The British Psychological Society, LGBT Rights, “Cure” … and Autism

I saw this on Twitter yesterday.

It’s an article by the British Psychological Society (the BPS) about how “UK organisations unite against conversion therapy”. The article basically affirms that attempts to cure people of stigmatised sexual orientation or gender identity have no place in civilised society. (Obviously.)

In it, Janet Weisz, Chair of the Memorandum of Understanding group, and Chief Executive of the UK Council for Psychotherapy, states that-

“Any therapy that claims to change [a person’s sexual orientation or gender identity] is not only unethical but it’s also potentially harmful.”

So far, so good.

“Therapy” that seeks to “cure” a person by stamping out “problem” behaviour is wrong, harmful and oppressive.


Now let’s think about this in relation to autism.

The cognitive leap required is not so far. People who know their history in this regard will know the relationship between the work of Ivar Lovaas with “effeminate boys” and the Applied Behaviour Analysis (ABA) practised (still – widely, and at great financial cost) on autistic children today.

ABA is a contested and controversial topic in the autistic/autism communities. Practitioners advocate and advertise it (well, they would, wouldn’t they?), parents report “success” as their child makes eye contact or asks for a drink. Success as children perform “normal.”

But let’s look at the other side of the debate-

  • Ex ABA practitioners on why they left ABA “When I started finding more blogs and articles from Autistic people describing the trauma they felt as a result of ABA, I was so horrified, I could barely finish reading them.”
  • Autistic adults summing up why ABA is abusive (including this extremely well argued and balanced post by Unstrange Mind that speaks to concerns of parents and autistic adults alike).
  • The parents of autistic people subjected to ABA writing warning letters to other parents describing the PTSD experienced by their children as a result (here)

The debate has been well rehearsed elsewhere and I don’t intend to repeat it at length here – other than to say that forced compliance (whether forced through coercive use of aversives or through “positive reinforcement”) is wrong. Training a person to behave like a performing monkey on demand, whether in the hope of changing their “inner psychology”, or to make them more socially acceptable is wrong. It teaches unquestioning obedience to powerful adults, it denies agency and it destroys trust – whether by means of carrot or of stick, it is wrong.


Now, let’s return to the BPS.

Let’s return to the assertion that attempting to change a person by means of “conversion therapy”  “is not only unethical but it’s also potentially harmful.”

Surely, the logical progression of this (absolutely correct) argument is the condemnation of Applied Behaviour Analysis (ABA) “therapies”, which have attracted condemnation from autistic people, from the parents of autistic people – and even from ex ABA practitioners.

Well, not quite.

In its Guidance for Psychologists on “Autistic Spectrum Disorders”, rather than addressing the “unethical [and] also potentially harmful” nature of ABA, the BPS not only uncritically references its use as one of a range of “interventions” to which an autistic child may be subjected, but it also advocates the “distinctive contribution of psychologists” to such endeavours (at p.4)

So there we go. Forms of “therapy” that are “unethical” and “harmful” for one oppressed group are “interventions” to which psychologists can make a “distinctive contribution” in respect of another.

This is outrageous and harmful, and if the BPS were to (consistently) engage more meaningfully and more effectively with the autistic communities about which they are so fond of producing “Guidelines”, they may learn a little about working in ways that are less “unethical” and “harmful” to those communities.

I dream of such a world.

#autisticsinacademia – A Hashtag is Born!

Just over a week ago (on 26th December 2016), I started a hashtag – #autisticsinacademia

It was just an idle tweet in reply to something that someone said to me, but it has become something that is working to put autistic people involved in academia in touch with each other, to enable us to share our successes and frustrations, and to help us to be visible in, and contribute to the wider world of academia on Twitter.

It’s a fun thing, and it’s good to feel connected.

I’ve made a Storify (that you should see here) – Firstly to collect together some of the tweets that have appeared so far on the hashtag, and secondly to show what we can achieve through Twitter in terms of connection, networking and activism.

Enjoy the Storify, check out the hashtag – and join in the conversation!

#autisticsinacademia

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

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

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

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


 

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

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

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

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

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

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

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

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

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

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

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

 

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

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

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

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

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

Firstly then:

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

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

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

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

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

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

It fails to challenge neurotypical oppression and is politically unhelpful

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

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

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

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

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

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

Frustration, shame … and doing stuff anyway…

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

Saying the “Unsayable” 

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

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

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

Frustration

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

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

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

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

 

Shame

But also, I feel quite ashamed –

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

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

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

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

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

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

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

 

The Good News

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

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

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

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

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

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

I reckon we might be stronger than we know.

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

Onward.

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

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

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


Autism is not an appendage

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

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

Therefore, when parents say,

I wish my child did not have autism,

What they’re really saying is,

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

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


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

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

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

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

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

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

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

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

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

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

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

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

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

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

Edit:

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

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

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

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

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

GUEST POST: “My experiences with veganism, being autistic and having mental health problems.”

This post isn’t by me. I’m extremely happy to be able to offer my blog as a space for a good friend to be able to write about her experiences of autism, veganism  and mental health issues while protecting her anonymity. I think her words are extremely important – and they really, really resonate with me – so it’s a privilege to be able to host them here.

She writes …

Talking about my experiences with veganism being autistic and having mental health problems, is perhaps one of the hardest things I ever had to do. There are a lot of reasons that I never intended to talk to anybody about all these things because for many (if not most people) my ideas will be fairly controversial and, perhaps most importantly, it would give them an insight on my personal life that I am not sure I am comfortable with them having. But then again, I have to tell somebody, someday… Because I am pretty sure that am not the only one struggling with these issues or thinking this way. First of all, I want to talk about why I am a vegan. Then I want to talk about how having multiple other identities (autistic, highly anxious individual, immigrant, Greek etc) highly impacted on my ability to adhere by the standards of veganism on various occasions during my life.

My decision to become a vegan was at first out of empathy (yes autistics have a lot of that, despite common beliefs). I always loved animals and I cannot see animals suffer. As many people who include meat in their diet, I did not think of the death the animal that was on my plate had to go through, or their life for that matter. I kind of knew what meat was, but I never really realised it. After all, it looks so freaking different from the whole form of the animal it was taken from (except from fish, but I always considered fish as something a little more than swimming plants for some reason) for my literal mind to make any kind of connection between the two. Interestingly, my first disgust for red meat came when I sliced my finger and removed a piece of skin big enough that you could see underneath it. I then saw my “meat” in all its bloody gore and it looked so freaking similar to the red meat I had been eating that I could not stand the mere sight of red thereafter. For a large part of my life (and despite my father’s, who grew up in an animal farm, gross descriptions of the massacre of the Christmas pig or the journey of the Easter lambs from the day they were born to the slaughterhouse) I believed that the animals that I was eating were living a happy and peaceful life in the valleys and mountains of Greece and one day the just dropped dead so humans went and picked them up much like apples from a tree and brought them to the rest of us humans to eat so that they don’t get wasted. It’s fair to say that I was pretty resistant in comprehending the cruelty that was attached to my dinner choices.

I was first introduced to vegetarianism through a group of spiritual/new age people I used to hang out with at university and their main argument was that meat affects your vibrations, as you consume all the negative feelings of the animal that you are eating. Needless to say I found that argument silly and I wasn’t convinced. Even after becoming vegan I was relatively angry at those people who used such silly arguments to promote vegetarianism, when there are so many serious and legitimate reasons for people to minimise their animal product consumption.

Around late 2011 I was introduced to the concept of veganism for the first time in my life by spending my recently graduated mostly unemployed free time on the internet following links one after the other. And I saw everything. I saw the posts. I saw the videos. I saw the death. I saw the suffering. I saw the factory conditions. And I was horrified. I was hugging my pillow and crying for days. I was emailing slaughterhouse videos to my mother begging her to not serve me meat again, only to hear that these things “only happen in America” and in Greece things are far more humane. Regardless, I started firmly believing that it was wrong of me to use and abuse any animal for my own personal pleasure. Plus, there was another big motivator: according to the internet if I became a vegan I would magically lose all the extra weight that I hated and was bullied of for all my life, the weight which, at the time, embodied everything that I hated about myself and everything that differentiated me from other people (pffff… yeah. One topic at a time). So I made a decision: after the Christmas holiday is over (because I considered it to be impossible for me to tell my parents that I am not going to eat turkey at Christmas) I would go vegan. And I did. And it lasted. For a month…

And here is the vicious circle of my eating habits as manifested by my efforts to “go vegan” and stay vegan.

  • Buying lots of vegan food and filling up the fridge
  • Cooking with the vegan ingredients and trying very hard to manage food planning on top of every other aspect of my life.
  • Having my anxiety taking over my life (as it often did and does) and failing to manage any aspect of life, let alone my food consumption.
  • Failing at eating a vegan diet, feeling like a horrible person, eating my feelings away and feeling even worse about it.

There are a lot of things that veganism made me realise about my eating habits.

I realised that one of the few ways I have to control my anxiety is eating. The other one is self-harming. I know this is going to be a controversial opinion but I consider (superficial) self-harming (aka cutting myself on the arms/wrists with a razor) to be the healthier option, because it makes more sense to me to damage my body “cosmetically” in ways that are going to be easy to heal than damaging in internally in ways that are probably be more harmful in the long term. But the problem with it is that it leaves scars. Scars that other people can see. Scars that are going to tell people things and scars that people are going to make assumptions about, assumptions you don’t want to necessarily want them to make because it feels like inviting them into your problems, even unintentionally. With eating, nobody can see you do it. You can sit alone in your room and eat to your heart’s content whatever you want and then wash your hands, brush your teeth and, unless you have been consuming whole bulbs of garlic one after the other, nobody will ever know what you did.

I realised how deeply entangled our food habits are to who we are. I realised how much culture, relationships, exchange of love and even identity revolve around food. When I first mentioned that I am going vegan to my family members and few friends, I had to endure everything from hearing that it will only be a fleeting phase that I won’t stick to, to collective verbal attacks and abuse about who stupid me and my choices are, to my grandmother’s frustration that I can’t eat her chicken livers in tomato sauce (a dish that was a really strong bonding thing between the two of us during my childhood and adolescence – and I have a REALLY strong bond with my grandmother), to my every “why do you have to be so pedantic and difficult, it just has a little bit of egg white in it” that my ex-boyfriend told me after every accidentally non-vegan dish that he would cook for me (one of the many, many reasons I was constantly told that I was pedantic and difficult). I realised the ridiculously high level of questions and unwanted communication it brings from other people, from genuine curiosity to having to hear yet another silly joke about cows’ tits and how huge they are because of all the milk.

I also realised something that should be fairly obvious: my eating habits will always be with me, coexisting with the rest of my life for the rest of my life. They were there when I was crying every day after school in my first job as a special education teacher for the way my students were treated. There were there when I discovered I was autistic. They were there when my mother used to chase me around the table to get the resignation form out of my hand when I wanted so desperately to quit, because the other teachers simply refused to listen what I struggle so much to communicate. They were there when I was rejected by the (then) love of my life and best friend. They were there when I moved to a whole other country. They were there when I did my master’s, whilst trying to get used to living to a whole other country, all by myself and not knowing literally anyone. They were there when I graduated and was making £600 a month at my first job. They were there when I had to move house, after house, after house. They were there when I was sitting on the bathroom floor, trying to think of ways to end my life. They were there when life got impossible. They were always there… And with the already very disturbed relationship I have with food as well as the ever-present anxiety that never leaves me alone and escalates to extremely dangerous heights from time to time (actually feeling like a heart attack), I tried to manage them as best as I could.

If I was ever to publish a diary of everything that I eat in a day for everyday for an extended period of time, the title people would give me, at best, is “mostly vegan”. Many vegans in particular would be absolutely disgusted by me and my inability to “stick to a vegan diet”. They would call me a bad representation of veganism, give me unsolicited “well-meaning” advice on nutrition and the effect of what I eat on my mental health, mountains and mountains of nutrition pseudoscience and about how to deal with my mental health problems or what they might mean, I would get told repeatedly about how I need to think about “the animals first” and about how they have it worse than I ever could (which, to an extent is true, chances are that I will never be tied upside down, dipped in electrocuted water and then passed in front of a throat-cutting machine that may or may not get my throat and then skinned, possibly still alive), hell, I might even get death threats, as such is the way that the internet seems to work, particularly in certain circles.

But here’s the thing: the definition of veganism is: “a way of living which seeks to exclude, as far as is possible and practicable, all forms of exploitation of, and cruelty to, animals for food, clothing or any other purpose.” And here’s my question: who gets to decide what is “possible and practicable”? Who gets to tell me how manageable my anxiety is, from their perspective of course, and how they “also had an eating disorder” but they overcame it by doing this and that magical little thing? Because in any way other than my anxiety, I have done EVERYTHING I possibly could to be the best vegan advocate that I can. I have learned to cook amazing vegan food that has left even the most hardcore of carnivores utterly satisfied. I have talked about veganism and what it means for me in every given opportunity to people I met. I have spent hours and hours thinking about what is the most effective ways to talk about these things and to who. I have read practically every single thing that there is on the internet about veganism and the vegan lifestyle. I have read practically every single book that was written on the subject, or at least added it to my Amazon wish list. In true autie mode, I thought that the more I learned about veganism, the more of a chance I actually had to stick to it one day. And therein lies an important distinction that needs to be made: my problems were never about veganism. My problems were about how I manage my anxiety and how it manifests in my life because of my individual set of traits. I know many other auties who are vegan and many more anxious people who are also vegans and their anxiety or autistic predispositions have nothing to do with their food choices or even their eating habits. I don’t think that veganism is incompatible with those who have mental health problems or are autistic. In fact, I don’t think that veganism is incompatible with the anybody’s lifestyle, considering they live in the western developed world, above the poverty and don’t have multiple serious food allergies. But I do think that some people, even if they don’t belong in the aforementioned categories, will have a much bigger trouble sticking to a vegan diet. Particularly for those on the autism spectrum, food sensitivities and food aversions may be a huge factor, as well as executive functioning difficulties. At the end of the day, some people find life harder than others, regardless of any individual choices they have to make.

So then what about my veganism? Why do I insist on calling myself a vegan even if I struggle this much to stick to a vegan diet? For me, veganism is a very political decision. I disagree with the assumptions people make about (some) animals. I disagree with the idea of animal ownership and the concept of having complete control over another individual’s way of living and lifespan. I disagree with the idea of human superiority. And many other misconceptions humans have about non-human animals. I also am particularly concerned about the way the food system currently operates and the current food waste levels (which is not an exclusively vegan problem of course, but it is gets particularly alarming when animal products are wasted, given the amount of food, water, space and pollution that went into creating those animal products). I am very concerned with the conditions slaughterhouse workers have to work under, particularly in pass production lines. I am extremely concerned about the environmental implications of animal agriculture. The list goes on, there are so many different issues affiliated with the consumption of animal products.

But perhaps of the most relevance is the fact that I don’t want you to know about my mental health problems or about how I handle them. Shocking as it may sound, I actually consider them a personal matter. And saying that I am “mostly vegan” will first of all be a painful reminder of all my failures and a reason for anybody else to ask me why “mostly vegan” or what I mean by “mostly vegan”. It will give an excuse to people to treat my veganism less seriously and serve me animal products whenever they felt it is most convenient for them to do so. And at the end of the day for all intents and purposes I AM a vegan. Because I am vegan “as much as it is possible and practicable”. It is neither possible nor practicable for me to be a vegan when under acute anxiety. And that is something that I have to deal with, not anyone else. And anxiety is something that, as much as it very much controls my life sometimes, it doesn’t define my identity.

I sincerely hope that I find better ways to manage my anxiety for many reasons, not the least of which is my honest and deep desire to not contribute in any way towards the animal agriculture industry ever again. Veganism is something that I very firmly believe in and I fully intend to be a vegan for the rest of my life. Vegan options are growing by the day and I believe that the day when I’ll have readily available vegan options on those distressing times is not very far. Until then, I’ll do the best I can. And that’s the only thing anybody can promise.

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

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

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

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

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

Stupid and Pedantic

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

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

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

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

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

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

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

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

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

 

Blunt and Outspoken

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

But I can’t do that!

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

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

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

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

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.

Neurodiversity – Neuroequality: What does this mean to you? What do we want?

Two things have popped up on my Twitter Feed today that have got me thinking (more) about the politics of Neurodiversity.

These are the things:

ctv5t8rweaadq7f-jpg-large

This was shared by the new online Neurodiversity group “NT Speaks” (@NTSpeaksUK or http://www.ntspeaks.com) and spoke to my own thoughts and questions about the ways in which we sometimes organise ourselves when we want to promote the cause of Neurodiversity – things like large conferences, face to face interaction, public speaking ,social, sensory overload – things that might be exclusionary to many in our autistic/neurodivergent communities, and to my wondering about how we might augment our approaches to be more truly, proactively inclusive.

What (else) could Neurodivergent Activism look like? What else could it involve? How can we make it better?

The second thing was this:

feminist-demands

The 7 Demands of Second Wave Feminism were shared by Prof Celia Kitzinger – a psychologist at the University of York (@KitzingerCelia)

And this all got me thinking about what we mean when we talk about Neurodiversity and ‘Autism Acceptance’. We talk a lot about the kinds of accommodation and adjustment that meet our needs – and indeed that is the legal, bureaucratic, institutional language that we have to use if we want to negotiate access on an individual basis.

But what might real equality look like if we could design the social world how we’d choose, rather than reactively adjusting a neurotypical-dominant world to meet our special needs?

I think for me, a few of the things that this might involve would be:

  • A world where I don’t have to worry about “disclosing my diagnosis” (or “coming out” – which feels a much better description for the everyday business of being openly autistic in the social world) in case people say – for example – I’m “unsuitable” to be a member of the organising committee of a group I care about “because of my mental health.” (this happened to me a little while ago – still hurts!)

 

  • A world where I can “just” be anxious about the possibility of losing my job because it might be inconvenient in the same way that it would be inconvenient for non disabled people – not because I know, and am frequently reminded, that employment for people of my neurotype is an extremely tricky business, that we’re difficult to “accommodate” (without “specialist” intervention and a lot of personal therapy and development) and that only 15% of people with whom I share a diagnosis are in full-time employment.

 

  • A world where children aren’t made to feel that their worth as a person is directly related to (and judged by) the number of friends they have, and how many children come to their birthday party.

 

  • A world where electric hand dryers and fluorescent strip lights are universally banned!

 

There are lots of other things that I’d really like, but I think one of the problems is that we’re always told “that’s just how the world is” or “people are just like that” – our job is to adjust and to fit in – and the job of others is to enable us to do that.

I’m often asked by well-meaning professionals if I think it’s a bad idea to put “too much support” in place for autistic people in education, for example, because “the real world isn’t like that”.

Well, those of us who are autistic, who live as autistic, know that “the real world isn’t like that” – that’s our experience, we bear the scars of “the real world” – we KNOW. But I don’t think it’s a good idea for us to base our politics on the premise that the world is incapable of change (that’s kind of the whole point, surely?)

  • So what would your Perfect Neurodivergent World involve?

 

  • What would Neuroequality look like in your “real world”?

 

  • What are the “big” things (the policy things)? and what are the “little” things (the everyday, mundane things that would eliminate so many of our daily struggles, but that often seem all the more unattainable for their humdrum, routine normality).

I want more ideas!

I want more information to help me articulate in my everyday life what we’re campaigning for!

Help me out!