Why We Don't Light It Up Blue (Copied from FB)

[Nervous Rex]

I didn't write this - I saw this post on FaceBook and thought it was worth sharing here. My own critique:

I agree with 99% of it.
Parts of it do seem to be hyperbolic and overly emotional, but that may be because it's written by someone with personal experience, and to whom this issue is very close to their heart.
I like the focus on inclusion.
I like the points raised about not pre-judging people based on their level of autism.
I question how they know what "most autistics prefer/want", but overall this is the smallest part of the message to quibble about.​

Now, the post:

WHY WE DON'T LIGHT IT UP BLUE

It's that time of year again when puzzle pieces abound and well-meaning people go blue because they believe they are doing their part in helping autistic people and their families.

Autistics are asking everyone to please stop. But there's still something you can do to be involved in a respectful and positive campaign.

Anyone with ears to the ground in autistic spaces is hearing an onslaught of frustration, sadness and anger in the build up to this time. Autism Speaks, the initiator of the blue “awareness” campaign, is almost universally despised by autistic people. There are literally hundreds of articles and blog posts one could look up to learn more about that. Autism Speaks and “awareness” campaigns treat autistics as a group to mourn, their families as champions of living with the “burden” of autism, they use fear mongering “epidemic” speak, which defines disease, not neurological difference. They use the puzzle piece to denote a mystery and something missing. Their imagery denies there is a whole, complete child right before you, and furthers the harmful myth of a child who is less than human and can't be reached, or who is hidden 'underneath' their autism...unaware of the world around them, unaware of how you are speaking about them. This is offensive. This is damaging. This is false.

Imagine being an autistic person and how unwelcome you feel this time of year when everyone is lighting it up blue to talk about the tragedy of autism, of your existence, to pity you and pat your martyr families on the back for living with autism...with...you. Disabled people do not want your pity and they certainly find it offensive and damaging to praise and pity families burdened by them. Imagine a month where everywhere you go there is the message to raise funds to “combat” autism, that is, find a cure; a cure to rid the world of autism...of...you. What's more, the fear mongering and cure culture propagated by Autism Speaks has translated into quack cures that abuse and have even killed autistic children, because parents are desperate to extract the tragedy of autism from their child. Imagine what a culture of acceptance would bring instead.

Somehow World Down Syndrome Day is a fully fleshed out celebration of pride and joy and inclusion. How are we still stuck in the pity and oppression of approaching Autism Awareness Month like it's a cancer awareness month? Can you imagine when that campaign is about YOU?

Autism Speaks and awareness campaigns also primarily focus on children, as if autistic children don't grow up to be autistic adults. But they do. And while they are systematically forgotten, or worse, actively silenced, they are a growing force and they have something to say. Their words of resistance and pride are starting to break through. Autistics are asking you for ACCEPTANCE. Autistics are asking for inclusion, friendship, support and respect.

CHANGING TO A NEURODIVERSITY PARADIGM

Autistics are trying to steal away the campaign and re-appropriate it into something autism-positive by suggesting #REDinstead and #LightItUpGold for Autism ACCEPTANCE Month. If you would like to support autistic people you can listen to autistic voices. It is their right to lead the conversation.

The image below is a terrific cheat sheet to understand the difference between the traditional awareness campaign and a positive acceptance campaign.

A few more things autistics would like people to know...

Most autistics prefer identity-first language. (I AM autistic, rather than I have autism, or am a person with autism.) But a person should be called whatever they prefer to be called. It's up to them.

Most autistics would like people to stop using functioning labels. They note that “high functioning” can denote a hierarchy in value, and is often used to deny accommodations and necessary services, and “low functioning” is disrespectful and used to strip people of their rights and presumed competence. An individual's “functioning” also varies greatly over years, and even throughout any day and from task to task. It's an oversimplification of an outsider's assumptions about functioning day to day as an autistic, with potentially grave consequences.

Great sources to learn about autism from autistics (I have dozens more for anyone interested):

ASAN (Autistic Self Advocacy Network) https://autisticadvocacy.org

AWN (Autism Women's Network) https://autismwomensnetwork.org

Thinking Person's Guide to Autism www.thinkingautismguide.com

Being autistic is not all roses all of the time, but it's a hell of a lot harder when people try to change who you are or pity your existence. Pay attention to the language used. My daughter needs me to make this world a better place for her, and she needs her mother to be positive about her life, and our life, and she needs to be embraced for exactly who she is and celebrated. All children need that. We have an amazing autistic daughter whom the world needs to accept because if they don't they will miss the opportunity to be better together.

 

[Clueless in Canada]

As I am newly immersed in the adult autistic community, Autism Speaks, Light it Up Blue and the general dislike of them by most adult autistics I've seen online, is all something new for me to process. Autism Speaks seems to have changed some of their rhetoric recently and while I've seen articles about how it's not a real change, I find that if I were to tell someone Autism Speaks is evil because X and that person then went to their website, they will think I am just lying or exaggerating. They now speak of support and I cannot find the word 'cure'. They speak of people on all areas of the spectrum and of adults who are autistic. Whether or not they walk the talk I have no way of knowing. So far, my approach has been to tell people that the puzzle piece is a controversial symbol as it implies missing or broken parts and that Light it Up Blue is male-focused and ignores the females who are also on the spectrum. I am interested to see what others say in this thread.

 

[Fino]

I don't know anything about the blue stuff and assume this month is the month referred to but don't know anything about that either. It doesn't seem hyperbolic to me, assuming her characterization of the event, or whatever it's called, is accurate.

What do these Autism awareness campaigns try to do exactly? Do they explain anything about what it is or do we just want people to be aware of the existence of Autism?

Maybe there should be a series of commercials where each one teaches one aspect of Autism, similar in concept to Autistimatic's videos. It would be nice if more people knew at least some of the implications of being autistic, because even people fully aware of it seem to understand when told but then clearly have no understanding of its various manifestations and thus are unable to respond constructively or without confusion, continually making assumptions and demands that run contrary to autism's most common characteristics.

 

[Pats]

Perhaps it was written by a parent of an autistic child. I say that because...….. when my youngest (probably autistic) daughter was in 2nd grade she was reading to me and didn't even know the simple words like it, the or was. I knew I had to work with her on her reading but went to the school to see how they were teaching so I wouldn't confuse her more. It was the first time I learned that she was in a 'special reading class' which was called the 'turtles'. I had a fit and demanded they change the name to something else - anything else. The teacher was short with me and asked what, then, did I think they should be called and I said, 'rabbits, lions', anything else. My daughter already was saying she was dumb and stuff and I was beginning to see why her self esteem was so low.
Second part to this was that they were not teaching the kids to read - they would tell them to look at the picture and figure out what it's saying and if they were close it was good enough. That explained why she kept saying oranges when the word was apples, but the picture had oranges in it. I taught my daughter to read using my own phonics flash cards and she became a better reader and speller than her siblings.
But anyhow, my point is that, as a parent, you don't want anything that might imply your child is slower, dumber or less than all the other kids. So - when I read this, it sounded like a parent.

 

[Thinx]

I thought they made good points in the article. I was at a work related meeting recently and a person on my table was saying they were a parent of a YP with autism and they knew others who were too. I felt uncomfortable when I also heard them laughing and generalising to someone Oh autistic people always think they are right, that's part of it...

She seemed to be a neurotypical parent, speaking from the outside. She didn't seem to realise how dismissive the comment was, or wonder if there might be autistic adults in the meeting. At the same time, clearly she was up against challenges and trying to make a difference by getting involved...

 

[Kevin1968]

Saw an interesting blog on this on another site

Reclaiming blue for autism | Embrace ASD

Effectively there is some merit in using "blue" as the alternatives are limited.

Also there is no reason to give "Autism Speaks" ownership of the colour blue.

However as colours are not an emotive issue (when people refer to blue being cold or red hot it means nothing to me) for me one colour is as good as another.

 

[Aspychata]

Found this a interesting misperception of autism, and children. These children have strengths and some challenges, but the Blue movement just groups the cognitive challenges together and ignores the other great things about these kids. This just seems like a poor marketing concept, maybe a little more thought should have gone into branding and serving up this concept. It seems to be the pity ploy was used to get people to participate in this event. I think a #tag movement, a flash dance movement, a something really creative would have been a better avenue.

 

[Mary Terry]

Autism awareness is slow but it is progressing. Far more people today know about autism and have some glimmer of understanding about it than I've seen in past decades. Even Autism Speaks is slowly becoming "aware". Or is it "woke" in US slang?

I heard some local physicians on a call-in radio program on NPR (National Public Radio) the other day. They had numerous callers from our state, mostly parents and relatives of people on the spectrum, asking questions, making suggestions, sharing ideas, promoting local support groups, etc. It was a really good, informative program, but one of the physician "hosts" kept mentioning Autism Speaks as a good resource. I wanted to call in to mention this website as a good supporting resource, too, but I was driving in heavy traffic at the time.

 

[meepmeep]

Saw an interesting blog on this on another site

Reclaiming blue for autism | Embrace ASD

Effectively there is some merit in using "blue" as the alternatives are limited.

Also there is no reason to give "Autism Speaks" ownership of the colour blue.

However as colours are not an emotive issue (when people refer to blue being cold or red hot it means nothing to me) for me one colour is as good as another.

I like the suggestion of purple, instead.