is the enemy or dark skin is the enemy. More to the point, it runs the very real risk of driving the world to Procrustean solutions.

Most people know very little about autism. What most people think they know about autism is wrong. Just plain wrong. What passes for public service announcements from self-proclaimed autism charities amounts to hate-filled propaganda. These organizations are not run by autistics and arguably not for us either. They regularly throw us under the bus because doing so helps them gather up more of your money.

Even the Huffington Post article above misinforms and demonstrates the very poor quality of reporting and fact checking afforded to autistics. We know what causes autism: genes do. The same things that cause group average differences among races—like skin tone. Ari Ne'eman is not the first disabled person nominated to the National Council on Disability—the Council's own charter requires disabled representatives. He would, if confirmed, become the first diagnosed autistic appointed to serve. The message of the self advocacy movement is not don't fix us, we're fine. That's a bald-faced lie—and hardly civil. The message of the self advocacy movement is please, stop throwing us under the bus, and let us have a say in our own welfare. Or more succinctly: Nothing about us, without us! What's uncivil or dangerous about that?

Even the 1 in 110 statistic, which has empirical support, misleads. The research shows the incidence of autism is somewhere between 1 in 170 and 1 in 80 and the incidence of autism is stable. The incidence of autism has not changed; the diagnosis of autism has changed. Most older autistics have no diagnosis. I am convinced my maternal grandfather was as autistic as I am. While I never met my great-grandfather, I know he was an engineering type geeky enough to name his son after a famous inventor.

Most of the autistics in that 1 in 110 figure are house negros high functioning autistics with normal or better IQ, who often manage to muddle along no matter what abuse folks throw at us. Though it may surprise some, plenty normal or better IQ autistics cannot survive without support staff of some sort or another. Plenty normal or better IQ autistics communicate by means other than vocal speech. If we have normal or better IQ, what legitimate objection does anyone have to letting us make our own decisions according to our own values and to letting us have an opportunity to participate in the institutions and organizations that most affect our welfare?

A small fraction of that 1 in 110 figure lack normal or better IQ. A small fraction of the 109 non-autistics in 110 similarly lack normal or better IQ—granted a slightly smaller fraction. Some individuals will always need a guardian to speak for them at least some of the time. Nobody seeks to silence the 109 non-autistics in 110 or to denigrate the non-autistic perspective on the grounds that some unfortunate minority need guardians. Even among those who need a guardian, plenty have the wherewithal to decide some of their own decisions, to express their own values and preferences, and perhaps even to vote in elections. Perhaps not all, but still plenty. What responsible or ethical guardian would completely ignore the opinions of their ward? What responsible or ethical guardian would completely ignore the perspectives and 1^st hand accounts of those who face the same challenges as their ward but have greater ability to articulate the issues they encounter?

We autistics are a diverse group. In some respects, relatively more diverse than the typical population. Our ranks include all manner of outliers. Autistics include Field's Medallists and Nobel Prize winners as well as people who never learn to speak. And, of course, plenty of quirky but otherwise unremarkable average people.

I don't expect to agree with every autistic on every issue—or even on any issue. I no more expect to agree with my autistic representatives on any issue than I expect to agree with the President of the United States on any issue. But goddamit I demand that autistics predominate in guiding the institutions and organizations that claim to speak in our name or on our behalf — not just tokens but the majority voice. And I demand autistic representation in the institutions and organizations that affect us as well as others due to disability. I can demand those things without rejecting and even while appreciating non-autistic allies.

People like Temple Grandin, Jim Sinclair, Amanda Baggs, Michelle Dawson, Joel Smith, Kassiane, Janet Norman-Bain, Larry Arnold, and Ari Ne'eman are the Rosa Parkses of autistic people who stand up to proclaim: Hell No! We won't ride under the bus!

None of them speak for all autistics when they express their own opinions just as Liane Kupferberg Carter doesn't speak for all women or all parents or all people when she expresses her own opinions. However, just as Americans expect the President of the United States to speak for all Americans—not just those who voted for him and not just those who agree with him on any given issue—I expect any autistic acting as an official representative to speak for all autistics and to consider the views of all autistics. Instead of castigating our 1^st ever potential representative for not agreeing 100% with every autistic, how about granting autistics the fundamental respect of letting us hold our own representative to account?

After all, he would represent us — not our parents, not researchers, and not Liane Kupferberg Carter. Us. Autistics. All autistics regardless of how we communicate or whether we need staff to survive. We are quite able, thank you, to speak for ourselves and to hold our representatives to account. Well, in the role for which Ari is nominated, he would also represent the blind, the deaf, amputees, paraplegics, and a whole host of other disabled groups, and I expect he would consider their views too. As would they. I trust they will hold him accountable, and I respect them enough to let them.

Copyright © 2010 Bob Badour

Autism: Respect Long Overdue Discussion welcomes all civil opinions and criticisms.