Corina Becker: Communication Shutdown for Autism Awareness? No Thanks!

[Note: For today's post, "25 Things I Know as an Autistic Person" -- the first guest post on NeuroTribes -- I have offered this space to Corina Becker of the Autism Women's Network. Last week, after writing about Rudy Simone, a jazz singer with Asperger Syndrome, I came across a post on Becker's blog, No Stereotypes Here, taking issue with a viral fund-raising campaign planned for Monday called Communication Shutdown. Launched by a group in Australia that promotes early intervention for autistic kids, the campaign -- promoted with a YouTube video -- aims to raise awareness of spectrum disorders by convincing netsurfers to shun Facebook and Twitter for a day by downloading a $5 "chapp" (charity app) that helps fund autism organizations worldwide.

The notion behind Communication Shutdown is that by going on a network fast for a day, non-autistic people can taste the frustration and struggle that autistic people strive against their whole lives. "Steven Seagal to shutdown Facebook" announces the group's press release, touting the endorsements of celebrities like Buzz Aldrin, Fran Drescher, Miranda Kerr, Deepak Chopra, and autistic author Temple Grandin. "It wonʼt be easy for the [social-networking] addicts, but people in over 50 countries have committed to shutdown to raise funds and encourage empathy for people with autism who find social communication a challenge.”

The idea that going virtually mute is an appropriate way to honor autistic people — for whom the Net has opened new avenues of communication and community building — does not sit well with some autistic self-advocates. Instead of turning off, tuning out, and dropping off the radar, they’ve joined up with Becker to declare November 1st Autistics Speaking Day — a day that people on the spectrum step forward to tell the stories of their lives.Autistics Speaking Day logo

Planned activities include posts on blogs all over the Web, the Twitter hashtags #AsDay and #AutismShoutOut, a 24-hour “Communicate to Educate” chat by a parents’ online collective called The Coffee Klatch, and a dedicated Facebook group. Mike Stanton in England, whose son has Asperger Syndrome, explained on his own site, “Why not put on your metaphorical autistic goggles, raise money for autistic charities and raise autism awareness?… If I switch off my social networks, I am shutting out all the autistic people with whom I communicate with every day… It is a bit like saying that, in order to appreciate the mobility problems faced by people in wheelchairs, we will avoid the lifts and use the stairs instead.”

The goals of Communication Shutdown — promoting awareness and raising money to serve autistic people and their families — are worthy ones, even if viral campaign is flawed. (A spokesperson for the campaign told Australian ABC News that she hopes the two campaigns “can complement each other.”) Please give generously to the autism organization of your choice today and consider donating to the Autistic Self-Advocacy Network (read my recent Wired interview with ASAN founder Ari Ne’eman), the Autism Women’s Network, the Autism National Committee, or a local community organization. Small groups like this — staffed by autistic people and trying to get by without Steven Seagal and other boldface names to make pitches in mainstream media — have a hard time finding resources, particularly in this economy. Now I’ll get out of the way so that Becker, a 25-year-old writer and artist from Canada, can speak for herself. — Steve Silberman]

Corina Baker

Corina Becker of the Autism Women's Network

25 Things I Know as an Autistic Person

by Corina Becker

1. I know that when I step outside my door each day, I enter a world that doesn’t understand me. To me the world is a wondrous, confusing place that I must work hard to navigate. I often wonder how everyone else can stand to handle existence.

2. I know that if people really want to understand Autism, they should be listening to Autistic people. We are the experts of Autistic experience. Ignoring us won’t make us go away.

3. I know that I do not suffer from Autism. I suffer from a lack of understanding and support.

4. I know that being “high functioning” does not mean not being disabled. It means that my disabilities are invisible.

5. I know that having a disability does not mean inability.

6. I know that Autism isn’t what you think. I dare you to think differently.

7. I know that after the whirlwind of childhood, and the emotional minefield of adolescence, I emerged as an adult — still as Autistic as before, and still an adult, with all that entails.

8. I know that what is normal for me is not always normal for you.  I know better than to act upon the assumption that “normal” is the same for everyone.

9. I know that if you meet one Autistic person, you’ve met one Autistic person. The experiences, difficulties, strengths, personality and characteristics of one Autistic person does not reflect upon all of them.

10. I know that there’s a difference between not being able to communicate and not having anything to say.

11. I know that the world is an intense place. It screeches and screams, burns, freezes, and bursts into brilliance.  It’s a place where words are too small to express the explosion of emotions flowing out of me — a place where words have yet to be invented to express a fraction of the howling fury of frustration and panic, the aching heartbreak, the stabs of betrayal and embarrassment, the abyss of despair and confusion, the weightless ecstasy of joy, the soaring heights of pure wonder, and the warm embrace of security that I feel.

12. I know there are times when people just don’t make sense, but I try my hardest to understand, even if I’m not very successful.  I know that even when I can understand, it doesn’t mean that I know what to do.

13. I know that what’s called a lack of social skills for me — and requires me to undergo therapy when I mess up — is considered being rude for everyone else.

14. I know that lashing out isn’t the right way to handle things, but some days it’s the only way to deal with the thunder in myself. Sometimes it’s only my rage that lets me focus on what needs to be done.

15. I know that no amount of time is enough to fully fade the most intense memories; they stay just as sharp, crisp and clear as the day they happened.

16. I know sometimes the only other people who understand are those like me. But just because we’re similar doesn’t mean we’ll always get along.

17. I know that humans aren’t perfect. That doesn’t mean we shouldn’t try our best, but we should realize that we all have our limitations and we need to put things into perspective.  A mistake isn’t the end of the world.

18. I know that sometimes you need to let yourself fall apart so you can pick yourself up again and carry on. Nothing lasts forever — the bad or the good.

19. I know that one smile can go a long way.

20. I know that there’s no force in the universe that can make me give up my interests, my “obsessions” and perseverations.  These are my strengths, the passions I breathe through my being. I will not let them go without a fight.

21. I know the deep, dark fear of being alone, the stabbing pain of thoughtless words, and the empowering strength of friends.

22. I know you can have an excellent conversation without saying a single word.

23. I know that best friends are those who stay with you through all sorts of pain and struggle, who you would do everything you can to help without being asked.

24. I know that things don’t have to make sense when you’re having fun.

25. I know that diversity leads to the development, invention and creation of new ideas. Differences in thinking should not be shunned but celebrated and embraced. When we all work together to support one another, we can make a huge difference in the world.

Autistics Speaking Day sites

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11 Responses to Corina Becker: Communication Shutdown for Autism Awareness? No Thanks!

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  5. Jennifer says:

    We’re listening at the Gateway Project (www.thegatewayproject.org). We believe in research with autistic adults, not just about autistic adults so that we investigate research questions that are considered relevant by the autistic community.

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  6. Thanks so much for your post Corina.
    ***
    “10. I know that there’s a difference between not being able to communicate and not having anything to say.”
    ***
    I think about this a lot with my nearly completely non-verbal son. I know he has a lot of opinions about things, and we work hard to help him express himself.
    When we do understand, it is so great for everyone… most people think Jack has a great sense of humor.

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  7. Incredible – just incredible – thank you so much for participating in Communicate to Educate today.

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  8. Matt says:

    Loved this – a definite keeper. Thank you.

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  9. Sunday says:

    Absolutely stunning! I am going to link to this on my facebook page right now!

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  10. Rudy says:

    Beautiful, eloquent, succinct, moving, accurate. Lovely. Thank you!!

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  11. Jason Ross says:

    Well Said Corina!! I believe every statement said in this article people everywhere should use it as a guide to understanding any one. I really liked reading this list!!
    The potential impact it could make to helping others understand Autistic people or any one who does not fit in to society the right way is really positive, hoping it can help every one else understand.

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