Guest Post: Autism, Schools & Unconditional Positive Regard (The Perspective of an Educational Psychologist)

I’m delighted to be able to host this guest blog from an Educational Psychologist with whom I’ve been in contact, who wishes to share their observations and perspective about the experiences of some autistic children they encounter in their professional practice.

This is a much-needed, important perspective and I’m privileged to be able to share it.

(I am also very happy to consider hosting other guest-posts from people who have a view to share about autism or any of the other social and political themes that fit within the scope of my blog. If you want to share something and need a platform, please feel free to get in touch – either via this blog, or via Twitter @aspiewithqs)


 

There’s a well known psychological theory by Carl Rogers called Unconditional Positive Regard (UPR). It refers to accepting and valuing someone as a person no matter what they say or do. Everyone has their own inner resources with which to help themselves, given the right support and environment.

I’m reminded of Unconditional Positive Regard often in my role as an educational psychologist. This is because I don’t see enough of it in schools. I’m not blaming teachers. From the very top down, education in the UK has become far too conditional.

Ever increasing demands of government targets and decreasing resources have meant that children who don’t meet the conditions of “normality” are seen as peripheral, and it’s usually those with challenging behaviour who fare worst.

Autistic children require flexibility and adaptations in mainstream schools to ensure they are happy and able to learn. Without this support they experience sensory-overload and anxiety, which can be internalised, or externalised through expressed aggressive behaviour.

In my career in education I’ve noticed that school staff have become much better at recognising autism (albeit in boys) but in some cases less willing to support. In my view this isn’t just due to lack of resources. It can be attitudinal.

Too often I see rigid expectations that autistic children have to fit into. Rogerian ‘right support and environment’ is dismissed. Don’t get me wrong, I’ve seen lots of excellent practice, but also some bad, and this often occurs with the anxiety associated with a poor inspection. With the best of intentions of child-centred education, when there’s an emphasis on improving the overall results of a school at the cost of everything else, Unconditional Positive Regard disappears into the ether.

When I started teaching over two decades ago exclusions were extremely rare in primary schools. The shameful, unlawful practice of putting children on so-called part-time timetables was unheard of. Sadly, it has become seen as inevitable for some, disingenuously described as “support”. When asked what strategies are in place already it has been glibly reported “We’ve put him on a part-time timetable so he doesn’t fail”.

Sending a child home is NOT an intervention. It’s giving up on them. For an autistic child at their greatest time of need this is the worst thing that can happen. It gives a clear message; you don’t belong here and may only come back if you meet our conditions. The problem is, this is unachievable without the ‘right support and environment’.

A teacher who is prepared to be flexible, hold an autistic child in their thoughts and anticipate potential stressors can do a great deal for inclusion. When things go wrong for a child this should be seen as a learning opportunity, not just for the child but also school and teacher by reflecting on which unmet need the behaviour was communicating. I’ve always thought from my early days in training to be an EP that unconditional positive regard is bountiful in schools where this way of understanding behaviour is the norm. It’s a progression which enables a child to accepted and valued regardless of what they say or do. Full time Teaching Assistant support won’t help unless these values are espoused throughout a school from strong leadership.

Data are inconclusive because part-time timetables aren’t formally recorded, but research by charities suggests that there’s a high proportion of autistic children receiving exclusions in the UK. The tragedy here is that when schools actively listen to parents it’s not that difficult to understand triggers for behaviour. These can be anticipated during the school day and measures taken to minimise the likelihood of a child being exposed to them. Sometimes it can be something as simple as letting the child leave school five minutes early to avoid sensory-overload at home time, or allowing them to eat their lunch in a quiet room. These may appear trivial in the grand scheme of things in school, but parents report how much the little things can make a huge difference to their child’s emotional state at home.

I studied Carl Rogers as an undergraduate and it continues to inform my thinking in education. I was trained as a child-centred teacher. I taught in schools where, if a child was sent to a special school, teachers were disappointed and felt that they had failed that child. I do see this sentiment with teachers I work with now, but it varies enormously from school to school. For some, getting a child into special school is seen as a first resort and massively overdue, even if they are capable of achieving in a mainstream setting. Minimal efforts are made to help them remain, and I’m increasingly noticing this with autistic children. Unconditional Positive Regard, a given for all children when I started teaching, is now sometimes seen as a luxury.

 

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.

Frustration, shame … and doing stuff anyway…

I’m writing this because I have important things to do just now, and negative thinking is getting in the way and slowing me down. Writing here is a way of externalising things – “getting it off my chest”, if you like, so I can get on with being productive. So I’m going to describe the “problem” before trying to explain what might be done about it (With it? Because of it?)

Saying the “Unsayable” 

I’m also writing because a lot of the things I’m thinking are things that I feel I’m not supposed to think  – Things where a commitment to “autistic pride” and to “identity” and ideals like that come up against … What? I don’t know – Self-hate? Disgust? Internalised ableism? A desire for an easier life? It’s really hard to be a person who cares deeply about autistic community, about identity, about rights … and at the same time, to sometimes really, really wish I were – could be – could make myself – normal (socially acceptable). Or alternatively possibly just accept that I’m pathological, that there really is something individually wrong with me – shut up, accept that I’m “less than” and keep chasing specialist therapy to fix me.

Arguing that there’s “nothing wrong with me” but that “the world hurts” feels audacious sometimes.

It feels like if you’re in a minority of any kind you have to adopt a position and stick to it – and any ambivalence is “letting the side down” – but life is never so one-sided, right? Sometimes it seems you can think one thing, and really believe it to your core, but life and the world get in the way, and make that position awkward, challenging … indefensible? (Well, no, obviously not. Definitely not.)

Frustration

Basically – the situation (the problem?) just now is that I’m so, so bored of being “different”. I’m bored of thinking. I’m bored of over-thinking. I’m bored of thinking about thirteen different things at once and all with such burning intensity that it hurts. Sometimes this kind of thinking is brilliant – it’s exhilarating and electric. But other times (like now) it’s overwhelming and self-defeating. It’s spaghetti-mess rather than straight lines.

I’m bored of the fear I have of other people, and of having to interact with them – fear of going to social spaces, in case I have to do conversation and I get it wrong because I just don’t know what I’m supposed to do. I’m bored of not understanding people. I’m bored of feeling like they don’t understand me. I’m bored of feeling terrified and then of beating myself up again and again – analysing, and analysing, worrying and worrying, because I feel like I’ve got it wrong again – I don’t know the rules, and even at times when I DO know the rules, other people don’t stick to them, so how am I meant to know what’s right in that particular moment? It’s frustrating and unfair to have to play a game day in day out where the rules constantly shift and no one tells you.

It’s like wearing a social blindfold  – and it’s made worse by the fact that just sometimes I actually DO get to connect with people in a way that feels like “being myself” – and it’s meaningful and enjoyable and stimulating and productive – and it makes the rest of the time seem so bloody vanilla, and at the same time … so emotionally expensive … so EXHAUSTING.

I’m bored of feeling like I have to hide. I’m bored of being angry because I feel like I have to hide. I’m bored of worrying because I’m not doing a good job of hiding.

 

Shame

But also, I feel quite ashamed –

I’m pretty ashamed of myself because of how weird I am. Because of a lot of the things about me that get labelled “autism” (But how does that work, for a “proud autistic”?)

But I’m mostly ashamed because there’s so incomprehensibly much in the world that needs changing. For autistic people who have much worse lives than I do, and for lots and lots and lots of other people oppressed by the world.

I’m ashamed of reading so many other people worrying about “disclosing” their autism, and saying “that’s crap, I feel it too” – but what am I actually doing to challenge that state of affairs? And workplace discrimination, and unemployment, and abuse, stigma, bleach “cures” … (and that’s just the “autism world”) What am I doing about that? Feels like nothing.

Feels like nothing I do will ever be enough. If my stupid brain would only work better…If I could just get over myself – get over being so bloody scared … I’d be so much more useful.

And I feel ashamed of wasting time – you can call it “relaxing”, or “self-care” or “wellbeing” or whatever, but how is that ever okay when there’s so much to do? But then I get tired or tangled, and I have to stop working – and I feel ashamed of wasting time.

And I actually don’t like it (it makes me really, really uncomfortable) when people say I do a good job at stuff, because it’s not enough, it’ll never be enough. I could always do more.

Those are the Bad Thoughts anyway, but enough of all that…

 

The Good News

That bit sounded negative, selfish, self-indulgent. I accept that. I’m not proud of any of the above. I don’t aim to justify it. (I’ve been writing and re-reading the above, and thinking “oh for goodness’ sake, get a GRIP, woman.”)

But I needed to be honest, and “real” about how I feel sometimes. I needed to do this, because I think if we’re not honest like this, we give others (I mean mainly other autistics in this case) the false impression that we are totally comfortable with our identity, that we fight against the world, but never question ourselves. And this pervades all of our advocacy. I’ve read powerful writing myself, and thought “that’s exactly the kind of autistic person I want to be” or “that’s what I want to say”but then ended up feeling that I could never be that good because I’m so scared, and I doubt myself so much, and my brain is just so flipping inefficient and tangled.

So being “real” matters – the good, the bad and the ugly.

Because all of these tangles and all of this confusion, and all of this exhausting, infuriating intensity are who I am. And that means that they are part of my successes, as well as my failures.

  • They’re part of me when I write a blog post that helps another person to communicate a little of their own world that they see painted in my words.
  • They’re part of me when I manage to survive a social space even though I’m terrified – and make a contribution that was mine, that no one else could have made, or thought to make.
  • They’re part of me when I deal with worries and uncertainties by having ideas, by planning and by making ordered impact out of the chaos – ideas and plans that other people might miss because they’re never uncomfortable enough to have to think like that, or because they’re not focused enough to keep thinking about an issue until they get an idea out of it.

We can do stuff – when we feel broken and weird and damaged – even if for that one day, the only thing we can do is survive – we can do stuff. We can use who we are and what we have to work together.

I reckon we might be stronger than we know.

We may be messed up, but we can do stuff. And we have to, we absolutely have to – there’s so, so much to do.

Onward.

Revisiting Jim Sinclair – “Don’t Mourn for Us”: And (some of) my thoughts on the language of “cure”.

I’ve been revisiting this powerful essay by Jim Sinclair recently. It was really important to me as a newly diagnosed teenager, and hugely influential in shaping the views that informed my autism-related advocacy. I don’t see it quoted a great deal these days, which could be an oversight on my part, but as this is the case I thought I’d share it here along with my thoughts about why I feel it’s important for us as autistic and autism communities.

I’m just going to focus on a small section here (you can read the full piece in Larry Arnold’s “Autonomy” journal – here). But the part I want to focus on is this:


Autism is not an appendage

Autism isn’t something a person has, or a “shell” that a person is trapped inside. There’s no normal child hidden behind the autism. Autism is a way of being. It is pervasive; it colors every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence. It is not possible to separate the autism from the person–and if it were possible, the person you’d have left would not be the same person you started with.

This is important, so take a moment to consider it: Autism is a way of being. It is not possible to separate the person from the autism.

Therefore, when parents say,

I wish my child did not have autism,

What they’re really saying is,

I wish the autistic child I have did not exist, and I had a different (non-autistic) child instead.

Read that again. This is what we hear when you mourn over our existence. This is what we hear when you pray for a cure. This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces.


I think these words are incredibly important for our autism/autistic communities. There is much evidence that these communities are fractured – both within and between themselves – and probably (possibly?) the single word at the root of so much of this fracture is the word “cure”.

Often the disagreement is framed along the lines of an autistic adult voicing their rejection of suggestions of “cure” for their autism, and the parent of an autistic child replying in the terms represented so clearly in this quote from an autism parent in John J Pitney Jr’s book “The Politics of Autism: Navigating the Contested Spectrum”, which says:

“Anyone with the mental and verbal ability to challenge autism research is not autistic on a scale that I care to recognise.” (p12 – ouch!)

The reason why I like Sinclair’s perspective though, is because I think it sets out clearly why this parent’s perspective is problematic, and indeed the fallacy of the notion of “cure” in relation to autism – that it’s not a question of whether or not we should submit ourselves to “cure”, but just that it isn’t possible.

Certainly in my own case, my particular genetic mutation (deletion) is replicated in every single cell in my body. Further, as someone who was clearly “born this way” there hasn’t been a day of my life that hasn’t been experienced as an autistic person. There is no “me” that isn’t also “autism” the boundaries of those two concepts are coterminous. There are certainly times when those autistic experiences have hurt more, or conversely have brought me particular joy, but that is a function of the interaction between “autistic me” and the world around me, it’s not about me being more or less autistic.

Therefore – as Sinclair points out – you cannot cure “me” of my “autism” because if you remove the autism, the “me” doesn’t exist anymore (I don’t particularly like that as an aim).

Now, it could easily be (and often is) argued that it’s fine for me, with verbal and intellectual privileges, to argue in such terms, but I’d like to challenge that argument by suggesting that what I think Sinclair’s perspective does is to emphasise the impossibility of the term “cure” – not just argue against it, but say that it is actually an impossibility.

You can’t cure an autistic person and still maintain that person (whether or not you feel that you SHOULD – for the record, I don’t).

What this DOESN’T mean of course, is that one should do nothing to improve the lives of autistic people. This must be the focus of our autistic/autism communities, and there is certainly much work to do.

In saying that my autism is so fundamental to my identity, I am not claiming that it is an “easy ride”, that I always embrace it or that I don’t feel the need for changes to make my autistic life easier. For myself, I argue that the changes that are needed are structural – and are to do with the challenging of stigma, of oppression and of the ways in which our (neoliberal) society crushes those who are “different” and in any way “other”. That’s why much of my advocacy focus is political and concerned with autism as identity. For others though (such as autistic people with associated learning disabilities, with epilepsy, who struggle to regulate their own sensory and emotional experiences to extents that lead them to hurt themselves severely), the changes they need to make their lives more comfortable are likely to be very different – and may well involve the use of medical intervention/medication (not that medication is exclusively a possibility for this group of autistic people – it has often helped me to keep functioning in the neurotypical world and to keep myself safe and healthy. I’ve also had different types of therapy, at least 5 times that I can remember and with varying degrees of coercion – though it has never “cured” my autism).

I think from this, we might begin to see that actually there could be, while maybe not universal agreement, at least common ground between the autistic and autism communities – and that there is the possibility that we can further explore and explicate this if we lose the rhetoric of “cure” (which, as I suggest Sinclair has shown and I have supported based on my own experience, is an impossibility) and start to think, to discuss and to advocate in terms of “making the lives of autistic people more comfortable”.

To those of us who are autistic, the language of “cure” is the language of erasure and eradication. It is threatening and it denies our innate humanity and right to exist. It’s hardly surprising that we fight against this.

Maybe if we could lose the language of “cure” and “intervention” and begin to think more in terms of “rights” (to live free from pain, from stigma, from extreme anxiety – whatever the autistic individual in question needs to make their life more comfortable), and accepting that the ways in which these rights are secured are likely to be multiple and diverse in our pluralistic autistic community, we might be able to at least talk to each other – as autistic people and as autism advocacy communities.

I don’t claim that this is going to change the world overnight for us – but it may be a start.

Edit:

Thinking about this, and I feel like I need to add to what I’ve just written. I’m worried it sounds like I’m arguing that the ONLY problem we experience in relation to “cure” is the language – and I need to say that that’s not the case.

People do HORRIBLE things to autistic people in the name of “cure” -MMS (bleach – oral or enema), ECT, abusive “therapies” involving hitting and forcing a child’s mother to tell them they don’t love them – and lots of other things. Practically a new one every day.

I hope it’s clear (but want to emphasise), that I am NOT saying that the ONLY thing wrong in relation to these “cures” is the language used to describe them. These things are abusive. They are painful and often they are criminal (or if they are not, they should be). These are things that all of us as autistic and autism communities need to be fighting against – in a united way.

I don’t pretend that simply removing the language of “cure” from these abuses makes them in any way acceptable. I do wonder though – if we as communities lost the rhetoric of “cure”, whether this might challenge the “end justifies the means” quality that makes some of these abuses seem acceptable, and actually call them out for what they are.

Anyway, whatever the rhetoric of “cure” and what we do with it – abuse by any other name is still … abusive. Losing the pretence of “cure” behind which it often hides doesn’t make it somehow acceptable – it just shows it for what it is: abuse.

Thinking about the Tyranny of “Social” and being misunderstood – “Stupid and Pedantic” and/or “Blunt and Outspoken”.

I haven’t really felt the urge to blog for the last week or two. Am struggling  with depression at the moment and while this is nothing really unusual or remarkable, it makes life into a series of minor fallings apart and getting back together again, which are tiring and make writing personally into too much of a mental mountain to climb.

Also though, I don’t really think the internet needs my introspection and emoting simply for the sake of personal “writing therapy” – it’s quite boring really. So, it feels important to think that what I’m writing serves some kind of advocacy purpose, rather than only being about myself, in the sense of “telling my story” for the personal sake of it.

However, I think that what I want to write in this post does serve that advocacy purpose. It’s about social “misunderstandings” that can happen (especially to autistic people, but to others as well) – and tries to cover some of the problems with “social” that can be hard to talk about in real life, because “social” is such an emotive, moralised and normalised concept that to problematise it can be to confess to “personality flaws” and “weaknesses” that are tough to admit to. I guess I’m trying to challenge some of the more pernicious aspects of stigma that I’ve experienced in relation to “social”.

So these are two types of “misunderstanding” that happen when people don’t understand how I (can’t) “do social” – how confusing it all is, and how I can often feel like a fish out of water while (apparently) doing a good impression of gliding swan (ugly duckling?)

Stupid and Pedantic

One thing that I find particularly confusing is the fact that people have told me for as long as I can remember that I’m supposed to be “bright” and “intelligent” – but I’m really not sure what this actually means. There’s obviously some kind of evidence for it in academic marks and grades – but it has always, for as long as I can remember, gone alongside being laughed at (with? Never feels like it) for lacking “common sense” and saying “stupid” things. This generally seems to happen when I fail to understand the context of a situation, so I say something, or ask a question that other people have avoided because they know from the context that the statement or question is implausible. It means that I often miss the point, and it makes asking questions feel like a really risky business.

In my teaching, I’m quite clear and explicit that there is “no such thing as a daft question” – because I don’t think there is. All questions are hard if you don’t know the answer to them yet. But I still have students who don’t dare to ask questions, or who preface them with “this is probably a daft question…” because they expect to be laughed at. Mostly I feel like that too – and it doesn’t have to be because the individuals present at the time are particularly cruel or likely to laugh at me, it’s just memories of being totally lost in interaction and not knowing how to rescue myself – and times when people HAVE, most definitely laughed at (with? Never feels like it) me.

The consequence of this is not only personal pain at being laughed at, but a lessened inclination to trust one’s own abilities, and an aversion to trying new things, asking questions and sharing thoughts. Not exactly conducive to learning. Not helpful. And (certainly in more extreme moments of self-doubt) the conclusion that I’m not “intelligent” at all – just stupid but very obsessive.

There’s another side to being a person who doesn’t always infer context though – or who doesn’t make assumptions or guess easily, and that’s the constant need for more information than is generally provided. This happens in terms of instructions – and is why when learning to do something – like acquiring new practical skills (rather than learning ABOUT something), I’m much less anxious if I can figure the thing out myself without the pressure of social attention. When I was at school, my mum spent summer holidays teaching me practical things that I’d have to learn in the following year (like sewing for technology classes), because the anxiety of not being able to do them and not learning in the ways that the majority of the class learned were too much for me to manage. I was just really scared of being laughed at (which was already happening enough anyway).

And this phenomenon has the effect of making people think that I’m pedantic too. A quite simple example will be if someone sends an email with a date and time for something, and they make a mistake which I’m supposed to recognise (from some other contextual information) as quite obviously a mistake – but I don’t know, because I can’t guess and make assumptions, and trying to do so makes me extremely anxious. So, my inclination would be to ask for clarification, but if I do this, I get comments about how it was “obvious” and that I’m being “pedantic”. I’ve tended to stop asking for clarifications because I thought that was the socially appropriate thing to do (other people don’t ask, so the rule must be not to ask), but this just leaves me anxious and nervous. BUT sometimes, when I do question things that don’t make sense to me, I get told that I spotted a mistake and was useful and this is seen as a socially advantageous thing. There’s no way of predicting whether the response to my questioning will be along the lines of “you’re such a pedant” or “oh we hadn’t spotted that – your autistic attention to detail is such an asset” – people are illogical and inconsistent, and it’s all very confusing.

What’s really good is when I can use my need for certainty and clarity and detail for the benefit of everyone I’m with. Last week, I had a meeting about a project I’m organising, and it was lovely because I was able to make sure that every action that needed to happen was clearly defined, with a deadline and person responsible for it clearly set out. We all checked that we had the same expectations and everyone commented that they knew what they were doing and were excited about the project. It wasn’t about me “being autistic” – I just did what comes naturally, in a context where I was able to, and it was appropriate, and it worked. There was no vagueness and no guessing – heaven!

But proper social situations (by which I mean those of a “hanging out with friends” nature, rather than “social” in the wider sense of “interaction with other human beings”) are the worst! Arrangements are often deliberately vague, because who likes being tied down to specific times and plans? (Err … “me” says the small autie voice hiding in the corner). You’re not allowed an agenda for social conversations, so there’s no opportunity to plan or script what you might want to talk about – and anyway, the chances are that you’re not going to be able to talk about anything really anyway, because people very often don’t want to talk about things that interest you (politics, ethnomusicology, textile crafts, swimming and being underwater, German grammar, really, really cool academic literature that I’ve just read…whatever else is occupying my mind at the time). And if you do find someone to talk to, who SEEMS interested in the same subject (because, to be fair, the majority of the friends in my life share at least some of my interests and politics), there’s always the worry that you’re talking too much about it (because it’s in your diagnosis that you can’t tell when you’re boring people) – and anyway (non autistic) people do social lies, so they’d never tell you to be quiet or that you’d talked enough – they’d just talk about you behind your back. That thought hurts.

And this is all before we’ve got onto the subject of “sensory” in “social”.

Quite apart from such offensive and frankly disgusting things as strong perfume, pervasive food smells (except garlic, garlic is fine) and the bizarre social convention of shaking hands (ugh), “social” in this sense means conversation, and conversation means listening, and listening means being able to hear. I can hear – I can hear well – I can hear better than many, many people BUT (like probably the majority of autistics I know), I CAN’T do auditory discrimination. This means that when I’m processing what I hear, my brain doesn’t do the trick that social brains do of filtering out background noise that isn’t useful in the social practice of taking part in conversation. The voice of the person (people) I’m trying to listen to and interact with has to compete with all of the other noises around – including the hum of lights, the buzz of electric wires, chairs scraping, projectors, other voices – and, and, and … attempting to filter all that out (unsuccessfully most of the time) is tense-making and exhausting (and, for me, the single biggest causes of overload/panic/terror/lashing out/ curling up/running away/“looking autistic”), but also, I generally can’t hear what the person I’m supposed to be talking to is saying, so I either have to keep asking them to repeat themselves (there’s only so many times you can realistically do that in conversation), or make a guess (more opportunities for looking stupid if I guess something totally inaccurate). One partial solution is to lip-read – if you ever think that autistics are not being “proper autistics” by seeming to do eye contact – chances are, they might be lip reading!

 

Blunt and Outspoken

The second misunderstanding arises because of my inability to be a proper introvert. As someone who hates “social” as much as I’ve described, it might seem like it’d be easy for me to just keep quiet and be a “shy girl” – society can be quite accommodating of “shy girls”. If I just shut up and kept out of people’s way, a whole load of this social rubbish could be avoided.

But I can’t do that!

Sometimes I think I’m going to try. If I have to “do social” and I really don’t want to, and am feeling quite belligerent about it, or if I really feel out of my depth, I decide I’ll just keep quiet, let other people get on with it, and wait until it’s over. But then somebody says something – and I either know it’s wrong (as in, factually wrong), or I have an opinion – and I just can’t keep it to myself. So I end up sharing it (sometimes in a socially inappropriate way, where I wasn’t even meant to be “in” on the conversation anyway, because I’m not good at observing the walls that exist around different groups in social spaces).

And because I’m only bothering to join in talking/interacting when it’s something I feel strongly enough about, it probably comes across that I’m that outspoken generally. I don’t know that I am though, I just think that if I don’t care about something that much I’m going to let other people get on with it – I’m not going to join in for the sake of “doing social” like other people do. I don’t think “doing social” is necessarily ever going to be my primary aim, because I don’t really know that it’s in my repertoire – if I’m talking to people it’s because I’m interested in the things they’re saying (that’s one of those things that one gets morally criticised for though – because you’re meant to be interested in the person as well, and in “being sociable”.)

There is, however, another way of looking at this “blunt and outspoken” misunderstanding – and that’s to question why it’s a problem. It clearly is a problem, at least to some people – those exact words are in my diagnosis, so were seen by my diagnosing psychologist as being indicative of my “social communication deficits”. But, when others describe me as “blunt and outspoken”, I genuinely think I’m doing “honest and interested” (which I think is a good thing). Honesty and “being real” are really, really important to me. Not feeling like I’ve been honest eats me up inside – which is a big problem when being honest is not socially appropriate (social lies – telling friends they look good when they don’t – telling someone you liked their cooking when you didn’t, as well as all the kinds of bureaucratic “not telling the whole truth” that goes on when filling in official forms). For me, I’d far rather people just said what they mean (which is different from being deliberately cruel – the kind of honesty I’m talking about is meant to help people to move on, give them other things to think about etc and it values them enough to engage with them. Being cruel does neither of those things). And on the “interested” part of “outspoken” – if I’m talking about something I care about, why wouldn’t I be interested enough to appear “outspoken”, and why can’t the people I’m speaking to be “outspoken” back so that we can actually have interesting (and interested) conversation? I don’t mean shouting at each other, I don’t mean being rude and I don’t mean being partisan and ignoring other perspectives – I mean being passionate and engaged. What’s wrong with that? How come that part of me is pathological and diagnosable?

Those are just the beginnings of some thoughts about the “tyranny of social” – and particularly social assumptions. There’s certainly more to say – not least about how “social” has invaded pretty much every job-related person specification, about the perceived morality of social, and about what this means in relation to the marginalisation of autistic people. But those are for another time.

“Work-Life Balance” – What are we talking about?

 

I’ve been thinking a lot recently about “work-life balance”.

It’s a topic that is talked about a lot around me, but it’s something that I struggle with – and as I think that much of the reason why I struggle with it is to do with the (intense, obsessive, stubborn, uncompromising), parts of my personality – and the ways of working that come out of that – that contribute to my being recognised as autistic, this feels to me like a “social construction of my disability” issue – and I think that expressing my point of view here in my blog is therefore appropriate.

My Point of View? 

Yes. Entirely that. I am in no way attempting to suggest any overarching, universal perspective on “work-life balance”, or to propose any kind of policy that would work for everyone. Indeed, a big part of my reason for writing this post is to challenge what feel to me like established orthodoxies that seem to do just that, and to argue that the situation might actually be more nuanced.

I think the things I’m trying to challenge can be arranged according to two broad themes, namely:

  • Externally imposed categorisations of activities as “work” or not. And established definitions of “work” – particularly the notion that it must be something unpleasant, or at the very least something that must be separate from “life”.
  • The notion that work is inherently exploitative, and that work, career and (financial) success are linked, to the extent that work becomes a competitive zero sum game where the way in which I choose to work has any (or should have any) impact on those in the work environment around me.

I think it’s fair to assume that we all have different individual attitudes towards, and relationships with work and that these are born of the individual journey we’ve made to get to where we are. But the problem, as I experience it, comes from the fact that when we talk about “work” we may assume a unity of experience that suggests that we are talking about the same thing, when in fact we are not. The two themes I’ve outlined can become taken for granted assumptions that develop the power to shape as well as to describe the social world. Therefore, in explaining my experience and my views here, I’m trying to challenge that assumed commonality of experience by being explicit about what I mean when I talk about “work” – and why this discussion matters so much to me.

And as with so much in this blog (indeed as was its original intention) – I know that I am writing here about well established social debates, and that the position I’m taking is rooted in those that are already well rehearsed in sociology, philosophy, anthropology, politics, I’m not trying to claim originality in terms of those debates (you can probably spot the influences – Marx, Geertz, Hochschild, a bit of Gilbert Ryle) … all I’m trying to do here is to contribute my own (necessarily autistic) perspective.

My Experiences: “Work” in Education

I suppose as with everyone (or, I guess, the vast majority of people in our society), my understanding of, and relationship with the concept of “work” began when I was at school.

In primary school, “work” was easily identifiable, and was clearly labelled in everyone’s talk – we had to do “work” and then after that, we could do something we wanted (though this definitely wasn’t expected to be more work). This distinction didn’t really seem to cause other people any problem, and it certainly went unquestioned, but for me it was problematic – activities that came under the heading of “something we wanted”, that were supposed to act as an extrinsic motivation for doing “work” (and that began to establish the distinction between “work” and “life”) were as follows:

  • Sit next to your friends (I didn’t have any)
  • Choose a ‘fun’ activity (but this cannot be the same as “work” – and neither can it be obsessively lining things up, sharpening coloured pencils, sticking your fingers in taps to experience the sensation of the water, or putting books in alphabetical order – those things are just weird).
  • Extended break time (See the first point in this list – extra break time equals extra confusion and loneliness to be survived).

I wanted to work because I enjoyed it. I absolutely loved learning about history, about religions and ethics, about geography and science – and mostly about language (though never about maths – maths is in fact, always, without exception, “work”!) So right from the start my relationship with “work” meant that I was being different from “normal”. I don’t want to say that I was being different from the other children around – there is a strong likelihood that other children might have felt similarly, but the system was set up in such a way that there was a definite “normal”, and going along with the group, and with what was “normal” was advantageous, so I never got to know if others felt as I did.

Then I got older, and I still loved “work”, but my relationship to it took on a different quality. I was deeply, deeply miserable. The world around was hurting me, and I in turn was hurting myself, and I hated everything about school – except “work”. “Work” was what made it tolerable because “work” (the stuff that happened in classrooms) was pleasurable – it didn’t help me to fit in, because enjoying “work” (and being seen to be good at it) doesn’t go with the script – it doesn’t fit well with the competitive, zero sum theme that I mentioned above – so the script dictates that the way to fit in socially is to complain about work and imply that you’re keen to avoid it (as training for an adult lifetime of alienation).

But I couldn’t give up “work” in order to fit in. I just didn’t have it in me. When you’ve experienced the exquisite elegance and sheer poetic beauty of German syntax for example, and when you’re using the technical skills to actually create that beauty – or when you read something and it speaks to you, and those “penny drops” moments happen, when something shifts in your understanding, and the learning you’ve managed through “work” has brought you to a new relationship with the world – why would you give that up? And why is it defined as “work” – as something to be got through so you can get on to the good stuff? Funnily enough, my obsession with German grammar features in my autism diagnosis. I wonder whether all obsessive interests would have been treated equally here (A sports team? One’s own children?) or whether the division between “work” and “life” actually plays a part in how obsessive traits in autism diagnoses are constructed. I don’t know the answer to that – but I’m wondering.

I remember vividly at the age of sixteen (peak social misery as far as school was concerned) deciding that I was going to stick with “work” over “being popular” because “work” would stay with me longer than school did. What saddens me is that that had to be a choice.

“Work” outside of education

So, having done school and university – and via some jobs that very definitely were “work” (and required financial motivation for me to do them), I got to be properly a part of the adult world of “work”. For me this meant, and I think for me it HAS to mean, spending my time doing something that is:

  • Both intrinsically rewarding (I just can’t give up that ‘high’ of learning through “work”), and –
  • That seeks to make some kind of difference in the world (I guess I just don’t want other people to be as miserable, lost and lonely as sixteen year old me).

Those are what I care about when it comes to work. Those are the things that have to come first, and that is the script that I’m working to when I talk about my own adult experience of “work”. I’m not naive or stupid enough to take the financial aspects of “work” out of the equation – society is set up so that financial survival and work are intrinsically linked, and of course I need a certain amount of money to survive – but having done work that has made me ill (and that was comparatively poorly remunerated anyway), and having been sick and unemployed I know a lot more about what makes me tick. I know the place that passion and obsessive drive have in my life, and I know that I can’t function without them – no matter how great the financial reward.

None of this sounds particularly problematic – I could quite easily just carry on working to my own agenda, and doing my own thing.

But the problem comes when my script doesn’t fit with the scripts of others.

I’ve felt this mostly in jobs where I’ve been told by managers that I’m working too hard (when in fact I’m often just keeping quiet about when I’m NOT working because taking a nap or going for a swim in the middle of the afternoon to give your brain a rest have no place in the world of 9 to 5). When I’m told that my working differently – particularly sending emails “out of hours” (which are actually my best times for getting things done) is unfair as it puts pressure on colleagues because I apparently give the impression I expect them to respond “out of hours” (I’ve never said that), and it might create for others a false expectations about our service and what it offers.

The thing I hate most though, is how the script of “work” as being about career, about progression, about financial success and about status commodifies obsessive passion. I hate how when I was enjoying “work” at school this was interpreted as me trying to be better than everyone else. I don’t want to be better than everyone else, I just want to live alongside them and do my thing. And how in adult life, when I talk about “work” in a joyful way, this is either just seen as odd, or is interpreted as me doing what I’m doing in order to try to gain favour with those in power, and to get ahead and achieve status. The status parts of PhD make me intensely uncomfortable for that reason – I don’t want to be noticed, I just want to do what I’m doing because it’s fun and I care about it. And I get really uncomfortable talking about being passionate and exposing this in an institutional context, because it feels like to do so makes it somehow less – like expressing it makes it part of that commodification, and it’s too important for that.

I want to be able to do my work in its own terms – in the same way that it’s possible to take delight in swimming without striving to be an olympic champion. That’s my script, I know for certain that it won’t be the same as other scripts, but I offer it so that whoever reads this blog can compare and contrast it with their own scripts, and see how we fit and how we differ, and what this might mean for how we can “work” together in our shared world.

So, what now?

As with so much in life, I don’t know that I have any definitive answers for social change beyond what I’ve expressed here (if they were so easy, they’d probably have been taken care of by now). I do certainly recognise that need for change at a societal level. I’m well aware that the neoliberal capitalist society in which we live can be – and is, in far too many cases – abusive, exploitative and cruel, and that the fact that I’m not working to this script doesn’t make it any less real in the lives of other people – but I think that locating the search for change within the individual (“you work too hard, you need to change your behaviour” – or “you are not working hard enough/properly – you need to change your behaviour”) and then setting individuals against each other (“you working like that creates unrealistic expectations about our service” or “you working like that is not fair on others who have children or other caring commitments”) is not the best way to challenge that abuse.

In much the same way as I argued against the individualisation of “Imposter Syndrome” (here) I think that it lets the systems and structures that drive this abuse ‘off the hook’, it commodifies and then devalues passion, and in my own case, as my ways of working are so inherently linked to what society understands to be my autism, this individualisation actually contributes to my disablement.

All I can really do with any certainty here though, is emphasise how important this debate is to me. At the moment, my PhD and this way of working are giving me so much –  opportunities to do things that I care about hugely and that feed my passions, but also making me feel that it might be alright for me to “be me” – that my obsessive intensity isn’t automatically something problematic to be hidden, fought against or laughed at, but that it might actually, truly, really be used positively without being twisted and weakened. This feels tentative and uncertain, I’m still not sure I quite believe and trust it, and I certainly don’t want to negatively impact on anyone else by being in this position, which feels like my own personal liberation – but it’s such a powerful thing, I don’t want to lose it.

The Blog and the PhD – why I can’t do one without the other.

I’m writing this post to try to explain what blogging means to me.

One of the things I’m really thinking a lot about just now is how the same words/actions/practices can have very different meanings to those who engage in them, and that often we might spend time and effort trying to ascertain the ‘right’ meaning, without thinking and reflecting on different perspectives and trying to understand them in their own terms.

I know that people blog for lots of reasons – sometimes as a way of engaging with an interest or hobby to take them away from pressures they experience in everyday life, sometimes to raise awareness of an issue about which they feel passionate, sometimes to engage with other members of a specific community. And I suppose to an extent, all of these reasons apply to me too, but I’m learning that there is so much more to my experience with this blog, and what I’m getting out of it – particularly in terms of its relationship to my PhD, and I want to share this here.

I also want to speak AS A PHD STUDENT, because I think there might be a tendency to think about writing a blog as something that is separate from, and that detracts from the process of “proper” academic writing for a PhD. So I want to share that for me, I feel the experience is actually quite the opposite.

Why did I start this blog?

The short answer to this question is – “because I had something to say”.

What this means is that there were ideas, questions and concerns running around in my head – things that were making me confused, troubled, angry and challenged and that I just couldn’t leave alone – they were also things that were not part of the focus of my PhD, and I was getting really concerned that I was being far too obsessive over those and should just switch off from them, leave them alone and get back to work like a “good PhD student”.

One of the stories I was telling myself about this was “you’re being obsessive – problematic obsessions are part of autism, maybe this means that your being autistic means that you can’t be a good PhD student”. I don’t think this now, but it was a powerful feeling until recently and a source of real anxiety – which in itself is something that I think has tremendous power to prevent productivity (in a pleasingly alliterative fashion.) And I mention it here because one of the things I’ve been exploring with this blog is how the ways in which autism is talked about in society (discourses) can actually be just as disabling, if not more so, than anything that autism actually is or might be.

So in those circumstances, it may have seemed easier for me to tell myself, and to be told by others, that I needed to leave this stuff alone. That the posts in this blog, and the endless streams of consciousness of which the material I write here is a very small, very measured part, are not my “proper” work and are taking up too much of my time. People have told me this before when I’ve been thinking about things that are important to me – and it is certainly true that none of us has infinite time, and there are things which must be done and must be prioritised – we all to an extent have to work with what we’re given in that regard.

But I honestly don’t think I could have done that.

And it would be easy to frame that statement in terms of autistic obsessions too, but don’t we all have things in life that matter so profoundly that we can’t leave them alone? And don’t some people manage to learn from those things and use them in their work to really powerful effect? I don’t know for certain yet if this is possible for me, but it’s definitely something I want to try to achieve, because trying that seems a better option than collapsing in a heap of despair about my broken brain and how it’s ruining my life again.

So what was the problem? What has the blog “fixed”? 

Well, for me, this blog has given me a means of self-expression without being scared, and that is a powerful, powerful thing.

I honestly don’t know how I got to be so scared.

I certainly didn’t start off that way. I started off as a child who read obsessively, who questioned everything and who always wanted to know more. At home this was met with an endless supply of books, straightforward answers to any question I asked, and encouragement to go beyond what I learned in school and try to experience the world for myself (lovely trips with my mum to build on things I’d done at school). Very, very privileged.

But the trouble is that asking questions just because they pop into my head, and wanting to discuss certain topics in public (because they were interesting, important and meaningful even if – or perhaps especially if they were socially ‘taboo’), and saying when I thought things were wrong, also got me some other labels – so I was “outspoken” and “blunt” and “tactless” and I didn’t think of others, and I challenged authority, and then I was ‘impaired’ in social interaction. On two occasions in two different schools a teacher told me in front of the class that my writing was brilliant but she wasn’t going to read it out (as she was with the work of other pupils) because it was about a topic that “we don’t discuss” or that “might be shocking”.

And I internalised the message that these things I was interested in, and these personality traits were BAD and had to be repressed, that I was BAD and had to learn to perform in order to be socially acceptable. None of these things that I thought, or that I was, were “good” and I wanted to be “good”. This meant that my focus shifted profoundly to “trying to get it right” – trying to be acceptable to other people.

I felt ugly and stupid and wrong and broken and weird, and like the only way to survive, and to stop others hurting me, and me hurting myself, was to keep quiet about myself, my views, my feelings because these were so obviously different from those of others that they must be wrong.

And as you might imagine, this is not the strongest, most desirable or efficient position to be in if you’re trying to learn and to do academic work. It put me “on the back foot”.  As I already thought that what I felt and said were wrong, anything I wrote academically also felt wrong almost before I wrote it – and writing became an exercise in trying to please others, rather than trying to express myself and my thoughts. It was an exercise I was quite good at, but it was unfulfilling. And as I already felt stupid and lacking because I couldn’t make myself think like others, rather than opening my eyes to new possibilities and ways of thinking, reading things that I didn’t already know just served to confirm my stupidity. A long, long way from innate curiosity and a passion for reading – and unhelpful, stunting, limiting and unproductive. Thought processes like these become prisons that shut you off from so much of the beautiful stuff in life, and I feel now like I’ve missed out on a lot. I’m desperate to catch up.

I don’t expect that this will necessarily make sense, and I certainly don’t seek to justify thinking like this. It is what it is – or maybe, it was what it was.

I also don’t know why it happened like this – I’m not trying to blame anyone else for the fact that I picked up this message – a lot of it was given totally unintentionally, and that which was intentional was well-intentioned, and I’m also refusing to blame myself for being weak. It is what it is, and we are where we are – and part of me getting beyond this to where I’d like to be, is about being straightforward about things that feel painful and shameful. Naming these experiences takes away their power, even if they can’t be fully explained.

(I also need to be clear here, that I’m talking about ‘me’ not about ‘autism’. What I’m saying will speak to the experiences of some autistics, and not others – but it will also surely speak to people who are not autistic. It’s really important to me that my words be taken as mine – not as some “account of autism”)

So how does the blog help?

This is possibly going to sound quite lame, but it honestly feels like this blog has given me a “voice”.

To be clear about this – I always had a voice in a physical sense. With the exception of moments of extreme anxiety, I am a (very) verbal person, and I’ve been writing for work, and in order to achieve academic qualifications for a long time. But there is a difference between doing these things and having a “voice” – as in, saying something because it is right inside your being, and you feel it with every part of yourself and it is your truth.

I’d lost touch with much of what that is for me, and it was making the PhD process really difficult – I was making it difficult for myself because I wasn’t in touch with, and wasn’t drawing on myself, my voice, and what I as an individual could offer to the process. I was thinking I was stupid and worrying about having those suspicions confirmed. I wasn’t feeling it.

But now, because I’m blogging, and because I know I have this place for self-expression, I’m thinking and feeling things all the time. Sentences run through my head constantly, and now I have a reason to shape them and to really work (and play) with them – interrogate and challenge them until they take some kind of useful form. I know that I can put them down here and they will be safe and contained and “real”. I don’t need to run away from them so I can work with them and learn from them. And this – not just the blog itself as a physical (virtual?) entity, but its place in my life and in my thinking – is helping me to know who I am, and what matters to me. I’m getting in touch with the themes that make up my position in the world and really learning what I stand for.

The other powerful part of this experience is that through this blog, I’ve engaged with others, and people (some of whom I know and whose opinions I care about) have engaged with my words. They’ve taken them seriously and valued them – including questioning them and in so doing they’ve helped me to question them and move on. But they haven’t laughed at them. They haven’t laughed at me. They haven’t told me I’m weird and they haven’t said “you can’t say that” or “we don’t talk about that.” And this is giving me freedom to write with my “voice” academically too. Now, the sentences for my PhD are starting to pop into my head without being forced. I’m starting to get at what I want to say, which is exciting and exhilarating. And that’s why I think that although this blog won’t feature as part of my PhD, it’s going to run invisibly though it as the driving force that makes the “proper” academic words flow.

The blog may (does) take up some time, but it’s making me unafraid to learn and to question, and it’s making me want to write. I don’t see how one could do a PhD in any other way.

 

 

 

 

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’.

 

“I can’t do this bloody PhD. I’m too bloody autistic and too bloody stupid.” Doubts and Hope when Identities Collide.

I started writing this post earlier in the week, when work was feeling hard, and I was feeling pretty low. I thought I knew what I wanted to say here – but then this weekend, a ‘thing’ happened on Twitter that has made me rethink how I feel and has very much reshaped this post.

The ‘thing’ was a conversation among autistic people under the hashtag #illogicalsocialrules. I found it this morning and it’s been quite powerful in helping me to rethink how I see myself as an autistic PhD student studying “social”. So I want to explain why.

Firstly though – the background.

The title to this post is what goes through my head whenever anything feels difficult – when I can’t say exactly what I want straight away, when I feel overwhelmed, when doing a PhD feels like eating an elephant. It’s tricky to explain, and probably falls into that category of “things I feel I can’t say”, because it seems like everyone finds doing a PhD difficult at least some of the time. There’s loads written about ‘imposter syndrome’, and loads of sharing in departments and on forums, about how feeling like you can’t manage, feeling isolated, feeling like an ‘imposter’ is totally ‘normal’ and to be expected. I know the intention of all of this is to be helpful, but as with so many things in autistic life, being told ‘it’s normal’ and ‘you’ll be ok’ doesn’t get at the problem, and actually shuts down any real discussion of the situation. So I need to try to explain how this is for me, and where I think autism fits into this explanation.

The thing about autism as I experience it is that it’s about being neither one thing nor the other.

I have a diagnosis that lists all of the things I can’t do (that I’ll share on here when I finally track down a copy). A neatly typed bundle of failures that is supposed to help me. I have gone through all of the clinical literature and read the  articles that appear almost daily, discussing all of our deficits and all of the hopes for a cure for our muddled, dysfunctional thinking. I know all of the theory around weak central coherence, poor executive functioning, rigid thinking, poor planning and problem solving, deficits in social communication, poor receptive language processing, sensory dysfunction. And I experience all of this – that’s how I come to have the diagnosis, that’s how I “count”. (The current DSM criteria for Autism Spectrum Disorder are here if you’re interested – so many failures and abnormalities!)

I also have years and years of being immersed in an autistic community of firsthand narratives detailing what we can do – sharing successes and proving how ‘normal’ and ‘capable’ we can be. I’ve read the articles on ‘5 ways in which my autism helped me get my PhD’, and all the stuff on how our neurology is a ‘natural human variation’. I’ve seen a huge increase in recognition of how autistic women live – and that feels very different from when I was diagnosed, very positive progress.

The thing is though, that none of that helps when I doubt if I can do my PhD – or when I doubt myself more generally and feel like a broken human being. All the deficit stuff, the “proper” clinical stuff is so strong and dominates my thinking – it feels so authoritative, so confident, and it fits with how much of a failure I feel. So it confirms it. I feel like an imposter, but not just that, I feel like an autistic imposter. How on earth can someone with all of that long list of deficits possibly think she can do a PhD? Every time I think about it, the conclusion I reach is “Maybe this is just as far as an autistic can get – maybe autism just makes this impossible”. And the thing about this type of thinking is that it becomes a self-fulfilling prophecy – the doubting robs you of your productivity because being so afraid of confirming your failure means that you can barely bring yourself to try.

But I don’t WANT to accept that. I refuse to accept that – because when work is good (as it is just now) it’s the most amazingly, addictively good thing in the world and I will not give that up.

So how does a twitter hashtag like #illogicalsocialrules help with all of this?

Well, to be blunt, it helps me find my place, and it helps me to identify my tribe. My own interest in “social” has sat uncomfortably with an autistic identity that risks erasure if it is seen to be too aware of other people, and of “social”. One of the reasons why those “5 reasons why my autism has helped me get a PhD” articles don’t help me is because they tend to orient towards stereotyped forms of autism that I don’t have. They describe highly routined autistics working in maths and science fields in ways that would make Rainman proud.

But that is not me. My passion is language – all kinds of languages – words, words, words. And how words happen between people. I love watching people ‘act’ in order to be ‘social’. Sometimes it grates because I’m so aware of it and it looks fake and cringeworthy, but it’s what I’m tuned to. In my own language and in other foreign languages – I love spotting patterns and nuances. I’ve had to. But this is just so “unautistic”. We’re supposed to have deficits in social communication, so it’s always felt like I have to choose between an autistic identity (which I need, when the sound of a hand dryer paralyses me, or I’m terrified about going somewhere new because I don’t know what to expect), and an identity that loves language and observing and dissecting the “social” (though might not always “do it right”).

And right there – in that hashtag, there’s a whole group of other autistic people doing exactly what I do. Being autistic and examining the social – sometimes amusingly, sometimes critically, but USING the ‘outsider’ position, and all of the observations that go along with that as a SKILL to pick apart and analyse that which I guess many neurotypicals would take for granted because they’ve never HAD to study it.

So maybe it is entirely possible to be autistic, with all that that means, and to be good at observing and studying the social. Maybe those two can go absolutely, happily, hand in hand. And maybe it’ll all be alright after all.