“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.”

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?

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.