2020 Edit – I was thinking about removing this post from the site, but I’ve decided against it. I think it’s important to show a learning curve, and prove that autistic advocates can change their mind over time as they learn more.
I am now completely against autistic orgs and charities using the puzzle piece, person first language, and having a different public image which hides what goes on behind closed doors. I still think that we can educate parents and professionals, but I can see that this post could be seen as tone policing, and for that I apologise. I’m not going to hide it though, I’m proud of where I’ve come, and I’m not going to hide where I was.
Today, for the first time in years, I wasn’t going to write anything. I have struggled to sympathise with the stories, people, organisations, and even myself, and found that during the build-up to today I had descended into negative thought patterns and self-pity, largely due to everything that’s going on in the land of social media. A day which has previously seen me shout from the rooftops about how autism affects my family and others I care about, has this year seen me confused, bitter, and disaffected by the whole damn circus.
The day, it seems, has become a battle between two warring factions: autistic people, and everyone else. The war zone is made up of zeros and ones, and the weapons are razor-sharp words fired by frustration and hatred. If the pen is mightier than the sword, then words typed in comment threads are more explosive and destructive than an atomic bomb. As the fight continues about puzzle pieces, whose voice gets heard first, what colour we should ‘light it up’, and which came first, the person or the autism? people are missing the entire point of the day. There is still a horrific lack of services and understanding for autistic people; there is still a vast number of people who struggle to obtain an accurate diagnosis, particularly females and a-typically presenting children; people still truly believe that vaccinations cause autism; and the very real discrimination that autistic people face – in education, employment, mental health services, law enforcement etc – barely gets a mention.
Don’t get me wrong, it’s not that I feel the people arguing against things like the puzzle piece don’t have a point, it’s that they (and I) have missed the bigger picture by focusing on that tiny element. It can make the campaign look like a bit of a joke, and often completely obliterates any positive messages we are trying to convey.
We know that Autism Speaks is an evil corporation which is probably headed by a reincarnated Hitler, but not everyone does (yet). Yelling at a mum for using the AS Facebook profile frame when she’s asking the autistic community a valid question isn’t going to make her come back to us. It’s going to make her defensive, stick her middle finger up, and run into AS’s open arms before you can say ‘eugenics’. Perhaps it doesn’t matter if the information seeker has lit up blue, red, gold, or purple, as long as they are asking the right questions, and listening to our answers we will be moving towards our aim of autism acceptance. You can always tag on the end why lighting up blue isn’t helpful, and is certainly not what autistic people want.
Yes the puzzle piece is a bit of a bullshit symbol, but telling people to actively avoid and decry any organisation or person who uses it, without looking to see what work they do and how they support autistic people and their families, is equally bullshit. Not everyone has the NAS budget to change all their branding overnight, ya know! People have different ideas of what the puzzle piece symbolises, and it seems to be quite different across the Atlantic divide. I know that it’s easy to assume the worst when you see it (and I do remind those around me why that is), but most people don’t have the same connotations with it as Autism Speaks. For some people and organisations it symbolises their desire to help autistics through the puzzle of the allistic world, and the idea that some use it to signify that autistic people have something missing is completely mind-blowing to them. This is where intent really does matter; perhaps establish that before embarking on your seek and destroy mission.
Let’s be honest here, as much as I agree with, prefer, and use identity first language, as long as what’s being said before or after the ‘label’ is kind, helpful, and honest, does it really matter? Like *really really* matter? By all means reply to whatever is being asked/stated with “this is my constructive answer/response which adds something to the original point/question. Oh, by the way, autistic people prefer person first language because autism isn’t separate from us, and is part of our identity, just like someone is Welsh, not ‘with Welshness’.” Stop replying with “don’t help this person who’s trying to learn because they wrote words down the wrong way, and I don’t like it.” Of course people need to listen to autistic people more, including the way in which we like to be addressed. Perhaps they will start if we welcome them with the patience, kindness, and understanding we expect from them.
Everyone please remember that parenting autistic children can be very hard. Vilifying desperate parents who just, for example, want to learn how to manage behaviour they find challenging is a dick move. Save that for the cure hunters, vaccine fear-mongers, and conversion therapy (read ABA) touts. Of course, if something that’s been said is hurtful you should point it out. But again, intent matters here and if someone doesn’t realise why what they’re saying is bad, don’t yell at them for it, explain (nicely) why, and they are more likely to remember it and not get defensive.
The things I have highlighted are definitely important, but they are *not* more important than equal access to diagnosis, changing the education system so autistic children don’t end up refusing to go due to horrific anxiety, why functioning labels are unhelpful, and that autistic children become autistic adults. They’re not more important than pointing out the lack of services available to help autistic people (particularly in adulthood), that abuse of autistic children is excused in a way that would never happen with allistic ones, that there’s a huge number of autistic parents of autistic children (like me) who are doing the best they can in a system that’s not set up for them or their child(ren), and that there’s a fucking measles epidemic (again) because people wrongly think that vaccinations cause autism and autism is more scary than a child dying. Let’s focus on what’s really important here, and put in the other things as footnotes and addendums.
Most of us have a limited amount of energy to devote to the cause. It’s exhausting, and we’re not even necessarily allocating that energy wisely. So maybe we can put down our weapons; use the rest of the week as an armistice. Lift up autistic voices, spread science not hate, and answer questions honestly and empathetically. Let’s educate, not berate. To those who say that people won’t learn or listen if we’re calm and nice about it think about this: that is what some people say about autistic children who are being failed by the education system. They say that the autistic children don’t listen, and the only way to teach them is to resort to extreme methods (again, read ABA). We all know that’s complete balogna, so why are we doing the same thing? Yes there are loads of people yelling their anit-autism hate speeches and generally being douches, but they are mainly in their anti vaxx echo chambers, locked away where they belong. They may be publicising their locked-down chamber, but thankfully most people disagree with what they’re saying and are pretty vocal about it. Let’s not stoop to their level. We’re better than that; we’re autistic.