Monday, November 18, 2013

Stop Speaking and Start Listening

Written by Krystal

Originally published at Life-Where’s the Handbook?

I have submitted this post for the "This is Autism" Flash Blog - because those with autism like my children, like countless children and adults with autism like them...they are not what the loudest voices are screaming out - and together, we will work to re-write this wrong.

Re-Published 11/18/13

It's been a while since I have done an autism related post but this is something that I have to get off of my chest because I can't continue to let others think that they can speak for my children.

You see, I'm a big supporter of all things autism and awareness related.

I believe the more we spread the word the better awareness we have and the more acceptance there will be of our children and adults with autism.

I love that there are organizations out there willing to get our message across and raise their voices to those who need to hear our cry for change.

The thing is that the loudest voice, Autism Speaks, is well - screaming and shouting that our lives, ALL of our lives are, well, hell and that we are merely existing instead of living with our children and family members with autism.

Autism Speaks co-founder Suzanne Wright, in a call to action for a national plan, wrote this piece. I'm not going to put her words on my blog because I just don't care to see them on the digital pages I choose to express myself on. 

If you choose to read the posting, you will see how she paints our lives as mere existences of bodies trying to survive every day through the loss of our children. That our families are torn apart because of this disease called autism. She didn't use those words in exactly the way I've grouped them but that is because she has clever people who proofread her work to make sure she doesn't say the wrong things but guess what - she is.

She is not speaking for me. She is not speaking for my children. She is not speaking for my friends. She is not speaking for many families out there that do not see their lives as merely existing in the day or surviving until tomorrow.

Each family has different experiences. We cannot lump each other into a one-size fits all mentality because if so, we are doing our children, adults, families, caregivers and everyone touched by autism a huge disservice.

And yes, I say touched by autism because that's what we are - we are touched. We are not inflicted, afflicted, diseased, destroyed, impacted, etc. We are touched because those we love touch our hearts and our emotions.

My children are not like your child with autism, or my neighbor or my friend's, they are different - they all are part of a spectrum of autism. We cannot put them as a whole group and expect a standard plan to "fix" them. Especially a plan that does not consider them and their differences.

Yes, there are days that are hard. There are days where we cry and we feel pain. We are human and we have emotions. 

Nobody wants to see their child become frustrated because he can't get the right words out of his mouth to say what he is thinking or feeling. 

Nobody wants to have to clean up after their 9-year old son who has just urinated on the chair because he took your statement of "go pee-pee" literally and actually went pee-pee where he was because you forgot to say "go pee-pee in the bathroom". 

Nobody wants to have to watch their child rock and bang his head against the car seat because he is overwhelmed with some of the simplest of sounds while tears stream down his face. 

Nobody wants to hear their child scream that he hates his life because he is different.

Those statements are my life - those are 4 different children with autism.

But yet, that is not all that they are either.

They are children who can draw amazing pictures with such precision. 

Children who can sing beautifully even though they don't speak. 

These are children that can make you laugh at the silly things that they do. 

These are children that give hugs and kisses and bring light to my eyes.

And yes, our family is a "torn" family as Mrs. Wright would call it but not because of autism. If anything, autism was the one thing that my family was able to find common ground on. It was other things that caused our family to be "torn".

And yes, my children do not live with me, but it is not because I could not "deal" with them - it was because they deserved the continuity and stability that is so important to them and their continued success. 

So Mrs. Wright, how dare you say that you or your organization speak for my children when you clearly do not know them or what my family really needs?

They know what they want, they know what they need. You just have to listen to them. Pay attention to them. They will tell you in their own way. You have no right to speak for them.

There are many other things about Autism Speaks that go beyond their blanket approach to autism. 

There are the videos that they have released such as Autism Every Day or I Am Autism that depict "our lives" as hell and torture. I am not going to post them here because again, I do not want them on my page - if you are interested in seeing them, you can do a YouTube or Google search. One video went as far as having a parent speak about how she wanted to end her life and that of her autistic child but chose not to because of her other child at home. How is this helping our children?

The words and videos that Autism Speaks puts out there as "our voice" places our children and young adults as feral animals and diseased creatures that need to be cured, that need to be pitied, that need to be saved.

No - I'm sorry - my children do not need to be cured, they do not need to be pitied, and they definitely do not need to be saved.

They need to be accepted. They need to be appreciated. They need to be loved.

They need to be able to belong and considered people because that is who they are.

They need to be given opportunities to thrive and grow.

They need to be given resources to help them live every day and use the many talents that they have but are so often overlooked because they are judged by the loudest voices that do not speak for them.

If you really want to know what a life with autism is like - read the many blogs on my "Potential Handbooks" listing. Those are real families living with autism. 

They are enjoying the milestones and the love and the smiles while working through the hard times. 

They are a community of people who work together to support one another and say "you're not in this alone".

Those are the true voices of autism.

So Suzanne Wright and the rest of the people at Autism Speaks - its time to stop speaking, and time to start listening.

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