AAW #6: Autism Acceptance

This is my last post as part of this project, I can’t believe it’s come round so fast! It’s also the post I’ve known I was going to finish with right from the start, and I think the most important of the lot. Awareness is one thing, and as I said in the first post, there’s nothing wrong with it whatsoever. However, stopping at awareness isn’t enough; you have to do something with that awareness for it to really mean much, otherwise it’s just another bit of knowledge you don’t use. For autism, I think one of the best and easiest next steps is acceptance, using whatever understanding you’ve gained to feel more comfortable with the idea of autism and not being afraid of getting it wrong.

There are those out there who actually refer to this week/month as Autism Acceptance Week/Month, which really speaks to the thing that we need. Unlike lots of awareness-raising things, it’s not that you necessarily need to be on the look out for symptoms, or getting tested automatically like for some cancers and things like that. It’s not that a simple blood test will allow you to be diagnosed faster, like with some cancers, or that it’s a dangerous thing to have or be around like infectious diseases.

Acceptance is about treading that fine line between treating people equally and accepting that you do need to treat people differently when there’s something going on. No, I’m not saying it’s easy or simple, and I certainly won’t claim perfection on my part. However, if someone tells you they have sensory issues to do with their autism, the acceptance bit is listening to them as to what might help, whether it’s something as small as choosing a different café because the light levels screw up their head less, or making alterations in a workspace to take account of the effects that sensory overload can have. I had a friend whose job included doing accessibility reports for places, and it’s encouraging that part of those reports did include discouraging harsh lights on the basis of sensory issues, which aren’t just restricted to autistic people. The world is getting there on realising how it can make things easier on a grand scale, albeit slowly.

The real acceptance, though, is from people. Individuals are the ones who can make the most difference to making life a bit easier. I’m so used to coping with the sensory stuff when out and about, it’s nice to be somewhere where it’s been considered, but it’s not essential. However, I’ve so far failed to get used to the way friendships seem to fizzle out around me because people don’t talk straight or don’t like it when I do. I still struggle to cope with the social anxiety when sensory stuff and having to talk to people when in combination, and the temptation is to just turn down social engagements full stop. I realise when I go back to University in September I’m going to have to bite the bullet, or end up being that reclusive classmate who never goes to stuff, and that’s my choice. However, what makes it a whole lot easier is not having to swallow or hide my anxiety and sensory overload in front of people. I am learning to “allow myself to be autistic” in public, whether that means I have to flap my hands when I’m stressed out (yes, “high-functioning” people stim too sometimes), get out and go somewhere else fast, or just have a hug and someone telling me it’s OK, that I’m doing alright, and no one’s judging me.

Naturally, my Mum is a pro at this, but she’s had a lot of practice, and it’s actually fairly straightforward, in a lot of ways. It involves listening to autistic people when they say what we need. Yeah, it’s that simple. We are gifted, very often, with the ability to talk very literally, and in a very straightforward, sometimes blunt, manner. If I say “I need to get out of here right now”, that’s honestly what I mean. If I say “the lights are really bright in here, but I’ll be alright for a bit”, it’s not a moment to panic, it’s a forewarning of the fact that my tolerance for that place isn’t limitless. If I say “my anxiety’s kicking up, I need to be outside for a moment”, that’s exactly what’s happening. If I say “please don’t touch me”, or “I can’t deal with this right now”, or “this is too much, please stop talking to me”, I’m not being rude, I’m telling you that I need space. It might seem unusual, and I might look rude while I’m saying it, but if I’m on the edge of meltdown or shutdown, it’s already taking everything I have to stay with it, and I honestly don’t have anything to spare.

Acceptance is not saying “I know about your autism, and I know better than you what needs to happen in this situation”. My Doctor might get to say that, a specialist psychologist might get to say it, and my psychiatric nurse definitely gets to say it, but no one else, not even my Mum. That might seem obvious, but I’ve had it said to me. In a complicated situation involving multiple disagreements, anonymous complaints, and a complete lack of understanding, I was told “the thing you will have to learn with your autism is…”. That would have been all very well if I didn’t already know the thing I was told I had to learn, and if the person hadn’t decided to condescplain (like mansplaining, but without the gender bit) to me about how my autism would work. It was hurtful, and made the autism (and therefore me) a scapegoat for all the problems that were happening at the time, removing my agency in the situation. Bearing in mind, also, that this was one of my peers, it’s doubly insulting that they chose to act high and mighty about autism without accepting their own culpability in the matter. I was not perfect, and nor would I have claimed to be then, or in fact, ever, but the attitude of overriding what I was saying about my needs is the very worst thing you can do with awareness of autism, I reckon.

Asking everyone else to be accepting of autism is one thing, but actually, the biggest thing I’ve had to do is accept autism in myself. I thought I was OK with it for a long time, particularly in the early months after the diagnosis. I was very (too?) open about it with literally everyone, and I probably became a bit of a bore on the subject (she says having churned out over 11,000 words on the subject in a week, and with no hint of irony). It took me years to realise that I was actually compensating for my own fears and the hurt that being undiagnosed had caused me. I railed against the man who said he didn’t want “children like that” (he was my fiancé at the time) and proudly declared how much I would love any autistic child I had.

Then, some months ago, it crashed in. I hated autism in myself. I hated it, and I hated myself for being autistic. I realised that I had been over-compensating for my autism in conversation, covering myself so that people wouldn’t find out my biggest secret, that I hated the thing that meant my brain was built that way. I realised that I didn’t want autistic children, not because of them being autistic, but because I couldn’t have had a child with a condition I hated so much in myself and not ended up projecting that towards them in some way, and that would be an intolerable thing to do to a child.

That was a long while ago, now, and I’ve been working on how to accept my autism as the defining factor it is on my brain and my life. I’m learning that it wasn’t my fault that nearly all my friendships over my life haven’t lasted, and were often a complete sham at the time too. It wasn’t my fault that I didn’t fit in, and there wasn’t much I could have done. I’m getting there, accepting who I am, finding people who I can trust enough to let them see my true self, and I’m being pleasantly surprised all the time at just how brilliant people can be over this sort of thing. I’m about to move somewhere new, and for the first time, I’m confident that I can be myself from the off, rather than hiding behind the confident front that I’m far too good at putting up. I’ve met some of the people I’ll be hanging out with already (hurrah for the folk world!), and found myself instantly accepted and, I daresay, even liked. I am more in touch with my proper self than at any other point in my life, and I have learnt that actually, autism might just be one of the best things about my brain. It gives me logic, intelligence, the obsessive tendency to pursue a single subject for a long time (which, as an academic, is often no bad thing), the ability to process facts fast, and the years of practice at reading people and situations that makes me insightful and sensitive.

Part of the reason I hated autism so much in myself was because of the rhetoric of organisations like Autism Speaks, telling the world that autism is a tragedy that needs to be cured and eradicated. It’s taken me a long time to stand up and say “actually, sod off, I don’t want a cure for being myself”, and to embrace the fact that my brain works this way rather than fighting it and trying to be normal. I had forgotten a vital thing that someone said to me during my diagnostic process. “You can be normal. You can fit in. But you will have to cut off bits of your brain to do it, restricting your natural tendencies, and it will involve sacrifices. It’s your choice, but you have to decide whether it’s worth it. You can’t be both.”

For a long time, I thought it would be worth it to fit in. I would put the effort in in public, often collapsing when I got home, in total sensory overload and unable to function. Then I realised that, actually, it’s alright to be me, and it takes far less effort than trying to be a neurotypical version of myself. I am sure that those who’ve known me over this process will have seen the change even if they didn’t register it, but I feel myself growing more confident in my autistic self all the time. I would never have dared do these blog posts this time last year, that much is for damned sure, and it still does feel a bit scary baring this much about autism and me in one go. However, I’m glad I’ve done it now. I like speaking up about autism, and the feedback I’ve had has been unanimously good and encouraging, which is even better.

It is easier to be myself in a world that doesn’t treat my self like an oddity. I am very much like other humans in a lot of ways, and in my case, I like to think my differences aren’t huge, though they are much more pronounced for some, including those who are more profoundly disabled by their autism. I want to be loved, accepted, heard, understood, listened to, and to feel safe in the world. As I said in the first post, it might just take a different approach.

That’s the end of my Autism Awareness Week 2016 series. Thank you so much to everyone who’s followed along and read these, or caught up later on. This is just a tiny part of the experience of autistic people at large, but it’s all my experience, and I understand from some of the comments that there’s plenty in there that people didn’t know previously, which makes my inner teacher go all warm and fuzzy. Yeah, I’m raising awareness, but we’re at the point where we know enough, mostly, to move on to the next bit, which is acceptance. That’s the bit we need to carry out of this week and into life in general.

Thanks for reading, and I’ll be back soon with, mercifully, something other than autism for a while!

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AAW #5: Women

Blimey, only one post left after this one! Thanks to everyone who’s been keeping up with these over the week, it’s been really heartening to have the support behind me to keep writing. This is probably one of the biggest issues with my autism, and it’s also probably one of the biggest single areas of research that really needs work when it comes to autism in general.

Being female doesn’t mean that much to me, in general. I’ve never quite understood why lots of people get so hung up on it – I can see with people whose bodies and identities don’t match up why it’s a thing, absolutely, and I can appreciate that it’s an issue for people, but it’s never been something I’ve felt very able to join in on. I find myself arguing against misogyny more and more as time goes on, and I suppose I fall under the definition of feminist, but I’ve never found it a massively useful term, I tend to go with fighting bullshit where I can and not labelling it. These are my ways, and I have no problem with other people’s being different, but that’s just the way it is. Being a woman had little to no bearing on how I thought of myself for a very long time. Then I got diagnosed with autism.

There are a number of estimates about the diagnostic rates of autistic women vs. autistic men, and even more about the actual numbers of autistic women vs. autistic men. The one thing all these estimates agree on is that vastly more men than women are diagnosed with autism, and that there are probably still more men than women with autism, but that women are being seriously underdiagnosed. It’s not surprising, really, when you look at it – the original case studies that Leo Kanner and Hans Asperger used were predominantly male, and ever since then, the emphasis on men in discussions of autistic people has remained disproportionate. The research is beginning to catch up, but there’s a long way to go, and in the mean time, the problems can be huge for women who go undiagnosed.

For me, I spent my life not fitting in, and feeling constantly at odds with the world around me. I made friends with people who then bullied me, only to turn around and say we were friends really, thus dooming me to a number of long and torturous relationships right up to secondary school. I went to an all girls’ secondary school, where the pressure to fit in and be like everyone else came from even my closest friends, to the point where I could tell that at least one friend in particular was embarrassed by me. Orchestra and Wind Band were fun, for sure, and the musical aspect was a great leveller between everyone there, but it was still problematic, and I still felt there was always something I was missing that everyone else had. I have constantly put myself under so much pressure that I ended up having a full scale mental breakdown in my third year at University, which was what eventually led to my diagnosis. My entire life, I felt like I was different from everyone else, that I didn’t fit in, and I couldn’t even identify why.

I first asked a psychiatrist if I had autism when I was 10. He gave me a pretty flat out no. I had depression, anxiety, and was suicidal when I was a teenager, but that was just teenage angst, right? I had huge problems with friendships and bullying at secondary school, but again, girls are harsh when people don’t fit in, maybe just try harder. The heavy stuff came later, during the breakdown, when terms like bipolar II and borderline personality disorder started being thrown around, only to be withdrawn a week later, and for me to be told that I had to stop being so inward, and that the mental breakdown would heal itself if I went out and maybe did some volunteering (it didn’t – I was nearly hospitalised a few weeks later). Even after the diagnosis, someone suggested a personality disorder again during my latest spate of mental health problems. The inability for health professionals to see autism in women for what it really is is frightening, and the damage it causes is massive. My care coordinator has been great at trying to undo some of the nonsense with mis-applied diagnostic labels, explaining that my depression isn’t something bigger and scarier than I think, it’s just that emotional crisis affects me completely differently because I am autistic. For all his efforts, though, these things have been said, and still are said to women who might find a more accurate answer that covers more of their questions if they had an autism diagnosis.

Tony Attwood does a much better job than me explaining what autism looks like in women, but the main reason it gets missed so much, apart from the historical emphasis on men, is the tendency and ability to assimilate, cover, and apologise for differences. I “passed” for normal my entire life by doing that. Woo. Go me. I “passed” so well I might not have been diagnosed, because I masked my true self so well even in my assessment that the scores I got didn’t add up to put me above the autistic spectrum cut-off point. It was only because of what my Mum said in the interview she did about my early life and development that they concluded that I had “atypical autism”, which basically means “screw the numbers, this is what’s going on”. The diagnostic manual changed a month later, so that original diagnosis isn’t used, but I am referred to as have an Autistic Spectrum Disorder. Whatever, I’m autistic, the jargon doesn’t get me very far anyway, and if I focus on what was said by a psychologist 3 years ago more than what’s going on in my life now, I could quite validly be accused of missing the point.

I am honestly prepared to bet anything you like (apart from musical instruments) that these things wouldn’t have happened if I was a boy. My Brother was diagnosed at 7. Mum started asking questions about us both around the same time, and yet because I am female and “girls don’t get autism” (honestly a quote from someone my Mum spoke to about this), it took me 14 years longer to be diagnosed. I was bitter towards my Brother about this for a while, I admit, and I’m not proud of it because it’s not his fault. We’ve smoothed it over now in any case, but the discrepancy still exists.

Really, as Tony Attwood says in the article linked above, the basic autistic tendencies are roughly the same between boys and girls, they just manifest themselves very differently. I was just as obsessive about Tolkien as a boy on the spectrum might have been, but it was marked as an interest in fantasy literature and that’s just fine when you’re a girl. I liked wearing comfy clothes with pockets and having short hair, but that just made me a tomboy. I didn’t fit in with my friends, but I wasn’t trying hard enough. These and so many other things that we now recognise as signs were completely missed, meaning that decades of support I could have had to make life easier for me weren’t accessible to me. The worst bit of it is that I’m not the only one. I know people who went through similar mental struggles to me and have come out the other side, finding their autism diagnosis, whether self-applied or professionally sought, many, many years later than I did. Many still suffer from depression as a result, and I know, certainly, that for me, it’s going to be a long time before I’ve patched up everything in my own head about this.

The research is happening now. There are books about autistic women, often by autistic women, and there are more of us talking about it by the day: parents who’ve found their diagnosis via their child’s, people like me who had a crisis early in their adult life and needed answers, younger girls whose parents finally realise that this might, after all, be a viable explanation for whatever problem is going on.

Even though autistic people are so under-represented in the media at large, there is at least one autistic woman on TV that I know of. Saga Norén in the Nordic crime noir drama The Bridge is an amazing portrait of an autistic woman, and really resonated with me. I can’t tell you how amazing it felt to be legitimised by seeing someone so like me on the TV, having not really realised these characters could exist. I don’t tend to cry at TV programs at all, I’m just not one of those people who do, but when Saga went into a fullscale meltdown and emotional collapse at the end of the most recent series, it hit me hard enough that I did. I recognised her struggle, her breaking point, the moment where she didn’t know whether living was worth it. The fact that the writers gave her someone to cling to in that moment as well was the most heartbreaking bit. Someone who understands her, cares about her, and gets that she needs what anyone needs in a moment of crisis: just someone to be there. Saga is my TV hero, right down to her amazing boots, and the fact that she exists on TV at all is completely brilliant too.

We are becoming more visible, but I’ve still lost count of the number of times someone has cast shade towards my diagnosis because they only thought it affected boys. It doesn’t, and it’s getting towards being as behind-the-times to suggest otherwise as it is to suggest that vaccines cause autism in the first place. We as a world need to understand a bit more about autism to catch up with the number of women who are autistic, so that we don’t blink when they identify themselves where we might not with a man. We need to understand that autism looks different in women, but that it is not less just because it’s the one we know less about, and it’s still the same condition and needs the same considerations you’d make towards anyone else with autism. “Looking normal” isn’t altogether indicative of there being no neurodivergence in there. It’s about time we learnt that and did something about it.

The last post in my Autism Awareness Week series will go up some time tomorrow, and then I promise I’ll stop talking about it *all* the damn time ;)

 

AAW #4: Functioning

I hope you’ve enjoyed the first few posts in this wee project of mine – the feedback from people has been awesome, and I’m really glad it’s not just me typing into thin air for no one’s gratification but my own! If you’ve got comments, please don’t be shy, on this one or any other, conversations are good, especially on this sort of thing. I know there are more opinions than mine, and it’s really interesting and useful to hear them – the whole point of this is to fill the knowledge vacuum around autism, including the bit of it that’s in my head, so as long as you keep it clean, anything goes.

Tonight’s post (because I failed to get my arse in gear today, again) is a weird one for me, because it encompasses a change I only just realised I need to make in the way I refer to autism, both my own and, more importantly, everyone else’s. The application of “function” labels seemed to me to be an important thing, and it was definitely a part of my diagnostic process. I was labelled “high functioning”, which basically means that I can successfully human on my own on most levels. “Low functioning” supposedly covers things like whether someone can speak, has movement issues, can take care of their own needs, and things like that. I didn’t question them until the last couple of months, but once I read the first couple of articles about why this wasn’t such a good idea, I realised I’d been on the wrong side of this one without realising for ages. If I’ve ever been in a conversation with anyone reading this and have put my foot in it, now’s the point where I’m apologising for being an idiot.

I’ve had my own problems with the idea of “high functioning” in any case, just not big enough ones to make me revise my use of the term for myself (I have too high a tolerance for things that inconvenience me). I realise that I share this with a lot of other people who’ve been labelled so. The issue is that “high functioning” basically means that we are “passing” for normal enough that people don’t register that we are still struggling. Comparing struggles between people is as pointless as saying “my headache’s worse than yours”, to my mind, but it’s still fair to observe that if someone is not observing the fact that you might need some extra support, you have more to struggle over than someone who has everything they need. I’ve also heard people use “high functioning” as a compliment, which is kinda crazy when you think about the flipside, i.e. that “low functioning” must be a bad thing, and avoided where you can (which is nowhere, if you’re already there). If what you mean by “high functioning” is that you can’t tell that I’m autistic, fair enough, but cut the crap and say so rather than cloaking it in a non-statement that shows you really don’t know what you’re talking about.

My problems with “high functioning” are thus. What is “high functioning” about being able to cope with house viewings when booked in advance, but almost passing out twice in front of a viewings assistant because they turned up unannounced? What is “high functioning” about losing the ability to speak temporarily because someone asked you too many questions in a row? What is “high functioning” about the fact that if I have a routine and then break it, I can’t function? What is “high functioning” when I have to lie in a darkened room for an entire day because the feel of sunlight on my back when I walked into my kitchen first thing was too overwhelming?

The obvious answer to all those questions is “nothing”, clearly. My levels of function vary hugely according to my situation. Give me a situation where I’m in control, I have my head together, my mental health isn’t screwing me up, the sensory input is within my tolerable limits, and people know and understand me, and we’re cooking. Compromise one or more of those things, and my ability to function as I feel I should decreases. Someone says they’ll e-mail, or be involved in something, and doesn’t come back in well over a week despite me saying it needs to happen can set me back really badly. I have to be reminded that I’ve done all I can in making it clear how quickly this thing needs to be done, and asking the other person to help me out, and even then, like today, I’ll spend a lot of time banging my head on the desk (not literally) over it because the Thing isn’t working as it ought.

The sensory issues that often come with autism are huge, for me, too. There’s way more to write about it than I can put in this one little post, and it really deserves a post of its own, but it also forms a huge part of the idea of functioning for me, so it’s going in here for now. It’s also one of the hardest things to try and explain to people, because the idea of experiencing senses in any other way than the way you’ve got for yourself is really, really hard. Imagine being blind, and trying to describe the colour blue, or deaf and describe what music sounds like. Imagine having to decide whether to go shopping because you don’t know if the light will feel too bright today, or the feeling of being totally overwhelmed because one person is whispering on the other side of the room while you’re trying to talk. Some things can be helped, like that last example, but trying to get people to understand that you really need this to happen is a nightmare. I was in charge of running rehearsals for a music group until this time last year, and I tried to explain at the beginning that I really needed people to not talk while I was talking. Needless to say, a bunch of students didn’t take this entirely on board, so I kept explaining, and asking the rest of the committee for back up. Their responses were often on the lines of “you have to expect people to chat”, and “it’s not a big deal, they’re here to be sociable”, and “you’re asking too much”. If I had been a person in a wheelchair in front of a set of steps, I would not have been asked to walk up them. Why, then, when my disability can set me back in a certain situation, is it considered OK for people to negate the need I have? I understand it’s hard for a group of friends not to talk when they’re together, but it’s also humiliating for me when I’m supposedly in charge and completely lose my thread because someone won’t stop whispering.

I am too “high functioning” for people to think they need to make alterations to anything, a lot of the time. Mostly, I can suck it up – the room where my Morris side practises has horrible lighting that is really taxing on my eyes and brain, but that’s the way it is, it just means I’m twice as tired when I get home. You can’t get people in town to shut up when they’re out for a nice bit of “retail therapy” (another concept that’s totally lost on me), so I put my headphones in, choose a nice, soothing audiobook, often Harry Potter because Stephen Fry, and make the trip as short as humanly possible. However, when I do ask for things, I don’t think people realise that I’ve already had to make a huge number of concessions on my side because asking the world to help me out isn’t an option. I’m still learning what I need, what works for me, and just what sensory issues mean in my life. My levels of function can’t be made into a single idea of “high” or “low” function, and it’s insulting to those in the “low” function camp who are given a label that implies they are somehow less than me because there are some things they can’t do. There’s no nuance in there for the kid who has an amazing brain, but doesn’t speak and has some physical issues they need help with. Once they can type, say, or sign, or find their way of communicating whatever it may be, does that make them higher or lower functioning?

The point of asking that question is to show that there isn’t an answer. I don’t know what the answer is to avoiding generalisations about function, and I’ve got a lot to learn on the whole subject in general, but I am in the process of modifying my speech so I don’t talk about function in that way. My Brother and I function in different ways (he would have been described as “lower functioning” than me, which is a stupid phrase – put the two of us in an industrial chemistry lab and then tell me who’s functioning better), and I can name what they are. I’m not going to on here, because he’s a fully grown adult (as much as I hate to admit it) and it’s not my place to talk about his difficulties, but suffice to say that while we both have the same label, what it means to the two of us are different things.

What most of the people who know me see is my “high functioning” self. The self that can hold conversation, do eye contact, be articulate, funny, witty, and generally pass off as a vivacious, intelligent young woman. My “low functioning” self is a different kettle of fish. I don’t very often let out the way that anxiety cripples me in public, if I can avoid it, but I know I’ve ended up outside a restaurant with a virtual stranger in the cold because the combination of curry, music, conversation, and a weekend full of strangers sent me over the edge. That’s the sort of situation where I could have stopped talking, and I don’t know how I still managed to stay in the moment. He was amazingly patient and is now a very good friend, but it’s very hard to show that side of myself to anyone, let alone someone I don’t yet know. At worst, I can end up going into “shutdown” or “meltdown”. The former is where I temporarily lose my powers of speech, but can type or write just fine, and that’s what I have to do to get anything across for a while. The latter is where everything has built up inside me and I can’t keep it in. I’ve been known to be violent during those times, though mostly towards myself, utterly irrational, screaming, crying, self harming, and at worst, suicidal. There’s nothing “high functioning” about either of those times, and mercifully, I’ve not fully melted down for a long time.

My point is that “high” and “low” functioning might be, at best, slightly useful terms to use for autistic people if you’re trying to work out what’s going on, but they are generalisations that tell you nothing about what’s going on in someone’s life. We do not, and should not, have to “pass” as “normal”, and it’s not a failure if we can’t or haven’t. The autistic child in a wheelchair who flaps their arms around and makes funny-sounding noises in public has not failed by not walking and talking. I try to smile at them, because I know that their world is just as noisy and overbright as mine, probably, and smile at their parents or carers so that they can know that at least one person wasn’t giving them the side eye and judging them. I must look like a loon grinning around the place like that, but I nearly always get a smile back from the parents, and sometimes I get a reaction from the child too. I’m not saying I want a gold star for making it as a disabled person in the real world (though if you want to, I love gold stars, so hit me up, OK?) I want to feel less pressured to keep it in when it’s hard, to feel like I’m allowed to be affected by things, be supported when it gets too much, and helped when things fall apart. There are people in my life who already do that, and they are all angels (even if halos would look damned silly on some of them). It doesn’t take much, a lot of the time, and if you’re confused as to how it should work, then all you have to do is ask :)

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.

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 #1: Autism Awareness

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

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

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

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

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

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

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

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

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

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

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

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

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

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