Thoughts and illustrations on living with Asperger's Syndrome.

Monday, November 1, 2010

Autistics Speaking Day: The Path to Understanding

Today is Autistics Speaking Day, a counter-campaign to the Communication Shutdown. If you’re a first time visitor to my blog, welcome! I’m glad you stopped by.

I disagree with the message of the Shutdown. But I still support you if you’re taking part, because we need awareness and funds raised by any means (that don’t disregard autism facts and science).

I am speaking out, 1) with today’s post, 2) by sharing some of my favorite links on Facebook and Twitter, and 3) by encouraging you to make a charitable donation to an autism organization of your choice. I am supporting my local agency Autism Delaware through my annual United Way contribution. I also recommend GRASP, the Global and Regional Asperger Syndrome Partnership.

I want to begin with a few words about social media. Yes, shutting down your social media for a day draws attention to a cause. No, it does not help you understand how it feels to be autistic. Ironically, you can get perhaps the best explanations of autism via social media.

My own cartoon, Dude, I’m An Aspie! owes its success to social media. And by success, I don’t mean hits, or dollars, but understanding. The project was conceived as a Facebook photo album to disclose to my friends, and nothing more. By happy coincidence, I posted it exactly one year ago today, 11/1/09. Here are some of the comments my friends made:

“I really enjoyed reading this and learned a lot.”
“Now I understand better, thank you!”
“Very illuminating. Thank you for sharing.”

It was a heartening feeling. I went on to share the cartoon in online Asperger’s communities, to continued praise. 

“Wow, does that ever define me.”
“One of the best ways of explaining AS I've ever read.”
“I've saved a copy to possibly use with my students in the future.”

And from there, "Dude" became a blog, and then a book. So without social media, there would be no "Dude, I’m An Aspie!" How else would I have disclosed if I could not have done it through cartoons? “Um, excuse me, there’s something I need to tell you about myself…” It’s more likely I would not have disclosed at all.

Instead, I’ve done it coherently, confidently, and humorously. Many others have used my cartoon for their disclosure. Over 1,300 individuals have visited my blog in the past 3 months. Indeed, for many of us on the spectrum, social media is truly our comfort zone. It would be unthinkable to shut that down.

I wish you could understand what it’s like to be me. I wish shutting down your social network for a day would do it. I wish my cartoons would do it, but even that gives you just a small glimpse. And just by listening to me does not mean you understand autism.

This is called Autistics Speaking Day, but I don’t speak for autistics. I speak for myself, and that’s the best I can do. None of us can speak for all of us. The autism blogosphere is richly diverse. We are the pro-cure and the pro-neurodiversity, the nonverbal and the Aspies, the diagnosed and the self-identified. We often disagree, to put it mildly.

Among us are bloggers who have viciously attacked others as “faux autistics” because they can hold down a job, act natural on camera, or dare to align themselves with the dreaded Autism Speaks. At the other end of the spectrum are bloggers who are happily married with families, and are published authors, or eloquent speakers. Both get under my skin for very different reasons. But I would not silence any of their voices. We need to hear from them all, and I include in “we” the autistic community as well as neurotypicals. Kathleen Leopold and Kim Wombles of the Autism Blogs Directory said it best:

“We are a community; we share common bonds and common ground, and we need, even as we disagree, to remember this. Because if we don't, we destroy what common ground we have.”

I think no statement better describes my hopes for Autistics Speaking Day. It explains why I also support the Shutdown. I have only been an autism advocate for about a year, but I have worked in the non-profit arena for nearly a decade. If you want to bring about change for an issue as complex as autism, you must build consensus and respect diversity. Anger and infighting will get you nowhere. The hostility and name-calling I’ve seen from both sides around the Shutdown and Autistics Speaking is shameful, and nauseating.

Which brings us back to the question, how can you understand autism? When you’ve met one autistic, you’ve met one autistic. Is understanding even possible with such diversity? I think so, and here’s how:

You can never understand us as a block, by lumping us all together. Only as individuals. I think that goes for understanding people. Not just autistic people, but gay people, or Tea Party people, or Muslim people, or whatever. Sit down, open your mind, and listen to us one at a time. That’s the best you can do.

So I encourage you, after you’ve visited my blog, to check out other voices in our community. If you see something you like, leave a comment, or share it with your social network. If you’re inclined to donate to a helping organization, thank you. And I hope you’ll stay connected with our community. We need as many voices as we can get, contributing to a passionate, educated, civil discourse about autism. That is the path to understanding.

Welcome.

20 comments:

  1. Excellently put, Matt. In fact, I came here from the Autism Blogs Directory. Have you seen either of my posts yet?

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  2. Hi, I run the directory with Kathleen, and am making visits to bloggers on the spectrum to say how much I appreciate having the chance to read the blogs of folks who have walked where my children now walk. :-)

    Great post!

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  3. Awesome, Matt! I'm speaking today as well.

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  4. I love, Love, LOVE this post. I appreciate your nuanced perspective and that if someone hold's a viewpoint different from your own you support their right in having it.

    I wrote a post that strikes a similar cord at midnight on Saturday...or it kind of wrote itself, just flowed out of me...like it sounds like this one may have you. I was still inspired by Jon Stewart I suppose.

    I don't have Autism (my son does), but I do have Non Verbal Learning Disorder, which is similar to Aspergers, but milder. It basically means I have both NT and Spectrum Traits. It is lonely to have a foot in both worlds, but to be comprehensively neither. Yet, I think it helps me relate to a broader range of points of views on developmental issues.

    Glad I found your blog.

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  5. Julian - thanks, I read one of your posts on the random facts about yourself. I plan to visit as many blogs as I can later after work.

    KWombles, thank you for the service you provide through the blog directory. It's been invaluable to me, that's why I shared it here.

    Sharon - thanks!

    Autism Mom Rising - I was absolutely channeling Jon Stewart! :) In fact, I did a bonus cartoon that didn't make it into this post - hope to share it at some point, and hope to visit your blog as well.

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  6. Great Post-thank you..I see Kim has been by already..This was an excellent post-thank you for writing it. :)

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  7. What a wonderful post, full of good sense. Thank you!

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  8. Thank you, Kathleen and bbsmum, for visiting.

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  9. Are you kidding, nothing shuts me up. LOL
    As always, Matt, great post.

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  10. Thanks, Matt!

    Have you hear of the Gateway Project (www.thegatewayproject.org)? They believe in research with autistic adults, not just about autistic adults. They investigate research questions that are considered relevant by the autistic community.

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  11. I think this was an awesome post! I've been reading some of your other posts and comments and I think you're a remarkable young man. The original cartoon is perfect, and I know my 10 y.o. Aspie can identify with every cell. Thank you for posting this and sharing your story.

    There is one thing you said that made me curious.

    "At the other end of the spectrum are bloggers who are happily married with families, and are published authors, or eloquent speakers. Both get under my skin for very different reasons."

    Why do these spectrum bloggers "get under your skin"? You're an eloquent speaker and published author yourself. I'm curious because it seems to me that those of us (me and my whole family are Aspies) who can be happily married and struggle through raising our Aspie babies could provide a window in to some of the good things about Spectrum life. Those of us living it are intimately familiar with the negatives and the stresses. Sometimes it can become almost unbearable. By reaching out and reading blogs of other moms and folks on the Spectrum, I've found community and solace, and even humor (as with your blog). I'm just curious what it is about those of us on this end that gets under your skin.

    Thanks.

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  12. Niko - thanks!

    Jennifer - no, haven't heard of it. Looks interesting!

    lifewithasperger - Thanks so much for the compliment. The statement I made could apply to anyone looking upward on the spectrum at someone who seems to have more, maybe who has things that seem out of reach. Meaning, not being published specifically, but generally achieving high levels of success or happiness. I have people I admire and envy at the same time.

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  13. Oh, I see. Thanks for the explanation. :-)

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  14. Here is the bonus cartoon that didn't make it into this post. Just think of me as Jon Stewart. http://on.fb.me/9wiJpo

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  15. I am glad I had the opportunity to read your blog Matt and will continue to do so in the hopes I will better understand the everyday issues you and other aspies have to deal with. I am not on the spectrum but for many years have been a passionate advocate for those with autism, especially those who cannot communicate. As in your drawing, "anger, rudeness, bullying, name-calling, threats and attacks" should not have to be tolerated by anyone. And we need to do our best with this.
    I understand how difficult it is to speak about the needs of those with ASD as one group, when there is so much diversity within that group. However, we do have to advocate for those at the more severe end of the spectrum, we know they need intensive therapies and funding. I wonder how many more would be able to communicate and enjoy social media if they had a computer and the support needed to use it ? I know quite a few.

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  16. Hi Matt! I recently discovered your blog and am loving going back through all your older posts! I first heard of Asperger's in late 2005 when my (then) 13 yr old son was diagnosed. Once I began researching to find out exactly what Asperger's was I realized this also answered a lot of questions about me as well. My son is no longer with us, he died in 2007, before we could really get him the help he needed. The reason I decided to comment on this particular post was what you said about some people calling others "faux autistics" because they hold down jobs or whatever other reasons people have. I am one of those that is able to hold down a job, but that doesn't mean its easy for me to do so. Its a struggle everyday to remember that I can't just blurt out everything that pops into my head, that I have to be very very careful of my wording, facial expressions, and tone when speaking with my boss and my co-workers. I've had more than my fair share of problems in the workplace because of being an Aspie! It saddens me that those that should be supporting us, encouraging us, are putting down on us because we aren't just like them. Every Autistic person is different and has their own unique battles to fight, just because I have different capabilities than someone else doesn't make my problems less, just different. A friend of mine believes completely that Jenny McCarthy and her organization will find a cure for her son's Autism, she and I don't see eye to eye on this issue, but that doesn't make me any less supportive of her and her struggles than it makes her of mine. Differences are what makes life interesting, this world would be a bleak, bland, and boring place if we were all exactly the same!

    Keep up the amazing work and thank you for sharing with us!

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  17. This was a great post and I'm so glad I had a chance to read this. You have a unique perspective that I want to hear. I'm looking forward to checking out the rest of your blog, and thanks for stopping by mine.
    alysia

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  18. Jean, thank you. You are right that those at the severe end need our support. I hope to continue educating myself to increase my own understanding of them.

    Laura, thank you for sharing. Unfortunately, there are some who doubt that we at the mild end experience hardships. Like Tony Attwood said, mild autism isn't mild to the person who has it.

    Alysia, thanks for visiting and I'm glad to have found your blog as well.

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  19. Matt, Thanks for the great post. I have bookmarked your blog and will be reading much more of it. I was directed here from the "Life with Asperger's" blog, which I greatly enjoy reading. My 10 year old son is an Aspie, even though not formally diagnosed. I just don't see the need to go those additional steps since I have found the reason he is the unique individual that he is. Thank you for speaking out about that and supporting that choice. I look forward to reading much more!

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  20. Thank you for visiting, Laura, glad you enjoyed it.

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