Why I Refuse to Light It Up Blue | Autism Awareness

The Light It Up Blue campaign takes place during Autism Awareness Month in April, year after year without fail. With it, along come the damaging campaigns that hide behind autism to drive their own, less-than-admirable motives. You might not have heard of it before, or the negative connotations behind it, so let me get you up to date.

Why I refuse to light it up blue for autism awareness month, and you should too. Reasons you shouldn't support Autism Speaks, and associated charities. Boycott Autism Speaks.

Where Did The Light It Up Blue Campaign Originate?

Light It Up Blue was a campaign created by Autism Speaks to run alongside Autism Awareness Month throughout April. It’s something many companies have jumped on in the past without knowing the harm it does to autistic people, so you’re not alone in your confusion about the intentions of my blog post.

Trust me, I’m not just trying to shut down a campaign because I don’t agree with it. That’s not what I’m about. The issue we need to focus on here is that the charity behind Light It Up Blue, autism speaks, is actively dangerous for the autism community. In an age where we’re pushing ahead with embracing neurodiversity, Autism Speaks seems determined to hold us back.

But why shouldn’t we support a campaign that aims to raise awareness and understanding of autism? Isn’t that what you advocate for?

They Want To Find a Cure

It isn’t much of a secret that Autism Speaks’ main aim is to cure autism for good, forever. The message on the website isn’t as obvious as it still was, but you still don’t have to look far to find it. Read between the lines for a minute and it’s obvious that the site is not one that looks fondly towards autistic people and their families.

Is a charity supporting the eugenics of disabled people really what we should be supporting during a month meant to raise awareness?

Very Little Funding Goes Towards Improving The Lives Of Autistic People & Their Families

You might think you’re doing a good deed by donating towards this campaign on a yearly basis, but think again. Less than four percent of funding goes towards supporting autistic people and their families. No, you didn’t read that wrong; their budget really is a measly ~4%. Both fundraising and research take up more of the budget than this, despite the negative connotations their research studies have earned in the past.

Although the charity behind this campaign is said to be non-profit, it doesn’t mean that they are fair with where their funding goes. I mean, what director of a charity needs an average salary of $90,089 a year? When you consider that there are six directors alone, you can see that a large proportion of the money is going towards those who work there themselves.

blue puzzle piece and 'light it up blue' campaign logo

We Are NOT Puzzle Pieces

Alongside the blue light bulb, the blue puzzle piece is another popular symbol shared on social media during this time. Please stop. The idea that autistic people are missing something is outdated, inaccurate and, frankly, quite offensive. Autistic people have brains that formed differently, but just the way they were supposed to. We have everything we need up in our brains, just like, I’m sure, you do. If you want to find out more about what autism actually is, I wrote a post perfect for you to read!

The Only Autistic Person Ever Employed By The Charity Behind This Campaign Resigned Quickly

For a long time, Autism Speaks didn’t have a single autistic person on their board. This is the board that made decisions about the allocation of funds, fundraising, and awareness campaigns.

However, after backlash, they did employ one autistic member: a man called John Elder Robison. He soon resigned because he felt the charity had “delivered little value to autistic people, [when compared with] the many millions raised”.

Don’t Worry If You Didn’t Know About The Negatives Of This Campaign

Although awareness into the dark side of the Light It Up Blue campaign has increased in recent years, there are still so many people who haven’t a clue. I’m sure if you were to ask your friends, a family member, or an acquaintance if they knew it was bad, they’d have no clue. I’d really appreciate it if you took a moment to share this post with them, and anyone else you think it might benefit.

However, it isn’t just your average Joe who is confused over the true intentions of this campaign. In 2017, the London Eye had no idea about the controversy, and planned to light the wheel up blue to celebrate World Autism Day on April 2nd. After complaints made on social media by people from the community and our advocates on social media, they announced that they were going to light it up pink instead. This is to coincide with one of the colours of The National Autistic Society, who helped London Eye executives make their final decision.

Lindt, the chocolate company we all know and love, also announced they were cutting ties with the campaign in 2017. This is another example of why you shouldn’t underestimate the neurodiversity movement, as it was threats to boycott from these people that inspired them to make the change.

blue background with a blue orange in the centre, with orange insides

But Wait… Why Don’t I Know Anything About This?

You might not know anything about this campaign, or the dangers behind supporting it, because of where you live. People outside of the US are likely to have found out about it through the internet, and taken little time to look into the history of it. If it’s supported online then surely it’s a good thing, isn’t it? Not necessarily, apparently. 

It was something I’ve definitely seen from friends and family in my own life. In previous years, many of my friends changed their profile pictures in support of the campaign, and it’s heartbreaking. Obviously I don’t want to intrude and police what people post on their own profiles, so I didn’t say anything, but I wish I had. There’s no harm in raising awareness when it’s for a good cause, is there? I hope this post somewhat makes up for what I was unable to say in person at the time.

Even if you do live in America, where the charity behind Light It Up Blue originates, you could still be nonetheless. This is because those who support the campaign don’t actively look for arguments against it, and those who run it aren’t exactly in a position to out themselves. It’s also tempting for people to shutdown the views of the neurodiversity movement, where we’re still talking out about it to this day.


But How Can We Support Autism Awareness/Accept Month in April

Don’t think that just because the Light It Up Blue campaign is a bad thing that every charity out there is. Charities like The National Autistic Society are great at pioneering for the best support for autistic people and their families. The Autism Self-Advocacy Website is another good one if you don’t live in the UK.

There’s also another movement by the neurodiversity movement, specifically the autism community, that you should consider supporting. It’s something I found out about in 2017, and has continued to grow as time has gone on.

What is the campaign, you ask? #RedInstead.

 boycott lightitupblue and support redinstead pinnable image

Red Instead is a campaign created by autistic people to offer a more reliable, realistic view of the disability we experience on a day-to-day basis. It tries to drown out negative information spread by campaigns like the Light It Up Blue campaign by promoting love instead of fear. 

Those behind this website also believe that this month should be called Autism Acceptance Month instead of Autism Awareness Month, because awareness alone isn’t enough. I wrote a whole post about my thoughts on this, if you’d like to have a read.

Much like people changing their Facebook profile pictures to support the Light It Up Blue Campaign in previous years, Red Instead also have their own border you can use. You can show your support for autistic people throughout the month of April with this snazzy border design by clicking here.

You can also follow the campaign on Twitter at @BeRedInstead. This is active during April, where you can find out what the community is talking about on a day-by-day basis. You could even join in the conversation by using the #RedInstead hashtag on both Twitter and Instagram.

I’m Only One Voice, But Together, We Can Make A Difference

In reality, I know my words are like a drop in the ocean in this conversation. By myself, I have very little influence over changes that are made to the way we celebrate autism in April. However, I also know that I am not alone.

I am part of a big collection of autistic people who are sick and tired of being ignored, spoken over and insulted, constantly. I’m part of a community of angry disabled people who’re sick of others saying eugenics and cure culture is okay, while ignoring how much it hurts and excludes those of us it actually affects. Some people find April so distressed that they actively avoid social media throughout this period. Is it really okay to exclude minorities like this?

I’d really appreciate it if you took a moment to think about what you’ve just read. Consider changing who you support this April so you are campaigning with autistic people, instead of against us. Why not share this post with your friends, or on social media websites? The more people who know the true horrors behind this campaign the better, in my opinion.

I know this is a long post, so if you’ve read this far, thank you so much.

Until the next advocacy post,


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42 thoughts on “Why I Refuse to Light It Up Blue | Autism Awareness

    1. A lot of people aren’t. I definitely wasn’t before I received my autism diagnosis and became involved in the autism community. I’m glad you learnt something new with this blog post!

  1. Love this post so much! It was very well written and I love how at first you were very vague but then explained yourself as the post continued! Can’t wait to see all the future posts!!

  2. Excellent post. I too have heard unpleasant words concerning a certain blue organisation. The main charity I support is the NAS due to the help and guidance they have shown to us. What ever we chise to do tomorrow let it be about raising awareness, acceptance and understanding.

    Let’s start a conversation. Our most popular blog post of all time is being republished tomorrow at 10am. BellybuttonPanda.co.uk

    1. I’m glad to find other people not supporting that certain blue charity either! National Autistic Society, for the most part, are so helpful. They listen to autistic people and actually support the people their charity raises money for. It’s great to know that changes are actually being made when you take part in survey’s and stuff.

  3. I had no idea about any of this! Thank you so much for sharing and educating me on such an important issue. It is vital that we learn as a society to value all members and not try to “cure” things that are not to be cured but rather acknowledged as valuable parts of who we are. So many times people try to get rid of people who are different than they are instead of embracing them and seeking to learn from and enjoy the differences that make us all so much richer.

    1. You’re welcome! I’m glad I was able to educate you about this.
      Yeah, I definitely agree with what you’re saying–that’s a lot of what the alternative campaigns are trying to promote during this month, which is great. Acceptance as opposed to awareness for a cure is definitely the best option of the two.

    1. You’re welcome. I’m glad this blog post was able to teach you something. There’ll be blog posts just like this one all throughout Autism Awareness Month this April, so this won’t be the last you hear from me on this! #REDinstead for sure. 😜

  4. I had no idea that the Light It Up Blue charity had such negative impacts. Thankyou for raising awareness and sharing x

    1. It really is, isn’t it? You would have thought that a charity gave more towards those who needed it, instead of feeding it into the pockets of their CEO’s.
      Yeah, that’s definitely a great thing. It’s been a bit fight in the autistic community to get people to listen to us, but now people are realising why blue isn’t the greatest colour when it comes to autism. I didn’t mention it in this post, but Lindt chocolate have stopped using Autism Speaks as their charity for their Easter Bunnies (I think that’s an American thing, but still worth mentioning), which is another step in the right direction.

    1. Thank you! I don’t blame people who can’t raise awareness with their platform, but I think it’s definitely beneficial to do so if you have the ability to do so. It’s something I really enjoy sharing awareness about, too, so it’s very much a win/win situation!

  5. I came to your post through the Blogging Squad. I’m sorry to hear that your community has to deal with scams like this. I had no idea that light it up blue didn’t that. You are inspiration for speaking up for things that matter to you and thank you for educating me. Great post!

  6. Thank you for sharing & educating. A lot of times I don’t participate in these things because I don’t know enough about them to do so. But then, you just look like a jerk if you don’t. It’s unfortunate that people create campaigns and fundraisers as a way to fund their own pockets.

    1. Yeah, I know what you mean. I thought this blog post would be a lot more controversial than it was, because so many people I know support the Light It Up Blue campaign. It turns out that the ones supporting this movement turned a blind eye to my post anyway, but I’m glad it’s fallen upon the eyes of so many people who want to be educated! It is–unfortunately, I don’t think that’s going to change any time soon!

  7. A great post! I admire the courage it takes to call out a pretty hefty company like Autism Speaks. I’ve heard this complaint of them before and I’m sharing your experience and message on Pinterest. While “Light it Up Blue” is a tired marketing scheme, I think spreading awareness is important, and not just one day out of the year. I look forward to reading more of your posts 🙂

    Rae | Mindful Rambles

    1. Thank you for sharing this!
      It definitely was scary, but when so many people within the autistic community complain about it, it makes me feel slightly more confident that they aren’t going to do anything about this. In an ideal world, they’d take the complaints we make and turn them towards changing the way the charity operates altogether instead of just the wording they use, but that’s too much to ask, evidently.
      Yeah! I 100% agree with what you’re saying about raising awareness/acceptance at all times. It’s something I aim to do, which is why I don’t just write about it during the month of April. While I feel this is a great way to inform people about a condition they might not have known about before, it’s vital that this continues after April, too.

  8. “In reality, I know my words are like a drop in the ocean in this conversation.” <<<—RE: You may be ONE person, but your voice is so important. Don't stop standing up for what you believe and know to be true.

  9. Thank you so much for this post. I followed ToneItDownTaupe and BeRedInstead on Twitter. Ill make an effort to head over to the London Eye when it’s pink and share this post on the day.

  10. The statistics that you mention are no longer accurate and are quite old at this point. This includes the charts that were linked to boycottautismspeaks. Perhaps Autism Speaks had a different funding structure in the past, but it seems to have changed.Both Charity Navigator and Give.org show that Autism Speaks returns 72% of its revenues into it’s program and only 5.1% of it goes to administrative costs. Autism Speaks has been instrumental in my home state in helping lobby for legislative change for insurance coverage. I appreciate your work and people like you for helping to keep charitable organizations honest in their accounting and practices. Best wishes to you this month and I hope that Autism acceptance grows.

    1. I’m not sure whether I’m convinced that much has changed, and I’m quite weary about just what they cover, but I’m glad you’ve found something positive in it. I’m in England so I don’t know the practices of American charities very well, but from what I’ve heard from other autistic people, they change their policies without doing much to their actual charity. The structure might have changed since the director died, though. I’m not completely sure.
      Yeah, I definitely hope Acceptance grows in the future. 🙂

  11. I had no idea! I think they light up the Empire State Building for this too…hopefully they’ve come around and learned the issues. So glad to had discovered this post in perfect time just before Autism Awareness Month. I’ll share it with friends and spread the word! It’s so easy to blindly trust campaigns that seem to be for a good cause so I really appreciate you sharing this.

    1. Oh wow, I hadn’t heard of The Empire State Building doing it, but like you said, hopefully they’ve had time to learn about the issues with the campaign by now. Thank you for sharing this post with friends and spreading the word; it genuinely means a lot to me because, like you said, it’s SO easy to put your trust in campaigns that appear to be fighting for a good cause, which stop you from looking further and researching it from those it actually affects. I’m so glad I managed to open your eyes.

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