This is Autism.

Last week, Suzanne Wright, Co-founder of the organization Autism Speaks, wrote this. A “call to action.”  Here is a small tidbit of her words about autism families:

“These families are not living.  They are existing. Breathing – yes.  Eating – yes. Sleeping- maybe.  Working- most definitely – 24/7.

This is autism.

Life is lived moment-to-moment.  In anticipation of the child’s next move.  In despair.  In fear of the future.”

She uses words like “national emergency” and refers to children with autism as “lost.”

This is my response to Suzanne Wright.  I am not going to speak for anyone else but myself (just as Suzanne Wright should not have spoken for the entire autism community).  I cannot pretend to know what it’s like to be autistic.  I can only know what I see every day by watching my autistic son.  And what I know, without a doubt, is that we are not merely “existing.”  We are very much living.  We are not in despair.  We, in fact, have much hope.  And I do not consider my son a national emergency.  He is not someone to be feared.

All I can do is describe my family’s autism.

This is our Autism.

Some might say it’s lonely.  That may be true, but did it occur to you that Autism wants to be alone sometimes? Maybe Autism just wants to be.

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This is Autism.  It works really, really hard.  Sometimes it even works for tickles.  (Yes, Autism laughs.)

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This is Autism.  Proud of all the hard work.

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This is Autism.  Surprising everyone all the time.

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This is Autism.  Not normal, and not about to conform.

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This is Autism.  Finding the joy in every day life.

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This is Autism.  Looking at things from a different perspective.

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This is Autism.  Taking something simple and transforming it into pure happiness.

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This is Autism.  A tough climb, but determined nonetheless.

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This is Autism.  Because it’s always a good time to sing your heart out.

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This is Autism.  Not afraid to take risks.

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Is Autism exhausting?  You bet it is.

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But Autism is also love.

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Autism does not take anything for granted.

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Autism sees what I do not see, hears what I do not hear.

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This Autism.  Reminding me to just slow down.  Stop.  And take it all in.

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Autism Speaks does not speak for my family.  Suzanne Wright: My son is not a national emergency, and we are not merely existing.

We are living.


8 thoughts on “This is Autism.

  1. You gave me goosebumps … you speak for many families with autism, if not for all … more than Suzanne Wright can say.

    Those who don’t live it don’t get it. Autism is living life to the max, every day. Yes it’s exhausting, but my god it can be wonderful.

  2. Yes, this is our Autism song too. I interviewed my son on Autism and his perspective was interesting. Not at all the doom and gloom that Autism Speaks has said. Not to mention, I TOTALLY get the wanting to be alone. Great post!!!

  3. Thank you for your blog!
    With two autistic children 6 and 4 and a typical 2 year old I imagine having the sibling talks you spoke of with your 9 year old. We all need to set Autism Speaks straight. I give to my local FEAT!

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