Saturday, April 2, 2011

Autism Understanding and Acceptance:Open Letter to the World

Awareness is not enough.

We (The Autism Community) need for you to know what Autism is.
We can only achieve that through Autism Understanding and Acceptance.

Awareness of autism has risen dramatically in the past few years, and awareness is certainly a good place to start. Increased awareness has helped parents get earlier diagnoses for their children, and it has helped secure funding for research. However, it hasn’t done much to change public perception of what autism really is.

This is a call out to the world to understand the people and the disorder.
This is a call out to the world to accept the people and the disorder.

You can not understand or accept the people until you understand and accept the Autism they have.

Autism is a part of who they are.

The media has focused almost entirely on children with autism – but children grow up. In a society where one in 110 children is diagnosed with autism (the latest figures from the Centers for Disease Control), no one can afford to ignore the significance of this disability. People with autism are children, teenagers, adults, men, women, scientists, programmers, engineers, unemployed, in care homes … too many of them continue to be bullied, to be judged, or to just be ignored.

Each person is unique. Each person has their own unique set of strengths and weaknesses just like you or I.

The charities, the organizations, the groups, the parents, the people with Autism themselves... we ask you... no, we need you to know what Autism really is.

Today, we ask for your Autism Understanding and Acceptance.

This is what Autism is to us...

Autism means we never know what is going to happen when we leave the house. A trip to Dairy Queen is usually a huge treat, but if James is having a day where his senses are more out of sync it could be very painful and result in having to leave with no treat at all.

It means meeting "friends" at the park and watching James choose to play alone because he either doesn't want to interact or doesn't know how to interact depending on the day. It also means listening to other children ask their parents for friends to come play, but never James.

It means trying to deal with meltdowns in public places and seeing the looks on other parents faces that indicate their opinion of your parenting. And me thinking "if you only knew what I was dealing with, you wouldn't judge me".

Autism is wanting so badly for your child to express some likes or dislikes. Wanting him to tell you what he wants for his birthday, or Christmas, or even dinner. But having to be content with guessing. When he is feeling sick all he can tell me is "hurts", not where or how, and it becomes a big guessing game of what is wrong, until he throws up.

Sometimes he is so absorbed in his own world it is more work then it is worth to get him dressed. Things I know he can do for himself become major tasks because you just can't get him to focus long enough to do it. I often feel like a broken record asking things over and over again with no sign of comprehension until 30 minutes later when he miraculously goes and puts his shoes on to go to school.

And while they are much harder to see, there are so many good things about Autism. To me being "Autistic" explains so much about James' personality, his likes and dislikes, and how he thinks and learns.

It means so much more work at teaching him things that come naturally to other children, but at the same time there is so much more cause to celebrate. We get to celebrate each and every bit of progress he makes, no matter how small it is.

It means having to look so much harder for his strengths. But once we find them he can progress so much more quickly. He is such a smart and talented boy.

It means that he may not answer our questions very often, but when he does we know he is being truthful. James has never told a lie.

I am so much more appreciative of each and every smile or brief bit of eye contact.

While his social skills are lacking, I see the way he interacts with his brother and it gives me hope. He is truly concerned for him at times and worries about what he is doing and if he is safe.

Autism is a huge part of who James is. When we first found out about it the doctor told us to make sure to remember that he "has Autism" he is not "Autistic". But through this past year I have come to realize more and more that while he is "James" first, he is still "Autistic" and I don't think I would change that for the world.

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