Why #Autism Awareness is still failing in 2016

Disclaimer: I want to make sure that you understand that I’m not criticizing anyone who may choose to support the Light it Up Blue campaign. Everyone must do what they feel is right for themselves and their families. If you do what you feel in your heart is best, you can’t go wrong…at least in my book.

April is here once again and we’re kicking off another Autism Awareness month. In the past I would get all excited about what this month meant but as time and reality set in, I’ve realized that April is really just another month.

Don’t get me wrong, it’s great to see the world interested in the lives of people and families touched by Autism but are they really, interested that is? Is it really about people with Autism and their families? Is it really?

Here’s one of the biggest reasons I no longer get excited about Autism Awareness month.

Rather than working together to accomplish great things for the people and families impacted by Autism, the entire month becomes a money grab for Autism organizations that in some cases, have lost touch with the very people they’re supposed to be helping.

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Autism Awareness month should be a time when we come together as a community to help the world better understand what life with Autism is like for both the person directly impacted and their families or caregivers.

Instead of humanizing Autism and helping people better understand or relate, we’re screwing in blue light bulbs.  How exactly does illuminating a skyscraper with blue lights, help a family struggling with Autism? How exactly does a blue light bulb help people understand what Autism is?

I suppose, you could learn what Autism is like through the eyes of a multimillion dollar organization who has all but completely alienated the very people they’re supposed to be helping.

Unfortunately, when some organizations speak, they are not actually representing anyone but themselves and their agenda. That’s not to say that funding research isn’t important because it is.  In fact, it’s crucial but should that be more important than the millions around the world, already dealing with Autism and often struggling with it every single day?

This blog is called The Autism Dad for a few reasons but the most important of which is that I’m a Dad to three boys with Autism.

I have a vested interest in seeing the world become a more informed, warm, inviting, accepting and understanding place for my kids.  I do have somewhat of a platform and I really want to use it in a way that not only benefits my family but everyone else as well.

Of course, not everyone will agree with my views and that’s perfectly okay.  Many times, our views are based on life experience and since everyone’s experience with Autism can be unique, the same can be said for our views.

That being said, here’s the thing….

Autism Awareness month or whatever you personally choose to call it, is a time where the spotlight should be pointed directly at families and people with Autism themselves.  Who better to educate society about the many facets of Autism, than the people living with….

Rather than the media focusing on a pile of blue light bulbs being snatched up and installed, how about we interview a person with Autism who’s trying to find employment or higher education?  Why not speak to families who work every single day to make life better for their loved one with Autism?  Maybe the world would benefit from talks with people who actually have Autism and can tell us first hand what it’s like to navigate an unforgiving world, find employment or if they even want to be cured.

Perhaps interview families who are raising children in different place on the Autism Spectrum, this way you can see the good, bad and ugly.  It’s not always pleasant but it’s the reality that many live in.

Why do we care what an organizations view on Autism is, when to this day, they will not allow people with Autism to be represented by someone with Autism on the board of directors?  Oh..  You didn’t know? Google is your friend.

I for one would love to know why some organizations that speak for an entire demographic of people, can talk the talk but when it comes to walking the walk they essentially discriminate against the very people they’re supposed to be representing?

Look,  I’m aware that my voice has weight within the community. I do my best to use that in a way that benefits and encourages people in situations similar to mine.

That being said, no matter how much weight my voice carries, it’s no more important than yours.  Your voice matters and the world needs to hear it.  The world needs to see as many sides to Autism as possible because that’s the only way to show how different each person, family and situation is.  It’s the only way to show that one person, one organization cannot speak for everyone and accurately represent anyone but themselves.

As a way of trying to use what platform I have to help anyone that wants to share a story or their experience with Autism or Autism Parenting, I’ve created a Facebook group called Seen and Heard. It’s just now open to the public, so be among the first to join and add anyone you feel would benefit…  I’ll do my best to drive traffic to this group and help your voices be heard.  Share a blog post or write one there.  Share a link to your site or a site that you follow. There’s no limits and the only rule is that we respect each other and anyone involved in bullying or harassment will be banned.

Also, if you’re interested in being a group admin, shoot me a message because I could use the help.  ☺

This Autism Awareness month, please remember how important your story is to the future of our loved ones with Autism and their families…. ☺

6 Comments

  1. Thank you for sharing this post! I would love to see more actual Autism awareness happen instead of just “screwing in blue lightbulbs.” I have two sons with Autism and it would great if people could understand a little bit more about our family instead of just staring. Big hugs. I’ll check out the group and good luck on the rest of the #AtoZChallenge
    -Katy from THE KATY blog (www.thekatyblog.com)

  2. Anne

    Great Post and you are so right. I’m creating awareness with a group of blogging friends by linking up each others posts in a blog hope and sharing them all throughout the month. Although, to be fair, autism awareness should last longer than a month!

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