Autism Awareness Day 2020: Awareness vs. Acceptance

This is the first in a series of weekly blogs on Autism Acceptance in honour of Autism Awareness month, which is April.

As you may or may not know, April is Autism Awareness Month, and today, the 2nd of April, is Autism Awareness Day. I wrote last year of some of the many things of which I am aware as an autistic person – the unfairnesses, the hurt, the constancy of misrepresentation and misunderstanding, and the oppression we face as a community from the world at large.

Those problems are still there, though some things are getting better. Last year’s post was very necessary for me in some respects, allowing me to get some issues off my chest. But there is a greater point about this month that the autistic community often prioritises over the traditional awareness model, and which I somewhat ignored when I wrote my old post. Instead of celebrating autism awareness, many autistic folk, particularly online where I interact with most of them, prefer to talk about autism acceptance  as the focus of April for several reasons.

Firstly, ‘autism awareness’ has become something of a byline for organisations such as Autism Speaks, who use it to promote fear around autism and autistic people. They want us to be aware of the ‘epidemic’ of autism, the horrors it inflicts on those who are around autistic people, and why it must be cured and eradicated. They ask us to ‘light it up blue’ and use puzzle pieces to signify that we need ‘solving’ or that we have something missing. Awareness is used as a weapon against the very people it’s meant to be helping, with dangerous, ableist rhetoric that dehumanises, stigmatises, and hurts autistic people. The voices of those who espouse this kind of thinking are loud enough already without giving them yet more attention.

Secondly, awareness is very easy to confine a single day. One day a year, use a hashtag, comment something loving to an autistic person you know, maybe catch a video or read a blog post, and boom, you are aware. Right?

None of these things is a bad thing to do, of course. And I am as guilty as anyone when it comes to the thrum of activity that comes from me around April and then dies off to only produce two blog posts for the rest of the year. But what it does is makes being aware of autism an isolated thing, rather than continuing for the other 11 months of the year. 

Relatedly, and lastly, awareness alone doesn’t actually help us, in general. While awareness is and of itself is clearly not a bad thing, and is obviously a necessary step in any ally’s journey, stopping the conversation at awareness misses what would truly help. It does not elicit ongoing action of those who want to be allies to us, and can end up leaving us high and dry when April is over. You can switch off awareness, leave it behind when the 1st of May comes round, and ignore it again until next April. The problems we autistic people face don’t lessen just because our turn on the awareness carousel is over for the year.

These are just some of the reasons why many autistic people, including me, do not find awareness to be a useful focus at this time of year, and why we talk about acceptance.

Autism acceptance demands that we do not see autistic people as broken, defective, wrong, or otherwise less than human. Rather than simply othering us, acceptance embraces who we are, accepting our differences, and adapting to accommodate them. Acceptance listens to autistic people when we talk about how we want to be referred to, takes in the terminology around our lives and experiences, and presumes enough competence of us that we can tell our own stories in our terms. Acceptance does not say to parents that they must ‘grieve’ a newly-diagnosed child, or treat autistic people as lost or missing. Acceptance sees us for who we are, not who we aren’t, and takes on the job of helping the world be more accessible to autistic people.

It may sound like a lot. I get it. Acceptance asks for a paradigm shift, breaking away from the ableist trends of society at large, centring those voices deemed too frail to speak for themselves, and it involves hearing uncomfortable things and changing deeply-ingrained actions. It involves good and lovely people accepting their own internalised ableism, which itself isn’t their personal fault or something they asked for, and deconstructing their best intentions to reform them into something that fits the issues we face in reality. Acceptance asks these things of everyone, autistic people included, and it doesn’t promise that it’ll be easy.

Awareness is still not a bad thing, but ‘autism awareness’ is too general a term to be of much use. The autistic stories being told usually centre white, male, officially-diagnosed people, when they centre autistic people at all, and while I will never say those people are not valid, it is vital to look beyond that paradigm. Seek out the stories of autistic women/those designated female at birth; seek out the voices of autistic people of colour, who are so often ignored in the mass of autistic narratives out there and who mostly cannot access official diagnosis; seek out the stories of our queer and trans autistic siblings; seek out the stories of people who cannot access official diagnosis, and thus the care and support that usually require one; seek out stories that cover more than one of these categories. They are out there, and they deserve to be heard as much as, if not more than, this privileged white blogger.

Autism acceptance is not going to be achieved overnight, on the back of a single blog post, or even this year. There is too much to do to guarantee that. But we can and must centre autistic voices from all corners of the globe and every stratum of society. We need to look critically at the autism-related stories we do get, seeking out autistic voices where they are not being heard, and steering away from stories that centre non-autistic people. We need to examine our internalised prejudices, get over our surprise at their presence, work to deconstruct them, and do better. We need to widen our perceptions of what autism is, who “can” be autistic, and believe autistic people when they tell us their stories.

Awareness alone is not enough; acceptance is the key. Action is how we achieve it.

 

Greta Thunberg: Some Thoughts on Superpowers and Autistic Pride

So, if you haven’t yet heard, Greta Thunberg is TIME Magazine’s Person of the Year 2019.

Just in case you’ve been living under a rock for the last year, or alternatively using the internet for what it’s actually for (cat pictures and memes, obviously), she’s a 16-year-old girl from Sweden who has been on strike from school over the growing climate crisis for the last 16 months. In that time, she has gone from sitting outside the Swedish Parliament to addressing the UN, crossing the Atlantic by boat twice, and meeting everyone from Barack Obama to the Pope, as well as climate protesters across two continents. She is fierce, eloquent, uncompromising, principled, angry, determined, and many other things that society has decided don’t look good on women. And she is also autistic.

As much as I admire her work in defence of the planet from an irreversible climate disaster, her achievement today has struck on a very personal note for me, so much so that I haven’t even put my groceries away because I was in such a rush to get this written down.

At 16, I was an ordinary school kid. I got good grades, didn’t get in trouble, and was passionate about music. I got on well with my teachers (to the extent that I’m still in touch with more of them now than my schoolmates), I overworked myself, and had few friends, and even fewer on whom I could actually rely, it turned out. I was depressed and anxious, which we knew, and autistic, which we didn’t. My mum was batted away by the school when she tried to suggest that I was autistic; “Girls don’t get autism, Mrs Robinson, are you sure it’s not you who has the problem?”

At 16, Greta Thunberg is changing the world, harnessing her autistic superpowers [2] to make grown men listen, quake in their boots, and shrink away from meeting her. She has her own mental struggles, which she has mentioned in public, but she knows who she is. That is one of the things I admire about her most. She has a level of self-knowledge and understanding that many would kill for as adults.

I am aware a lot of this post comes from my bone-deep need to compare myself to other people, a terrible habit that I’ve been trying to break for as long as I can remember, but it also highlights several things for me.

Firstly, Greta was diagnosed autistic a the age of 11.[3] The world is still not very good at accepting autistic women and girls, although it has made marked improvements in the years since my diagnosis. What she shows is that diagnosis is far, far more than a label that you stick on the outside of someone. Rather, it is an understanding of yourself that allows you to be exactly who you are because it has a name, and a set of parameters to work with. Diagnosis, for those who can access it (which is another set of problems for another blog post) can be an absolute lifeline for people who are trying to work out why things are the way they are, why things don’t fit around them. It certainly was for me.

Secondly, Greta allows a kind of autism awareness that is very real, very human, and quite personal. Seeing someone going about their business and saving the world, but also reacting to sensory overload and anxiety is a strange experience. We are so used to polished speakers who brazen it out in front of huge crowds with showmanship and charisma; to see a young autistic woman doing the same job with the same power, but without the shiny veneer the neurotypical world demands of us is nothing short of inspiring. No one is kidding when they say that visibility of minorities is one of the most empowering things there is.

Lastly, she shows that it is really, really bloody hard to be an autistic woman in the public eye. The comments section on anything written by or about her are evidence of the hatred and mistrust of those who are different, those who will not conform to what society wants. Grown adults rip apart every word, every stim, every tiny moment of difference, so that even when she is backed by thousands of the best scientific minds in the world, the issue is still that she looked “disturbed” when she addressed a large group of people in New York one day after stepping off the sailing boat she’d been on for two weeks just to get to America, and her face twitched because of anxiety and overload.

There is still so much work to do to deconstruct ableism, to stop the constant stream of vilification, mockery, and abuse directed at Greta and others for raising their voices against injustice everywhere. Ableism is not just in the loud voices of the furious and the threatened. It is in the silence when we roll over and let people treat the disabled poorly. It’s the way that accessibility everywhere is often treated as an afterthought, for which disabled people are demanded to give over their labour for free just to get into the room. It is in the unseeing privilege of those who will vote for people who will make our lives less safe and less secure because “sacrifices must be made”.

For all this, though, Greta Thunberg makes me proud to be autistic. For years, I have carried the shame of being different, of not being able to accept myself fully. Seeing a young autistic woman taking on the world, daring powerful people to see things differently, and fighting with eloquence and passion gives me hope that maybe, just maybe, I have some superpowers worth using too. My pride won’t last long, I suspect; I’ll finish writing this, get my groceries sorted out, and before long find myself fighting my demons again. But just for now, in among all her other phenomenal achievements, I am going to be grateful to and for Greta Thunberg for lending another voice to the fight for autism acceptance.


Links/Further Reading

[1] Charlotte Alter, Suyin Haynes, and Justin Worland, ‘TIME Magazine Person of the Year 2019: Greta Thunberg’ https://time.com/person-of-the-year-2019-greta-thunberg/

[2] Greta Thunberg ‘School strike for climate – save the world by changing the rules’ at TEDx Stockholm, https://www.youtube.com/watch?v=EAmmUIEsN9A&t=1m46s

[3] Greta Thunberg, ‘Greta Thunberg responds to Asperger’s critics: ‘It’s a superpower” https://www.theguardian.com/environment/2019/sep/02/greta-thunberg-responds-to-aspergers-critics-its-a-superpower

Greta Thunberg – Wikipedia https://en.wikipedia.org/wiki/Greta_Thunberg

Lizzie Huxley-Jones, ‘Greta Thunberg is proud to have Asperger’s—so why do even her fans ignore it?’ https://www.prospectmagazine.co.uk/magazine/greta-thunberg-autism-aspergers-girls

Jack Monroe, ‘Go, Greta. Autism is my superpower too’ https://www.theguardian.com/society/2019/apr/27/jack-monroe-autism-is-my-superpower-like-greta-thunberg

Steve Silberman, ‘Greta Thunberg became a climate activist not in spite of her autism, but because of it’ https://www.vox.com/first-person/2019/5/6/18531551/greta-thunberg-autism-aspergers

Say the Word

I am disabled.

For many disabled people, including me, the words we use about ourselves and each other are really important. That’s pretty applicable to everyone, actually, but the word ‘disabled’ seems to have become disproportionately complicated. There’s an aversion to saying it out loud, with people tripping themselves up not to acknowledge what amounts to a fairly simple truth. While those who don’t want to say the word may think they’re being kinder to us, it ends up having the opposite effect, and comes over as patronising and euphemistic.

My relationship with the word is a complex one. I first encountered it in my own context when I went to my university’s Disability Advisory Service to access some mental health care. While the terminology was more a matter of convenience than anything else, what with it all being in one building, my overly literal (then undiagnosed) autistic brain started thinking about how the term might apply to me. I don’t remember any solid conclusions from that set of thoughts, but it did make me wonder where my mental health would have to get to in order to make me feel like I ‘qualified’ as disabled.

The game changed a couple of years later when I was diagnosed as autistic. Along with the many adjustments to my thinking that I had to work with, I was also grappling with the fact that the word ‘disabled’ suddenly applied to me officially. I can now freely acknowledge that I handled it badly, throwing the word around quite liberally to get people to leave me alone, or joking far too heartily and lightly to convince anyone I was really alright with it. I joked about ‘pulling the autism card’ a little too often, and while people were generous with their pity-laughs, it wasn’t my best show. I hadn’t fully grasped what being autistic meant to me, and thought it was just a new name for what I already knew about myself.

In the intervening years, I have learnt a huge amount about autism from my fellow autistic people, mostly on the internet, and began to acknowledge the problems I face with it. Terms like sensory overload, stimming, shutdown, meltdown, executive function/dysfunction, alexithymia, and others became part of both my vocabulary and my sense of myself. I also got diagnosed with chronic fatigue syndrome (CFS/ME), which added a physical level to my disabilities, along with my mental health.

In learning about all these things, I have come to see myself more and more as disabled. As paradoxical as I suspect that might sound to some, this is a really, really good thing. Being able to face my autistic and disabled identity head on means that I am not pretending anymore. I am not fighting what I am, which means I have more energy to work with it, and thus get more shit done.

Words like ‘challenged’ or ‘special’ or, horror of horrors, ‘differently abled’ make my skin crawl and my stomach turn over. When someone says “I don’t see you as disabled”, I immediately lose a bit of trust in them to see me as I am and treat me accordingly, because to ignore my disability is to ignore a fundamental part of me. If my disabilities gave me nothing but special skills and superpowers, maybe I could concede that the ‘differently abled’ camp had a point, but that’s simply not the case. Sensory overload is not a ‘different ability’; my non-speaking moments are not merely a ‘challenge’; my meltdowns aren’t ‘special’. These are features of my disability that I don’t enjoy, and no amount of positive attitude, mine or anyone else’s, will change that.

According to the Merriam-Webster online dictionary, the term ‘differently abled’ was coined in the early 1980s,¹ supposedly as a ‘more acceptable term than handicapped’.² It was chosen as a word that would be less offensive to disabled people, as well as viewing them in a more positive light,³ but moreover, it was chosen by abled people on our behalf and without our input (a depressingly common theme in most stories of disability). It seems to have been chosen largely for the comfort of non-disabled people, rather than the benefit of disabled people. ‘Disabled’ is not a dirty word, nor is it inherently good or bad. For many, if not most, of us, it’s just a fact. Some of us embrace that fact, some of us fight it, some of us work with it, and all are totally valid reactions. But in refusing to say the word out of some supposed deference to our feelings, what a lot of us hear is that disability is an inherently bad thing, that being disabled is awful, that it makes us worth less.

The paradox lies in the fact that in trying to honour our feelings and soften the blow of our lives and struggles, the term ‘differently abled’ does the opposite for many of us. It shows an unwillingness to listen to how we want to talk about ourselves, an arrogance in suggesting that there is a better term than the one we chose, that we don’t know how we want to refer to what is happening to us.

A caveat to all this is that some disabled people genuinely do wish to be referred to as by different terms, like ‘differently abled’ or ‘handicapped’ or ‘crip’. Reclaiming those terms is their right, and their right alone, and if they ask for those terms to be used, then of course decent thing to do is to honour that. Terminology for oppressed groups is always tricky, and there’s absolutely no one-size-fits-all approach. There will always be minorities within minorities who want to use a different frame of reference for themselves.

For my money, though, these points of terminology are vital, and ‘differently abled’ cannot die out quick enough from common usage. By refusing to look disability in the face and accept what it is and does, those who insist on using ‘differently abled’ as their default term for ableism are going against what disabled people largely want and need. I don’t want the positivity of people who don’t live my life superimposed over the reality I experience as a disabled person. All the well-meaning in the world does not alter that I both want and need to be seen as exactly what I am.

I am disabled.

Say the word.


References/Links

¹ Merriam-Webster Online Dictionary, ‘differently abled’, https://www.merriam-webster.com/dictionary/differently%20abled

²,³ The Phrase Finder, ‘differently abled’, https://www.phrases.org.uk/meanings/differently-abled.html

Noa Zulman, ‘Why we need to ditch “differently abled”‘, http://honisoit.com/2018/11/why-we-need-to-ditch-differently-abled/

 

Autism Awareness Day 2019

CW: ableism, ABA, Autism $peak$

I am aware of many things.

I am aware that every noise, smell, sound, light, and sensation hits me harder than it does you. I am aware that the world doesn’t care a jot about this when it chooses how bright to be, or how loud to be.

I am aware that there are people who spend a long, long time searching for the reason their child is the way they are rather than accepting that’s the way it is. I am aware that the struggle of Autism Parents TM is always going to be louder than the voices of their autistic children.

I am aware that most of my social situations are on borrowed time until such a point as I am deemed unacceptable and the limits of accessibility are found. I am aware of the trend that means I never keep a group of friends for long. I am aware that people’s assumptions on what I can and can’t do, regardless of what I tell them, are enough for them to exclude me from whatever they like. I am aware that I am not good enough at social signals, reading situations, noticing emotional nuances, or coping in a rigid world to be acceptable.

I am aware that I don’t look autistic. I am also aware that no one can really tell me what autistic looks like. Except possibly Rainman. Or Sherlock. Or Temple Grandin. I am aware that I am not good enough at maths, too good at eye contact, walk into too many social situations, and don’t flap my hands obviously enough of the time to look autistic. I am aware that you think not looking autistic is a compliment.

I am aware that my pain can look like anger, my silence like rudeness, my bluntness like cruelty or meanness. I am aware there is little I can do about these things, and that I rely on the kindness of my friends to understand me, ask me, talk to me, and see through their neurotypical assumptions.

I am aware that the largest autism awareness charity in the world only gives 1% of its money to actually helping autistic people. I aware that, while they have dropped the word “cure” from their mission statement, that is still what they want. I am aware that the only real way to cure my autism would have been to stop me being born at all. I am also aware that some people are OK with that, and with preventing future generations of autistic people from being born at all. I am aware that these people think that would be an improvement to the world.

I am aware that my employment prospects are really terrible for someone with a postgraduate education. I am aware that I possess a certain level of economic privilege that this merely angers and frustrates me, rather than being a direct risk to my quality of life.

I am aware that the struggles I have day-to-day inspire people enough to tell me they’re inspired, but don’t inspire them enough to change tiny things in their own corner that would make a massive difference.

I am aware that taking people literally is a risky business, but it’s also the best way I have to approach anything to begin with. I am aware that people forget this all the time.

I am aware that there are people who pray for my healing, who want me not to be autistic. I am aware that among both those who do and don’t pray, there are many who think that ABA is a good way to make their children more acceptable to the world.

I am aware that this world tells us all to “use our words” and doesn’t like it when spoken words aren’t available to some of us, whether on a temporary or permanent basis. I am aware that no one really knows what to do with me when I lose my ability to speak.

I am aware that in all of this, I am still one of the lucky ones. I have a level of security in my life that takes a lot of pressure off me. I have a few people who love and understand me, who realise their limitations and the limitations of the world, and who see me as more fully human than I can see myself. Those people manage to be interested in what fascinates me, rather than sending me into a corner. I have the ability to communicate in ways that the world finds acceptable, and I have words to write and put out.

I am aware that when today is over, many of you will be able to stop being aware of these things. I am aware that one can go 364 days in a row without noticing that life is hard for autistic people. I am aware that this is no one’s individual fault, but that individuals are what make the difference.

Am I aware enough yet?


Links (all correct as of 4/4/19)

Michelle Diament, 14/10/16 “Autism Speaks No Longer Seeking Cure”, https://www.disabilityscoop.com/2016/10/14/autism-speaks-no-longer-cure/22884/

Accalia Baronets, 26/8/2017, “Why I boycott Autism Speaks, and you should too”, https://medium.com/@MooniWolfKomoki/why-i-boycott-autism-speaks-and-you-should-too-84112244d797

The National Autistic Society, Employment Campaign, https://www.autism.org.uk/get-involved/tmi/employment.aspx

Amy Sequenzia, “My Thoughts on ABA”, https://awnnetwork.org/my-thoughts-on-aba/