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Posts Tagged ‘autistic adults’

There is a certain freedom I feel when I run – the rhythmic beat of my feet, the wind in my hair, the straining of my muscles and lungs, all contribute to a feeling that I am free to go, at least for a short while, wherever my feet may take me.  For a while, running served solely as my version of therapy.  Along with the everyday struggles we all experience in life, our family also has an autism diagnosis.  I will readily admit I struggled with the concept that my baby girl was not going to lead the life I had imagined for her.  It took me some time to adjust my way of thinking…evolve, if you will.  Initially running gave me an outlet, a place where I could funnel all my frustration and anger and return physically spent but mentally refreshed and recharged.  It wasn’t long thereafter that I realized that I could use my running, the activity that had given so much to me over the course of a year or two, and use it to help my daughter and those like her.  Running would not only help me deal with my daily struggles with my daughter’s autism diagnosis, it would help make the world a better place for her.

In the very beginning of our family’s journey with autism, my first thoughts were focused on a cure.  I was scared, not for me, but for my baby.  How on God’s green Earth was she ever going to make it without being cured of this…this…thing?  My initial reaction to Brooke’s diagnosis was because there was so little out there in the way of awareness and accommodation.  For months I would cry when nobody was looking, whether it was in the bathroom in the middle of the night or during the day when I was home alone.

Eventually I came to understand that what was best for my baby was autism awareness.  What would a cure mean anyway?  Who would I be left with?  Through our initial interactions with Autism Speaks, I became enamored with their awareness campaign and their dogged pursuit of health insurance reform on a state by state basis. In 2010 I began running for Autism Speaks in support of these two things, knowing that awareness and health insurance coverage for autistics would make my daughter’s life easier, better, more accessible.

Since Fall of 2010 I have run three New York City Marathons, two Boston 13.1 Half Marathons, one 100 Mile Ultra-Marathon and streaked 167 straight days while using the Charity Miles App, raising thousands of dollars, all in support of Autism Speaks because I believe in awareness and I believe in health care coverage for autistic people.

Awareness leads to understanding which in turn leads to compassion and empathy which hopefully evolves into acceptance and inclusion.  Health care coverage means families worry less and have more time to focus on what is most important – their family.

Suzanne Wright has painted me into a corner.  She has made it clear that her focus is on children and on a cure.  She has chosen to ignore self-advocates and the whole of adult autistics.  I understand that the autism she and her family experiences may be different than that of mine.  I even understand why some families seek a cure – I was one of those people once upon a time.  There’s a reason why they seek it, and for some, it has nothing to do with autism and more to do with how society, and certain advocacy groups, views autistic people – there is a difference.

Some day, Brooke will be an adult.  She will still be autistic.  My hope is that she will be able to advocate for herself and others like her if she so chooses.  I hope that people will listen to her just as intently then as they do now.

Suzanne Wright has painted me into  a corner because in her plan, there will soon be no room for Brooke; there will be no place for her in Suzanne’s world view.  Why does this matter?  Because Autism Speaks has the biggest platform, the loudest voice and the most money.

Throw me a bone, Suzanne.  Tell me you understand that there is more than just one autism.  Tell me that you understand that our children will grow up to be adults.  I know many parents mourn the child they thought they were going to raise.  Honestly though, how many parents, of any children, actually end up raising the kids they imagined they would have. 

There are times, Suzanne, where I and my family feel lost.  That doesn’t mean we are lost.  There is a huge, HUGE difference.  Throw me a bone, Suzanne.  Tell me that the opinions of autistic adults, no matter how they communicate, matter.  Tell me that you’ve gone back over your last op-ed piece and realize that your words were too harsh, too exclusive, too narrow.  Tell me you want John Robison back and that you promise to add several more autistic adults to your board so that you can better direct what it is that Autism Speaks stands for.  It’s right there in the name, Suzanne.  Autism Speaks.  Please, throw me a bone.

Running is where I find freedom – it is a joyful experience for me.  You can see it here after 26.2 miles of spreading autism awareness.

...after 26.2 miles of spreading awareness...

The New York City Marathon 2013…after 26.2 miles of spreading awareness…

Where does that energy come from?  My daughter…my autistic daughter who will someday be an autistic adult.  Someone who is only about 10 years away from not fitting into your model anymore.

What am I supposed to do Suzanne?  What am I supposed to do?  Throw me a bone, please, because you’ve painted me into a corner.

I leave you with this thought that came mind this morning:

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