Monday, October 29, 2007

Got Insight?

The National Autistic Society (UK) is asking people to Think Differently about Autism. Your insights are requested. I have added my own statement to this board and hope that other autistic people will do the same. The reply message stated that it may take as long as a week for the post to appear. Right now, they have four (4) perspectives up, all contributed by parents of autistic people. Be warned: though the campaign seems very autism friendly, at least in comparison to those of other autism "charities," you may encounter the words "devastating," "nightmare," and "poo" if you go there.
Please visit this link and let the NAS know what autism means to you.


  1. Day 3: Still only 4 parent perspectives on the Insights board.

  2. Hi Bev
    I just checked the site again and still there are only 4 stories, some of which are very negative.

    I sent this email to he campaign organisers;
    "I notice on the section of the web site inviting insights into autism, there are only 4 stories so far, all from parents, and some very negative about autism. I am parent to an autistic boy myself, and didn't write my insight on purpose, since I think it's far more important that the voices of autistic people are heard. I know that several autistic people have submitted their insights and am very disappointed that they have not been featured yet. Lots of people will visit the site only once and will never have the opportunity to read these people's thoughts. Please pass my message on to the relevant people to ensure that this is sorted as soon as possible.

    I do think this is overall a very good campaign and commend the NAS for running it."

    I hope they do change this asap as it's very discouraging.

  3. There are 17 viewpoints now, including 2 of us who are on the spectrum. That's an improvement, and I do appreciate having the chance to speak there. I'm curious if any other autistic people have submitted comments. Anyone?

  4. 2 out of 17 isn't much. I hope some other autistic people will write in too.

    I had a prompt reply to my email yesterday saying they were going to add more stories asap. However the signature line of the mail was the line,

    Autism is a serious, lifelong and disabling condition. Without the right
    support it can have a profound, sometimes devastating, effect on
    individuals and families.
    Help us to raise awareness and understanding.
    think differently about autism.'

    I mailed back to tell them that I wish they hadn't used that word and why.

  5. There are still a lot more hateful "insights" on there than there are positive insights. I worry that it's generally accepted that when folks ask somebody to "tell their story" about autism it means they're asking for horror stories. I don't think half these parents realize what they're doing when they tell the horror stories -- they may be doing what they think is expected of them, following the example. And it seems they think if they preface or conclude their stories with "I don't know what to do because I love him dearly" or "I think she is beautiful just the way she is", it'll somehow cancel out the negativity --?

    My absolute favorite "insight" is from this little gal here -- it's a kid's biography of a kid: "I am 9 and my brother Duncan is 7 and he is autistic. I like him, he is fun and we are best friends. We like to play together with my other brother on our trampoline and to run around and to go on our scooters and bikes. He likes to play with his trains and he likes it when we read stories to him. He's good at drawing and doing things on the computer. He doesn't like big bangs or when me or anybody else cries. I don't think his autism is a problem."

  6. My autism is a mixed bag. It can be a problem, yet it can be a godsend. The secret seems to be in learning how to navigate these waters. Like grandpa said: "Life is a combination of the hand you are dealt and how you play that hand"


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