Just my two cents

Different not less.
Puzzle pieces
Autism Speaks
Are you a person with AUTISM or are you autistic?
Do you seek a cure?
Or do you want better understanding?

These are the things that threaten to divide the autistic community.  Where do you stand on the side of these slogans and/or organizations?

For me, the answer is simple.
I stand on the side of Jackson.

He is autistic.  He has autism.  He IS Different, not less.
Would I like for him to be “cured” of autism:
You bet your sweet ass I do.

Listen.
Jack and his network of support- we are waaaaaaaaaaaaay over here on the spectrum.  We are rather isolated.
Putting an iPad in front of Jack is not going to give us instant Carly results.  Schedules, icons, first/then charts, etc etc ad nauseum are part of our routine,YES, but we are not kidding ourselves here.
Jack is SEVERE autism.

SEVERE.
Add to that brain damage from infantile febrile seizures, a seizure disorder, and  Tuberous Scelrosis Complex and yes, we would very much like to take autism out of the equation.

Does that mean that I think ALL children/people with autism (or are autistic) should be “cured”?
Nope.
It means that I pass judgement only on what would be best for MY Jack.
I have worked with children on the spectrum.
I come in contact with special needs children and adults EVERY SINGLE DAY.
I speak for no one but Jack.

I am also not kidding myself.  I know there is not a magic wand out there on the horizon that will change Jack and his behaviors.  Only intense work by us (his family) , his teachers, and therapists.
It is a process.
It is one of extreme hard work and dedication.
It is not for the faint of heart or the lazy.

That being said:
Jack’s autism has shown him to have some endearing traits: his obsession with fuzzballs, his love of shadows and lights, his fascination with all things spinning, and his delight with the moon.

He is an open book with no hidden agenda

But, if I could, would I trade these endearments for Jack to be able to speak clearly, give direct eye contact and learn like a neuro typical?

Yes.
Yes, I would give all that I have and more.
I would love to see WHO Jack is without the obsessions, with complete language, and a mind of his own.

So Autism community:
Please don’t judge me when I say
I want a cure.

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2 thoughts on “Just my two cents

  1. It’s a really complicated bundle of emotions, I imagine, when you’re asked if you want a cure or not. I feel about different physical and mental life conditions in general that yes, you wish you didn’t have the different normal. But if you can’t change that today, you want people to understand and accept the different normal and appreciate what’s right and the ends achieved by someone else’s different way of doing things.

    That quote that’s circulating round the Pinterest and Facebook says it beautifully, “Be kind, for everyone you meet is fighting a hard battle.”

    Jackson seems like a happy and beautiful child in the videos and photos you post on Facebook. Certainly not less.

    • EFish…..there is a huge divide in the autism community over whether or not its acceptable to want a “cure”. That the autism world wants acceptance. Not to be changed….
      I get ALL of that. I do. I REALLY REALLY do.
      But at this point…..it’s quality of life really.
      Would I give my eye teeth for Jack to be “aspie” or HFA?
      YES
      But that does not diminish those that ARE “aspie” of HFA– they have their own unique struggles too.
      It is complicated.

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