Update, 07/04/2021: It has come to my attention that the article and materials provided below have been used to promote harmful “services”, such as ABA. Do NOT use our symbols and language to whitewash your business. Instead, listen and change your business. Get in touch if you have questions. – Joana
5 Do’s & Dont’s for #AutismMonth:
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Happy World Autism Day! Although the real craic takes place on Autistic Pride Day, 18th June, but sure who doesn’t like an extra holiday?
At least you’d think that Autistic people would appreciate having a whole month of ‘Autism Awareness’, but it’s often the opposite: Imagine the awkward feeling you might get while people are singing ‘Happy Birthday’ to you. But now imagine that they insist on calling you James even though your name is Séamus. And they baked you a cheesecake, although you’re lactose-intolerant. And instead of ‘Happy Birthday’, they sing ‘Danny Boy’ to mourn your very existence.
This is what Autism Awareness Month feels like to many Autistic people. Looking at all the well-intentioned campaigns, social media posts, and PR events leaves us feeling unseen, unappreciated, unlistened to, in short: unrepresented. Scrolling down your newsfeed to find it plastered with misinformation and puzzle pieces is disheartening.
Here are 5 simple and very basic ways you can show your support and make Autistic people feel more appreciated by using our symbols, our colours, and our language. The only caveat: You have to change your perspective and approaches at the same time, or else you will cause more harm than good!
We’re always learning and the language we use is constantly evolving with our community. The purpose of this post is NOT to attack or shame anybody who has used any of the “Don’ts” listed below. Just keep an open mind—and heart—and listen. Please spread the word!
If you wish to learn more, please check out the resources below, especially this extensive survey by Autistic Not Weird (Updated 2022)
1. Don’t puzzle us with your puzzle pieces
You know what they say—the path to hell is paved with puzzle pieces. (Maybe not the exact wording, but as an Autistic person, I’m not supposed to understand idioms!) Please don’t use puzzle pieces to represent Autistic people.
The puzzle piece symbol was first used by the National Autistic Society in 1963. They created a logo with a weeping child to represent that we suffer from a ‘puzzling’ condition. To many Autistic people, it makes us feel as if we are missing something. Together with the colours and other design elements, it is often seen as infantilising, perpetuating the myth that Autism ends when you turn 18. It is also the logo of Autism Speaks (see below).
It’s no surprise that we don’t feel events or groups that use it are safe spaces for us.
What can I use instead?
The golden infinity loop for Autism or the rainbow one for Neurodiversity/ Neurodivergent people. Neurodivergent is a positive umbrella term for Autism, ADHD, Dyslexia, Dyspraxia, etc. Neurodiversity is like biodiversity, but for brains. Autistic neurology is not ‘less than’. We do not have disordered or defective ‘normal brains’. Diversity and variation are a vital part of the human experience. The rainbow colours capture this idea well. The infinity loop shows that a spectrum doesn’t have a mild and a severe end.
2. Don’t #LightItUpBlue
Sorry, but blue is not en vogue this season! Please don’t use the colour blue to represent Autism.
Two words: Autism Speaks. The ‘Light It Up Blue’ campaign is associated with a notorious American organisation called ‘Autism Speaks’. From constructing a harmful narrative of Autistic people being a burden and Autism being a predator to promoting harmful ‘treatments’ and their project of collecting and sequencing Autistic DNA, there’s a host of things wrong with them and the vast majority of Autistic people see them as a hate group. Blue is traditionally associated with boys and used to perpetuate the claim that boys are more likely to be Autistic. The more we learn about Autism, the more we understand that a) many girls and women just go undiagnosed, and b) gender and Autism have a complex relationship. In fact, many Autistics don’t identify as male or female.
And while it is a lovely, calming colour, it’s also associated with low mood (we ‘feel blue’ or ‘have the blues’, not the reds or yellows or oranges).
What can I use instead?
In the US, #RedInstead was created in opposition to Autism Speaks’ campaign.
In general, we prefer gold because the chemical symbol of gold is Au – and ‘cause we are gold.
3. Don’t treat Autism like an add-on
Please don’t tell an Autistic person that they “have autism”, are “affected by autism”, or “live with autism”.
Let me ask you, are you a person with Irishness? With tallness? With femaleness? Or are you a tall Irish woman?
Being Autistic doesn’t mean being ONLY Autistic, but it does define our experience. It’s how our brain is wired, so arguably, it defines our lives more than nationality, culture, or gender. If you tell us “Don’t let your autism define you” what we hear is “Your autism is a blot on an otherwise acceptable person”. Autism is not a stain, and Autistic is not a dirty word.
I could write a whole essay about this, but this one-minute video by Kit Autie sums it up perfectly (and hilariously).
What can I say instead?
Autistic person. Autistic. Or Neurodivergent.
This is not an “iPhone vs Android” or “Barrys vs Lyons” kind of situation. The numbers are clear. The vast majority of Autistic people prefer identity-first language (‘Autistic person’) to person-first language (‘person with autism’).
While the origins of person-first language are positive, the context was different. Person-first language was intended to destigmatise people with HIV/AIDS. Autism is not in the same category, it is not a disease or illness.
4. DO get your language in order
Don’t talk about Autism Spectrum Disorders and ‘symptoms’ like social communication deficits, or restrictive repetitive behaviours.
We are not disordered, we are different. How would you feel if someone called your whole way of being ‘disordered’? You could find disorder in any human behaviour, if you wanted to. Let’s take small talk—something a lot of Autistic people find either bland or bewildering. Restrictive-repetitive questions with no need for an answer and an unhealthy obsession with meteorology? Sounds pretty disordered to me. (I’m joking. Meteorology is fascinating. Tell me about your favourite type of cloud!).
What can I say instead?
Deficits? Let’s call them differences. Symptoms? They’re traits. Restricted interests? We call them SPINs (‘special’ interests), although some people don’t like the word ‘special’ because they’re just interests. Hobbies. Passions. Fields of expertise. The same way ‘special’ needs are just human needs.
Repetitive behaviour? We call it stimming (self-stimulatory behaviour). Most people do it, but Autistics have perfected it. You should try it out some time, it’s fun! May I suggest rocking yourself to sleep while listening to the Shipping Forecast, since you all like the weather so much? It’s actually very soothing.
5. DO be aware of the awareness campaigns
Autism awareness isn’t good enough…
… it seems that we need ‘Autism awareness’ awareness. A quick look at this week’s news headlines tells us what kind of causes we usually raise awareness of: Cancer. Drunk driving. Kidney health. Domestic violence. Sexual assault. Autism. Find the odd one out. Don’t get me wrong, these are all serious and important issues. Except Autism isn’t an issue in itself. We don’t need to be aware of Autism. But we need to be aware of the appalling lack of supports and services for Autistic children and adults. The bullying and discrimination of Autistic people at school and in the workplace. Abusive ‘therapies’ and ‘cures’ like ABA. These are things we need to be aware of. Autism awareness just isn’t good enough.
What can I say instead?
Autism Acceptance Month. It should be a given, but sadly, it’s not.
Which is why some Autistic people ask for Autism Advocacy Month. Unfortunately, we still need a lot of that. If we go a step further, we can call it Autism Appreciation Month—don’t just appreciate our redeeming ‘superpowers’, but our whole Autistic selves, the good, the bad, and the stimmy. And hopefully, Autism Whatever Month will become a year-round attitude.
Most importantly, just listen to Autistic people. If you’re not sure—ask. If your company, organisation, parenting group, or book club wants to do something ‘for autism’ this month, ask how many Autistic people are involved in the planning. If the answer is zero, get some input from actually Autistic employees, volunteers, parents, or advocates. Credit and where possible compensate Autistic advocates. Just remember: Nothing about us without us.
Some common objections we hear:
“But my ASD child likes the puzzle piece and his favourite colour is blue.”
Blue is a beautiful colour and often considered the most popular one. And who doesn’t like a good jigsaw puzzle? But does your child understand the complex history and discourse around either of them? If your kid likes puzzles, by all means get them a Ravensburger with dinosaurs, cats, or whatever their SPIN is. But don’t plaster your Facebook feed with Autism ribbons and puzzle pieces. Personal design preferences are not the same as choosing a symbol to represent a whole group.
But I have a friend with autism who prefers to say “I have autism”./
I myself say I have autism.
Respecting individual preferences is important. A minority of autistic people prefer one of the things listed as “DON’TS” above and they should NOT be attacked for their personal choice. Some people might prefer person-first language for historically good intentions, out of habit, or because of cultural differences. Others want to take a symbol or expression and claim and reframe it to change its narrative, similar to what we are doing by reclaiming words like “Autistic”, “Disabled”, “Queer”, etc.
There might be good reasons. However, internalised ableism isn’t one of them. In that case, being more informed can be empowering. Constructive discussions within a community are healthy, so please feel free to share this post with your Autistic friend—I would love to hear their take on it. The journey to self-acceptance is personal. It takes time and should come from within. Nobody likes to be told who they are. All we ask for is to make “Autistic” the default when referring to us as a group.
But who are YOU to speak for the Autistic community?
I am not trying to speak for or over the Autistic community. This is an opinion piece based on information from within the Autistic community. Polls and surveys have shown time and time again that the majority of Autistic people prefer identity-affirming language and symbols. If nothing else, look at it statistically. The likelihood that you will offend an Autistic person is higher if you use person-first language and throw puzzle pieces at them. It also stings if you get hit in the eye with one. (Don’t ask how I know.)
Please have a look at this extensive survey by Autistic Not Weird (Updated 2022)
But I was taught that person-first language (“with/have autism”) is more respectful.
Ask yourself who is telling you to use person-first language—mostly medical professionals and non-Autistic led organisations—and who is asking you to use identity-first language? Autistic people. Why shouldn’t we get to choose ourselves? Please don’t treat our identities as an intellectual exercise. It causes us more pain than you. Don’t be shy. “Autistic” isn’t a dirty word. It isn’t disrespectful. Ignoring Autistic preferences is.
Nobody likes to be called out. There’s no need to feel bad or make others feel bad. Just do what Autistic people would do: Focus on the facts. Language matters. Symbols matter. Not only what language and symbols we use, but also what we use them for. Do NOT use our language and symbols to promote anti-Autistic therapies like ABA or ‘cures’. Ultimately, what matters most is action.
What small thing can you do to support your Autistic friend, coworker, parent, partner? What big things do we need to focus on for tomorrow?
Hopefully, this post will help you contribute positively to Autism Month. Pro tip: Search for #ActuallyAutistic or #AskingAutistics to discover and share posts by, you guessed it, actually Autistic people.
As an Autistic ADHDer, Jo likes to come up with a million ideas but sometimes struggles to keep track of the two dozen tabs that are open in her mind at all times. She co-founded Neuro Pride as a space for Neurodivergent adults to come together and thrive – to celebrate ND culture and community.