How (Not) To Do Autism Awareness Month

April is Autism Awareness Month, and I overheard someone say in a Facebook community that they got jumpscared by Autism Speaks merch in Walmart already, so I figured it was a good time for a little review of how (not) to handle AAM in advance of anyone making social media content or the like.

Main point: Unfortunately, a lot of the content / messaging that is put out is harmful due to a failure to actually go directly to the autistic community as opposed to neurotypical “experts” who talk about us instead of to us.  This results in content that is actively offensive at worst, and sometimes just useless to autistic people at best.  I assume most random people mean well though, so I wanted to make a guide for how to, and not to, talk about us this month, as well as evaluate what you see others say/post about us.  Let’s get started, shall we?

Do not:

  1. Use puzzle pieces. These are meant to indicate that we’re an unsolved puzzle, or missing a piece of what makes everyone else complete humans, or something like that, and therefore are seen as offensive. (Here’s an article that explains it in more depth, as well as touches on some other things on my list.) 
  2. Promote the color blue.  Blue is used as the autism color because it’s traditionally been seen as a boys’ issue due to sexism in what research populations are prioritized and helped, so while it may be a very nice color as part of design, avoid explicitly using it as “the autism color.”  It’s also the color of Autism Speaks (see next point).
  3. Promote Autism Speaks.  Autism Speaks is often seen as a hate group within the community for focusing on a “cure,” promoting ABA, etc. actually.
  4. Promote ABA. This is basically conversion therapy to make people act neurotypical, and traumatizes kids for the convenience of other people around them instead of focusing on actually accommodating the child’s needs.  Many of us consider it child abuse.
  5. Be trans- or acephobic.  Autistic people are much more likely to be trans and/or asexual than the general population (and more likely to be LGBTQIA+ in every category surveyed in the source linked at the end), so to be an ally to the community you have to support those communities too.  We come as a package deal in some ways.

Instead, do:

  1. Use the rainbow infinity symbol for neurodiversity generally, or the gold infinity symbol for autism specifically.  Or if you want to be more cutesy, the autism creature :P.  Gold and red are the colors often associated with autism by the community.  
  2. Use identity-first language when talking about us generally.  Some individuals prefer “(person) with autism” and this should be respected if they request that you refer to them as such, but 76% percent of us exclusively use “autistic (person)” between the two, and of the remaining quarter, the majority are okay with both, so when you’re talking about autistic people as a category, you should refer to us as autistic, not “with autism.”  It’s similar to sexual orientation in that way: you don’t say that you “have bisexuality,” you just say you’re bisexual, for example.
  3. Consider talking about autistic adults too.  Autism awareness is very child-centric, but we don’t grow out of it – autistic children grow up to become autistic adults, who often don’t know they’re autistic until they’re adults, and have little support available regardless of when they found out.  So this is an area where raising awareness can have greater impact.
  4. Make sure you’re getting your info from autistics, not neurotypicals who have a financial incentive to talk about us like it’s a tragedy that needs a cure.  Perhaps you’ve heard the phrase “nothing about us without us.”  We can speak for ourselves, and we’re fundamentally a more reliable and better informed source on our own lived experience than an outsider talking about us – you don’t need to rely on articles from Autism Speaks for info.

Why we need both awareness AND acceptance:

I also want to note that awareness alone isn’t enough.  Many people say “we don’t need awareness, we need acceptance.”  I think most people know at this point that autism exists and a few basic traits, and would go “Oh yeah, I support autistic people” in April, but months later when someone you work with is “weird” and communicates more directly and bluntly than others, do you just go with it or do you assume they’re being rude to people and complain to someone?  (Not a hypothetical – I see vents all the time about people getting called into HR, written up, etc. because people are offended by their to-the-point communication style.)

To some extent we don’t need awareness reminders; we need people to actually accept and accommodate autistic traits on a day to day basis, even when it challenges their expectations for how people should be or what’s reasonable.  Awareness only goes so far if it doesn’t lead to actual changes in people’s behavior towards those around them.

But that said, I actually think we do need more awareness as well.  I didn’t know I was autistic until around 2021 because I simply didn’t know about the medical sexism element and the nuances on how it can manifest in different people.  I’m not sure we need the entry level “Hey guys, autistic people exist, don’t be offended if they don’t make eye contact!” awareness any more, but we do need greater awareness of all the nuances of what being autistic can be like, especially if you’re not a young white male.  Dig deeper for your awareness content.

Why this matters

A lot of this is basic stuff.  I don’t say that to make random people feel bad – when big organizations like Autism Speaks claim to help autistic people and are doing things like putting puzzle pieces everywhere, there’s little reason someone who doesn’t have an openly autistic friend or family member would know to be wary – but because it’s a measure of how much a source can be trusted for accurate info, to handle our concerns appropriately, etc.  Stuff like the survey at the end (we’re almost there, I promise) is freely available to the public.  If a professional source talks about us using terms and symbols that the community rejects, that’s a red flag that they haven’t engaged with the community in a meaningful way when they could have, and if they haven’t actually engaged with us, how can they be trusted with anything autism-related on a more serious level?

If you happen to be a social media manager, that’s something to keep in mind.  (Although you’re probably on the right track already if you’re reading this post to begin with.)  More likely this is useful as a way to evaluate sources of info though if you just want to know how seriously to take them / whether they’re likely up to date with community-driven data.  For example, diversity trainings at your workplace that claim you always have to refer to us as “people with autism” if you want to be respectful.  

Lots of information in one place:

If you’re a regular reader you’ve seen me talk about this by now: the Autistic Not Weird Community Survey of over 7000 autistic respondents on everything from terminology preferences to what social environments we struggle with to what co-occuring conditions we tend to have.  This is probably the best place to find relevant and accessible information without having to slog through a bunch of organizational sources trying to figure out what’s by the community, or having spent a lot of time in online autistic spaces already.  (This is also the source for the person versus identity first language and LGBTQIA+ stats.)

Case in point of some of things discussed here: I just looked up “autism” and “autism awareness” photos on pexels for the featured image, and despite the large quantity of photos, there’s nothing I’m comfortable using because everything that’s not a photo of a specific person has puzzle pieces, children’s building blocks, or is exclusively done in blue.

Questions? Leave a comment!

4 thoughts on “How (Not) To Do Autism Awareness Month”

  1. I like this- especially the point about autistic adults. I think autism is a lot more noticeable in children, because children are forced to do a lot of things- they can’t choose what clothes they wear, what food they eat, what activities they participate in, etc. As an adult, you can just choose to avoid the things that you don’t like, so then nobody really notices that you have a problem with this or that sensory thing or type of clothes or whatever. It very much does *not* mean that adults aren’t autistic, or they “grew out of it” or anything like that!

    1. That’s true. I always had a hope that I could grow out of my autistic traits and do everything everyone else can, but I’m now 38. I admit, I now live a lazy life, doing much less than I did in my youth. But I also have less stress, and certainly less meltdowns.

    2. Goes with functioning labels too I feel like – I saw a discussion/thread once where people were talking about how another reason functioning labels are lacking in nuance/usefulness is that some kids who are labelled as low-functioning grow up to be considered high-functioning adults…because they were constantly overwhelmed or the like as kids, and largely just needed more autonomy.

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