Disability and Representation

Changing the Cultural Conversation

Guess What Happened to Me on the First Day of Autism Awareness Month?

Well, Autism Awareness Month is upon us.

Aren’t you excited? I know I am. So much to look forward to!

And guess what I got for the first day of Autism Awareness Month? Today, in celebration of this wondrous occasion, the admins at The Thinking Moms’ Revolution (an anti-vax site that runs on the dual premises that vaccines cause autism and that unproven biomed treatments can cure it) banned me from their Facebook page.

Yes. A page about autism banned an autistic person on the first day of Autism Awareness Month.

Way to go, Thinking Moms!

And what had I done, you ask? I had not gotten into a nasty argument about the spurious claim that vaccines cause autism. I had not gotten nasty at all. To the contrary: Over the course of two days, I had participated in a very civil discussion about the following graphic:



















Source: Facebook

[The graphic shows a photo of a baby sleeping, being held by a man whose mouth, chin, and nose are visible. The text reads "3.2% of boys may not achieve their dreams, travel the world, live independently, serve their country, become a leader, fall in love, be a husband, a father, or raise a family because of autism. 1 in 31 boys. Prevention, early detection, & effective medical treatment gives hope for a better future for our boys. www.thinkingmomsREVOLUTION.com. Take ACTION now for a better future. Please SHARE." ]

What do I mean by civil? I mean that I was respectful, well-spoken, and on point. I was not hostile, I did not call names, I did not cast aspersions, I refrained from profanity, and I took the time to think before I wrote. I began by leaving a comment along the following lines:

If this is the message people are sending out to boys and young men with autism, they are going to get exactly what they pay for: an entire generation of people who think that they’re incapable of achievement or happiness. People rise (or sink) to the level of our expectations, and they hope or despair for their lives accordingly. This kind of extremism does not build a better future for anyone.

I was told, of course, that the graphic wasn’t about me, because I am older and because I can read and write. I’ve been in enough of these conversations to understand the inevitability of that response, so I countered by noting that their 1 in 31 statistic includes people everywhere on the spectrum — those of us who can communicate online and those of us who cannot. I suggested that it was unfair to pad the statistics for their graphic using all of us and then tell us that they’re not talking to some of us. I noted that, in this case, the text is talking to all of us, and so all of us have the right to respond.

I was then told that because the word “may” appears in the text, the graphic is not alleging that every autistic person will share the same fate. I responded by noting that one could put the word “may” in for any population — after all, 3.2% of the non-autistic people reading this post may never achieve their dreams, or travel the world, or marry, or have children — but that it doesn’t take away from the impact of the graphic. The graphic still generates fear and pity, and it attaches that fear and pity to autism.

I know, I know. What a hideous thing to say.

I was banned after that.

I expect anything better? Sadly, I didn’t.

I bend over backwards to be civil. I really do. It’s central to my sense of myself as a writer and as a person. Anyone who knows me knows that. However, I never go into these discussions thinking that my civility is going to save me. I go into them thinking that my civility is what’s important to me, but that it probably won’t mean much to people who can’t handle disagreement in the first place, and who would rather shut it down than have a rational discussion.

Having a rational discussion is what it means to be a thinking person. And frankly, I’d like to see a revolution in the way we speak to each other. I’d like to see much more rational discussion across disagreement. But that assumes that people want to hear it.

Banning a person who exercises civility in disagreement makes it abundantly clear that the Thinking Moms don’t want to hear what we’re saying. Any claim they make to rationality or social justice is literally in name only.

Am I surprised? Of course not. I’m just taken aback by the irony of it happening on the first day of April.

Happy Autism Awareness Month, everyone.

Update: The offending graphic has been removed from the Thinking Moms page. Thank you to everyone who came over and spoke up!

© 2013 by Rachel Cohen-Rottenberg


    14 comments already | Leave your own comment

  1. 4/1/2013 | 6:47 pm Permalink

    Oo, that graphic made me aware of the devastating consequences of autism. I mean, it’s not the lack of support, or good educational methods, or people in the community taking an extra minute here and there… it’s all “because of autism” that any of us have any trouble at all in the world.

    In other news, racism is caused by people being born into other “non-white” races, and sexism is caused by chicks who couldn’t get their plumbing right.

    Eeeeshhh… I’m feeling more aware of what the real problem is than I’d like. I am sorry this happened to you.

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  2. 4/1/2013 | 6:56 pm Permalink

    Sounds like they misnamed their revolution. “Unthinking Moms” would fill the bill better.

    I once was one of those boys. I am now an old man, and I have done all of those things, or at least the ones I have chosen to.

    I assume that to “serve” my country (in their view) means being in the military. As a pacifist, I served my country in a different way (surprise!). As a college student in the Vietnam War era, I served as the national president of a student organization that opposed the War. Only one example of how I “became a leader”…

    I chose not to have children, but I have certainly fallen in love (too many times perhaps) and been married.

    Nearly every dream that I had, every goal that I set for myself, I achieved. Not in spite of my autism; not even because of it. Autism is an asset at times; a disability at other times. I am proud to be autistic, I am glad to be autistic. But I am more than my autism. I am an individual. A complex person. Just like everyone else.

    I don’t want to be “prevented” and I don’t want “medical treatment” (whatever that means). I want to be treated as an equal, with respect, and given a chance to show what I can do. And I can do amazing things.

    Rachel, thank you for your strong voice on behalf of all of us. Boys and girls. Men and women. Diversity is a wonderful thing.

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  3. 4/1/2013 | 8:30 pm Permalink

    Wow… I and a couple people from ASAN saw them at the Congressional Hearing on Autism last December. Their response to ‘Why are you here?’ left us with wide eyes- it was an epic moment when their hungry kids asked us if they can have some of our snacks, and then guess who was prepared and the first to help when they spilled OJ all over the floor… the empathy lacking, burden to society, unable to do anything for themselves autistics ;)

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  4. 4/1/2013 | 9:03 pm Permalink

    Posting a link to this on my Facebook page, Rachel. I’m just…stunned.

    And so, so sorry that you had to experience that. :(

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  5. 4/1/2013 | 9:46 pm Permalink

    Now that’s some good thinking! Wait. No it’s not. DAMMIT.

    Respond to this comment

  6. 4/1/2013 | 10:12 pm Permalink

    I watched that thread with a deep sadness, and participated untill I, too, was banned. Because I refuse to see my son as a statistic. I refuse to silence his voice. I refuse to see him as a tragedy. I refuse to think he has no hope. I am therefor not a thinking mom, am I?

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  7. 4/1/2013 | 10:31 pm Permalink

    I am a mother of two children with autism.The oldest is a boy and I was appalled by the insinuation that he will never become a productive member of society or have a chance at love an become a father! It was only tonight when my husband was tucking in our son that he remarked that my son smelled like a man (because he had used his dad’s zest body wash in the bath).Our son replied”Can I grow up to be a man like you?” My son already has goals at age 7.And 4 years ago he did not speak at all now he is a little chatter box.He still gets pronouns mixed up sometimes but nothing huge.He has progressed so much since his diagnosis because of early intervention therapy.I know by the time he finished school He will go to college and he will have all he desires because he is able.Who ever Did this poster must have their train of thought stuck back in the 60′s when they thought we should institutionalize our kids and forget about them because the world said they were lost causes.Well this is 2013 and I will not be turning my back on my children and my children will achieve whatever their heart craves for because they have the determination,clarity of thought,and ability to do so if people would give them a chance and by then I have a feeling because of your blog and parents like myself who go mamabear over crap like this acceptance won’t be an issue because of our hard work.For the info of this group on vaccination i vaccinated one child and the other I did not yet both children have autism.
    Adding “May”doesn’t take the sting out of it because the insinuation is still there and the negative incantation is not only offensive but is destructive when were trying to educate the world on the great possibilities and the realities that can happen if we work at it and believe it can happen.This group obviously don’t know the power of my God and they don’t know how awesome my son is.God help their son’s is all i have to say if they have given up thinking there is no hope!

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  8. 4/2/2013 | 12:26 am Permalink

    Who’s up for a rousing Tom Lehrer sing-along?

    National Brotherhood Week

    (Scathingly ironic. But you knew that already, of course.)

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  9. 4/2/2013 | 3:28 am Permalink

    Let’s have another helping of sweepingly prejudicial and stigmatizing quotes about Asperger’s, shall we?

    (Warning: Brace yourselves.)

    All people with Asperger’s are unable to understand other people and have a purely theoretical sense of empathy: they may understand intellectually that others suffer, but are unable to empathize emotionally the way those who “retain this ability” would do.

    They may go to a party and talk about this and that, doing business, etc. – but when it comes to a mutual give-and-take relationship, where you share and understand each other’s feelings, they are unable to handle this. Therefore, they are unable to establish lasting relationships.

    They are fundamentally psychologically lonely, and could be said to exist in a psychological prison, something which they experience as being subjected to an unendurable injustice.

    Most ‘aspies’ will never complete a full degree. They will not be able to be in a permanent job over time, nor will they ever get married.

    They will not be able to develop friendships with peers who embody the common interests, activities and emotions. They have impaired or deviant response to other people’s feelings. Eventually they will have a lack of spontaneously seeking contact with others to share enjoyable experiences and interests.

    Their way of experiencing the outside world causes a constant latent uncertainty.

    90 percent of them will experience depression. (Gee, I wonder why?)

    Oh, one more thing: These claims aren’t taken from some fringe Facebook page. They’re taken from the expert testimony of a textbook-writing university professor of psychiatry, and were broadcast live on national radio and television as part of the most high-profile trial in Norwegian history.

    God help us all in the future!

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    • 4/5/2013 | 8:28 am Permalink

      I am an Aspie who is in his mid 50s. As I read your post, I realized that I have experienced all of the stated “symptoms.” I had the epiphany that I was Aspie while advocating for my daughter who has all the classic traits. I was attending an ISD meeting and while listening to teachers describe the boys in their class with aspergers, I realized the behaviors they described fit the things I did when I was in school.

      I have come to understand that the main trait of Autism is that our “reality” is based more on what we imagine the world to be and less on the actual perceptions of the outside world, I had always imagined that I was successful. If you don’t recognize a problem, you can’t fix it. Once I realized I had a problem, I could start doing something about it.

      The graphic above does list the difficulties that can happen if an Aspie is left to their own devices. While I know there is no “cure” for Autism as I realize 98% of it is genetic (I do feel some Autistic-like symptoms can be brought on by food allergies) I feel the best treatment is helping us develop coping mechanisms to overcome our difficulties.

      I have studied Autism in college and also in trying to help my daughter. I have come to understand two things. One, the ends of the “spectrum” is how we perceive out reality. On one end, you have someone with no imagination and builds their reality based on all external input. The other end is someone who’s reality is based on imagination and gets no input from the outside world. This is caused by a neurological disorder that turns down the signals from the outside world like a volume control. The second thing I have come to understand it that there is a second spectrum that intersects the first like an “X-Y” axis and explains why Autistic symptoms are not the same across the board. This second spectrum is a left or right brain dominance. Left brain is black & white and doesn’t understand people’s emotions. The right side is a world of grays and while they don’t instinctively empathize, they can understand the concepts and all their various “shades.”

      Okay, I am doing one of my Aspie traits…rambling on over a subject I find interesting.

      Respond to this comment

  10. 4/2/2013 | 5:07 am Permalink

    I was wondering if they have asked you to take down this post. Though I’m glad that this offensive “poster” is no longer on FB, my gut says that they took it down to silence the discussion. As awful as the discussion was (“I just want my son to be normal!”) it was useful in exposing the ignorance of these so-called “thinking moms.”

    Respond to this comment

    • 4/2/2013 | 3:41 pm Permalink

      They haven’t asked me to take it down. And I wouldn’t even if they did. What happened, happened. It makes no sense to pretend otherwise.

      Respond to this comment

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  12. I love Autism Awareness Month! - Mostly True Stuff

    [...] http://www.disabilityandrepresentation.com/2013/04/01/autism-awareness-month/ [...]

  13. On “Autism Awareness Month” | Where's Lulu

    [...] It’s April 1st, which means it’s the beginning of Jenny McCarthy’s favorite month long event -Autism Awareness Month! If you’re wondering what exactly “Autism Awareness” entails, rest assured so are we. If you’re also slightly trepidatious that ‘disability awareness’ is often code for ‘random facebook memes promoting negative stereotypes about disability,’ then we are also with you. Our fears were confirmed by Rachel Cohen-Rottenberg, an autistic woman who runs the fantastic blog Disability and Representation. According to Rachel, she was banned from a Facebook group page led by (anti-vaccine) mothers of autistic children after noting her dismay with an offensive, fear mongering graphic. As she succinctly put it on her facebook page, “Irony abounds: On the first day of Autism Awareness Month, I was banned from the Thinking Moms page for expressing my disagreement and concern with their “1 in 31 boys” graphic. Yes, a page about autism banned a person with autism for speaking up about a graphic on autism on the first day of Autism Awareness Month.” Thankfully, she wrote about the absurd experience which you can read here. [...]

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