together

jess
My kingdom to give various iterations of autism their own names. The spectrum is absurdly broad. #Autism is one word but there is no one autism.
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~ Twitter yesterday, 5pm.
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“There isn’t AN autism. There are autisms.”

~ Geri Dawson, Autism Speaks Chief Science officer, June 2011 (full post HERE)

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“As a community, we cannot stand divided. We cannot fight amongst ourselves. We must come together, we must stick together. We can argue behind closed doors, but when we open those doors we MUST be holding hands. We need to seek partners. We can only do that TOGETHER.”
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~ Mike Strautmanis, Deputy Assistant to the President, father of a child with autism. April, 2011 (full post HERE)
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“The words we use matter. Each of us, as autistic people or those who love them, serve by default as ambassadors to the outside world. In so doing, each of us shares a responsibility to the other. I believe that in order to uphold that responsibility, we must do what we can to avoid sensationalism, to stay away from hyperbole. We must work to create an understanding that autism comes in myriad forms, so radically different that often one is barely comparable to another. That its manifestations can vary so widely as to make their shared title a ludicrous farce.

I believe that no matter where we or our loved ones fall on the spectrum, we must always be cognizant of the fact that autism IS a spectrum. We ALL must think through the ramifications of our words from pole to pole before we speak for the spectrum in between.

Words matter.”

The White House, Part Five, April, 2011 (full post HERE)

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“We shoot ourselves in the foot every time we take aim at one another. We wrap our arguments in the rhetoric of extremism. We create then propagate division. We sneer at those who would seek a different path for their child – or themselves.

We write and speak of each other with careless disregard for one another’s pain – a pain we ALL should understand. We revel in snark and sarcasm, amusing ourselves at the ultimate expense of progress. We tear each other down when so much more could be achieved by holding one another up.”

The White House, Part Seven, April 2011 (full post HERE)

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Autism is one word, but there is no one autism.

Alas, for now that one word is all we have. So like it or not, we’re going to have to continue to figure out how to share this ill-fitting umbrella – this one name for all the myriad manifestations of this baffling disorder.
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Some iterations desperately debilitating, some completely incapacitating, some mildly challenging, some no more than delightfully quirky – all with just one name.
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We seek – no we demand! – tolerance, compassion, understanding. But how on God’s green earth can we expect those things from others when we cannot seem to show them to one another?
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We’re in this together. And like it or not, that’s the only way we’re going to be able to move forward, get answers and make this world a better place for our children.
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TOGETHER.
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18 thoughts on “together

  1. Jess,
    I just wanted to tell you how much you have inspired me. I am not even sure how I found your blog. I read the welcome to the club post….and I was all yours 🙂 I find no matter where I am…..grocery shopping, making dinner, drinking my coffee…I stop to read your newest post. It inspired me to start writing a blog also. It makes me stronger. So I just wanted to thank you. Very few things make me feel stronger on this journey….your blog is at the top!!

    • thank you so much. i can’t tell you how much this means to me and how happy i am that my words can help strengthen you. we walk this road together.

  2. Amen. We should be saying one word. Autism. It’s the only one that translates on any level. Is that fair? Nope. But it’s real. And to affect change we need to deal in the real. Thank you for saying this. Lather. Rinse. Repeat. 😉

  3. so true – not one of our stories are exactly the same but the needs are.. The need for understanding and support of one another is key.

    We only have each other to lean on – let’s just do it!!

    as usual, so typically, beautifully put, Jess!!

  4. Simply put – perfection. All of our experiences are remarakably different. I may be a Canadian by birth, but I still know the words of one of this country’s great leaders…’A house divided against itself cannot stand’.

  5. Alysia ~ amen.

    Liz ~ Yes!!

    Crystal ~ Love the ” we tear each other down when so much more could be accomplished by holding each other up”.

    Dawn ~ Exactly. Its time to embrace the broad variations in ability and disability on the spectrum and present a united front. Every person on the spectrum has abilities and disabilities and its time to stop fighting over who is more able or disabled like its some warped contest. Autism in any flavor is difficult.

    to quote Franklin “We must all hang together, or assuredly we shall all hang separately “

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