Skip to Content

“Light It Up Blue” is Bad. This is Why You Shouldn’t Buy in to the Blue or the Puzzle

“Light It Up Blue” is Bad. This is Why You Shouldn’t Buy in to the Blue or the Puzzle

Please Share

“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

 

SaveSave

SaveSave

Support This Site

Please Share

What Matters: a new book on disability, community and love, reviewed by Naomi Ortiz
← Previous
Cultivating Community - “What Matters: Reflections on Disability, Community and Love” a New Book by Janice Fialka, Reviewed by Naomi Ortiz
Next →
Celebrating The Disability Rights Movement

This site uses Akismet to reduce spam. Learn how your comment data is processed.

Patrick

Friday 28th of June 2019

As a parent of a child on the spectrum I can say without a doubt that Autism Speaks has helped me immensely. Complaining that there are very few on the spectrum making decisions on the board is like saying you wont go a funeral home unless it's run by dead people or only going to see your doctor when he or she is sick. You don't have to have autism to understand it's challenges. I certainly consider myself an expert on my 4 year old's behavior, I'm a single father who lives with him 24/7, so I don't think I need some else on the spectrum to decipher or decode what I see in his patterned behaviors. Of course a lot of the money raised goes back into the foundation, that's how they continue to grow, attract qualified staff and secure a foothold in society. To me it sounds like just one more case of someone complaining just to complain. I understand that this is your blog and your content but why use it as a platform to spread hate? Any help is better than no help. Promoting other organizations is fine just make sure that you clearly state that you have a bias so that people reading this can take your opinion into account and then make up their own minds.

Meriah

Friday 28th of June 2019

No; it's NOT like only going to a funeral home unless it's run by dead people. It's like being part of an organization that is about African Americans that is only run by European Americans. The challenges, culture, and intricacies of disability culture - of Autistic culture - can only truly be understood by someone wearing the shoes. You, as dedicated a father as you might be, are only holding the hand of someone wearing the shoes. You will never truly understand what it's like to be Autistic.

And this is getting to my point: there is a fundamental lack of respect for that experience. There are plenty of Autistic adults that are ready and willing to lead - check out www.asan.org - and it's a crying shame that you, along with Autism Speaks, are ignoring them.

I will not do the same with my own Autistic child.

Holly

Thursday 11th of April 2019

I'm with Mike and Haley. My daughter is autistic. I love and appreciate who she is and so very proud! Research is a very instrumental part of understanding, improving services, and creating awareness. Knowledge is power. The more we know the more we grow. It's not about "eradicating" and I think articles like this can spread the wrong message and keep people from donating to something that's needed for progress. Thanks for that. This article undermines the emotional aspect of what autistic parents go through. The puzzle piece, to me, is worn with pride and represents the mystery and uniqueness behind autism. Every autistic person is effected differently, it's a spectrum. Yes, mystery, because not only is it unknown what causes autism but my daughter changes from hour to hour, day to day. Trying to understand why she changes, why she does certain things, etc. Right now at least, so much about her is mysterious. But the more I learn, I feel like it's another piece of the puzzle to understand her. I do think "light it up blue" is outdated. It is a statistical error and diagnostic error. They should change that. As for adults with autism, not all autistic people are "high functioning" (whatever that is, not a fan of the terms) and it's not fair to speak for all autistic people and try to portray it as something that's not disabling because it is for so many others! Speak for yourself only, maybe that's one of the ways awareness can improve. Give well rounded information, please, autistic adults.

Jaime

Saturday 1st of June 2019

I agree with you Holly, 100%. I can’t, for the life of me, figure out the dissension within the autism community regarding autism speaks. It is a multi-million dollar organization, that is non-profit (their operational costs are a fraction of other major non-profits like the Red Cross, the Salvation Army, and the Cancer Society), similarly, their CEO’s salary is entirely appropriate given the size and scale of the organization. What other ASD organization promotes awareness 1/2 as much? Autism Speaks mandate is not “to provide family services”, it is to raise awareness and to research causes and treatments. This whole idea that Autism Speaks wants to “eradicate autistics” is ridiculous! It doesn’t even make business sense (they’d put themselves out of business wouldn’t they?), let alone be possible- since we all know there is NO CURE for autism. Prevention? Totally different story. If a researcher could determine that by improving prenatal health through vitamin supplementation at precisely 2 weeks gestation prevents 90% of ASD diagnosis...wouldn’t every parent choose that for their child? And in turn, wouldn’t every autistic born after that discovery have the right, and the responsibility to ask their parent if they were aware? Pregnancy testing methods would change, millions of children would be impacted every year. I’m sure i’ll Catch heat for saying so, but I would spare my child their autism if I could. They would still have a myriad of other issues, but anything to make their life better, I would do.

And so I will continue to light it up blue, wear the puzzle piece, and share both with anyone who will listen. Every organization that supports ASD, and in some shape or form, my child, gets my support in turn. I wouldn’t expect only make-up artists to run MAC cosmetics, nor only Engineers to run an Oil and Gas company. Just like any puzzle, many pieces are needed to complete the whole.

Nova

Tuesday 9th of April 2019

Isn't downs syndroms caused by trisomy 21? pretty sure we know the cause...

Meriah

Wednesday 10th of April 2019

Right - and what makes the extra chromosome triplicate? THAT is the essential part of what causes Down syndrome and THAT is unknown.

...

Tuesday 2nd of April 2019

Thank you. You explained that very well.

Haley

Tuesday 2nd of April 2019

Also Autism Speaks has changed a lot over the past two years, since this was written. I would take a look into the current organization to get the updated information.

This site uses Akismet to reduce spam. Learn how your comment data is processed.