It doesn’t seem quite right, does it? That a month designated for raising public knowledge of autism would be so widely disliked by the autistic people it claims to support.
But just to clarify: the phrase “widely disliked” doesn’t do justice to the feelings of some of those negatively impacted by Autism Awareness Month.
The autistic people I’m referring to don’t “dislike” it. They don’t even “hate” it.
They fear it.
For every autistic person like me who spends April in full advocacy mode, there’s another autistic person who spends April doing their best to stay offline. I’m in a fairly privileged position when it comes to Autism Awareness Month, having both the mental energy to talk about the issue, and the platform for my words to be heard (e.g. a six-figure following on Facebook [all links open in new tabs, as always] and this site having 2.4 million views to date). Meanwhile, other autistic people feel unable to express themselves without judgement, or are actively silenced by others.
But wait, isn’t Autism Awareness Month meant to be for the benefit of autistic people?
You’d think so, wouldn’t you?
But let me explain what has been so problematic about Autism Awareness Month for as long as it’s been around.
1. Autism Awareness Month has traditionally been about us, and without us.
The phrase “nothing about us without us” has existed in political circles for centuries, but since the 1990s it has found its way into disability advocacy too.
Why? Because it’s badly needed. And the autism community is not the only disability group to have spent decades being spoken about rather than spoken to.
These days, the world is now waking up to the idea that autistic people should perhaps be consulted when it comes to autism issues. I speak at an increasing number of events where 100% of the speakers are autistic. (Not many years ago, having a token autistic speaker for 20 minutes at the end of a conference would have been revolutionary, so the tide is turning in the right direction.)
However, the decades of autistic people being omitted from the discussion has left the world with a lot of catching up to do. Traditions that were previously seen as being respectful to autistic people (e.g. person-first language, which I’ll cover later) are slowly being turned on their head, as the world comes to realise that the majority of autistic people opposed them all along.
It’s difficult to discuss “nothing about us without us” without coming across as condemning non-autistic parent advocates in general, many of whom are the autistic community’s strongest allies.
Others, however, are autistic people’s biggest obstacles to worldwide autism acceptance, based on the way they choose to talk about their children.
Sadly, the latter group has historically been the loudest. If you’ve ever wondered why you see the occasional autistic person who seems angry with every non-autistic parent ever, or approaches them with an instinctively defensive outlook, it’s because their experience with negative advocates (perhaps even their own parents) has led them to believe that non-autistic parents are dangerous by default.
It comes from repeatedly being told “you’re not worth listening to because you’re not like my child” when you’re thirty years old and obviously not a child.
It comes from being told “you can speak so you’re not really autistic”, when you’re actually a nonverbal autistic advocate typing on a keyboard.
It comes from being told “you have no idea what real autism is like” when you’ve recently survived your third suicide attempt. (I wrote a full response to “you’re not really autistic”, by the way.)
In summary, here’s a picture I made for Autistic Not Weird’s Facebook page.
It’s hard for anyone to let go of something they’ve had control of for a while. This includes those who have enjoyed historic control over the autism awareness scene. But it is good and it is right to let autistic people be the leading voice in a month that claims to be for their benefit.
In fact, in just about any non-disability community, there wouldn’t even be an argument over this.
2. Autism Awareness Month has traditionally focused on the negatives.
And honestly, “focused on the negatives” doesn’t go far enough.
Up until autistic advocates got involved, it was seen as perfectly acceptable to portray autism as a “tragedy” or an “epidemic” that has “stolen our children” (because autistic people are always children of course), and that a “cure” is not only desirable, but essential.
The most infamous example of this was the 2009 “I Am Autism” commercial from Autism Speaks… which literally did accuse autism of stealing normal children.
Quotes from the video included:
- “I work faster than pediatric aids, cancer, and diabetes combined. And if you’re happily married, I will make sure that your marriage fails. Your money will fall into my hands, and I will bankrupt you for my own self-gain. I don’t sleep, so I make sure you don’t either.”
- “I am autism. I have no interest in right or wrong. I derive great pleasure out of your loneliness. I will fight to take away your hope. I will plot to rob you of your children and your dreams.”
- “And the truth is, I am still winning, and you are scared. And you should be.”
For those who want to see what autism awareness can become without the input of autistic people, here’s the video. (Huge trigger warning for devastating anti-autism language, ableism and unhinged hatred of autistic people.)
History will condemn that video. In fact, a mere eleven years on, history is already condemning it.
If we want to truly make the world a better place for autistic people, and a better place for their families and caregivers (who historically have been the priority focus for anti-autism charities), then yes – we need to talk openly about the disadvantages associated with autism. But it should be accompanied by suggestions about how best to accommodate autistic people, or how to protect their rights and dignity.
If all you do is talk about the problems and finish the conversation there, don’t be surprised when the solutions don’t magic their way into existence… or if your listeners think the only way of improving autistic people’s lives is the complete annihilation of autism.
3. Autism Awareness Month has traditionally been loaded with triggering symbols, language and even colours.
If your local charity asks you to “wear blue puzzle pieces to support people with autism”, that sentence already contains three signs that they’re not up to date with autistic people’s preferences. I’ll cover each of these subjects one at a time:
Lighting it up blue
Where to begin? The “Light It Up Blue” movement was started by Autism Speaks in 2010, and promoted in such a way that it became seen as the default method of marking World Autism Awareness Day. (Say what you want about Autism Speaks, but wow- they know how to make their marketing stick.)
Light blue has been the colour of Autism Speaks since its inception, leading to the common perception that Lighting It Up Blue is not so much an act of solidarity for autistic people, but a big advert for Autism Speaks themselves.
Therefore, as a direct result of Lighting It Up Blue, countless regular people have been exposed to the autism-negative rhetoric that has actively made the world more dangerous for autistic people. It comes as no surprise that the autistic community don’t want to be represented by such a movement.
So what can we do if Lighting It Up Blue isn’t an autism-friendly option? Two of the biggest campaigns out there are Light It Up Gold and #RedInstead, and even the rainbow is taking off as well (as a reflection of autism being a spectrum).
Further reading: 5 Shocking Reasons NOT to Light it Up Blue for Autism Day, by Autistic Mama.
The puzzle piece
The puzzle piece has been seen as the “symbol” for autism since the Autistic Children’s Aid Society of North London (who later became the UK’s National Autistic Society) adopted it as its logo in 1963, although the symbol is being progressively seen for its ableism.
Short version: the puzzle piece was chosen to signify how “puzzling” autistic people’s brains were to non-autistic people (yes, really).
This history is not as widely known as it should be. I have to admit, when I launched Autistic Not Weird in 2015, my logo featured little segments of puzzle piece because I didn’t know any better. I even have friends with puzzle piece tattoos, who now see them as part of their personal journey towards autism understanding. Perhaps one day the world in general will see the puzzle piece the same way: as part of the learning curve the world needed to go through before they learned to properly understand and appreciate autism.
Further reading: The Ableist History of the Puzzle Piece Symbol for Autism by In the Loop About Neurodiversity.
Person-first language (e.g. person with autism)
One of the debates that continues to rage is whether those on the autism spectrum should be referred to using person-first language (“people with autism”) or identity-first language (“autistic people”).
Given that multiple studies which have indicated so strongly that the majority of autistic people (albeit not everyone) prefers identity-first language, it surprises me that this is even still a debate. The moment a group expresses unambiguously how they want to self-identify, the argument’s over.
But the ongoing debate is a symptom of the world playing catch-up with our opinions, after decades of being led to believe that the opposite to our wishes was the respectful one.
If you want to know how close your local (or national) charity is to autism acceptance, take a look at their language. Autism Speaks will probably hold onto person-first language for as long as they’ll hold onto the puzzle piece, and for similar reasons. In the UK, the National Autistic Society switched to identity-first language several years ago (and as a result, they still have to deal with well-meaning parents and professionals “correcting” them every time they say “autistic person”).
Such “corrections” are wrong even in medical circles, as even the language guidelines for NHS England call for identity-first language for autistic adults. (Although interestingly, the guidelines claim “there is less agreement about how to describe [autistic] children.” Presumably the children themselves have not been consulted, which would make this a very strong illustration of the difference made when autistic people are allowed to self-advocate.)
4. Autism Awareness Month has traditionally been full of “slacktivism”.
A while ago I wrote an article called “How to raise ACTUAL autism awareness”, and I often give talks about this exact subject. One of the points it makes is about how “raising awareness” can now be as easy (and as shallow) as changing your profile picture, whilst not making any kind of practical changes.
I mean, why donate actual money to an autism-friendly charity when you can put “I love someone with autism” on your Facebook picture completely for free?
(Except, that’s one of the worst things for autistic people around Autism Awareness Month. Even our social media feeds, which we often rely on for meaningful communication with those we love, are loaded with reminders that “this is the month when we talk about how bad autism is”.)
Then of course, there’s this kind of crap right here.
Thankfully, due to the deluge of copy-paste messages we’ve all been doing during the coronavirus lockdown, this is the first year in a while that I’ve not had this “game” sent to me.
The basic concept is that you post one of these sentences as your status, wait for someone to take you literally (as an autistic person is disproportionately likely to do), and then send them this copy-pasted message asking for them to join in, to raise “awareness” of the condition that made them gullible enough to fall for it. Or something like that.
Again, there’s no explanation for what awareness this is raising, or how it aims to change the lives of autistic people (aside from making them feel stupid).
The most important sentence in that awareness article is this: if your online awareness-raising has no impact outside of the internet, then it has had no impact.
Not easy words for me to type when (outside of my speaking engagements, and work as a special needs tutor) almost all my advocacy is performed online. But my aim is to put the kind of things online that will help people become more autism-friendly in their day-to-day lives, making a difference that lives on once they close the laptop or put their phone away.
If I didn’t have that kind of aim, it would have been so easy to just make “share if you love someone with autism” pictures, get tens of thousands of shares, and watch my follower base grow without a single person’s life actually improving (except mine, of course).
5. Autism Awareness Month has traditionally played a part in the demonising of autistic people.
Here’s the big one. And it has devastating consequences.
The moment we realised that the coronavirus may be a threat to our health services’ ability to function, disability groups started to get nervous. Because the closer we would get to being overwhelmed by COVID-19, the bigger the fear that disabled people would be asked to lay down their lives for everyone else.
It’s thankfully not common practice, but on rare occasions it’s been seen happening: reports are coming in from multiple countries about doctors contacting parents of autistic people, asking them to sign “Do Not Resuscitate” (DNR) orders, presumably so that their children won’t have to occupy a hospital bed that could otherwise be used by a non-autistic patient. (These DNR orders, of course, are supposed to be reserved for those with terminal conditions.)
This month the NHS and their counterparts worldwide are under enormous pressure and are rightly being celebrated, although sadly even before this month they have had to spread the word that learning disabilities are not reasons to issue DNR orders, for fear of the occasional medical professional recommending them for healthy autistic people with learning difficulties, on the basis of their autism rather than their health.
[For reference- the NHS recently sent out this letter to clarify their official position: that these kinds of assessment should be made on a case-by-case basis and that autism, Down’s Syndrome and learning difficulties are not in themselves reasons to issue DNR orders. Sadly, the letter needed sending out in the first place.]
Yes, it’s utterly horrifying – and it casts the rest of the healthcare profession in an unfairly bad light. And it is a direct consequence of several decades’ worth of negative advocacy.
The same people who spent those decades telling the world that their autistic children were “tragedies” who needed a “cure” are now being faced with the very real prospect of their own children being refused intensive care.
I wonder how these people feel? Do they recognise the part they played in these doctors’ decisions, having spent so many Autism Awareness Months describing autistic children as a burden on their innocent families? When they repeatedly claimed that the planet would be better off if autism were wiped from the face of it, did they ever imagine the impact their words would have on the doctors who now play triage with the lives of their disabled children?
If you spend years telling the world that autistic people are lesser, don’t be surprised when doctors start believing you and act accordingly.
I made this picture last year, before anyone had heard of COVID-19. It distresses me how prophetic it ended up being.
So how do we change this?
Here, have a few bullet-points.
- Change the name of it to “World Autism Acceptance Month”. Because you can be aware of something and still be an unhealthy influence over it. The negative advocates responsible for those DNR orders were very much “aware” of autism. We need acceptance now.
- If you’re running an autism event, have autistic speakers.
- If you share stuff on social media, share from autistic writers.
- Buy things from autistic artists, musicians, craftspeople, authors and so on.
- Change the narrative from “tragedy” to “difference”, and talk about our strengths as well as our difficulties.
- Read the article about “raising ACTUAL autism awareness” that I posted earlier.
- In day to day lives, let us be our genuine, unmasked selves. And allow us to access things on our own terms.
I hope this article has helped those who have needed to read it: whether you were simply curious about autistic perceptions of Autism Acceptance Month, or whether some of the content has challenged you (which I always say is a good thing). You’re welcome to join Autistic Not Weird’s Facebook community, and for those who feel my work is worth supporting, here’s a link to my Patreon page for those who want to help me keep on advocating for a living, in exchange for various rewards.
Take care, and if you’re autistic, I hope this month is bearable for you.
Chris Bonnello / Captain Quirk-
Are you tired of characters with special needs being tokenised and based on stereotypes, or being the victims rather than the heroes? This novel series may interest you!
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Book one can be found here:
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Chris Bonnello is a national and international autism speaker, available to lead talks and training sessions from the perspective of an autistic former teacher. For further information please click here (opens in new window).
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