June 23, 2014

  • Having a Tough Skin

    One of the most challenging aspects of working on Autisable is how incredibly diverse the Autism Community is...

    The diversity ranges from parents and grandparents who have children and grandchildren on the Autism Spectrum, to children and Adults who are diagnosed on the Spectrum.

    On top of this, each person diagnosed with Autism has an incredibly unique way of communicating their thoughts and ideas about specific topics.

    For many people, sharing an idea is rather easy - you have a discussion... a dialogue.  For others, it is an incredible challenge.

    Enter, the tough skin....

     

    On a recent chat on an autism community website, I wanted to be sure that Autisable is representing the Autism community well.

    The response I received was as diverse as the community itself:

    "make sure it's non profit" - as enough people are profiting off of the Autism community

    "generate your own audience! and stop stealing ours" - mind you, this was only the second time I was in the chat room and I made it clear I just had a few questions.

    There was everything from LEAVE NOW! to the difference between blogging and having a forum being discussed.

     

    I realized quickly what Autisable needed to do...

    1 - it will remain a for profit - but philanthropic in it's efforts.   Donating earnings to non-profits that actually help and benefit the autism community and individuals.   Funding research is not it's goal.  It's goal is to help people as directly as possible, and should help organizaitons fiscally that do the same.

    2 - keep an unbiased perspective.   This is what I've found that Autisable is known for - not taking a stance but to promote discussion.

    3 - help educate the media on how to appropriately share the challenges associated with Autism.   This is a major hurdle for many journalists/reporters - as far too often the first question I'm ever asked is my opinion regarding vaccines.... which is just a reflection on the lack of understanding as to what families deal with everyday.

    There's many more notes I've taken away from that visit to that chat room.

    The biggest, however, is making sure that everyone has a fair say - especially those who are diagnosed on the spectrum.

    It's because of those diagnosed on the spectrum that we do...what we do.... so we must listen - and act appropriately.

    Sometimes what people may say could be harsh, rough, brash....

    But having a tough skin will allow you to see the meat of the issues that are brought to the table....that they need to be heard and understood.

Comments (12)

  • It sounds very dicey. I wish you well.

    Teachers thought one of my great grand daughters had it, but a doc said NO. She does have some kind of personality that makes it hard for her to be friendly and express herself.

    My wife goes out of her way to communicate with her and not her cutie pie adorable sisters.

    • Autism can be tough to diagnose, especially of someone is more 'high functioning' - such as someone who has Asperger's.

  • A tough job - I don't know if my skin would be tough enough!

    • There's some days that are better then others. But after awhile, you get used to the usual craziness.

  • I think having a "tough skin" is important in all areas of life. You are doing a great job with Autisable.

  • I liked your Autisable page on Facebook.

  • I have Asperger's and am so 'bossy' that many people have a hard time being friends with me for very long. I don't realize I'm running over other people talking, or not face cueing enough to look interested or even in a good mood (unless I'm laughing, which I also do inappropriately), and I suddenly wear out and shut down in the middle of something important and drop the ball all over the place. My biggest joy has been learning how to verbalize through blogs, I can show the sparkly nice side, I have friends, and I can do this without pressure. Autisable was my foot in the door to this approach- had a few good arguments there. ;) Over time I've developed skillz, and now I'm able to help smooth the corners and bridge the gaps other people have a hard time with. I will always thank Autisable for that first launch into real communication. I know it's hard being there for people like me when we get caught up in the compulsion to correct and opinionate before we consider respect and courtesy, but I believe as time goes on that can change. I believe we can find ways to keep making understanding easier. I think you're doing all the right things for all the right reasons!

    • Thanks for sharing your insight. What you share here is what I shared with John in our discussion last week.
      We're working on getting Autisable back online. Although it won't be what it used to be in terms of functionality, we'll continually be working on it to improve it as things move forward after the relaunch. :)

  • I met Dan (Theologian) while I was on vacation just as Xanga was announcing the migration, and if I hadn't talked to him personally, I would have found it very hard to stay and hang in there. I have felt confident the entire team would never really leave anyone hanging, especially after they kept Xanga up all through Sandy and no power. Thank you for sharing these updates! =)

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