Re-diagnosis: Starting Again

Content: professional diagnosis, self diagnosis, interaction with medical personnel

Writing this post in January, it feels like I should be throwing around some kind of Gregorian New Year greetings. I don’t really like that sort of thing very much, on the whole – I find this time of year really strange and difficult at the best of times. To put it mildly, this isn’t the best of times.

I hate the social pressure of the turning of the new Gregorian year, the intentions that all crash into each other on this one day and the sense of failure that usually starts creeping in when those intentions evaporate within a fortnight. But I am very much a fan of new starts, of setting out on new paths and adventures. Clean pages frighten and excite me, seeing the nothing from which something is about to grow, being there when the seed goes in the ground (literally or metaphorically, take your pick).

So it is with my autism. My official diagnosis, courtesy of a psychologist, happened in April 2013, nearly 8 years ago. It came on the back of 15 years of questioning by my mum and, at times, me, a huge mental breakdown, and the need to find some answers very quickly before something terrible happened. I didn’t manage to avoid all the terrible possibilities, but I did get my answers. Or so I thought.

On the one hand, I had a diagnosis for something I’d first identified when I was 10 years old written on a piece of paper I could brandish at those tasked with supporting me through the last bits of my degree. Useful, for sure, and for a long time I thought it was the be-all and end-all of my autistic status. But really, what more did I have? Most of the evidence that provided that piece of paper was things that my parents and I, along with half the rest of the people in my life, had already noticed. It was a formalisation of those observations put down in neutral, medical language, describing my life experiences as they were at the time. Reading the report, knowing what I do now, I find it mind-boggling how much is missing, how much I was masking, how many things I now do that I didn’t do then. Even accounting for the fact that I was, mentally, in a very, very depressed state, I do not recognise the person described in that report.

It is incredible to me that I was just given this diagnosis, got the letter in the post, and then was sent forth into the world with no ceremony or follow-up. My mum managed, with a lot of effort, to find someone to give me a post-diagnosis counselling session. This was great, but it was one appointment squeezed in because of a cancellation, and I remember almost nothing about it. As far as I was concerned, the professional diagnosis was the beginning and end of my autistic status. I did not know where to go to meet other autistic people, and I had no idea that an autistic community might even exist online. I felt almost as beached as I had before I knew I was autistic, only worse because the whole point of getting diagnosed had been to explain my feeling that way among neurotypicals.

Over the last year or two, I’ve been hanging out with increasingly more autistic people online, learning as I go, and realising that I knew almost nothing about being autistic when I was diagnosed. I’ve already written about rethinking my views about self diagnosis and where some of them came from, and I’m still embarrassed that it took me so long to come round. In the intervening months, I have begun to reconcile my diagnosis experience with the process of self diagnosis and to realise the gulf between the two. So much of self diagnosis comes out of community discussion and involvement, people coming together with their questions and coming away understanding themselves anew. The understanding I gained of myself with my professional diagnosis was worlds away from the deep understanding and security that a lot of my self-diagnosed pals have. Realising this unearthed a huge tranch of insecurity about myself and my identity as an autistic person.

Finding my people online after many, many false starts (not all Facebook groups are created equal, in this regard) has led to a process of re-diagnosing myself as autistic. My professional diagnosis was a piece of paper drawn up by a psychologist who, for all her kindness, qualifications, and expertise, clearly did not understand anything of the reality of being autistic. I have spent a lot of the last few years finding commonality with people online, and a few in person, about how my brain and body work, both (re)shaping my understanding of my autistic self and bringing me to the new realisation that I almost certainly have ADHD.

It feels a little self-indulgent to engage in this second process of diagnosis – I wonder to myself why one diagnosis is not enough, especially when it’s the one that is more widely perceived as valid and the fact that I have it at all is the product of, and confers on me, enormous privilege. But the more I learn about self diagnosis of autism, the more I realise that everyone who has been sold the idea of the professional diagnosis as the One True Way has been completely duped, including those who are lucky and privileged enough to have one.

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The Girl and the Gardener

It’s a beautiful summer day in the garden. At least, it’s beautiful if you’re just walking around, as opposed to hefting a spade, trying to get through the hard-packed earth and corral the dust of weeks without proper rain. The Gardener stops to swear (mostly) inwardly at yet another sow thistle they hadn’t spotted, grabbing a fork to dislodge the interloper. They don’t immediately see the young girl who has stopped in the shade of the enormous cedars to admire the view back across the lawn, sun-warmed stone glowing against verdant grass and a sky lifted straight out of a painting. It’s a view the Gardener knows well; it’s one of their favourites too.

The Girl stands still just long enough for the Gardener to notice, the spike-leaved, yellow-flowered foe relegated to the bucket on the ground along with the scraps of chickweed that fall victim to the hoe that they now wield. The Gardener’s pace slows a moment, lightly opening up the space for the kind of conversation that they have had with visitors time and time again, and then stops altogether when the Girl turns round and their eyes meet. A tiny jolt of familiarity flickers at the sight of the small, impish face that is all at odds with the slight tension it holds and the serious, solemn, grey-blue eyes. Eyes far too old for, what, a twelve-year-old?

“It’s a lovely view, isn’t it?” The Gardener knows the Girl will not notice the recovery as they roll out their standard opener in the absence of everything they want to say that they can’t say just yet. Perhaps ever.

The smaller face creases for a moment, its enjoyment of the view under unexpected scrutiny and the right answer to the question eluding them. “I like the trees. But there aren’t enough flowers really – my granny’s lawn is full of little ones and they’re really pretty. This is a bit boring.”

“Understandable. Between you and me, I agree. My own lawn has all sorts in it and it makes it so much the prettier”, The Gardener says with an attempt at a conspiratorial twinkle, feeling foolish as they realise they lack the years to pull it off.

There is the sort of silence in which the Gardener might usually take the cue to begin working again and letting the visitor go on with their day. But sometimes, the silence is not done yet, hanging like a humid day waiting to let the air coalesce into rain.

“Are you a gardener?”

“Yes, I am.”

“Do you do anything other than pull up weeds?”

A soft chuckle. The Gardener doesn’t really know how to answer. The technical answer is yes, but the Girl has struck on one of the great frustrations of the job, and tapped into the Gardener’s thoughts of just a minute ago. Hopefully not too many of the unrepeatable ones, they thought drily.

“Today, no. Other days, though, we do all sorts. We plant stuff in the beds you can see over there, we grow stuff in the glasshouse, cut hedges into strange shapes, it’s quite fun really.” As if this last will convince the Girl at this point; they know full well that time isn’t there yet.

“Is it hard work?”

“Yes, it is. But it’s worth it, don’t you think? When it all looks as lovely as this, it’s a really beautiful place to work. Do you think you’d like to do it?”

The involuntary quirk of mild disgust almost makes the Gardener laugh out loud with appreciation and familiarity. Of course, they mused, she doesn’t know yet. “No. I’m a musician. I like looking at gardens, but I want to play in orchestras and go all over the world.”

“That sounds really fun! I played music when I was a kid too, orchestras are the best aren’t they?” The Gardener always feels ridiculous and stilted talking to children, and this one in particular, trying to curb the overwhelming familiarity into something that can be exchanged over a flowerbed within the constraints of uniform and position.

The Girl’s whole face brightens into a radiant smile that catches the Gardener off-guard; they forgot that smile existed, had ever existed, and it pierced something painful in the recesses of their memory. 

“What did you play?”


“Me too! Who’s your favourite composer? I really like Tchaikovsky.”

“Tough one, that. Sibelius for me, I think – I loved Finlandia and the Karelia Suite, and I studied him at university.”

Here we go. Let’s see how this one plays out.

“University? Do you have to go to university to be a gardener?” The missing step of logic in the Girl’s head is written across her face, knowing that it doesn’t all quite add up for her yet. It will be a long time before it does.

“No, you don’t. I studied music at university, and then I realised that I wanted to be a gardener afterwards.” A hopelessly simplified story, of course, but truthful nonetheless.

A thoughtful, cheek-chewing pause. “I don’t want to do anything but music. Why did you give it up?”

This question has haunted the Gardener a long time, and they dread the moment when this little scrap of a human has to begin grappling with it. Everything she has ahead of her and doesn’t know, that the Gardener cannot tell her either for sake of cruelty or good sense. There are no shortcuts on this sort of thing. It doesn’t work like that. She doesn’t yet know she’s not a she, she doesn’t know that her lurking suspicions about herself are true, or that she’ll be fighting them for nearly a decade more before anyone tells her what’s going on. She has no idea the ways in which she will be hurt and recover, the strength she will develop out of need, and hone time and time again. The strength she already has, even if she is later surprised by its existence.

A question about music becomes a question about everything, as it always would for this child and for this adult. The Gardener feels every one of their 28 years twice, and is grateful for the hoe for something to lean on with the sheer burden of it. It is not a burden they can place on this wee girl. Life will do that for her.

“I don’t think I’ve given it up. But sometimes, you can do a thing too much.” Carefully, carefully. “The things we love don’t always work out the way we think they will. I found out I loved plants and being outside, and I do music for fun.” Was that alright? Light enough? Careful enough?

“I can’t imagine doing that. I want to do music for the rest of my life.” Her eyes are shining, eagerness brimming over and consuming her whole form, electric with excitement about a life she can’t even begin to imagine yet. The fact that she hasn’t changed her mind is good, in a way. It doesn’t happen now.

The Gardener laughs softly, but with a tinge of bitterness that they hope goes over the Girl’s head. “If you love it, you’ve got to go for it.” The only reason I am not damned for saying this is because I know it wouldn’t make a difference anyway.

A call comes across the lawn, the relaxed tone of a parent more concerned that their child is bothering people than where said child is. The Girl looks back and throws one last, impish smile over her shoulder as she remembers her manners long enough to say “Thank you! It was nice to meet you.”

The Gardener tries to reply, but their “you too” falls into the ever-increasing gap between them. Taking up the hoe once more, the Gardener ponders.

The little Girl has no idea who the Gardener is. Hat, sunglasses, and childish obliviousness to the idea that she might have seen her own future have hidden their identity. All for the best, of course. The dread of those oncoming years ripples through them again, the helplessness of not being able to warn their former self what is coming, the terrible knowledge of what will happen to this small, sun-drenched child in order to become the Gardener.

Still, the Gardener smiles. A smile that was once and is still impish, eyes still solemn, but somehow less so for having seen the solemnity in the Girl, and a sense of childish optimism bubbling up from a long-ago memory of hope and better times. For there is a certain joy in clearing sow thistles and chickweed, kicking up dust and breaking through hard pans of sun-baked soil that they have learned to love, and that the Girl has to look forward to one day.

The Gardener just hopes that it will be worth it.

This story came about on the back of my response to a tweet someone posted where they asked what we thought our twelve-year-old selves would say to our 2020 selves. The question grabbed me, and suddenly I had a draft of this story without really knowing how I got there. I am indebted to my friends Tom, Sol, and Jubal for their kind words and constructive feedback that allowed this story to make it out into the world. I’ve not tried writing fiction seriously for over a decade, but this was fun, so maybe I’ll do more? I don’t know.

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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, and rethink a lot of my opinions, became progressively more urgent.

I will get this out of the way right now, for anyone who is getting (understandable) heebie jeebies from this introduction: I accept and affirm that self diagnosis for autism is valid. 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. 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, and that stopped me from 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 have considered myself autistic, and might still not have done now. To realise how blinkered I’d been was, to say the least, sobering. 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 yet have a 100% success rate.

Self-diagnosis 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. 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 really hurts, even years later. 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, and my doctors, at the expense of naming what we had all guessed to be true for so long.

It makes me even more 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 and jobsworth bureaucrats who require those diagnoses before handing out the help that is so obviously needed. That I am where I am and could access a professional diagnosis at all 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 all professionals entirely at our own whim. But while a professional diagnosis is the preserve of a privileged minority, and while sexism and racism in the medical community run rampant as they do, there has to be another way for autistic people to come to understand themselves.

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 One True Path, to relieve myself of my “need” to establish how they arrived at their conclusions on their own reality. It is my job to understand that that is none of my damned business anyway and that we are much better off when we fight ableism rather than each other.

I’ll finish this with a word 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.

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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.

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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.

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Autism Awareness Day 2020: Awareness vs. Acceptance

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.

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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’

[2] Greta Thunberg ‘School strike for climate – save the world by changing the rules’ at TEDx Stockholm,

[3] Greta Thunberg, ‘Greta Thunberg responds to Asperger’s critics: ‘It’s a superpower”

Greta Thunberg – Wikipedia

Lizzie Huxley-Jones, ‘Greta Thunberg is proud to have Asperger’s—so why do even her fans ignore it?’

Jack Monroe, ‘Go, Greta. Autism is my superpower too’

Steve Silberman, ‘Greta Thunberg became a climate activist not in spite of her autism, but because of it’


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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.


¹ Merriam-Webster Online Dictionary, ‘differently abled’,

²,³ The Phrase Finder, ‘differently abled’,

Noa Zulman, ‘Why we need to ditch “differently abled”‘,

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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”,

Accalia Baronets, 26/8/2017, “Why I boycott Autism Speaks, and you should too”,

The National Autistic Society, Employment Campaign,

Amy Sequenzia, “My Thoughts on ABA”,


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”.