This is going to be a long one.
I’ll include a summary at the end.
Thank you for wanting to help us
International Autism Awareness Day is tomorrow (2nd of April). Many well-meaning people will spend the day wearing blue, sharing pictures of puzzle pieces, and sometimes making blue puzzle pieces! I understand you want to help. You want to spread awareness and help autistic people. Maybe you have an autistic loved one, or an autistic friend or colleague. Maybe you work with autistic people. Or maybe you saw the campaign online and wanted to help out of the goodness of your heart.
Thank you. Thank you for wanting to help us.
But lighting it up blue and making puzzle pieces is not the way to do this.
The ‘Light it up Blue’ campaign is run by Autism Speaks. The puzzle piece logo was originally used by the National Autistic Society, but they have since changed the logo. The puzzle piece is still used by Autism Speaks.In fact, their logo is a blue puzzle piece.
Autism Speaks is, in my experience, not supported by the vast majority of autistic people.
Why is this? Why would the very people the organisation claims to help dislike it?
The facts
Autism Speaks released ‘Autism Every Day’, a video about autism. I write about it here.
(WARNING: ableism, suicidal ideation, homocidal ideation)
They also released ‘I am Autism’, which is also wrote about under the above link.
Autism Speaks only has 2 board members with autism. How can they claim to speak for us when they barely include us?
Autism Speaks only recently dropped the word ‘cure’ from their mission statement. Information.
Autism Speaks only recently accepted that vaccines don’t cause autism, after over a decade of research proved this. This may be too little, too late, as there are more and more measles outbreaks due to anti-vaxxers refusing to vaccinate partially out of a fear of their children developing autism.
Side note: VACCINES DON’T CAUSE AUTISM. Autism symptoms are not obvious until around the same time children are vaccinated, leading to many believing vaccines caused their child’s autism. Correlation doesn’t equal causation. Also, it’s pretty offensive to autistic people to suggest you would rather your child died from a preventable disease than potentially have a higher risk of developing autism.
Autism Speaks spends most of their money on ‘awareness’ (which often increases the autism stigma, as shown in the above videos), lobbying, fundraising, and research. They spend less than 2% of their money on family services according to Autistic Advocacy. In my opinion, an organisation that claims to speak for autistic people should spend their money on actually helping them, instead of fear-mongering.
Light it up Blue
The colour blue was, as far as I know, chosen because autism was considered a ‘boys disorder’. More boys are diagnosed with autism than girls. However, the original autism diagnostic criteria was based off of boys, and girls often ‘mask’ or camouflage their autistic symptoms due to societal pressure. The difference in autism rates between males and females is much smaller than originally thought, and may even be negligible. So the use of the colour blue is no longer relevant, and can cause people to believe autism is a ‘boys disorder’ and may not believe autistic women or support them. Also, the use of blue to represent male and pink to represent female is very outdated.
The puzzle piece is controversial within the autistic community. Many autistic people dislike it because it suggests we are ‘broken’, ‘missing a piece’, or are a ‘puzzle’. We are whole, complete autistic people, not broken non-autistic people. Many prefer the infinity loop to represent the whole spectrum.
What should I do?
There are other campaigns and colours to use. For example, Red Instead is an autistic led campaign than encourages people to wear red in opposition to the blue of Autism Speaks. Light it up Gold is also an option, since the symbol for gold is Au, which is also the start to the word ‘autism’. There are others, such as Tone it down Taupe. But generally, as long as it’s not blue, it’s an improvement. Red Instead is probably the most well known in America, and I think Light it up Gold is fairly popular in the UK.
Instead of donating to Autism Speaks, please donate to other organisations. In America, you can donate to the Autism Self Advocacy Network or the Autism Women’s Network. In the UK, you can donate to the National Autistic Society. I’ve also heard good things about Autistic UK.
Summary
Autism Speaks is generally disliked by autistic people. They run the Light it up Blue campaign which excludes autistic girls. The puzzle piece can suggest we are broken.
Instead, you can wear red or gold, and donate to the National Autistic Society.
Listen to autistic people.
Here are some blogs with more information about Autism Speaks:
(StimSensory Ltd is not affiliated with the following people or blogs)
https://www.thedailybeast.com/autism-speaks-but-should-everyone-listen?ref=scroll
https://medium.com/@KirstenSchultz/a-roundup-of-posts-against-autism-speaks-5dbf7f8cfcc6