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“Light It Up Blue” is all over the place since it’s April – Autism Awareness Month. Yay! That’s the month I always dread, because my Facebook feed is flooded with posts by my Autistic friends on how much they loathe Autism Speaks and the whole “Light It Up Blue” campaign thing, and then! All the posts from parent friends who are posting stuff about how we oughta “Light It Up Blue”.

What is “Light It Up Blue” Anyway?

This part is more for my mom than anyone, because I know she’s going to ask me later. “Light It Up Blue” is this campaign that this organization called Autism Speaks puts out every year. It’s their signature campaign, supposedly to bring awareness and acceptance to Autistics and raise money for support and services to Autistics and their families.

It’s called “light it up blue” as supposedly more boys have autism than girls.

That sounds pretty great (acceptance! awareness! raising money for support and services!), but here’s the thing: Autism Speaks is BAD. It’s bad because, as the Autistic Self Advocacy Network (ASAN) says, “Autism Speaks has no significant autistic leadership and has never been aligned with the needs and priorities of the autistic community.”

Consider This

So!

Autism Speaks is an enormous organization that makes millions. It’s a non-profit, but don’t be misled by the term, “non-profit”! That only means that the profit that the organization makes goes back into the organization, which can mean (as it does in the case of Autism Speaks) that in “2013, Autism Speaks CEO’s salary was $371,000.”

That organization is Raking.It.In, to the tune of millions of dollars, on the backs of Autistics. How much of all the money that is donated actually goes to families and support services? It in the realm of a whopping 4%.

It occurred to me that this is all very similar to what the Alexander Graham Bell organization is doing with my own deaf community (remember my post on Nyle DiMarco?!), thrusting a medical model of disability on us, one that is based on a premise that we are broken, in need fixing, and seeks to cure us. This doesn’t align with what we know to be true: that we are as we should be. In line with the social model of disability, we are busy creating our own culture and removing barriers to our access.

Autism is no more a puzzle than anything else is. I mean, we don’t know what causes the Down syndrome that my daughter has, nor what really caused my own deafness or bi-polar disorder. Who knows? Might have been environmental, might have been genetic; it’s a puzzle.

We have never known exactly how my daughter’s Down syndrome would unfold (we knew that she was coming with an extra chromosome via amniocentesis), nor did my parents know how my deafness would expand and surround my reality.

I wonder:

Does not understanding something, or not having all the answers (that would be nice to have sometimes) mean that you need to eradicate that which you don’t understand?

Does not knowing how exactly Autism will unfold and shape the way a person experiences life mean you need to not support the life that is lived with Autism?

Furthermore, is it fair or right to support an organization like Autism Speaks and continue to “light it up blue” because they crave fatter cushions upon which to sit, and ever-more research, media and advertising to perpetuate their medical model of disability?

Light It Up Blue

Autism Speaks is not about understanding and accepting Autistics. The 3.8% that they actually spend on service grants for families and autistics shows that more clearly than words could.

Please don’t believe or buy into their hype; do your homework and tune in to the adult Autistics in the links below for more information.

Michelle Sutton (whose writing I love) wrote this: Blue Lights Won’t Help Me.

And More Super Awesome Posts to Check Out That are BY Autistic People:

#boycottautismspeaks – Boycott Autism Speaks (the website dedicated to information regarding why Autism Speaks should be boycotted)

Autism Speaks and Representation, by Autistic Hoya

#Boycottautismspeaks: Communicating a Counternarrative Through Cyberactivism and Connective Action, by Sarah Parsloe

A big, beautiful collection of essays that are Anti-Autism Speaks: click here

ASAN Condemns White House Autism Proclamation

Autistic People, Parents and Advocates Speak About Autism Speaks, by The Art of Autism

 

I’m kind of fascinated by autism now. I think – like Down syndrome – that it is such an interesting spectrum as there is so much variety within and is just beginning to be understood and explored.

I’ve been following a blog called the Unstrange Mind for a while now and she’s  writing a series of posts on the new DSM-5 diagnostic criteria. This is evidently a huge deal in the autism community, this revamping of the criteria. Check out what she has to say about it all – it’s very, very interesting (and it’s a series of posts, so just go to her blog and click on the calendar there to the right, or look down for her post archives).

I don’t have a lot to say about this because I’m not part of the autism community. But I often wonder at this tension that exists between parents of kids with autism and adult autistics. I just don’t understand it.

I don’t understand why parents are not falling all over the adult autistics…. I mean, if I had a community of adults with Down syndrome that were telling me x, y, and z about their disability… oh man. Oh my GOD! That would be so exciting! I could ask questions about things that seem to be part of the syndrome. What I see with my daughter sometimes, is this just her or is this her extra chromosome expressing itself? What are their experiences? How was it for them, growing up with Down syndrome in this tightly-regimented world of therapy? Was the therapy worth it?

Tears well up in my eyes as I type this, just thinking of how much it would be mean to me to have answers to those questions by people that really know. To have sites like the Autism Women’s Network with posts like Listening to Autistic Adults.

And so I don’t understand it.

I really don’t.

****

Back to the Unstrange Mind and the DSM-5. Check it out – it’s fascinating.

 

.. I’m not sure if you read the news? A mother who was denied services for her autistic daughter attempted a murder/suicide recently. The news of it is all over the place. Here is the story: Teen With Autism Hospitalized

But this is the story I think you should read. It’s by an autistic disability rights advocate and it’s called Issy Stapleton Attempted Murder. Autism Community Responds.

Please read it.

She speaks for me: we don’t need to walk a mile in anyone’s shoes to know that murder in any form is unacceptable. That killing your child because your child didn’t receive services is horrific.

She also speaks of the other things you can do. Less dramatic, for sure, but things that will alleviate the pressure and bring you relief.

This should never happen.

And it’s not about how sorry we should feel for the poor mother who had it so hard. She may have. But that is no excuse to try and murder her daughter.

Here is the post again: Issy Stapleton Attempted Murder. Autism Community Responds.

 

 

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