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/

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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”.

The D Word

Isn’t it just marvellous when you spend a whole week trying to find something vaguely light to write about, and then you give up because something better and more important turns up? If you were expecting something more fluffy this week, trust me, so was I, but like I say, this is more important and needs writing, like, now, before I forget why it’s a deal.

‘Disabled’ has been a big and interesting word for me for a while, but things really crystallised out because of a conversation I had a little while back with a new but already very good friend. She’s epileptic, and I feel this unfortunate necessity to point out, having mentioned it here, that how it affects her is her business, but that wasn’t in the least what we were talking about anyway. We were talking about the fact that she doesn’t like or identify with the word disabled for herself, but that in a conversation with someone about a disabled person’s railcard, in which the basic idea was “it’s a relatively small word to use for cheap rail travel so it’s a fair shout here”, they turned round to her and said “oh, but you are disabled”. Naturally outraged, my friend and I both promptly agreed that it’s terrible when you only work out the best responses to these things waaaay after the event. Twenty-twenty hindsight, my friends. Sometimes genuinely heartbreaking, mostly just really annoying when you realise the sheer level of scathing wit that you could release upon the world if only it could work retroactively.

When I was (very) small, ‘disabled’ meant ‘in a wheelchair’. Not totally untrue in some ways, I suppose, but equally, the sort of thing that once your age is above low single figures, you don’t have much excuse not to go with something slightly more subtle. My (not so) wee brother never had the D word applied to him too much, though the terribly patronising attitude from some around him of “oh he’s done so well to get through, y’know, despite everything” did it in more syllables. It wasn’t a word he wanted to use for himself, except in a few amazing circumstances that made me feel guilty for underestimating anything about him ever. Like the time he asked a cold caller for their CRB reference number and details of their safeguarding training because he was talking on behalf of a disabled adult, and got hung up on fairly swiftly. As he got older, the idea of disability, disabled students’ allowance, and all the various adjustments that can be made for people became more pervasive, and he considered the toss-up of the word versus the benefits a worthy one to make, though he was getting a bit more than just a railcard!

For me, the first idea that the word ‘disabled’ might ever belong in my life was a long time before my autism diagnosis. When my mental health difficulties meant that adjustments at University were a good idea, I got lumped in with the Disability Advisory Service. They are a marvellous bunch of people in Oxford, according to my experience, and are an excellent foil to some of the recent horror stories of disabled and mentally ill students being shafted by the system. It was a strange idea to me that anxiety and depression were something that belonged in the same building as the students who needed accommodation considerations for their wheelchairs, or whatever it might be. I understand that ‘disabled’ is a fairly easy catch-all term that sort of covers what needs covering and gets people through the door so the nuances can happen later, which I’ve often found they do. But it made me think about what my mental health looks like and what it means in a totally different way to how I had before. It had always been something to deal with, treat, sometimes explain, and ultimately accept. I was lucky for a long time in that it didn’t cause a problem (until it did, which is a blog post I keep promising but need to psych myself up to write, because it’s worth doing properly) beyond sometimes knocking me out for a few days. But a disability? Was it really not so different that they could have found some other term to apply to the same process and department that didn’t make me feel this way?

I know my view is something of an over-simplified one, here, and I know that the point of going to the DAS isn’t that being mentally ill somehow makes me disabled. I’m simply saying that the appearance of the word was a huge deal when it came sneaking in via the workings of my brain, about which, I’d to point out, I’d known for a long time before this. It’s a sticky word, disabled. Even worse, while my mental health is not a disability, it is difficult to shake, once you’ve seen it, the way you end up seeing the issues it presents. How is it not debilitating to simply not physically be able to get up when you know that there’s nothing wrong with your legs? Or to be unable to breathe properly for no readily apparent reason when you know your lungs could work if you just had the willpower?

I don’t choose to use the D word for my mental health. At least, I try not to, because I know if I start concentrating on it in that way, I’ll get stuck in a rut, and that’s no fun. However, being diagnosed with an actual neurological condition, high-functioning autism, has really shifted the goalposts, in that I now know there is a huge aspect of the way I am built that is incompatible with lots of the ways the world works. I can’t take a pill to sort this out, and talking therapy, while useful and a thing I’m in the process of sorting out, can only ever deal with the effects of what life is like, rather than fixing the cause, though don’t get me wrong, I certainly don’t want to be ‘cured’ of autism.

One of the hardest thing is that the diagnosis made me rewrite my rules of engagement with the world, and that lots of the things I had attributed to a bad day, or something that would go away when the depression and anxiety cooled off a bit, were actually fundamental to my brain and would never, ever go away. It’s a subtle difference – mental health difficulties rarely go away completely and forever, of course, but they can be treated and made manageable, fitted into their box so they don’t get in the way. My brain is built how it is built, though, and just as I can’t stop my pupils from contracting in the sun, or my hand snapping back from a hot cooker, I can’t stop myself getting sensorily overloaded in public. I can deal with the effects, get somewhere quieter, walk faster to get out, even run, but I can’t stop it happening. In some ways, it is disabling – there are things I can’t do, things I will probably never be able to do, and the inconvenient thing is that while this was always true, lots of the things I feel cut off from are all because of the same reason, which makes it feel like a bigger deal.

I’m not entirely sure what the point I’m trying to make here is, to be honest (though it’s refreshing not to be an academia anymore, where that sort of thing is almost literally a hanging offence). I think it’s that the word disabled has a lot of catching up to do, which is hardly an original point to be making, and that identifying or not with it is a very personal thing (again, no points for originality). My brother’s autism and mine are the same damned condition (in theory) and we feel vastly differently about it, but to look at us, I’d say we display it in different ways and to different extents because of the way it’s worked out for us. I don’t look ‘disabled’, and I’m often told I don’t look ‘autistic’ and never mind what the hell either of those two things even mean. I think what I’m trying to say is that life shouldn’t be about ‘passing off’ as normal as possible. Words should be used or adopted where appropriate and where wanted. Am I disabled? I don’t know. For the moment, I’m going with yes, because I haven’t entirely worked out how to be in the world as the person I know I am, but I’m hoping that once I am enabled in the world, and once I can work out how the hell to negotiate the fact that the planet I’m on is designed for brains different to mine, I suspect I won’t feel as stuffed as I do now.

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 #2: Integration

Post number two for Autism Awareness Week. If you missed the first one, I’m trying to write one a day for the whole week (minus the first day because I didn’t get my arse in gear), because frankly being autistic during AAW pretty much gives me carte blanche to rant about autism and stuff, right? Ok, maybe not quite that, but you get what I’m saying.

Today’s post sort of follows on from yesterday’s, and is mainly about how the world goes about integrating people with autism, particularly in schools, but also elsewhere. It’s a laudible thing that we’re no longer just separating all the “different” kids and packing them off elsewhere, for sure. My Brother was in the first school year of full integration, which meant that in our area, schools had to be willing to accept kids with special needs if they came. Obviously, for some children, this was never an option, but for kids like my Brother, it was brilliant. Without the integration move, he would probably have gone to a specialist school for autistic children, which we’re all pretty sure wouldn’t have been the right thing for him at all (though it is, without question, the best place for lots of autistic kids). As it is, he went through mainstream school just like me and my sister, came out with GCSEs and A levels just the same, and has a degree. There’s no question for us that it was a great thing that he’s been able to do this sort of thing, and all the family are unspeakably proud of him. There was at least one child in his year who came to the school on the same integration grounds as my Brother, but in the end it was decided that it was better for him to be in a more autism-tailored environment, and from the little I heard later on, he did very well there too. Integration has its limits, or rather, some kids have their limits (as opposed to limitations, which just sounds mean), and a mainstream environment falls outside them, and it’s good that that’s being recognised. One-size-fits-all, as anyone who’s tried to buy cheap tights with such a label will tell you, is bollocks, and usually doesn’t fit anyone.

However, for those who do go through the main stream, there is still a lot of one-size-fits-all mentality to get through. As someone who went through the main stream with a hidden neurodivergent thing going on, I can definitely vouch for its limitations, and I’m far from the first in line to do so. That said, I too have come out of school and University, just like my Brother, with GCSEs, A levels, and a degree. But the thing that really gets difficult is when the places that are doing the work towards integration don’t talk to each other, and recognise that they’re going to be passing stuff along to each other. The University were excellent at sorting out the special arrangements I needed to sit my exams, complete my work, access everything I needed to, but also have provisions made so that these things didn’t cripple me mentally (which, frankly, the whole degree experience did anyway, but that’s not their fault). However, these things were practical, and relatively easy to sort – I was having the same things as other people, just for different reasons, and in a different combination. The thing that my College, in particular, seemed to struggle with was the idea that I could present so well, be articulate, and not show what was going on in my head. It made it very hard for some of the higher-ups who dealt with my support to work out what was going on, because I was so well-adjusted in some ways, but utterly unable to cope in others.

This combination of factors is where I think the problem with integration lies. Universities are getting more and more students coming to them who might not have gone to mainstream schools under the old system, who are perfectly capable, academically, of accessing a University course, but need more adjustment than ever before. The gap between disabled students’ ability and their needs can be huge, and looking at how both me and my Brother fell into that gap, it seems that Universities have been somewhat caught on the back foot as to how to deal with the students they inherit.

This gap will get bigger, I’m pretty sure. As integration gets better, and more children are enabled to capitalise on their mental and intellectual capability without being hampered by limiting diagnoses, or schooling approaches that put them in environments that don’t allow them to be entirely who they are. Things would have been very different if my Brother had gone to an autistic school, I’m pretty sure, and I doubt he would have racked up the achievements he has. He’d have got different ones, for sure, and my parents would have been no more or less proud of him, but hypotheticals are something my A level history teacher warned me about, so let’s not go there.

After University, the gap is only set to get even bloody bigger. The hunt for jobs where autistic people can work effectively, dodge the various complicating factors we encounter that others may not, and be truly ourselves without having to conform to a damaging extent is just about less comfortable and risky than walking across a minefield without a metal detector. If we are able to get through school, college, and University, but then fall at the hurdle of getting a job afterwards, integration still has a way to go. Obviously, it can’t happen all at once, but there’s a lot of catching up to do before the rest of the world becomes as inclusive as schools have to be. The moves between school and university, university and life, are big enough to begin with, but when you are moving between two vastly different ideas of inclusivity, and from an environment where you are who you are without question but with encouragement and equal treatment to one where you’re just expected to muck in with everyone else without support, it’s no wonder that falling in the gaps is so easy to do.

Integration into the main stream is a good thing, like I said above, don’t get me wrong. But it’s not easy or simple, and there is still a long way to go after only 15 or so years of trying to get it right at all. The main stream goes through life, and if the acceptance and support that autistic people like me and my Brother, who don’t need huge amounts of “care” per se, and can function on our own as adults (for example, I live alone, and even do my own laundry when I get round to it) suddenly evaporates at the age of 21 when we leave University, we’re kind of buggered. I know there’s the school of thought that says “belt up, get on with it, we all have to do it too”. If you’re one of the people who’d say that, you’re entitled to your opinion, but I’m also entitled to ask you (politely, because I’m a polite person) to shove it. Transitions are notoriously hard for autistic people, but when we’ve been guided through them our whole lives because we’ve been given the support we need up to that point, the fact that we can’t suddenly magic our brains into being able to cope with not only the transition itself, but also the move from support to no support, isn’t actually that surprising.

I seem to have got a little angry there. I’m not sorry. The world is disabling to autistic people, and people with all sorts of other neurodivergent things going on, all of which I couldn’t possibly hope to name, but are equally worthy of integration, support, love, and help. The world is learning to work with us, and that’s awesome. People are learning to see us as people first, labels second, which is also amazing, and gives me hope. However, it’s not happening fast enough to catch up everything all in one go. That would be too much to ask, but it’s not too much to ask that being treated like equal human beings can continue out of the schools where we learnt to treat ourselves so. I was integrated without even knowing I needed it, and I wouldn’t be where I am without that. I was taught to value people, see who they are, walk in their shoes, make things easier for people where I can, even if it means a bit of inconvenience to me. Integration is for everyone, not just employers, universities, and schools. Realising that people have been integrated, rather than whitewashing over what makes them different, is the key. You can’t help my difference by ignoring it (I’m sure I’m quoting that from somewhere, please comment if you know where!).

AAW #3: Amateur Diagnosis

Post number three. I can totally do this. I actually started this post a while back, but got stuck, and this seemed like a really good time to come back to it. I’ve already dealt with my professional, “proper” autism diagnosis in a couple of other posts (here and here), but this time, I want to talk about amateur diagnosis, including self diagnosis, and I reckon some of the ideas are applicable beyond autism too, which is a nice wee bonus.

When I say amateur/self diagnosis, I don’t just mean the sort of thing you do when you have a symptom and you Google it, then find yourself, inexplicably, half an hour later in a writhing ball of panic because Google has diagnosed you with THE PLAGUE and you’re going to die. That’s more in the line of hypochondria, which is still problematic, but not what I’m talking about here. I’m talking about the thing nearly everyone I know does, where we use our experiences of <insert condition/illness here> to suggest that other people may have it.

This isn’t necessarily a bad thing. Asking someone if they’ve considered a possible explanation for a problem they’ve had can be hugely beneficial (when done right), and can sometimes put people on the right path for a diagnosis. Without amateur diagnosis, I’m not sure I’d have ever got to a professional one, so I absolutely accept it’s necessary to use observations and other people’s knowledge to get somewhere.

However, amateur diagnosis isn’t entirely a good thing, either. It takes sensitivity and care to introduce the idea of something without imposing it, and I’ve been on the receiving end of less helpful kinds of amateur diagnosis with all sorts of things. When I was 11, a friend at school asked me very directly if I thought I had autism, because I clearly had problems keeping friends and with social situations. It turns out she was right, of course, but the method of asking wasn’t the most sensitive or helpful, and it turned into a big thing in my head that I must be bad in some way for someone to have said this. I’m not saying 11-year-old logic (mine or anyone else’s) is flawless, far from it, and bearing in mind she was pointing out problems with my friendships at the time, it’s natural to assume that this friendship was caught up in all that too, which is all by way of saying it was complex. I wish I could tell her she was right in the end, even if the conversation itself wasn’t great at the time.

Another situation I know of was where someone was told by their (now former) partner that she clearly had autism and should get it checked out, and said partner refused to accept that she didn’t want to go there despite being told in no uncertain terms. This is, I think, the worst of amateur diagnosis, where someone not only tries to impose (rather than suggest) a label on someone without the due care or qualification to do so, but also refuses to accept that the person doesn’t want this label even if they might have the right to wear it. This really highlighted to me the importance of how we perceive ourselves when it comes to diagnoses, and what other people’s opinions have to do with that (to which the answer is “not that much”, in the main). Maybe the person who got amateur-diagnosed with autism would get a diagnosis if she went looking, maybe she wouldn’t. Any opinion I have on the matter (and I’m an opinionated person, so you can bet I’ve got one lurking somewhere) is absolutely irrelevant, and the same goes for anyone else’s opinion too. As I’ve said before, diagnosis is only worth anything if it means something for how you live your life, and if knowing what’s going on will make it easier or better for you to live the life you want to.

My Mum and I amateur diagnose people all the time. We claim (probably spuriously) to have what we call The Antennae, which allow us to detect autistic traits, in a similar way to the idea of gaydar. We’ve got a look that says “are your antennae going right now? ‘Cause mine are”, and we exchange it frequently. I’ve no idea if we’re right, or if the people who make our antennae flicker give a crap either way, and we certainly don’t go around telling them about it. But it’s a habit we have, and I suspect it’s not just us two. We all have our experiences of all sorts of conditions, illnesses, and whatever, and the power of the internet to educate us on whatever we want only makes our powers of amateur diagnosis seem more potent.

If I wanted, I could amateur-diagnose anyone with anything by saying “you have these symptoms, and this condition links all of them, so you have it” using information I pulled from Google and possibly my backside. Obviously, that’s utter crap. I have no medical qualifications, I have a music degree, and I have no authority whatsoever to impose a diagnosis on someone else. That said, my experiences of the things that have happened to me, particularly in terms of mental health and autism, do give me information that may help someone else find their own diagnosis if they need or want it. Mum’s experience of autism with my Brother and others, and her unerring belief that there was something about me that was being missed led to my seeking diagnosis, with her support all the way. In a way, she amateur-diagnosed me, not in a way that I expected to carry weight on its own, but in a way that gave me enough momentum to go forward and ask the question of professionals who could help me.

It’s a fine line to tread. It’s hard to see someone suffering or struggling with something that you recognise and they don’t, especially when they refuse to accept the idea. Mental health stigma has a lot to answer for, and that’s another treatise for another day, but it fights directly against the attempts of those who’ve struggled to help those they care about be aware of the potential thing that might be happening to them.

My own amateur diagnosis experience has been largely helpful, to be honest. After all, what are parental suspicions as to what might be going on with their children if not a form of amateur diagnosis? Even if it’s just “I think there’s a Thing, but I don’t know what it is”, it’s still the act of attempting to draw links between issues and factors and understanding that something might link them, whether or not the parents know the name of what they’re looking for. Without my parents’ and then my own suspicions about what was going on in my head, I would never have looked around, and never got to the point where I wanted to know the name of my Thing. That said, the search for what was going on wasn’t easy. The “amateur” bit of amateur diagnosis was rather disliked by the teachers at my secondary school, who tried to problematise my Mother rather than solving my problems. Conversely, as far as the psychologist was concerned, my Mum’s experiences were actually a really valuable part of the diagnostic process when talking about my early childhood, and in the form of the interview she did, they were what made the diagnosis secure in the psychologist’s mind.

I guess it comes down to what you want diagnosis to do. If you’re in the life you want, and have come to the realisation that your brain might be built in such a way as to make you autistic, it isn’t always that important to get a psychologist to corroborate that. There are at least two members of my family in this category, who understand themselves in terms that help, but haven’t necessarily “gone professional” for a diagnosis. They have worked out for themselves what they think is going on, and are living their lives as they want to, without the need for further labelling. I, on the other hand, wasn’t in the life I wanted; I was mid-breakdown, suicidal, in an abusive relationship, and desperate for answers. The diagnosis gave me answers that I needed, that I’d been looking for my entire life, and are helping me to live as I want to.

Experience does not give one the right to amateur-diagnose people. It gives you the responsibility to listen to someone, and if they say “I think this might be a Thing, what do you think?” to reply honestly, answer their questions, and do what you can to help. It gives you the knowledge to talk about autism with someone who thinks they’ve got traits of autism but isn’t interested in actually seeking a formal diagnosis, and to acknowledge where they are and understand that diagnosis is a personal thing that you don’t get to mess with on someone else’s behalf. It gives you the understanding to wonder about a person, and then put the amateur diagnosis away until such a time as they want to talk to you about it, which might well be never.

What it does give you the right to is a voice, and the confidence to answer questions on what’s happening to you, what’s gone before, what’s coming up ahead, and whatever people might want to ask. It also gives you the right to say “this is me, no matter what I choose to call the thing that makes me so, and even if I choose to call it nothing”, and to tell people to shove it if they don’t approve or accept your choice.

Amateur diagnosis should come with care instructions. “Handle with care. Spray from a sensible distance. Results may vary. Keep out of reach of bigots, overly opinionated people, and people who aren’t interested.” Maybe it does, and we just haven’t read the instructions.