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.

What’s so special about autism?

Well … this is a big blank screen to fill.

I’ve asked myself a question, so now I need to answer it.

It’s a question that gets asked in hundreds of ways in hundreds of situations (both actually “asked” and, maybe more often, clearly hinted at – you don’t have to “ask” something to ask it) to I guess pretty much any of us who dares to discuss autism, especially from a personal/identity perspective.

  • “So how does it affect you?”
  • “You don’t seem autistic – how would I know?”
  • “So, if you had to explain to an alien who visited the planet what autism is, how would you answer?”
  • “It just sounds like mental health to me”
  • “Isn’t it over-diagnosed these days? Aren’t we all really a bit odd?”
  • “But aren’t we all a bit disabled by society?”

One of my favourite “off the cuff” responses (that I think I got from Zaffy Simone), is that it’s being a Mac Operating System in a Windows world (as in, our brains are running different computer software that overlaps very closely with that of the majority, but just isn’t quite the same in some respects – and works differently some of the time).

And this fits with what some of the research says about autism – the neurological differences (larger amygdala, fewer connections with the prefrontal cortex, increased plasticity with age – the opposite of the typical population), and the range of genetic differences (which is where I “fit”).

And these differences mean that we get grouped together, and categorised under the heading of “Autism Spectrum Disorder”.

This all sounds really straight-forward … except, of course, that it’s not.

Because (notwithstanding the heterogeneity in terms of presentation of that diagnostic categorisation) there’s a difference between describing a diagnostic category, and forming one’s social identity. And if we try to achieve the latter by way of the former, we run into problems.

One of the problems, I think, is that if people are interested in my identity, and in how I live my life as an autistic (Aspie), they want to know about the effects of my “condition” on my everyday life. What is it that I do/don’t do/can do/can’t do? What’s “the thing?”

But of course, it’s not that straightforward – because in terms of “behaviour” or “everyday life” or “experience”, there’s not a single thing that I might do, not do or not be able to do, that at least some other person in the world (who isn’t autistic) might do, or struggle to do to at least some extent – in some ways, and in some circumstances.

Autism isn’t behaviour.

And it isn’t consistent – what I can do today may bear no resemblance to what I could do yesterday, or what I can do tomorrow. My “different neurotype” – or “Mac Operating System” is in a really complex relationship with the (social) world around it, meaning that sometimes I can be so flipping “normal” that I even surprise myself – but then on another occasion (in seemingly the same circumstances), I might find myself completely unable to function – totally unable to speak, shaking, crying (I hate leaky eyes), tapping, flapping, rocking, spinning, absolutely locked down inside myself. Looking “autistic” and feeling intensely exposed, vulnerable and embarrassed. That’s not fun.

Most of my life of course hovers somewhere along a continuum between those two states. And (obviously) this is quite similar for most people – and some people will come closer to my experiences than others.

But autism isn’t behaviour.

So people think they get a piece of it. People think they get to own a little of it. “Aren’t we all a little bit autistic?” Anything I say becomes “Oh, but I do that too” or “Well yes, that’s hard for lots of people. It’ll get easier as you grow up.” Or “ If you try doing this … If you try a bit harder…” And we go to such lengths to try to “prove ourselves”, we strip ourselves bare in front of others in the name of “awareness” or “advocacy” or “education” – but the words are never enough.

And of course, all of the bad things that happen to us – all of the abuse, the assaults, the violence, the lethal “cures”, the stigma, the stereotypes, the discrimination, the prejudice, the undermining, the being taken advantage of, the being blamed, the self-doubt, the feeling like no one wants you and you just don’t belong anywhere – that all happens to other people too (in various ways, and for various reasons). The world screws up autistics, but it screws up other people too.

Autism isn’t behaviour – and it’s also not social experience.

So what is autism?

It’s all of the above, and a whole lot more. It’s all the behaviours and the coping, or not coping, but in random, unpredictable and “inappropriate”ways that can’t be explained.  It’s all of the hurts and the horribleness – because of who we are – and who we are is autistic. That is what it is. It isn’t a behaviour – it’s not something you’ll ever see and identify and think – “that’s what autism is – autism and nothing else”. It’s living in an alien land.

You’ll never “get it” by watching sensory simulation videos. You’ll never “get it” by reading about it. You’ll probably never “get it” by talking to us. Sometimes there just aren’t the words. And everything can be explained away anyway. It’s visibly invisible.

And that hurts – because not being understood hurts. Not feeling like one thing nor the other hurts. Not feeling like your feelings are “proper” hurts. Not feeling like a “proper” version of anything hurts. Not feeling like a proper person hurts.

Sometimes I feel like I just want to pretend it doesn’t exist. Like if it’s so difficult to describe, maybe it’s not really anything after all. Maybe I could just be “normal” if I forced myself, if I tried harder. I can “pass” a lot of the time after all. Maybe that’d be easier overall (to be honest, I’ve tried it too – it didn’t work). And maybe if it looks so “little”, I have no right to make a fuss anyway – other people have proper problems (I really worry about that last one – except, I don’t see my speaking out about autism as being just about me – and lots of autistics definitely, undoubtedly, indisputably DO have very, very proper problems).

But maybe I could be a quieter autistic.

I don’t think I can do that though. It’s not in my nature. And besides, it’s too risky for when I personally can’t cope, and it’s a betrayal of the verbal privilege that I have, that many autistics do not.

So I’ll probably carry on looking for new ways to “speak out” (that do tend, mostly, to be more “cheerful” in real life!) – not because I think that people will ever “get it”, but because visibility is an end in itself, and because visibility matters. Just maybe requires more backbone.

Onward.

Politicised Pathology

I wrote this the other day because it expressed how I felt. I’m putting it here because I want to be heard. I don’t feel the need for people to try to make me feel better by talking me out of these feelings. I’m not interested in “but the world’s not really like that”.

This is what it is. It’s also my reason for caring about all the things I care about in life. These are feelings that I can use – but I have to put them out there first. I have to try to make room for them.

I’ve come to realise how important self-expression is. And if I’m trying to keep quiet about the things I’ve written about here, it silences me in other areas of my life too. So writing this is about enabling me to move on with the other, important things in life.


Politicised Pathology

Rights and equality sound really nice

Great idea

It’s not me who’s fucked – it’s the world

Bloody marvellous

My job to make it happen

I can do it. I’m “inspiring” apparently

 

But the world screams out at me constantly

And points out every way that I’m broken

Every single bloody failure

And it all feels so big

And I feel so bloody useless

And I hate myself so bloody much

Everything about me is so bloody wrong

I make mistakes. I make others feel bad

 

And I’m the bloody needy one

“Try to see yourself how others see you, we think you’re wonderful”

Do the work

Fix yourself

But others don’t bloody see me

They see me pretending to be bloody normal

Bloody “passing” is bloody crap sometimes

 

And when the mask slips and I can’t be normal, I have “needs” and require “accommodations” and “adjustments”

What’s “equal” about that?

Such a bloody problem

I’m such a bloody problem

 

And I tell people about stigma

And about self-loathing

And they say I’m “wonderful” and “inspiring”

“We hadn’t thought of that” “You’re a great teacher”

I’m actually bloody angry

But when I dare to open my mouth as “angry”

I’m “defining myself as different”

And feeling this disgusting is my fault – My choice

 

But then, I’m sick of people trying to fix me too

“Cure” can take a million tiny forms

Where does that fit?

 

Normal and equal

Or different and vulnerable

Choose

Fuck that

‘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’.