Late to the Party

A few years ago, I wrote a post on what I called ‘amateur diagnosis’ as part of a series of posts I did for autism awareness week that year. At the time, I was quite proud of it, and I thought I had made some really good points on the subject, even choosing a really good name for the phenomenon. Then I spent the next few years hanging out with autistic people on the internet, and the need to rewrite that post became progressively more urgent. And now here we are at 1am, when I should be asleep, fixing that need.

I will get this out of the way now, for anyone who is getting (understandable) heebie jeebies from this introduction: I accept and affirm that self diagnosis for autism is valid (also for other things, as I understand it, but those things are less my bailiwick so I’m staying in my lane here). This is not a view I have always held comfortably, or indeed at all, and it is one I still have to work hard on in my own head for various reasons. It is a reasonable assumption that, in my own working out on the subject, I have hurt people whose autism is self-diagnosed. This post is partly an act of reparation for that.

When I was seeking a diagnosis, no one told me that self-diagnosis was even a thing, let alone a valid one by which I could say I was autistic whether or not a professional wrote a letter to say it. It was not a phrase I came across in any serious capacity for an alarmingly long time, and I can honestly say I was blinkered in my privilege and the general anti-self-diagnosis attitudes of the world in not realising and accepting that the way I thought was wrong.

For me, my (professional) diagnosis was a completely vital part of my being able to discover and accept who I am. I was privileged to be able to access it (the NHS waiting list where I was living at the time was closed, so my parents took me to a private clinic). Had I not had it, I can honestly say, hand on heart, that I would not consider myself autistic, to my own detriment and to the detriment of those for whom self-diagnosis is their best, most accessible, and sometimes only, option.

To realise how blinkered I was was, to say the least, sobering, and learning how to hold space in my thinking for both the fact that my professional diagnosis was the key to unlocking who I am and that self diagnosis is absolutely valid and true is an ongoing process with which, I confess, I do not have a 100% success rate yet.

Self-diagnosis, or perhaps semi-self-diagnosis during childhood, would have helped me learn who I was a lot sooner than I did. It is a source of great bitterness to me that no one told me I had this option to identify what was going on on my own, that I didn’t need a psychologist to tell me what I already knew. I could have understood myself and perhaps saved some of the mental health issues, the suicide attempts, the ongoing trauma of living in a social skin that wasn’t mine, and the lingering damage of not knowing what it was that made me feel so broken all the time.

It took me a long time to realise that my antipathy towards self diagnosis was a product of not having felt like I had access to it. Knowing that there was a means to my self-discovery that was literally right there, and that I could have reached out and taken it for myself. I do not begrudge having been diagnosed professionally, but I do begrudge the priority that professional diagnosis was given in my life by my parents, my teachers, my friends, my doctors, at the expense of naming what we had known to be true for so long.

It makes me angry on behalf of my fellow autistic people who are not some combination of white, male, and rich, who do not have advocates to help them raise their voices to get diagnosis and help, who live somewhere where there is no NHS to give them a free assessment (assuming one can get through the waiting list), who are not listened to by those with the power to hand out official diagnoses, whose needs are ignored by jobsworth bureaucrats who require a certain letter from a certain professional before they will hand out the help that is so obviously needed. That I am where I am is a quirk of birth and good fortune. It should not be this way. I do not think professional diagnosis has no value, of course, and nor do I think that self diagnosis gives us licence to ignore professionals entirely at our own whim.

Going forward, it is my job to keep working on these views of mine that are still quite young, not fully bedded-in, and still have some resistance from my previously-conditioned thinking. It is my job, and the job of all those with a professional diagnosis, to listen to those for whom that piece of paper is a luxury that is denied them, especially when it is denied for utterly arbitrary reasons. It is my job to validate my fellow autistic people, to de-emphasise professional diagnosis as The Only True Path, to relieve myself of my “need” to establish how they arrived at their conclusions on their own reality, to understand that it is none of my damned business anyway and that we are much better off when we fight ableism rather than each other.

I have not always done this job at all, let alone well, and I am still learning and gaining more understanding all the time. It is true that you often don’t know what you don’t know, and this is honestly something that I have had to learn and unlearn.

Self diagnosis is valid. To my self-diagnosed autistic pals: I see you, you are valid, you are awesome, and you are my people. I am sorry it took me so long to get to this conclusion.

Some thoughts on ‘normality’

“What even is normal anyway?”

I’ll get this over with right out of the gate: I loathe this question, and it takes everything I have not to roll my eyes at anyone who asks it in front of me. I don’t even manage it every time though my hit rate is improving. I understand where it comes from. At least, I think I do. The intention seems to be about trying to validate the ‘non-normal’, which is a noble one for sure. We’re all so different that ‘normal’ is robbed of all meaning.

Except it isn’t. I grant that humanity’s variety is infinite and huge. It’s mind-bogglingly cool, actually. But to say that that variety negates any useful concept of ‘normal’ is to blinker oneself to the impact of that word, and to claim the existence of a level of acceptance within society that simply isn’t there.

Because if you can ask that question “what’s normal anyway?” I can tell you haven’t felt what it is to be unspokenly abnormal. It’s not your fault, usually, that’s what societal ableism does for you. But I don’t think I’ve ever had to ask that question. I have always known I wasn’t normal, ever since I first went to school and my social circles started expanding. I couldn’t have pinned down why I felt that way (and even when Mum tried, she was knocked back), but I knew very clearly that I wasn’t like everyone else.

Throughout my schooling, everyone noticed I wasn’t normal. From the kids who were picked out for me by my teacher to be my friends because I couldn’t make them myself, to my dorm-mates on the school week away who teased me mercilessly because I answered maths questions correctly in my sleep, to the girls who made my life hell throughout secondary school, to my friends at sixth form, who tolerated me but teased me about playing the recorder well beyond my saying I’d had enough and just drifted away.

All these things were small, on one level, but the common thread was the feeling I had that there I was always just one step out with everyone. The moments I’ve mentioned were just some of the ones I can pinpoint, but the feeling of being slightly disconnected from everyone was constant. As I got older, I learned that I could bury it, style it out, play up being the quirky one, rein in my strangeness, whatever it took to keep things funny. I’d already learned that telling any of my close friends how I felt wasn’t going to get me anywhere – they would brush it off, tell me not to be so sensitive, that it was all in my head.

One of the hardest things to get used to in the seven and a half years since I got diagnosed is the realisation that it wasn’t in my head. That my first 21 years of thinking I was different, strange, and that my friends could see something odd in me were down to something that had a name, a real, tangible condition of my wiring. I wasn’t normal enough to be accepted as I was. The unidentified strangeness I had set me apart from the people I was hanging around with, separated me from them in ways I couldn’t see. They couldn’t see them either, but I think we all knew they were there.

So when people say “what’s normal anyway?” my answer is that it’s the thing you leave unquestioned because you fit in well enough. It’s the lack of feeling like everyone else is working on a wavelength that you can’t access. It’s the assumption you can make that the way you are will be accepted at least nine times out of ten. It’s a sign of privilege that you were normal enough in the ways that society has deemed to be important not to notice how ‘abnormality’ is treated.

We can accept humanity’s variety when it’s people who like books or sport or both or neither, die-hard Sibelius fans and obsessive Queen lovers, those who excel at art or science or writing or bricklaying, and those who kill succulents or grow prize dahlias or limp towards a small potato harvest each year. That’s just human variety, all those people are normal enough.

But when it comes to those of us who work in literal terms, who engage with social situations differently (if at all), who wear our interests on our sleeves and take them very personally? Believe me when I say we are not accepted. We who are pained by bright lights and the noises you love so much, we who cannot process what the person at the front of the room is saying if you’re whispering at the back (especially if we are the person at the front of the room), we who ask for adjustments so we can access the world. We are not normal. We are hit by this fact every day that we have to deal with these small actions, micro-aggressions that prioritise the neurotypical and/or able-bodied experience and subtly ostracise anyone who doesn’t fit that mould. So subtly that we spend decades of our lives wondering if it’s just us, and even when we’ve worked out that it is something real, we still have to convince ourselves and each other of that fact.

The next time you are tempted to ask what normal even is anyway, remember those of us who are not normal. Instead of questioning us when we say we are not normal, understand that your view of normality is a privileged one. You are seeing normality from the inside, which makes it hard for you to see at all and allows you to ask that question. But only by seeing it can it be acknowledged, and only by acknowledging it can it be taken apart. And it’s only if it’s taken apart that we stand a chance of actually accepting difference at all.

Well, I’m back? Or, why I haven’t written anything for a while…

So there’s something about blogging from a minority position where, if you don’t manage it right, you end up trying to do too much, putting too much pressure on it, and not actually writing anything. Which you may have already noticed looks an awful lot like why I’ve not actually written anything since April.

The pressure to represent, to put out good information about Your People, to write the next huge hit in autism blogging is enormous. Add to that a huge inferiority complex, the residual need to excel be that gifted and talented child (that you’ve actually not been for about a decade anyway), and a global pandemic that stole all my mental (and at times physical) energy, and I suppose a 3 1/2 month break from writing doesn’t look so ridiculous after all.

I’ve spent most of that time thinking I can’t write. Or that I don’t have anything important enough to write about. That you can’t just stream-of-consciousness your way to building a blog that’s literally about your own experience. That writing a blog is only valid if you can provide some massive insight that no one else has provided yet. Despite the fact that no one has written a book about my experiences yet so there is already some uniqueness literally built into the system.

My blogging notebook has ideas on grand series I was gonna do, lists of sources I was going to use, Important Ideas I was going to put my two cents in on, current issues that Urgently Needed My Voice (spoiler: they didn’t). I’d still like to write some of those things, and hopefully I will, though with perhaps a little more care than my list-making shows. But for the moment, what I actually want to do is write about my thoughts, my experiences, and act on the random afternoons where I’ve thought “I could blog about this” before the brainweasels took over and decided that what I wanted to write about wasn’t valid. On my own website. That I built for writing my stuff. Yes, I hear how that sounds.

The amusing thing about all this is that I wouldn’t let anyone else do themselves down in this way. I have given strangers on the internet more validation in a single comment than I’ve found for myself in 5+ years of attempting to blog. This is a double standard that won’t be news to a lot of other autistic people, and/or those who’ve had fun with their mental health, but somehow I am still constantly surprised by the level of dickhead my brain is willing and capable of being. It would be impressive if it also wasn’t a pain in the arse. The worst thing is I suspect that most folk reading this will have had no idea what I thought they were expecting from me. If I think about it, there probably aren’t many expectations at all, and in fact, there is evidence that no one (except me) has had a significant problem with what I’ve written so far anyway.

So, let’s try this again. Let’s try walking before we run, stop taking myself so damned seriously, understand that my tiny wee blog in a miniscule corner of the internet is unlikely to move mountains, and actually bloody write something. More than 3 posts a year would be a great start. I’ve no idea what the next one will be, but at least this counts as one of them.

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/

Diagnosis

After my last, slightly fluffy post about some of what it’s like to inhabit my brain, I’ve been sitting on this post for a while as a slightly drier, more factual, and hopefully more widely relevant foil to it. Autism is a huge subject for me for a few reasons — for a start, out of the 11 people in my immediate family on my mother’s side (up to grandparents), 5 of us are (or suspect themselves to be) on the autistic spectrum. Bearing in mind that the current figures show that 1.1% of the UK population is on the autistic spectrum (according to the National Autistic Society), you don’t need to be a mathematical genius to know that’s quite a lot. The research suggests that autism is genetic, to a degree, so it’s not so strange for the numbers to increase quite suddenly with us, but nonetheless, it makes quite the difference when you have to live with it!

My younger brother was the first one we really knew about, so to speak. He was diagnosed at 7 years old, and has proceeded to mix up the words “he’ll never do x…” with “game on” ever since, to the point where he is now the proud owner of lots of GCSEs, 3 A levels, and a degree. Being diagnosed at 7 did wonders for my brother, in terms of the support he got at school, college, and University. Being diagnosed at 21, for me, was perhaps a little less awesome. Being a girl, it was much, much harder for me or my mum to be believed about our suspicions  she started asking doctors and suchlike if autism might be a factor for me when I was around 6 years old, not dissimilar to when she started asking about my brother, who would have been around 4 at the time. He waited 3 years, I waited 15. It’s very difficult not to get really, really bitter about that fact, but my ever-logical brain at least has the ability to filter out the fact that it’s not his fault he got there first. The world seems to see autism as a basically male phenomenon, which when you consider the earliest research on the subject, is not surprising. The first research, by Leo Kanner and Hans Asperger, was done in the 1940s, and concentrated exclusively on small groups of boys, but it wasn’t until much later that autism became a more widely-researched subject, as Asperger’s work was in German and little-translated. It’s a very different ball game, being female and autistic, on the other hand, and it’s only now that research is beginning to catch up with the fact that there are probably lots more women with autism than previously thought.

When I was younger, I met a few girls with autism at my brother’s support group, and I remember thinking how similar they were to the boys, how obviously they fitted in with the group and with the dynamics going on. I assumed that this was how all girls with autism were, because that’s what autism was. I remember asking the first psychiatrist I ever met if I was autistic. I was 10, and he gave me a flat-out “no”, then and there. His medical opinion is not something I get to critique too much, in some senses — I asked him a question, he answered with his knowledge, in the best of faith. At the time, my mother and I were both seen as trying to tack me on to my brother’s diagnosis in a way, with sentences like “Mrs. R., just because one child has it, it doesn’t mean the other has to as well.” Attempts to deflect us off the idea of autism carried on, including a particularly inglorious moment when, on asking staff at my secondary school if they thought it was worth pursuing the idea, even if just to rule it out, there was a threat (albeit veiled) to go back to our family GP as if she were the one with the problem. When accusations like that start flying, the obvious move is to back off, of course, and I don’t blame her for that. I am angry that it had to happen that way, of course, and I am angry for my mother that her logical concern was swept aside as it was. She has never been one for hypochondria on either our behalves or her own, but her honest belief as a mother that there was something going on was shoved away as if it was her problem. Because, according to one teacher she spoke to, “girls don’t get autism”. But why don’t girls get autism? I mean, obviously we do, and the world is catching up to the idea, but why is it so hard to identify?

The answer lies in the fact that (shock horror), boys and girls operate differently. There are different issues that girls and boys face at various stages of life, and deal with differently because their brains are constructed differently. Tony Attwood wrote a fantastic article as an introduction to Safety Skills for Asperger Women by Liane Holliday Willey, which outlines much better than I can the differences in girls with autism compared to the largely male perception that exists currently. I’ve yet to do more than flick through the book itself, but the introduction, I can honestly say, changed my life. I can remember it very clearly: Mum had told me about the article, and she sent it all the way up the stairs by e-mail. Twenty minutes later, I tottered downstairs in tears. “Mummy, that’s me.”

This was a few months after I had to crash out of my third year at University in November 2012 due to mental health issues and stress (future blog post material, so I’ll keep this description brief!). On returning to my parents’ home, I got referred to my local adult mental health (AMH) service, which was, in short, a disaster. I had all sorts of potential labels thrown at me, and my suggestion of autism was binned almost before it had left my mouth. Because she was a Professional, and therefore Knew About These Things, I believed her, and tried to get on with life, with the result that Christmas was horrendous, and when the New Year came, my parents and I knew I needed to do something serious. In the end, our only option was to go private, and I for set up with an amazing, though sadly no longer practising, psychiatrist. He was the one who clocked that maybe an autism assessment wasn’t a totally stupid idea, and agreed that a definite no was better than getting noewhere. That was the 28th of February 2013, and he dictated the letter there and then to a clinic in London (again, private, as the NHS waiting list could have been up to two years for diagnosis) that would be able to sort me out. I had a pre-assessment in March with another psychiatrist to see if he thought we were barking up the right tree, and to also go through some of what it might mean to be diagnosed. On the 17th of April, I went in to see a psychologist, and complete my ADOS (Autism Diagnostic Observation Schedule) test.

The end product is that a week after I had this assessment, I got a letter through the door with the results. I was diagnosed with Atypical Autism, which means that although the psychologist was convinced I was on the spectrum, the scores I had from the test didn’t quite add up. The explanation for this was that because I had been suppressing myself so much for the entirety of my life, I was able to mask my symptoms. I had “acted normal” for too long to really count, numerically, but in the end, it didn’t matter. I had an answer.

So why is it important for me to write about this process? Why do I bother? Why did I bother finding out? For me, finding out gave me an answer as to why my brain works as it does, why I find some things difficult, what parts of myself I’ve been suppressing so as to “fit in”, and how I could be my truest self. I have been warned countless times not to let the diagnosis define me, and I admit, it was and remains a struggle I sometimes lose. But the truth is, in some ways, it does define me. It categorises the way my brain works, tells me that some expectations I have of myself aren’t realistic, allows me to direct myself better towards people, occasions, environments that aren’t going to send me round the bend. It tells me that how I feel, what I do, what I think, are different, but I’m still perfectly allowed to be myself. I am a square peg, that much is for sure, and I can now look for the square holes that will work, and start looking at whether the round holes in my life are still worth having (which they often are).

In a sense, this diagnosis does define me. I am autistic. I am different. I am me. My brain is constructed and wired this way. It may be a “label”, and I can completely understand some people’s aversion to sticking labels on people, but I prefer to think of it as a tiny lapel badge. It’s there, but largely unobtrusive. People can see it and ask, or not ask, or not see it, or have it pointed out, or know it’s there and carry on with their lives. But it’s mine. It’s my badge, it’s my label. And do you know what? I’m actually quite proud of it. As the mantra went around our house for my brother, “different is cool”.

Everything and Nothing

…or “Five Things I Wish I’d Known About Diagnosis Before I Started”.

I’ve had a few conversations with people over the last few months about being diagnosed with autism. Whether it’s people who suspect it in themselves and are doing some digging, people who accept they might be autistic but have no interest in finding out because they’re happy how they are, people who’ve had amateur diagnosis thrust upon them and not appreciated it, or just people asking me how it works out of curiosity. All this has led me to realise that there’s a lot that I wish I’d known about the diagnostic process (which I described here) before I started, like what it actually means to gain a new label and the effects of that on how I see myself.

No one really asked me much about how an autism diagnosis would affect me before I went for it, with the exception of the psychiatrist who did my pre-assessment. He asked me if I could think of any negative effects to being diagnosed, and went on to describe, in response to my blank look, the way people don’t always feel unmitigatedly positive about a diagnosis because of people’s reactions, employment prospects, relationships, and suchlike. From my position, mid-breakdown, stuck at home, and clamouring for answers about myself, I hadn’t considered that the diagnosis would be anything other than a good thing. For me, it’s worked out well, understanding more of who I am and why I work the way I do, but I can’t pretend it hasn’t come without its challenges as well, so I’ve tried to come up with a list of a few things I wish I’d known before I started. I’m not sure any of them would have changed my mind about whether I thought it was a good idea to seek a diagnosis (and it’s too late even if they would). Here goes…


1. Everything changes, and nothing changes

Being told that, in line with your suspicions of a decade or more of questioning and your Mother’s spidey-sense for such things, your brain isn’t made the way you’ve assumed it was for your entire life is a big f*cking deal. My rank of Captain Obvious is intact, well done me. But seriously, it’s massive, and it shook my world to its core. It explained a billion things about my life, my childhood, my school days, it made everything make sense, all the things you’d want from a diagnosis and more. The weird bit, though, was the bit where I realised that it actually changed nothing. Autism, whatever anti-vaxxers and the other assorted weirdos in this world will try to tell you, is basically inbuilt, a developmental condition. Nature/nurture arguments aside, I was always autistic, for all of the preceding 21 years of my life before anyone told me so. It might there on a genetic level, I have little but familial evidence (i.e. nothing scientific) to go on, but whatever else, it’s the way I’ve always been, I just didn’t have a name for it. I did change, despite the fact that I was always the same. I had to grapple with the fact that my world had been turned upside down by the knowledge of a fact that, to all intents and purposes, had always been there.

2. You will feel many, many things

Oh the feelings. All the sodding feelings. For something that only gives a name to the way things have always been, I felt much more strongly about my diagnosis than I thought I would. I started with relief, because I finally knew what was going on. Anger was a close follower, complete, boiling, hellfire anger over the way that things might have been if I’d known, and on my Mum’s behalf for the hell she went through. Confusion, as per point 1, was a big one too. Vindication for my Mum and for me, because we’d both been right. A boundless sense of optimism because I had found a way to be myself. More confusion as all these feelings piled in and had a good old tussle in my head as to which ones got to be experienced most. You get the idea. No one warned me just how important this thing would feel, and just how many different feelings would happen, and I underestimated it. Eventually, things settled out, but it sure was a bumpy ride for the first few months, and even now, nearly 3 years later, I’m still working things out, and get caught unawares by a new feeling, or an old feeling that’s not turned up for ages.

3. People’s reactions will be many and varied, and not all of them will be good

I told a large number of people about my diagnosis when it happened. I’m that sort of person, I tend to be open about things (in case you hadn’t guessed), and it was important to me that the people around me knew. I could have got away with telling far fewer people than I did, in hindsight, but that’s the side of the line I’ll always tend towards in any case. I had some great reactions, and some not so great. Lots of people who’d known me since I was a kid and who know my family were less than surprised. Not in the sense that they were saying “I told you so”, but more that they were glad that my questions had got the answer that lots of people, including me, had felt was so obvious. People who knew me less well were more varied. There were lots of blank looks, a few overreactions, a huge number of questions, and the growing realisation in my head about just how little people understood about autism.

I had one or two really poor reactions as well. The person with whom I was in a relationship at the time took it very hard. The situation is not without context, but some of what was said was extremely hurtful, and I still find it almost unforgivable nonetheless. I was accused of using autism as a crutch to explain everything bad I did, making a meal of it, and it was indicated to me that the idea of autistic children in the future (we were at a point in our relationship were such considerations weren’t that many years away) was unpalatable at best. Less overtly horrible, but still unhelpful, were the people who said that they didn’t believe in labelling people, and surely autism is just a label. Well, yes it is, but it’s also a ton more than that, and no one gets to tell me that “just a label” means I shouldn’t find value and worth in it. Labelling people is a difficult topic, I understand that, but this label is mine, and I will damned well wear it (more of that below).

Other people’s reactions shouldn’t put you off a diagnosis of any kind if you want to seek it, but they’re worth thinking about before you start, and you have to be prepared to grow a pretty thick skin sometimes.

4. Diagnosis is only any good if it does something – labels don’t inherently carry meaning

Labels are useful, sometimes. I think the best ones are when you choose a label that describes what’s going on, rather than choosing something and making the thing being labelled fit come what may. It’s the difference between saying “I am autistic so I will play into the assumptions, stereotypes, and statistical likelihoods” and saying “this is the way I am, and autism is the thing that best describes that”. It’s a subtle difference, but an important one, one that I didn’t appreciate or live out particularly effectively to begin with. As I learn more about what it means for me, I can make my label fit me better and better by the day, and I am feeling more and more like myself with its help. There are people in the world who like to amateur diagnose others with things. I do it a lot of the time with autism, but rarely talk to people about it unless they ask, because it’s a personal thing.

I know a fair few people who I reckon might get an autism diagnosis if they went and looked for one. Would that label help them? They are the only ones who know that, and the only thing I would ever tell them to do in that situation is to work out if it means anything. For me, looking for a diagnosis was a really important thing, and it’s meant a huge amount to the way I’ve grown in the last three years since I got it. It isn’t the label in and of itself that’s done that as much as the use of that label, and sticking it on anyone else doesn’t guarantee it would help them. Amateur diagnosis is fun, sometimes, but diagnosis is bugger all use unless the person being diagnosed will be able to use it and wants it. If they don’t, it’s not going to do anything useful.

5. Your diagnosis is yours, end of

Related to both points 3 and 4, this is a really important thing to me. I chose to seek a label, and I found it. I was in the middle of a serious and complete mental breakdown, desperate for answers as to why I felt so completely crap all the time. My diagnosis went some way to rationalising some of those feelings, helping me understand more about myself and my early life. My inability to make friends isn’t because I’m a worthless human being, it’s because my brain is built in a way that I can’t just do it. I get more tired than other people because the sensory sensitivity that goes with autism means that just existing in the world is knackering, before you get to the point of, y’know, actually doing anything. Those are just a couple of the things that my diagnosis did for me, but they won’t be the same for everyone, which is a subject my wee brother (also autistic) and I have endless fun with.


Diagnosis wasn’t a walk in the park by any means, and it’s not simple. The above is designed to show up some of the complexities involved, and I hope they’re of interest whether you’re looking for answers on your own or someone else’s behalf, nosey about how things work for me, interested, or whatever. Whatever else, I want to end on a good note.

You know what? I’m actually quite proud of being autistic. There’s not much about myself of which I’m proud, but I love the way my brain can work through facts really fast, add things up logically in ways other people can’t see, learn things really quickly, make people laugh by being straightforward and blunt, and talk people through the things that are happening to them rationally. Those are things I wouldn’t be able to do half as well if my brain were constructed differently, and I like knowing where they come from. Knowing what my brain’s like has meant that I can engage with it rather than fight it, and find these things that I like. They’re just about the only thing I actually like about myself, other than the fact that my eyes change colour on a daily basis and that I can make a bunch of small boys get to bed quickly by reciting Black Speech poetry at them. For all the complications of diagnosis, and all that I could have done with more warning as to just how much it would shake things up, finding out that I’m autistic was one of the best things I’ve done. If I could have my time again, I’d still choose to go for assessment, just better equipped so I wouldn’t have to improvise my way through. Knowledge is power. They’re not kidding.

AAW #1: Autism Awareness

Ok, so the plan was to write a blog post every day for Autism Awareness Week (AAW), which is being celebrated (though I query the use of that particular word) this week, from yesterday, the 2nd of April, which was also World Autism Awareness Day, to next Friday, the 8th. However, I didn’t get my crap together in time to write the first post, so I’ve decided to pick it up today, and put what I think I’d have put in yesterday’s post in this one instead, plus a bit extra. In fact, I’m glad I missed it, because I didn’t get to catch up on the second episode of The A Word until just now, and it’s got loads of stuff that ties into what I want to talk about. This is all by means of saying that my accidental imcompetence is being made up for by an excellent round of coincidences that will cover my arse quite nicely. Onwards…

Awareness is something of a magic word, really. Honestly, I think it’s sometimes a thinly veiled, invented synonym for “money”, but cynicism aside, it still remains an important word and a good thing to do. I am now “aware”of prostate cancer, breast cancer, blood cancers, disabilities, trans* issues, domestic violence, mental health, junior doctors, stillbirth, and a million other things that aren’t floating quite as close to the top of my head. I get it. Awareness is free, but conversely seems to get people more willing to give money, which is what the clever people working these things out need. Awareness seems to give people a warm and fuzzy feeling when they raise it, and sometimes when they receive it, and fair enough. I’m the last person to say we don’t need awareness, being in possession of two invisible problems, one of which was missed for the first 21 years of my life, on which I’m prepared to put my house (that I don’t yet own, but never mind) that it wouldn’t have been so if I were a boy.

So, feeling warm and fuzzy that we’ve raised awareness or had our awareness raised is not, and I repeat, for those at the back, not a bad thing. On the contrary, it is excellent that we know about things, that we can know who to give our money to to make the bad things go away for the good, ordinary human beings who are being mistreated, misdiagnosed, or simply just missed. It’s taken me a while, but now I feel I’ve covered my back enough to get to the heart of my problem with autism awareness. Here it is: we aren’t being made aware of the right things all the time. Or rather, you, the public, aren’t. My awareness is pretty much tied to my awareness of existing, so it’s not entirely fair to count a life lived as an autistic person (or not) against the awareness that’s being spread around, you get my drift.

This is where The A Word comes in. It’s a new drama series, based on an Israeli drama called Yellow Peppers, about a five-year-old boy who has autism. Or rather, it seems to me, about how his family lament the problems of autism without really looking at the kid himself all that much, peppered with various sexual dramas that make sure there’s enough for the scriptwriters to work with. Wow, that sounds a bit harsh when I write it like that. I don’t mean to be unfair. I heard about The A Word a few months ago, and was really excited that we were going to get a whole drama series about autism. Naïvely, perhaps, I thought it would tap into some of the contemporary ideas about autism, i.e. that it’s just a Thing that makes up certain people’s brains in certain ways, but it’s not something scary and horrible. I thought we were beyond that. I grant that my direct experience of autism is limited to one family, my own, but I read, I observe, I try to learn what I can, and it worries me a bit that this particular drama seems so focused on the fear and horror of the parents as to what’s going on with their child.

I don’t entirely know what the process of finding out what was going on with my brother was for my parents, but I don’t remember it being such a big deal, with which Mum agrees. He was different, sure, but he went to mainstream school and flourished, and he’s continued to do so in whatever he does in the intervening 18-or-so years. What I remember of the day he was finally diagnosed is going to town with my Dad and Sister while Mum was with my Brother, and being allowed to choose one book. I don’t remember arguments, or my parents trying to make my Brother anything other than who he was and is. I’ve checked with Mum, and for both her and Dad, the priority was making sure that they worked out how best to help my Brother, along with me and my Sister, to be the best version of himself he could be. In fact, Mum clearly remembers being the one to bring up the idea of there being something to look for, meeting with some resistance on the way. The result is three children who’ve grown up pretty much alright, with our differences from each other and the world simply being part of the deal. They’re proud of us and our achievements, none more than the others, and none less.

Compared to The A Word, this experience is poles apart. Similar words, like “oh, that’s just the way he is”, are used to explain away what’s going on, rather than serving , as they did for my parents, as a simple explanation and a tacit suggestion that anyone who doesn’t like it can, frankly, do one. “What if they’re wrong?” wasn’t a question for my parents – they cared about getting it right, and still do, but the hopeful tone that comes over in The A Word from Joe’s Mum is really quite painful to hear. The exchange at the end of the episode really hit home, where Joe’s Dad calls out his Mum on her feelings of shame and mourning that she’s clearly (at least to me) denying because she’s ashamed of them. Meta-feelings, they’re a Thing.

If you’re going to raise awareness, it’s often a big task. Making something invisible, unknown, and/or under-studied into an issue that people are aware of and can use to be better human beings towards each other isn’t something to do lightly, and everyone has to start somewhere. The internet is full of people calling out the fact that disabilities are vastly under-represented in the worlds of TV and film, and we’re getting somewhere on that. My biggest problem with The A Word, though, is that it spends a lot of time on the various sexual intrigues going on, and a lot of time on how the parents feel about their son being autistic (not that the word is even allowed to be spoken in their house), but not really that much time on how Joe himself feels. This narrative, of how the parents of autistic children struggle so much and it’s so hard for them, feeds, for me, into the same sort of thing that Autism Speaks (hereafter, A$) say about autism. It’s a tragedy, we’re lost, we’re broken, we need to be cured.

I could rant about A$ forever, about how they are a truly abhorrent organisation, how they’re spending more on eugenics-esque research to eradicate us from the population, how they’ve made videos full of lies and hate about autism to “raise awareness” of how horrible a condition it is, how they manage to appear on the side of the anti-vaxx movement even though Wakefield has been debunked so many times I’m surprised anyone still knows who he is. It gives me the Angers in a very big way, which is an improvement on the suicidal depression spells it used to induce even if it does take more energy. (I would normally give links to this sort of content, but I refuse to link to A$ material on here – it’s easy to find via Google, please feel free, but I will not have them getting clicks from links from this blog.)

The A Word seems to be playing into this idea – the awareness that Joe’s parents have is of how “awful” autism is, how limiting the diagnosis would be for him, how he’s just a normal 5-year-old, it’s not a big deal that he is the way he is, he can’t be autistic, what kind of life will he have.

Last time I checked, my existence wasn’t a tragedy, I’m not broken, and I’m not defective. It’s true that I’m not in the best place right now, and my life has had, and will have its challenges. Autism did not do that. Not being diagnosed, not understanding myself while I was growing up, realising that I’ve been depressed for 40% of my life because I didn’t fit was what did it. Those things are linked to autism, for sure, but they’re more closely linked to the fact that we need awareness of the fact that autism affects women too, we need research on the differences between men and women with autism, and we need to make sure that when we say we’re going to integrate people into the mainstream, we bloody well do it. Integration into schools is great, but it means that there will be more kids coming out of schools, going into Universities and out the other side, who still need support. Again, that’s another blog post (sitting in my drafts pile), but it speaks to the awareness we really need and don’t yet have.

The best awareness we can get, and I’m definitely including myself here, is by listening to what autistic people have to say for themselves. For my part, autism makes me who I am, and I am learning to be proud of it and myself. It makes things difficult, and I would never, ever want to minimise the effects that autism has for those families with members who are more profoundly disabled, whether physically or mentally, than anyone in my family with autism. Disability is a big deal, for sure, and I realise that what I’m talking about here in terms of autism is very much a “high-functioning” version (though be wary of talking about function levels to autistic people, we don’t all like it). But let’s be aware of the fact that autistic people are everywhere, and that we will need help to make the world less frightening and horrible. It doesn’t take much, a lot of the time, to help someone if you listen to what they need, and that works for non-autistic folks as well.

We have voices. We are not all horror stories, but often we’re not the amazing hero-stories you hear either. I’m not a hero for living as an autistic person, and my parents aren’t heroes for “coping” with me (well, not on account of that at any rate). I’m not giving out stickers for being autism-aware, I’m afraid, and I’m sorry if that disappoints you. To be honest, what would really help is if people stopped raising monoliths as to “what autistic people are like” and judging me against them, do away with your stereotypes as to what you think I’m like based on the label I told you I have, and just treat me as, well, me.

I need you to see that I’m different, for sure, I need you to understand that this is the way I’m made and that it alters who I am compared to who you might assume I was based on the fact that I’m an articulate, intelligent, outgoing Oxford graduate. But I need you to see that I am a human who is made this way, autism literally written into my DNA (probably), and that it affects everything about who I am and what I do. Listen to us when we say we’re not broken, we don’t want curing. We want to be seen, heard, understood, loved, cared for, and accepted just like any other human being. You might just have to try something different to make it happen for us than you might for someone else.

I’m going to publish something every day for Autism Awareness Week, so I’ll probably expand on some of these points a bit in those posts. Please ask questions if you have them. I’ve said a lot here, and lots of it’s a bit rambly, but it’s all stuff I’ve wanted to say for a long time. Until tomorrow, then.