The Voices of Autism

Symbolism: Puzzle Piece Rainbow Primary Colors Light Blue Dragonfly Butterfly Light Bulb Missing Piece

Main focus: Insurance Coverage, School Programs, Community Enlightenment, Military Coverage, Anti-Bullying, Early intervention, Ethnic/Racial Equality in Early Intervention, Celebrating Autism, Mourning Autism, Fighting Autism, Fighting for Autism, Petitions against Pop Culture Slurs of Autism, Articles Supporting Pop Culture Supporting Autism, More Therapy, More New Therapy, More Drugs, Less Drugs, Lets Work Together, Kiss my Ass

This is not an inclusive list of everything I see in a day involving autism. We are talking email and Facebook only.

Autism Awareness is a grassroots society. We are not specialists or authority figures. Yes, we have some of those. But the ones you will probably know are not. This cause has been taken up by mothers, father, siblings, other family members/friends, and autistic individuals themselves. We were placed into a situation that we knew nothing about. When we went to our doctors, they just shrugged and handed us some printouts. We googled like maniacs and found little help. We were put on waiting lists and told lots of confusing and contradictory things about what we should be doing. Each of us forged our own trail anew. We crawled down into the muddy trenches with only our soon-to-be-disillusioned dreams of the way the world is and our postpartum unfit bodies. When we crawled out on the other side, muddied, bleeding, and broken, we looked up at the sun we haven’t seen in so long and said, “Something needs to be done about this.”

So begins a journey. A journey to try to raise awareness, support, and aid for families dealing with autism. But we are doing it at 10:15 at night, or during our children’s nap time, or in between laundry, or on our lunch breaks at work. Again, we are each forging our own trail anew.

We try to reach out to autism organizations, but they are run by volunteers that are also dealing with autism in their lives and only have time to email while sitting in waiting rooms at therapy facilities. Coordinators are available from 9 am – 1 pm and not at 6 pm when you get home from work and your child is screaming about the different way you drove home because of a car accident.

So one of us chooses a puzzle piece, and another chooses a light bulb. We advocate for curing autism and for not curing autism. We want more drugs, we want less drugs. We are a huge composite of people who all want what is best for their child. And because autism is so varied, there is not one common goal or vision or best option. Having autism is like being a boy versus being a girl. We cannot have a world that is so streamlined for boys that girls cannot fit or flourish. How many people have to be included before it is no longer acceptable for those people to be excluded from society because of their differences? 1 in 54, 1 in 100, 1 in 1,000,000. 1 in 54 boys in the US are being diagnosed with autism. What does that mean? That 1 in 54 boys are disabled? That 1 in 54 boys are unfit for society? That 1 in 54 boys can be ignored by insurance companies?

Where does the fault lie? Time and time again, society has proven that it is capable of rising above the current situation and doing the right thing. People care about the underdog. They want to show all people they are accepted and are worthy of extra measures to ensure that they have every possible chance. This is not society’s fault. If the general population does not rally behind autism awareness and support, it is because they are not being given the reason to.

I am trying. I am REALLY trying to do what is right by autism awareness and I keep hitting brick walls and am constantly confused about which direction I should be going. Are we trying to get therapy paid for or are we trying to get more support for families who have to stay home instead of work? Are we telling people this is a disorder, a disability, or a gift? What the hell am I doing? And why can’t I find an autism website that is either easy to navigate or that has been updated in the last six months?

I am standing on the front lines saying, “Come on! Let’s do this!” Everyone around me says, “Ok, how?” “I don’t know! But let’s just start running and it will all work out!” People look around and shrug. “Do you know which way we are supposed to run?” “No! Just everybody pick a direction and go!” Nobody moves. Why should they? Going into battle without a plan is never a good idea. (Unless you are Chuck Norris. He always has a plan though.)

Our own difficult circumstances with autism are our biggest enemy. This is not an army, but a million untrained individuals.

How will this end? What will happen to our children? What will happen to the broken mothers standing alone on the battlefield? I don’t know anymore.

I know how to turn and face the lions for my children.
I know how to get up each day and know that today I will not give up.
I know how to admit that I don’t know what I am doing.
I don’t know how to show you autism in a way that will inspire you.
I know that my son really needs me to do just that.
I know my son will never be alone as I was alone.
But will others?
What are the names of the children with autism who slip through the cracks?
Growing up without ever having a seat in the lunch room?
Sitting in a crowded room and having no one excited to see them there?
Realizing their child has autism and having no world outside their home to reach out to because that world judged you unfit years ago?
We will never learn their names. They are the silent ones. The ones who know deep inside they are a bird in a world of fish. The ones who scream on the inside.

If I leave nothing else behind, it will be this: my sons’s names are Tyler and Asher. And their mother and father love them and are proud of them and wouldn’t change a thing about them.
I would do anything for them. I would change the world for Tyler so that his autism doesn’t represent a wall between him and everyone else.

But advocates of autism, we have really got to get our shit together.

From my heart,

Rachel

I will be walking for autism this October. My fundraising page is

http://www.walknowforautismspeaks.org/arkansas/rflinchum

(c) Rachel Flinchum 7/23/2013

Advertisements

One thought on “The Voices of Autism

Please let me know your thoughts!

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s