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Monday, April 9, 2012

From Speaking On The Spectrum


Autism Awareness and Acceptance? BULL!

I have no doubt that the title has caught your attention - good! What I need to say needs to be read by everyone within the autism community.

Before I get into the nitty gritty details of this post, I want to preface it by saying that there are some truly amazing and wonderful people in this community! After my daughter was diagnosed (and then my son), I found a lot of support and comfort from some great autism groups and parents out there. I'm always amazed by your strength, courage and perseverance - I truly am!

Now I'm going to make some points that some of you may not like. I'm going to point out some things that some of you may get upset about. That's OK by me. I'm not here for popularity. I've done my best to hold and bite my tongue (hard!) on this issue for a long time, but after recent developments in the autism world, I saw a sort of re-birth of activity and I can no longer stand by and watch silently.

Today is World Autism Awareness Day. It should be a day to bring more awareness, more education, more acceptance, more understanding, more help and more love to those with autism. But instead of everyone coming together, everyone is walking on egg shells trying not to say something that's going to offend someone else. If someone asks, "Are you going to 'Light It Up Blue' for autism?" the responses are:

1- "I REFUSE to light anything blue!"
2- "Why does the color have to be blue?! We didn't choose that!"
3- "I am so tired of awareness! People already know what autism is!"
4- "NO! I'm not participating; my child was vaccine injured!!"

People within the community can't ask a simple question anymore! Things have turned political, and I'm so tired of seeing everyone bully each other! How dare a person say "I support Autism Speaks" or heaven forbid someone asks, "I'm looking for a DAN doctor, can someone help me?" And we definitely can't have someone say, "Does anyone know if there's a cure for autism yet?"

These questions are taboo, they're THE questions to ask if you want to stir up trouble. The question I ask is WHY? Or better yet, WHY DOES IT MATTER?!

The truth is it shouldn't matter. These things shouldn't devolve into an online screaming match. NO ONE should be told that their therapy methods for their children are wrong, and NO ONE should be told the way they choose to celebrate World Autism Awareness Day is wrong. NO ONE should be scolded because they choose to support Autism Speaks, and NO ONE should be scolded for choosing to support Generation Rescue.

In case you haven't figured this out yet, in case it's never occurred to you... YOU'RE ALL RIGHT!

Let me explain. There is a need for all of these organizations. Each organization focuses on specific areas and possible causes of autism. Each organization holds important fundraisers, events, and does their part to educate the public on what causes autism, what exactly autism is, and how families are affected by autism. They also do their part to create programs to help those on the spectrum, whether it's with therapy, training, passing legislation or providing other services they need.

There is no "one right way" for treating autism and there is no "one autism." We all know how many different types of therapies are out there. We are well aware that the spectrum is vast and wide. We also hold true to the saying, "If you've met one person with autism, you've met ONE person with autism." Meaning everyone with autism is different, therefore their needs will be different as well.

So I put this question to you: If everyone on the spectrum is so different and there are so many different types of therapies (since one therapy doesn't work for everyone), did it ever occur to you that there just might be more than one cause of autism? Did you ever stop to think that there couldn't possibly be only one explanation as to why there are over 67 million people with autism worldwide?

Did you also ever stop to think that what you think is not the only way of thinking? Just because you feel a particular way regarding an issue DOES NOT give you the right to bully and force your opinion on other people!

If a parent says, "I hope they find a way to cure / fix autism soon. My son really needs it." this does not mean they don't love their child! What gives you the right to judge her and her circumstances? You don't know their life, their struggles and their stresses. There are parents out there hoping someone finds a solution because their kids need it. That doesn't make them bad parents. It doesn't mean they don't love their kids. It means they're doing the best they can. It means their autism is difficult to deal with. Not every autism is a gift.

There are also parents of high functioning children and adults on the spectrum who, if there were a cure for autism, would not take it. And you know what? That's fine too! There are some exceptional people with autism who are extremely intelligent and provide some wonderfully unique perspectives on things. Autism is a part of them and they are proud to be autistic, which is a wonderful gift!

That brings up another issue - autism lingo. A person can't say, "My kid is autistic" without someone jumping down their throat andcorrecting them with "You should say 'your child has autism.'"  I am autistic.... I have autism... I am a person with autism...  Do we really have to fight over this? Don't you see how trivial an issue this is?

Here's the bottom line:

a- Whichever verbiage you use - autistic or person with autism - everyone should be respected.
b- Whatever your belief - Vaccines or Genetics or Environmental Factors or act of God - everyone should be respected.
c- Whether you want a cure or not - everyone should be respected.
d- Whether you medicate or don't medicate your child - everyone should be respected.
e- Whatever organization you support - everyone should be respected.
f- Whether you Light It Up Blue or choose another way to recognize the day - everyone should be respected.

Until the autism community comes together - truly comes together - those outside of our community will not pay attention to us. Those outside the community will never learn to adapt and accept those with autism because we can't even adapt and accept ourselves! We need to learn to be more tolerant. We need to learn patience. We need to learn to respect those whose viewpoints are different than ours. How can we go around preaching autism acceptance when we do not accept each other? We need to practice what we preach. We need our community to be supportive, not judgmental. We need our community to be embracing and understanding. We have to stop getting angry and pointing fingers at one another. We need to stop getting offended by every little thing. Let's take this day to change our attitudes, change our perspectives. There is no "one autism."

Be the change!

6 comments:

Alittlesprite said...

Bloody brilliant. Finally, someone making sense.

I am friends with the CEO of a charity organisation here in Australia that helps families of brain injured/ or acquired brain injured children. I am sending this to her.

Natalia said...

Thank you so much, Alittlesprite! I'm really happy you enjoyed my post enough to share it with others. Do you happen to have a FB page or blog? I would love to follow you =)

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