28 Mar 2014

Please Don't Light up Blue for Autism

You mean well. I know you hope that by persuading your local council to bathe your town or city's most significant building or monument in blue light, that you are doing a good thing. You have bought into the notion that increasing "awareness of autism" will help your autistic children. But do you know where the notion of "light it up blue" originated? Are you aware how people who are themselves autistic feel about this particular campaign?


April 2nd has been marked as World Autism Awareness Day since the late 80's and in 2007 it was adopted by the United Nations. Light it up blue came along later; in 2010 it was set up by Autism Speaks, a huge and disreputable USA-based organisation. Autism Speaks seeks a world without autism, it does not support autistic people, but bullies and silences them. Autism Speaks regularly makes outrageously hurtful and damaging statements. Many in the autistic community call for a boycott of the organisation.

Blue is the corporate colour of Autism Speaks, that's it. Blue is not associated with autism for any other reason. When you lobby to light up blue or you "wear blue for autism" you are demonstrating your support of Autism Speaks the organisation, not of autistic people or their needs.

Autistic people and their allies are trying to get the word out about how damaging the light it up blue campaign is.

I ask that you take their views seriously and stop lighting up blue.

43 comments:

Megan Lee said...

I will most certainly NOT be 'lighting it up blue', and will make sure I pass this on, so that others can read it and hopefully understand.

Michelle MacCubbin said...

At this point ANY awareness of autism is good for me. My son has never benefited from ANY of the so called "autism" organizations anyway. I have never seen a dime for him or state programs so to me it doesn't really matter. People understanding HIM is what matters to me and if a blue light bulb educates someone, so be it.

Elizabeth J. (Ibby) Grace said...

I'm Autistic. Awareness of the truth is best for me! This post is brilliant. Love, Ib

liveotherwise said...

Blue light bulbs won't educate anyone. What educates is language and sharing. Great post.

Michelle said...

Great post! I've been writing similar!! :-)
"Awareness" on it's own is not helpful. Especially the kind of fear and tragedy awareness sold by Autism Speaks. Acceptance would be great!
Michelle (from http://amazingadventuresautism.blogspot.com.au)

Anonymous said...

I have a brother that is autistic & I understand the concerns about Autism speaks. My brother himself participates in wearing blue & putting a blue light on the porch. We do it to get peoples attention to the subject of autism and that its on the rise & that acceptance needs to be more widespread. I even make it a point to tell people with signage that the world needs to learn acceptance & educate theselves on the subject. Any awareness that comes of it is good in my opinion & my autistic brother. So speak for yourself.

Anonymous said...

That's the whole article?!? Not very persuasive. Author apparently doesn't like Autism Speaks, without providing much detail as to why. If someone lights it up blue in support of their family/friends with autism, they are doing it for the right reasons, their reasons and it's no one else's business to judge that.

Anonymous said...

This sounds like a campaign against Autism Speaks, just let folk support Autism Awareness Day as they see fit. As they say "when you've met one person with autism, you've only met one person with autism", couldn't the same be said about each persons right to celebrate, make aware or highlight the condition #justsaying

Sharon McDaid said...

@Megan thanks for passing it on.

@Michelle, if a blue light bulb did anything to help I'd be all for it but these awareness campaigns take funds and energy from what is really needed- understanding, acceptance and ACTION!

@Elizabeth, thanks. And yes, nothing works like the truth x

@Jax (Liveotherwise) that's the thing- the blue campaign is inherently pro-Autism Speaks AND is a waste of time!

@Michelle, thanks I enjoyed your post too.

Sharon McDaid said...

@Anon1 I only ever speak for myself. You carry on doing what you're doing and supporting your brother.

@Anon2 Sure I can judge any campaign that is linked to a despicable and damaging organisation that does far more harm than good for autistic people. So my post didn't persuade you, guess I'll just have to live with that pain.

@Anon 3 yes this IS part of a campaign against Autism Speaks! I'm not stopping anyone doing their own thing, but as this is my blog, I will share my thoughts on the problems I have with the blue campaign.

Anonymous said...

If you read the articles that the author links to, then I think she makes her point extremely well.

Matthew Wilson said...

Last time I checked no-one had a monopoly on the colour blue, and certainly NOT Autism Speaks. I'm not a fan of that organization. I'm well aware of their marketing. It comes from a very dark place, full of loathing and self pity. But if you think boycotting Autism Awareness Day is somehow striking a blow for autistic people, or showing your displeasure in Autism Speaks, then you've lost me. Blue means next to nothing. It's a place marker and a conversation starter. It's there to facilitate awareness, not be awareness. If you educate one person because you wore blue, or shone a blue light bulb, then mission accomplished.

Carrie McCloud said...

My son is autistic and brilliant, and he is happy about the idea of making people aware regardless of where it came from. He speaks up to anyone he can about autism, and he lights it up blue, and I do so for him. His thoughts are, "so what if you don't like autism speaks? anything that gets people talking about autism works." We'll continue to light up blue... for my son, and everyone else who is uniquely wonderful and autistic.

Dana Ackerman said...

I was wondering where the link is to the rest of this article cause I did not see it. My son will be 4 next month And are new to "autism" I am doing my best to educate myself and my son about his disease... he tolde this morning, " I all done with Autism. I give it back to the doctor now"... and he is AMAZING

Aly Smith said...

Please do not use the term disease Dana. Autism or Autism Spectrum Disorder is just that, a disorder. That just simply means that your boy's brain just works slightly differently to others. I know that you are new to all of this and your little man will be just fine (once he gets the help that he needs), but you will find that many on the Spectrum like myself will the term "disease" quite offensive. I am not sick. That's exactly what Autism Speaks want you to think.

Carmen Lorton said...

Amen

Connie Lummus said...

She can't even spell organization correctly.. LoL...should I really listen to her?

Anonymous said...

Connie, as the blog writer lives in the UK or Ireland, "organisation" is absolutely correct as far as spelling goes *here*. It might not be in the US, but in the UK and Ireland, "organisation" is perfectly correct.

Nate sportyboy said...

the whole LIUB campaign itself was invented by speaks to promote awareness of autism as a "health crisis" which it isn't. Carrie, I can't believe what you're letting your own son do.

Nate sportyboy said...

if you guys don't care about where you get "awareness" from, be prepared for when someone bullies your kids for being autistic or if you hear someone say "he looks so autistic". if you don't like that, blame YOURSELVES cause YOU'RE the ones who gave Speaks anything.

Gina Poole said...

Very well said! I completely agree!

Nate sportyboy said...

stop saying Speaks does good at anything. anything useful.

Sharon McDaid said...

@Anon4 thanks.

@Matthew and Carrie but why has blue all of a sudden become associated with autism? There is one reason- the influence of a huge and powerful anti-autism organisation.
I don't understand why people are so determined to stick with their blue when autistic advocates have made it clear that it harms them!

@Dana read the post after this to hear what my son, diagnosed at 2, says about autism. It was a process for us both to get the point of acceptance and understanding but it is the best thing you can do.

Sharon McDaid said...

Aly I agree, my son is not diseased.

@Connie you're funny.

@Nate yes, supporting Autism Speaks is harmful to autistics.

Nate sportyboy said...

now you have to be VERY careful of that. not just any awareness is good enough. you need GOOD awareness in order to succeed. This is where Speaks/LIUB fail.

Samuel Hetler said...

I don't get what is so hard to understand here. I'm autistic and I want people to be aware, but I want them to be aware of the truth. Autism Speaks doesn't make people aware of anything but fear. So if you "light it up blue" and someone sees you, goes home and does and internet search, guess what they would find? Find ways to make people aware, but this isn't the way.

Anonymous said...

This is from their website:

About Autism Speaks

Autism Speaks is the world’s leading autism science and advocacy organization. It is dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families. Autism Speaks was founded in February 2005 by Suzanne and Bob Wright, the grandparents of a child with autism. Mr. Wright is the former vice chairman of General Electric and chief executive officer of NBC and NBC Universal. Since its inception, Autism Speaks has committed nearly $200 million to research and developing innovative resources for families. Each year Walk Now for Autism Speaks events are held in more than 100 cities across North America. On the global front, Autism Speaks has established partnerships in more than 40 countries on five continents to foster international research, services and awareness. To learn more about Autism Speaks, please visit AutismSpeaks.org.

Connie Lummus said...

OK, no problem then with spelling.

Anonymous said...

At Sharon M., you don't seem to be very educated when it comes to the color of blue or Autism speaks. Your article does not point out any reasons on why we should not support "Light it up Blue" or "Autism Speaks". I think that anyone that attempts to write something negative as you have lives in a miserable world and is never happy... Celebrate that you are alive today and that your child is alive.. Celebrate that there are places out there willing to shed some awareness on this disorder. Celebrate that it is a "world day" in which all ethnic groups can come together across the world to acknowledge Autism awareness. My little girl is 15 and she is proud to wear a light it up blue shirt to school this past Tuesday as she went to school knowing what it meant and from there she can share what Autism is in her own words to her classmates...

Nate sportyboy said...

celebrate with Autism Speaks, an unethical organization that makes movies with moms saying they wish they could kill their children???????

Radiofixr said...

I think every day should be autism awareness day as I know I am aware as I am autistic-I think its going to get worse because I think Autism speaks is pushing research to detect autism earlier and earlier under the guise of being able to get the support needed early but they want to detect it in the womb so they can give the mother the option of terminating the pregnancy before they even now how the child will be-that is what scares me the most

Anonymous said...

I don't associate with Autism Speaks and have lit up blue.I never chose the light bulb 4 the reasons of Autism Speaks.My daughter can not b cured as it's not a disease but with support can manage to make her life easier.It's really professionals with little or no understanding that need educated x

Nate sportyboy said...

but LIUB IS a Speaks thing.

April Winters said...

Exactly! Myself and my children are autistic, and if lighting it up blue gets awareness out there about autism so be it. I don't get involved in the drama of all this. It's about educating.

April Winters said...

Cynthia Deminion said...

I understand you may not support the organization, but you must value the importance of awareness. I have a daughter with autism and 10 years ago no one knew what autism was. Now I see public schools and everyday people voicing the need to support people living with autism. Find the positive. You disagree so strongly but what alternatives do you propose? Lance Armstrong did great things for cancer awareness, even though he was a fraud. A single organization doesn't speak for autism, but I'm pretty sure a nation does.

Anonymous said...

I consider it the same thing as when your autistic child is acting up in public and people start getting all snarky with the "get your kid in check" attitude without knowing the reason why. Since I lit my house up all the neighbors have been coming over or catching me at the mailbox and asking why I did that. There's my opportunity to make them aware, and it's good because the people on the side of me thought that I might be abusing him the way he screams sometimes.

Sheogorath said...

@ Matthew Wilson: Nobody is advocating a boycott of Autism Awareness Day (Autism Acceptance Day, as I prefer to call it), the blog author is simply advocating a boycott of advertising for a 'charity' that spends far more money on research than services, thus belying its own stated reason for existence, but also advocates the murder of Autistic individuals as well as researching methods of getting rid of us in utero. Apparently, a foetus is only a baby if it's non-Autistic/disabled.

Tomás Mac Gréagóir said...

If anyone here wants to support an organization that actually cares about autistic people, you would NOT support autism speaks, and for those of you pointing out your autistic relatives parading around in blue... that's kinda gross, you are advancing an organization who is studying prenatal tests so that autistic people can be aborted, if you really cared about your autistic loved ones, support an organization that cared about them, like ASAN

Tracey Mitchell said...

My problem would be lightening up blue is if someone who was generally interested looked at the reason for blue and this Autism Speaks company come up they might get the wrong impression of what autism is and what they can do to help. I understand people do it for the right reasons but is it really helping who just helping the lies autism speaks says carry on.

Jenn Jackson said...
This comment has been removed by a blog administrator.
Jenn Jackson said...

I am too. awareness isnt enough though, not all publicity is good. and supporting a company that wants to silence and exterminate us is stupid & dangerous. there are companies that educate support & advocate without shunning & discriminating against us the way Autism Speaks does. AS promotes harmful & dangerous information against us. they leave us out of the whole conversation & dont have anyone on its board who is #actuallyautistic.
Why not try the Autism Self Advocacy Network, the
autismwomensnetwork, or Aspergers Experts? all these organizations actually advocate for Autistics and their families, promote education & #AcceptanceNOTAwareness, and they definitely dont spend all their money trying to eradicate, euthanize, or cure us. best of all they are run by #ActuallyAutistic people. there are PLENTY of campaigns started by the Autistic community that promote education like: #BoycottAutismSpeaks, #DontLIUB, DO #REDInstead, #ToneItDownTaupe, #ColorTheWorldForAutismAcceptance (click the link for a FB filter), #AutismSpeaksDoesntSpeakForME and many others. dont settle for awareness of what Autism Speaks treats like a sickness to be cured or obliterated when we can have education & acceptance. The whole world already knows autistics exist, they just dont know what its like for us to exist, its time to move the conversation to acceptance & advocacy & show them.

Jenn Jackson said...

how about Do#RedInstead Tone it Down Taupe or
Color the world for autism all self advocacy campaigns created by and for autistics