I haven’t written anything like this in awhile because I’ve been wrapped up in my own life lately but this is really important to me so I wanted to out this out there.
Back when I was writing as Lost and Tired, I frequently wrote about things dealing with the Autism community and I wasn’t shy about calling it how I see it. I miss being that person so hopefully, this will be the first of many post to come.. ☺
Autism Awareness month is just around the corner. It’s the one time a year that the world gives the Autism community the spotlight and it’s critical that we make the most of it, otherwise it’s another wasted opportunity.
The problem I have with the way Autism Awareness month has been going, at least since I’ve been involved, is that while the spotlight is shone in the direction of Autism, it’s placed squarely in one place. I happen to think that’s a massive mistake.
If you’ve been following me for awhile, you know how much I dislike the Light It Up Blue campaign put on by Autism Speaks each April.
Everyone is encouraged to install blue light bulbs and you see the trademarked blue puzzle piece, aka the Autism Speaks logo everywhere. No one is giving away the bulbs, you have to buy them, in most cases, the proceeds go back to Autism Speaks.
I’m not necessarily saying that’s a bad thing but I’m posing the question, is it a good thing?
The Light It Up Blue campaign is less about raising awareness for people touched by Autism and their families and more about lining the pockets of Autism Speaks. It’s just a fundraiser. Is this really helping people with Autism? Is this really helping the families of those touched by Autism?
I certainly wouldn’t condemn anyone for switching on a blue light bulb but I just don’t think it does what they’re hoping it does…
I see it like this, Autism Speaks is enormously controversial and if you were to ask an adult Autistic how they feel about the world’s largest Autism non-profit, you would very likely be surprised to find out that there is a moment amongst the adult Autism community railing against Autism Speaks. In other words, the very people that Autism Speaks is supposed to be representing/supporting, do not support Autism Speaks.
Look, I don’t think Autism Speaks is evil and they do serve a very important purpose. They fund a great deal of research and lobby for needed legislation. These are crucial things that the Autism community needs..
At the same time however, they have alienated the very people they’re supposed to be helping.
In my experience, most people with Autism don’t want cured, they want treated with respect, help finding a job, a place to live, people to accept them for who they are and to have an equal shake at life.
Autism parents probably don’t care too much about research, at least I don’t. I care more about making it through the day, ensuring my kids get the services they need and people gain more insight into the struggles that families like mine face in a daily basis.
Lighting it up blue doesn’t really raise awareness for anyone or anything but Autism Speaks. Lighting it up blue doesn’t make a difference in the lives of the countless struggling to make it through the day, transition into adulthood or simply find employment.
When it comes to the one month that we have the world’s eyes, wouldn’t we be better off helping the world to gain insight into the challenges faced by those with Autism and their families? Rather than this month be about raising money for Autism Speaks, wouldn’t that money be better off going to local organizations, that are involved in the day to day lives of the Autism community?
Wouldn’t that money be better off going to actually make a difference in the lives of the people struggling with Autism, right now?
In my opinion, the answer is a resounding yes to all of the above.
Like I said, Autism Speaks serves a purpose but do they really need to hog all the spotlight? Shouldn’t we be shining the spotlight on those in the trenches, who haven’t lost sight of why Autism Awareness month exists in the first place….
These are just a few things to think about as we approach April. You need to do whatever you feel in your heart will do right by your child with Autism or you family. Don’t let my opinion away you one way or the other. I’m simply giving you something to think about… ☺
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