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.

Anxiety

This post is ‘in the moment’ and it’s ‘of the moment’. It’s painting my feelings with words – making them real, making marks with them and taming them.

There’s no rhyme or reason to this current state of being. A day of love and sunshine shouldn’t end like this. There’s no trauma, no tragedy. Nothing tangible or named to rationalise and fight against.

It’s a battle, but who is the enemy?

The enemy is a shapeless, shadowy force that is making my stomach churn, and my fingers and toes into ice-cold. It’s making me stare ahead while the world goes past at high speed, tipping forwards, wanting to fall into the void. It’s making me flick my fingers in front of my face and clap my hands in front of my eyes like a seal, although I know people can see. It’s making me stutter and repeat my words like I’m tripping over them. It’s stealing my eloquence.

It’s dark outside. Every light is on here, but it feels dark inside me too. Dead animals by the roadside. Fear of losing control. Fear of failure. Fear of loss. Fear of being alone. Feeling very sick. Memories of feeling shameful, of feeling ugly, growing bigger like shadows on the wall and reaching out to wrap me up. Memories of feeling small – feeling vulnerable, feeling stupid, feeling afraid.

So what can I do?

I can breathe. I can tell myself I’m strong. I’ve been here before. I used to be a resident but now I’m just visiting. I know this will pass. The sun will come out and all this will fade.

I may be anxious, but I don’t need to be anxious about being anxious. It’s okay. It’ll pass.

I can work. Just an hour – exactly an hour, timed to the minute. It’s late. No more than an hour. But I can put neat words on a page. I can tidy and order piles of paper. I’m not spaghetti. I’m straight lines. I can make order out of chaos. I can make neatness and I can wake up in the morning and think of the tidiness. Think of what I achieved.

I’m strong. This is not unfamiliar territory. I used to live here, but now I’m just passing through. I can live and thrive and love life because life is good. Anxiety is a jealous, greedy parasite, but life is good.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

“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.

 

 

 

 

‘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.

 

“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.

 

 

 

 

 

 

 

 

 

 

 

Autism – a Diagnostic Quest (Stage 2): Gatekeepers

So, last week I began to write about my experiences of Asperger diagnosis (it’s here if you missed it.)

I wrote about how painful and frightening the world is if you don’t know who you are – how you can be caught between “normal” and “freak” and not feel like there’s any way out, until the possibility of this word comes into your life that suddenly makes sense of it all. How suddenly “autism” can switch a light on and offer possibilities for understanding and validation that you didn’t know were there before.

I wrote about the process of beginning to research the word “autism”, and how much I needed it – needed to know.

But it couldn’t stop there. For some people that is enough – they can read and study and decide that they are enough of a “fit”to be able to assume that identity for themselves, and they are quite satisfied with self-diagnosis. For me that wasn’t an option though, for two reasons – the first was quite pragmatic in that I was struggling with academic work and needed a formal diagnosis in order to access disability support. But fundamentally, I needed external confirmation. This was so, so important that it couldn’t rest on all the contradictions and subjectivities that I’d found in the literature that I’d begun to read about autism – the bits that fitted me so well they could have been written about me, but then the bits that were absolutely the very opposite of everything that I am.

So,  I began to try to access diagnosis. As was routine at the time (though I think other options are beginning to be available now), this began with a visit to the G.P for referral to a clinical psychologist.

At the time, it felt like autism was a “thing” that was fixed and measurable and could be detected by a clinician as if they were doing blood tests or x-rays. I wanted it to be that simple. I really thought they had that power – so probably, in our interactions, I gave them that power. And that’s why I ended up feeling so let down.

It took two G.P. visits to get the referral, and they were both unremittingly awful.

I don’t remember much of the first part of the first appointment – I think at that point, I was still thinking that this was going to be easy – that the G.P. would know about autism, would have read all of the stuff I had, and a whole lot more. I think I explained what I wanted, and a little of why, but to be honest, that bit is all quite hazy.

The bit that stands out – that still burns and makes me feel prickly – is when he told me that he wasn’t going to refer me, as it was highly unlikely that someone without a learning disability, someone at university, would have Asperger syndrome.

“I think they are usually learning disabled.”

The surgery was a mile away from home, and I cried for the entire walk back. I usually try really hard not to show emotion in public – especially crying, as this generally leads to questions that are hard to answer. But it was so incredibly painful to be so sure that the G.P. was wrong. I’d found many contradictions about autism, but the one thing that seemed fairly consistent was that it was entirely possible (and indeed very common) for people with Asperger syndrome to be of average or above average intelligence (whatever that means). I KNEW this – I had the knowledge and the G.P. didn’t, but I was a teenage student and he was a doctor and I was utterly powerless.

It’s probably another indication of how important this was, that I carried on. It might have been easier to put the idea back in its box and carry on trying to fit in with the “you’re normal, you’ll grow out of it” narrative. But I couldn’t stand failing at that anymore, so I carried on.

This time, I went to the university disability support service and spoke to a support worker. They were really helpful, and this meant that the next time around, I was able to access private diagnostic assessment as it was paid for by the university (Access to Learning Fund – this has been ‘replaced’ now, so I don’t know if I’d be eligible today) but still required a G.P. referral. So back to the doctor –

I remember a lot of this appointment really clearly. I was waiting in the waiting room for twenty two minutes after my scheduled appointment time, before my name was called. I’m really not great at waiting if I don’t know the exact reason for the delay – I get really fidgety (not sure if it’s panic or anger, I often can’t really tell the difference). So when I got to see the doctor, I already felt sick and like my pulse was racing – then two things happened that made things worse, and these might seem odd to those who think that autism means not being able to understand social rules in any pure sense:

Firstly, the doctor didn’t give any account for the delay – no reason and no apology. And that’s hard, because lateness is not what’s supposed to happen, and it should be accounted for.

Secondly, he didn’t make eye contact when I walked in because he was reading notes and didn’t look up. Now, I’m actually fairly “typically autistic” in finding eye contact intense, painful and violating (as if someone’s trying to touch you in a ‘private’ place), and I have all the usual strategies for looking at foreheads, interesting jewellery, noses – anything to make it look like I’m ‘doing’ eye contact while I’m not. But the thing is, when you’ve been told so many times, for as long as you’ve been able to understand, to “look at me when I’m talking to you”, it becomes an important rule – you EXPECT eye contact, even though you hate it, so when it doesn’t happen, it spoils the script and you don’t know what’s supposed to come next.

So, I was feeling quite confused and stuck when he asked “How are you today?” This felt strange because it wasn’t the type of question I was expecting – something more functional would have helped, I think – “What is the issue?”. “What can I do for you today?” etc – but “How are you?” is one of those types of question that people ask for social reasons and it doesn’t usually demand an accurate answer, so I couldn’t work out conversationally how to get from that to what I needed from him. This led to what I generally think of as a “rabbit in the headlight” moment – I couldn’t work out what to say, I felt hot, sick and my pulse was racing. I didn’t have the words, so I didn’t speak. And I hate those moments, because conversation has its own rhythm, and if you miss your turn you have to account for it, which means finding more words, when words are precisely the thing you are lacking – panic leads to lack of words which leads to more panic.

A thing worth mentioning is that people had told me before the appointment (having heard about the first disaster), that it might be a good idea to make notes to take with me, to help me get my point across. And I had notes. The trouble was, that I had thirteen pages of notes from all my careful research – so much distilled information, so many hours of work, so much of my heart in it,  but absolutely no idea of what was important and what wasn’t. And thirteen pages of notes are in some ways less useful than no notes in the context of a five minute G.P. consultation. What I would have needed was someone to make notes for me from all of the masses of stuff in my head – something I can do for others, funnily enough, but not for myself.

Anyway, this time, I already had funding for the assessment through the university, so the G.P. agreed to make the referral (felt like he was ‘rubber stamping’ it). To be honest, I’m sure there was more interaction, but I can’t remember it all. And I think it’s significant of itself, that what I’ve written is what has stayed with me – that’s the stuff that hurt so much it left a lasting impression.

An ‘Autism’ thing?

One thing that comes to mind, having written this, is that it’d be quite easy to frame many of my issues with interaction in terms of the social-communication ‘deficits’ that are said to be inherent in autism – rigidity, problems in planning and problem solving, literal receptive processing… I could easily adopt that script to give my experience the legitimacy of a clinical diagnosis, but I wonder how other people feel in doctor-patient interaction, and whether/how the need of the patient to access what is within the doctor’s gift, and the power imbalances in clinical relationships affect neurotypical people too.

 

 

 

 

 

 

 

 

 

What’s in a Name? – My Thoughts on Autism Terminology

What’s in a Name?

I said that this isn’t a blog “about autism” – but as it is a blog about an autistic PhD student’s perspectives, I should probably explain a little about the language I use when talking about autism.

I really love words – probably partly because so much of my trying to understand myself has been rooted in a search for the right words. Words are powerful.

Apart from anything, the words we use to describe autism and the preferences of the different people and groups affected have been the subject of so much discussion recently (See here for National Autistic Society information on “Describing Autism”). This stuff matters – but it’s contested, so I need to be clear about my thinking.

Autism/Asperger Syndrome

You might have noticed that I use the terms autism/Asperger syndrome quite interchangeably – including when referring to myself. (My specific diagnosis is of Asperger syndrome).

There are two reasons why I do this:

  • Firstly, to acknowledge the inconsistent and variable ways that these terms are used in practice. While the only reliable distinction between the two is one of the development of expressive language (people with Asperger syndrome are supposed to learn to speak at the same time as, or ahead of typical children, whereas other autistic children are said not to) – my experience of finding out about the diagnostic labels applied to others suggests that there is massive variation in how these labels are applied in practice by diagnosticians – meaning that knowing a person has “Asperger syndrome” or “autism” doesn’t tell you much about them, and yet the labels are used as a way of excluding people from services and support, as though they were some kind of consistent, objective “truth”.
  • Secondly though, I have to admit that I like to ‘play’ with the words, and the ways I can make people think about them. If I say “autistic” about myself, and someone tells me I “can’t say that” because I’m too able, then I refer to myself that way all the more to make a point (because telling me not to do something has one guaranteed outcome). I also choose my language to challenge views, such as that Asperger sydrome is “mild autism”. I use Asperger though – or Aspie to identify with others if I want to show ‘belonging’ to that category, in support gs.roups and other specific settings. And I use “Asperger” if I have to disclose my diagnosis but I’m scared that people will prejudge my abilities and assume I can’t do things because of it.

That last one is tricky because it doesn’t challenge stigma, and perhaps even encourages and sustains it – but it’s about self-defence and protection, and is exactly the kind of thing that I want to be able to hold to account in this blog.

‘Person First’ or ‘Identity First’?

I agree with Jim Sinclair (2013) in having a preference for ‘identity first’ language (See here for Jim Sinclair’s “Why I Hate Person-First Language). This means that I opt for ‘autistic person’ – rather than the ‘person with autism’ formulation that tends to be preferred by professionals and families (though often not by autistic adults themselves). I can’t separate myself from ‘autism’ – I’m not trapped in an autistic shell. It runs through me like the name in a stick of rock, so grammatically separating it from me is a falsehood.

Also (and possibly more importantly) – the logic behind ‘person first’ language suggests that it is important to see the individual ‘as a person’ – but to me that implies that it is impossible to see an individual ‘as a person’ while taking into account their autism. And I don’t see how we can possibly hope to do anything about pursuing equality if we insist on separating a term from the individual. To be blunt, if you need to “remove the autism from the individual” in order to see them “as a person” I think you need to check your own thinking.

‘Aspie’

I call myself an ‘Aspie’ – as is fairly apparent on this blog. I know it’s not popular among a lot of parents/families, and some autistic/Asperger people feel that it’s ‘too political’ or associated with a kind of cult of superiority. However, it means a lot to me. It’s one autism-related term that hasn’t been imposed on me by others. It doesn’t appear in any of my diagnostic or psychological reports – the stuff that assesses my “deficits” and tries to detail my “needs”.

I chose it, I claimed it, and I’m proud that it’s up there at the heading of each page of this blog.

Functional Language

I hate functional language (where autistic people are labeled as ‘high functioning’ or ‘low functioning’). I won’t use those terms in this blog, unless referring to the words of others, in which case the terms will be clearly marked as quotations – and my aim in including them often be to interrogate and critique their use.

Quite apart from their stigmatizing effect (Can you imagine being labeled ‘low functioning?’ What on earth would that do to the expectations of those around you if that label followed you around – was in your care plans, your medical notes?) I am fairly clear, based on experience, that they are pretty meaningless. Taking myself as an example, I’m quite sure that I’d fall very easily into the ‘high functioning’ category by anyone’s estimation – I learned to speak and read ahead of typical developmental milestones and am now doing a PhD.

However, when I’m curled up on the floor crying and repeatedly flicking my fingers because the environment is too overwhelming, and I feel violated and trapped, I don’t think I look very ‘high functioning’. I certainly don’t feel it. Likewise, when I’m so scared or anxious that I can’t speak – not very ‘high functioning’. Basically, I don’t see any help in these terms, and I find them positively harmful, so you won’t be reading them here from me.

  • (I’ve come back to edit this post as I remembered that an autistic person I know actually uses the term ‘Low Functioning’ for themselves, as a way of emphasizing that being verbally articulate is not the same as being ‘high functioning’ – so I guess what I’m getting at here, is that I have a problem with functioning labels being imposed on people, as quasi-diagnostic categories, rather than with people choosing them for themselves.)

I’d be really interested to know what thoughts other people have about their identities (autistic or otherwise) –

  • What matters to you?
  • How do you decide what to apply to yourself?
  • Are there any terms you reject or rebel against?