Why I struggle with the “Search for my True Autistic Self”

The subject of autism diagnosis in later life is big news currently. It’s something we discuss a lot among ourselves, and is increasingly the focus of attention outside of the autistic/autism communities.

Such accounts are typically framed in terms that are becoming firmly fixed in discourses among autistic people – suggesting that diagnosis confers “self understanding”, and “identity” and explains who we are as individuals. There is also the suggestion that this “self-discovery” links us with others who are similar to us, though this is generally articulated in terms of the individual comfort one can take in recognising that others too are involved in such journeys of “self understanding” and “self discovery”. It is apparently comforting to the individual to know that there are others who are similar to oneself, and are similarly bruised and broken by a world that doesn’t understand and recognise our “self”

Flowing from this comes a search for the “true” autistic self. The self that we could apparently have been, if our autism had been recognised earlier and we’d been allowed to grow up as our “true” autistic selves, free from the pressure to conform as “fake neurotypicals” (a goal that seems to disregard the rather obvious social fact that upon diagnosis, our autistic selves, far from being allowed to express themselves, are oppressed and stigmatised as autistic. I’m unclear about what early diagnosis would do to eradicate this).

And I have real problems with this idea of “true” autistic self. I recognise that it is important for some people, but for me, I don’t think I have one. I am not just “autistic”, I am “autistic in the world” – I always have been, and I always would have been, regardless of when I received my diagnosis. But I also find focus on the search for “true” autistic self politically very problematic. I don’t just think it’s an illusive, ultimately fruitless, but essentially benign quest. I think it’s potentially quite distracting and harmful, so I’m going to try to argue here why I think this is the case. I have two points to make.

Firstly then:

It ignores the work that goes into making an identity – and thereby psychologises, individualises and depoliticises us

One of the things about our understanding of autism, that I think arises from the control that psychology, that the DSM/ICD and that diagnosis have on it, is that it is often seen as something “natural” that we “can’t help”. It is supposedly based on observation of our “natural behaviour” and on our (and often our loved ones’) self-report of the same. My own psychological reports say that I would probably outgrow my diagnosis as I learned to adapt – as I learned coping strategies. This was intended to give me (or possibly my loved ones) hope. It was written from a perspective that sees Asperger syndrome as a diagnosis, as a deficit, as a Bad Thing that makes my life worse and from which I would (should?) hope to be released.

In terms of identity, this sort of explanation is extremely troubling. It suggests that a fundamental part of who I am is problematic, and something from which I would seek to separate myself (as one does with “sickness”). And the temptation, in response to such trouble, is to argue back in precisely the terms of “natural” and “can’t help it” – is to point out all the ways in which I am still observably autistic in terms of my “natural behaviour”. This is tempting, and feels important because any suggestion of “doing being autistic” would be understood in terms of “faking” or “putting it on.” So if I want to keep the identity – I have to argue in the very terms of psychology under which I was diagnosed. I have to play psychology at its own game that defines autism as externally observable, “natural” and “can’t help it” diagnosis. Anything else risks the diagnosis – risks my identity.

But this denies me any agency in shaping my identity. It makes me powerless. It doesn’t allow for my own political position, which is to argue that although my genetic profile, and my clinical and social history would suggest that I was born autistic – that I actually get some choice in how I deal with this in my everyday life. I make choices about my autism in a way that is disallowed by the language of psychology – of diagnosis, of “natural” and of “can’t help it”. I make decisions about when and how I “come out” as autistic – I make decisions to put myself in situations where I may have a “meltdown” or a “shutdown” – I make decisions about whether to wear my headphones in public (the sort of thing that can get one accused of “faking” if one sometimes chooses to bear a situation that is almost intolerable so as not to look different or odd, and sometimes chooses to go with different or odd rather than horrific and painful) – I make decisions about whether to flap my arms in public when I’m excited (which feels good but looks odd) or to sit on my hands and internalise the flapping impulse (which is exhausting and sometimes dislocates my wrists).

I also make the daily decision that my autism is a political thing. It isn’t something I routinely suffer silently in shame and individual isolation (though sometimes I do). It is a community of which I’m part and is a way in which I understand the politics of difference and oppression – and it gives me a commitment to social justice and to trying to understand the oppression of others (while recognising absolutely that their own experience of oppressed identity is as special and different as mine.)

This is the work of “doing” identity that is not accounted for in the language of “true” autistic identity – and the language of “true” autistic identity actually plays into the world of psychology, of diagnosis, of observable and “natural” and “can’t help it” that I’ve tried to show challenges my construction of my autism as a political and politicised identity. The search for “true” autism identity, to my mind, therefore gives too much power to psychology to label and control autism, and to locate it as something in the individual that they “can’t help”. It is depoliticising and therefore, to me, unhelpful.

It fails to challenge neurotypical oppression and is politically unhelpful

Going further and expanding on the political nature of autistic identity as I see it, I don’t think that a quest for “true” autistic identity has any place in my autism politics. For myself, I reject the idea that I have a “true” autistic identity that is waiting to be discovered beneath a surface of learned/imposed neurotypicality. I am me. I am autistic. I interact with the world on a daily basis. I’m part of the world, and I have been from the day of my birth. Certain parts of me are accepted by the world, and parts of me are rejected and ridiculed by the world. But they are all “me in the world”. My focus is on changing the world so that those parts of me (and others) that are currently rejected and ridiculed might be understood, accepted, embraced and made use of. The search for a “true” autistic identity plays no part in this.

Jim Sinclair was emphatic years ago, when they wrote their powerful statement, “Don’t Mourn for Us” (which I wrote about here) that as autistics, we are not typical people trapped in a shell. There is no “normal” person trapped inside us waiting to be released. This is a strong political argument against autistic “conversion therapies”, ABA and other attempts at “cure” – in the sense that there is nothing inside the “shell” waiting to be cured!

But I’d develop this argument by saying that just as I’m not a neurotypical person trapped, awaiting release by a benevolent, expert (neurotypical) therapist, I’m also not a “true” autistic buried under layers of neurotypicality. What I am, is an autistic person who has lived since the day she was born in a world of neurotypical oppression. My identity has been constructed, produced and is reproduced on a daily basis in the context of this oppression.

This construction is a shifting, developing process of molding and sculpting rather than a suffocating process of layering and burying. What we talk of as “passing” or “camouflaging” may feel like specifically autistic work of “burying our true autistic selves” – but what I’d argue it actually is, is the work of “doing identity” (which people – autistic or not –  do in lots of ways – the words we use, the clothes we wear, the people we have sex with…). The important part of “doing autistic identity” is that certain parts of our “doing identity” are currently seen as socially unacceptable and oppressed (as they are for other marginalised, stigmatised identities that fall short of society’s demands and expectations.)

The oppression is the thing I want to change, and the search for a buried (fictional) “true” autistic identity distracts me from this. Searching for it (even if I thought it existed, which I don’t) is not helpful to my political agenda, and is therefore not something on which I want to concentrate my energy, my attention and my efforts.

And that’s why I personally struggle with “true” autistic identity.

A Very Short Blog About Being Autistic in the World.

 

I started writing a post this weekend, but I’ve decided that I’m not ready to express my thoughts on the topic in question just yet. It’s a ‘big deal’ and deserves more of my attention than just a quick blog post.

However, in the course of writing that post, I wrote this paragraph, and I want to share it now on its own, because I feel very strongly that if you want to know anything else about autism (or, at least about autism as I experience and process it), you have to know this.

                   “You need to know that from our very earliest attempts at communication, we are often told that our sensory and emotional expressions are wrong. We are told that cuddles are supposed to be pleasant, even if to us they are painful. We are told that busy, loud environments that hurt every part of our bodies and make us either run, curl up or lash out are “fun”. We are told that it’s important to look at people’s eyes when we talk to them, even if to us this is painful. We are told that the ways in which we do conversation are wrong. We are told that the ways in which we do friendships are wrong. We are told that our passions and enthusiasms are wrong. We are told that we are wrong.”

For me, if you are serious about understanding us and about helping us, you need to recognise that all of our doing and being is framed according to this experience – an experience that began with our very, very earliest attempts at self-expression and social communication and that can make it impossible to know who we are.

“Just be yourself” is hollow advice in these circumstances.

Most of this blog is actually about me trying to figure out what this experience means for me as an individual in the social world.

 

‘Kitchen Experiences’ – The Everyday Work of ‘Coming Out’ Autistic

I read a really interesting blog post the other day, about the role of employers in helping neurodiverse employees to ‘come out’ about their conditions in the workplace . (N.B. ‘neurodiverse’ is used in the blog as an ‘umbrella’ term for a wide range of neurological differences, including ADD/ADHD, dyslexia, dyspraxia … and autism.) The blog also deals  with the reasons for using the term ‘coming out’ to cover the process of disclosing disability.

The blog is here – definitely worth a look in my opinion.

What I want to do here is to add to that discussion, by explaining a conversation that I’ve had this morning – a very, very mundane, ‘everyday’ kind of conversation in my own house, but one that is so representative of hundreds of such conversations I’ve had over the years that I think it’s worthy of some comment here.

It was a conversation that unfolded in such a way that it created one of those moments where I was faced with the decision – ‘do I mention my autism here?’ – ‘do I want to ‘come out’ to this person, right here and now?’ And it happened like this:

A Kitchen Experience

We had visitors in the house – they were there in relation to my partner’s work, so they were people I know, but not well. I was making coffee, and one of the visitors was in the kitchen too. It became apparent that (in an inquisitive way) they wanted me to account for the fact that I was at home during the day, and not out at a 9-5 job. So the conversation came round to what I do for a job – and I talked about my PhD, and about previous and other related work, which has all been in fields associated with disability (and autism in particular).

And then the question comes … “So how did you get into that kind of work then?”

I’ve been asked that quite a lot. It’s a perfectly harmless question – at least I’m sure that’s how it’s meant. But there’s so much behind it. In that moment, I have to assess the risks and benefits of ‘coming out’ – because what I want to say in those moments is something like:

“Well, I’m actually autistic myself, and I’m absolutely passionately, obsessively, deeply committed to making the world a better place for other autistic people, because I know how the world can hurt us. And really, by extension, I care about finding out more about, and challenging all the other ways in which the world hurts people.”

I didn’t say that though. I gave some very dull comments (in a very expressionless voice, avoiding eye contact by looking at the coffee cups) about job opportunities that arose when I finished my undergrad – and implied that I fell into a field in which I was little more than intellectually curious.

And this raises three important questions for me:

Why, in that moment, in my own house, did I feel like I had to give that answer? 

I think that there are two main reasons why this happened – and it’s possible that they might seem contradictory (I’ve said before that if there’s one thing that autism is, it’s a bunch of contradictions).My aim here is not to try to present some unifying account of the situation, but to point out these contradictions as I experience them. So the two reasons that stand out most clearly to me as to why I wouldn’t ‘come out’ as autistic in that everyday encounter are as follows:

  1. Firstly – I’m aware that autism is stigmatised. I know that there are stereotypes about what we can and can’t do, and in my mind, if I give away my identity I run the risk that these stereotypes will be held against me in the future. Anything I say that is remotely unusual, any behaviour that deviates slightly from the ‘norm’, and I feel (I know from past experience) that this can be held against me. Anything that would be ‘a little bit strange’ or ‘assertive’ or even ‘rude’ becomes ‘autistic’ for me – and the difference is that ‘strange’ or ‘assertive’ or ‘rude’ are things that we DO. They’re not things that we ARE – so the label can be discarded (by avoiding similar behaviour in future) without any permanent negative effect on how people see you. Whereas, whatever I do can be interpreted by an autism ‘lens’ – through stereotypes and misunderstandings, and I can’t get away from it.
  2. Secondly – there’s work in coming out as autistic. It takes effort to find the right words for the specific situation. And I wouldn’t mind that work, but again it’s risky. Because if I get the words wrong, then I don’t do justice to my identity and I leave it open to being dismissed by whoever I’m talking to. This happened to me just the other week. I disclosed my diagnosis because the person I was speaking to mentioned that they knew someone else who ‘technically has Asperger syndrome.’ My comment of ‘me too’ was met with a long speech about how the person I was speaking to believes it is over-diagnosed and that everyone ‘can be a bit odd.’ Bearing in mind that many of us come to be diagnosed because the price of being understood as ‘a bit odd’ has nearly crushed us, it feels incredibly dangerous to put on the line for public dismissal the very identity that helps you to make sense of yourself and what you understand to be your limitations.

Why does this matter?

I’d like to say that I think first and foremost that it matters because in not disclosing that I am autistic – in not ‘coming out’ – I feel like I’m betraying my identity. I feel like I’m hiding part of myself that is quite important to me. And I also feel like I’m doing a disservice to other autistic people by colluding in the stigma.

I feel that if you’re in a minority, representation matters (though I don’t like that fact, and it’s one of the main things I think we need to challenge if we care about social change) – but I want to be ‘real’ and very open and proud about myself (and in a lot of situations I really am). And I feel that if I’m not open all the time it’s like I’m lying. That is why in this post I’m trying to very hard to articulate why I think it happens – the forces around me that make ‘coming out’ feel so risky (though also feeling guilty and sad because I’m feeling deep down that maybe it’s just personal weakness on my part that makes me keep quiet).

And what does this mean for employers and other who want to help us to be ‘out’?

Well, I think that if employers (or anyone else, in fact) are concerned with making it safe for us to ‘come out’ this needs a huge social shift. For me, it’s got to be about more than creating individual safe spaces in the workplace (though that is without doubt an admirable endeavour!) But the thing is, that in the example I’ve used here, I WAS in a safe space – I was in my own kitchen (there are few places in the world where I feel safer).

But in that moment of decision – to ‘come out’, or not to ‘come out’ – it’s about more than the immediate space.

  • What is weighing on me in that moment is all of the time as a teenager, trying to find words for my experiences, and my hurt – and not being understood because no one knew I was talking about autism.
  • Then all the effort of trying to ‘make my case’ for diagnosis – being told by my doctor that I couldn’t have Asperger syndrome because I don’t have a learning disability, being told by my psychologist that I’d ‘grow out’ of my diagnosis, because I’d learn strategies to cope.
  • And then all the previous times in everyday life where I’ve tried to ‘come out’ – and the conversation has become about ‘you’re not properly autistic’ or ‘oh but you’re so able’ or ‘so how exactly does autism affect you?” Or – and this is probably worse – times when mentioning my diagnosis has led to an increased need to prove myself and my abilities – and also that I’m not TOO passionate about autism, because it’s wrong to be a one-trick pony with an agenda (especially when everyone knows that obsessive interests are part of our pathology).
  • And of course, right there at the forefront of my mind, there’s leaving a job I cared about, with ‘Asperger syndrome’ written on my sick note.

So often, when people want to make a difference in autism, we aim our efforts at attempts to figure out big policy changes that we can make – or physical adaptations to the environment (the elusive one size fits all ‘autism-friendly environment), and we do this by attempting to generate specialist knowledge that can be applied in specific contexts (autism and employment, autism and healthcare, autism and education). We create specialist provision in universities – ‘Disability Services’ so that there’s somewhere for autistic people to go with their needs – separate from the social environment of academic space. And all of this definitely has its place – I’m glad people are thinking about those things. Some of them have helped me a bit in the past.

But this specialist knowledge, and the adaptations and policy changes that it seeks to generate are of little use in the distinctly non-specialist environment of my kitchen.

And likewise, those ‘kitchen experiences’ (and, as I have tried to stress, this is just one example of a very, very common thing) have a very deep and profound effect on how I manage in those created spaces (autism and employment, autism and health, autism and education). They weigh heavily on my mind when I am trying to decide whether to disclose and, if I do decide to disclose, how I frame the disclosure – how I construct my autistic identity in that place, and (as it’s usually phrased) how I answer questions about my needs.

And this becomes problematic – because it means that those everyday experiences (the ‘kitchen experiences’) are having an effect in the very places where people are trying to help, and we end up speaking different languages. The employer (the clinician, the teacher, the disability adviser) has worked very hard to understand autism, and they desperately want THEIR environment to be a SAFE environment, but the autistic employee (patient, student) has had so many ‘kitchen experiences’ that they frame their ‘coming out’, if they manage it at all, in a way that is ‘safe’ but not necessarily ‘real’.

In short – I’m so, so glad that people are talking about the role of employers in helping neurodiverse employees to ‘come out’ in the workplace, but (and I think that this also applies to those other contexts – hospitals, schools, universities) – if you really want to make safe spaces for us, you have to understand the everyday, the mundane, the non-specialist. You have to understand the ‘kitchen experiences’.

 

Why I’m unhappy with “Imposter Syndrome”

So, I may have mentioned that this blog is likely to be a pile of contradictions – and that I might end up changing my mind, or refining ideas about things as I go along.

Well, this is one of those times …

I wrote a blog recently about how I feel that my autism diagnosis makes having confidence in my ability to do my PhD really hard (it’s here if you’d like to take a look). In the post, I mentioned how frequently the term “Imposter Syndrome” was used to describe how often people don’t feel like they ‘fit in’ in academia – that they don’t feel good enough. I tried to explain how having an autism diagnosis, with all that this involves, makes this even more tricky.

Well, my blog was picked up and retweeted by Susan Oman, who is researching wellbeing, including in relation to PhD experiences (you can check out her work here). What was particularly interesting was that in retweeting the blog link, the phrase that Susan picked up on was “I feel like an imposter, but not just that, I feel like an autistic imposter.”

And this is really how it felt to me when I wrote it – like all PhD students experience ‘imposter syndrome’ but being autistic makes this even more of a problem.

So why am I questioning this now?

Well, since I wrote the blog, I’ve been thinking about, and speaking to others about how the notion of ‘imposter syndrome’ actually works, and it occurs to me that the phrase, and what it implies, might not be helping.

What I mean by this is that I had been thinking of ‘imposter syndrome’ as something that affects individual PhD students – and that my individual experience of autism meant that my version of ‘imposter syndrome’ was different/worse/whatever than that of others. Well, the thing is that I do still think this might be the case to an extent – and I don’t think that those who aren’t autistic can understand what it’s like, or can know about it. I do still feel that, but in the past that’s made me quite protective of it, and quite “parochial” (I guess) about the specialness of autism and of autistic experiences.

I didn’t want it to be lumped together with other types of individual experience because how could others possibly know about autism? (Which was my individual experience, and the overriding cause of my ‘imposter syndrome’). So it shut off my thinking about other types of individual experience – people who experience ‘imposter syndrome’ because they are trying to do PhDs and balance childcare commitments, because they have come to academia via a ‘non traditional route’, because they are older than the ‘typical postgraduate’ – or all the other hundreds of thousands of ways that people can feel that they don’t fit in with the model of what a ‘proper PhD student’ should be.

It set me apart from them because the term locates ‘imposter syndrome’ in the individual. It sets it up as an individual ‘problem’ for the individual to overcome.

But I’m not happy with that. Because locating the issue within the individual makes it into a ‘personal’ struggle and creates some kind of hierarchy (“my experience is worse than yours because I have autism” or “your experience is worse than mine because you’re from a Working Class background”). It also has the potential to locate the cause of the trouble in individuals – individual supervisors, individual departments. And this in itself is something that makes raising these issues very problematic for those of us who actually have good relationships with supervisors or with our departments. Indeed, this concern makes it feel troubling for me writing this now, because it feels like it would be so easy to infer from my attempts to absolve myself of any individual ‘blame’ for feeling like an ‘imposter’, that I am attempting to lay the’ blame’ on other individuals. But it’s absolutely not that. I have a really great supervisor and I like the department I’m in. The issue is a far deeper cultural one than that, and I think it goes beyond individuals and is historically and culturally rooted.

So I think that this individualisation of ‘imposter syndrome’ lets the wider systems and structures that lead people to feel that they don’t have a place within academia ‘off the hook’. And really, seriously, if this phenomenon is so widespread, across so many different types of student, different institutions, different academic disciplines – then maybe, just maybe the problem is not an individual ‘syndrome’ but a structural issue. Maybe the focus for change needs to be on the concepts and practices, the systems that are creating the conditions for people to feel like outsiders in a place where they have earned the right to be.

And I don’t feel that talking about ‘imposter syndrome’ really gets us to a place where that is our focus for change.

I don’t pretend to have definitive answers for change, but I do want to be part of something that makes change happen – that makes academia a more inclusive place to be, so that those of us who are ‘non mainstream’ can make meaningful, recognised contributions in a way that does not push us to the brink of breaking, or beyond.

My reasons for this are clear and unashamedly partisan – as an autistic woman, I feel that I need academia. I need to be able to go beyond my own personal experiences and understand how the world works around me. I need to learn, and I love to teach. I also feel that I have something to contribute. I’ve worked really hard to get where I am, and so many people have helped me along the way. But being part of a community means you have a responsibility to it, and to help to shape it, and that’s what I’m trying to do from my autistic perspective.

So the one thing that I feel like I can offer at this point is the suggestion that maybe we should reconsider the language of ‘imposter syndrome’ and begin to talk about something that locates the problem outside of individuals so that we can begin to work within and change a system that actually makes the majority of us feel like ‘imposters’ at some point. Maybe we need to shift our focus much more firmly to ‘hostile spaces’ or ‘hostile cultures’ in the PhD experience and in academia more widely (of which the PhD is a formative part). Because that’s where I think change needs to happen.

 

Diagnosis and Identity – Need and Power

Diagnosis and Identity – Need and Power

In this post, and in others that follow it, I want to think about the issue of diagnosis in autism/Asperger syndrome. I want to explain a little about the power of diagnosis (as I’ve experienced and observed it) – what it means to confer a label onto someone, and give (access to) an identity. I should be clear that I don’t mean to suggest that this power is necessarily positive or negative. It just ‘is’, and therefore I think it needs to be exposed and explored.

This particular post is personal. I can’t imagine where else I’d start.

In it, I had intended to revisit my diagnosis, and my actual diagnostic report to look at what was written in there about me. (I can remember parts of it by heart, but I wanted to make sure that I had the wording right). But it turns out that I’ve lost it again. I needed it last year, in order to ‘prove’ my autistic status but I don’t know what I’ve done with it since. A clinical psychologist could quite probably label this as being “poor executive functioning” – misplacing something as failing to keep track of it – being chaotic and incapable – being autistic. What it actually is though, is that I’m quite ashamed of that document. I hate how I’m described in it, and I can’t stand to look at it. But I need it.

It’s an odd thing that something that you work so hard to attain, – to be given, and that is so important for accessing support and services, and for understanding who you are, can also be such a source of intense discomfort and shame (not the diagnosis itself, but the words used to describe everything you are as a deficit – and anything remotely ‘positive’ as an exception). That you can be the custodian of something you fundamentally hate.

So in the next few posts, I’m going to try to explore this curiosity of the power of diagnosis in my life, and then think about what this might mean for emerging discussion about the social role of diagnosis, and of categorizing people more widely. For now though, let me explain how I got to the point of “diagnosis” – this is crucial to understanding why it matters so much – why it is powerful.

The “Moment of Realisation”

There was an actual moment where it all started.

I was home from university (at my parents’ house) because I had been struggling really badly and needed to be at home. It’s hard for me to describe what I mean by ‘struggling’ as I’m so immersed in that word that it’s actually difficult to communicate its essence, and I’m sitting here racking my brains but it just won’t come out right. Everything I put down reads like either a script from a book about autism (cherry picking things that we know “about autism” and explaining how they applied to me), which is exactly the approach I’m trying to avoid, or it reads like the kinds of experiences that come under headings of “you’ll grow out of it” or “all teenagers are depressed” – which is exactly what people told me at the time. But it wasn’t that. And this is the problem – this is always the problem when I try to explain – I just don’t know what the right words are.

So, I’m sorry that isn’t particularly clear, but part of what I’m trying to express in this blog is this very problem – one of not having the words to tell your own story, and therefore being shoehorned into other stories (the ‘autism’ story, the ‘clever girl’ story, the ‘depressed teenager’ story.)

But yes, ‘struggling’. Which meant in practice a lot of crying, a lot of headaches and a lot of feeling sick. And wondering what the hell was wrong with me because this was becoming something of a pattern – having been told since before I started school that I was ‘bright’ and ‘able’ and ‘above average’, but also feeling utterly stupid because I ‘have no common sense’, and feeling totally unable to understand people around me – why they do the things they do, how they manage social interaction, how they know when it’s their turn to talk in a conversation, how they know when to stop talking about something that interests them because the person they’re talking to is bored, how they know if someone is their ‘friend’ … and yet at the same time being so incredibly sensitive to the emotions of others that it would literally hurt.

If there’s one thing that autism is, it’s a whole string of contradictions.

So yes, university was all that but magnified. And I had no word to explain it. I had diagnoses of depression and OCD (Obsessive Compulsive Disorder), but neither of these ‘fitted’ – and people who knew me said that they weren’t right. They told me I was ‘normal’ and thought that they were helping me. So what conclusion could I reach but that I must be a freak and a failure?

And then, on that one particular day, I was half asleep, half watching the television, and someone began talking about having Asperger syndrome, and specifically about how they felt when in crowded places or surrounded by too much noise. It was so powerful because I could relate to it. There was a word at last! It was also problematic though, because the only other time I’d heard it discussed was by someone talking about the problems they had with a colleague at work who was ‘difficult’ because they had Asperger syndrome (words are powerful!) but there was no going back, I had to find out more.

There was nowhere near as much literature specifically about AS as there is now – and certainly nowhere near as many ‘first-person’ accounts, but there was some, so I began researching. This was tricky though because there wasn’t really much consistency in what I found – and some accounts would directly contradict others. So how could I know if I matched enough with all of this to “count”? And given how much of a failed person I was feeling, I really needed to “count”. I was in a place where I needed to know for sure. I was caught between “you’re a normal teenager, you’ll grow out of it” and “I’m a freak and a failure” and that’s not a good place to be. So I NEEDED to know.

I’ll continue the ‘story’ after this point, of actually seeking diagnosis in another post, because there’s quite a lot to tell – but the one thing that strikes me as strange thinking back on this, is how in seeking a diagnosis, one can be so reliant on others (clinicians) to “give” what they call a ‘diagnosis’, but what feels to me so much more like an ‘identity’ – a way of framing a personal story.

Identity as “given”?

I wonder if there are other instances where people feel the need for an identity to be “given”? Maybe professional identities work in a similar way? (The moment during a PGCE where you “become “ a teacher?) The difference I can see there though, is that professional identities can be fluid (if the ‘teacher’ identity or the ‘doctor’ identity or the ‘dentist’ identity become unhelpful or problematic they can be left behind). It doesn’t work like that with something as essential as who you are.

I’d love to know if others feel such a need for an identity and such a reliance on those with the power to give it.