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.

Autism – a Diagnostic Quest (Stage 2): Gatekeepers

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

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

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

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

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

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

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

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

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

“I think they are usually learning disabled.”

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

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

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

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

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

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

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

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

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

An ‘Autism’ thing?

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

 

 

 

 

 

 

 

 

 

Diagnosis, discrimination and why speaking out can feel so risky …

As I’m in the middle of writing a series of posts about social issues in diagnosis, based on my experiences, this is a brief post to share some thoughts in response to a story I found on Twitter earlier this week.

You can read the story here – it concerns an academic who had moved from Bangladesh to Australia in order to work, but whose application for permanent residency had been denied because their son’s diagnosis of “Mild Autism” meant that he was supposedly at risk of being a “burden” to the Australian public health system.

This story is shocking, but it got me thinking about my own experiences, and questioning  why I have become in recent years increasingly reluctant to disclose my diagnosis (or certainly to “make a big deal of it”). I remembered a time several years ago, when I had to leave a job because of “work-related stress” and needed my doctor to sign me off work. The doctor asked if I thought it would be advantageous if he included “Asperger syndrome” on the sick note as this would be likely to open up the protection of the Disability Discrimination Act (DDA), should I need it.

And I should have been able to say without any doubt or fear – Yes! Definitely yes! It should have been that easy, and that safe. There was a time when that would have been my answer, but it wasn’t. Something had changed.

I remember when I was first diagnosed with (physical) disability as a child and I was struggling at school because pain and tiredness were making it really difficult to keep up. My parents and one particular teacher at school began to fight the Local Authority in order for me to get extra support and although this turned into a long and complicated process (which will probably appear in another post), there was such a strong conviction from those around me that I should have the RIGHT to support, so that I could get the very best qualifications I was capable of, without going through pain, extreme fatigue and the risk of further complications to my existing condition in order to achieve those qualifications, that I myself became absolutely convinced that I had that right.

This was around the time when the Disability Discrimination Act came into being, and it felt so empowering to have a law like that as protection – to have rights.

To be clear – what I mean there isn’t that I felt I could/would access those rights at the time. I didn’t really understand the ‘letter of the law’ at all, but I felt that there was a “message” in society that discriminating against someone because they have a disability is not acceptable. That felt powerful, and it felt safe and it felt good.

(And I think it goes to show how law can have an effect in society by shaping discourse – even among those who are unfamiliar with the specific details of a particular Act. It’s like the Act takes on a kind of social life of its own.)

But that’s not how I felt those years later, when my doctor asked what to put on the sick note.

I was worried and ambivalent. Possibly not least because I was thinking at the time that I might want to go on and do some professional training that would require me to prove my “fitness” to do the training and work in that profession – and I was painfully worried that an Asperger diagnosis could be problematic there. This shouldn’t have been the case for someone who had started out in developing her disabled identity with very clear expectations that I could do anything anyone else could do, and that it was the job of society to adapt and enable this to happen.

Somewhere along the line, I’d lost that sense of empowerment, of having rights. I’d experienced so many times in life and in work (in various jobs) where I’d been told that “this is just how it is here” – where the solution offered to me when conferences and events were too overwhelming or too much of a sensory challenge was for me not to go to them (although I wanted to). Where I had the clear message that this is how the world is, and if we offer you support at all, it is to ensure that you can fit into our world and be acceptable and productive.

That wasn’t what it felt like when I was at school. That’s not what I’d thought I was getting with the Disability Discrimination Act. But it was the message I internalized from my own direct Asperger experiences – experiences which were really quite ‘everyday’ and ‘mundane’ – and not at all the kinds of things that would lead someone to resort to the law in order to change things, but which all added up to making me very, very worried about appearing “too autistic”

I think it’s also fair to say that stories from the wider world affected me too –such as those that commented on the chronically low levels of employment for autistic people. I think those discussions set up what felt like a ‘self-fulfilling prophecy’ in that if I struggled at anything, I expected I was going to fail because I had autism, and autistic people are (apparently) difficult to employ.

And having been in that environment for enough years, and been so desperate not to fail, I think I lost the expectation that anything would change around me, and began to feel that if I wanted to manage, I had to be the one to try harder. So I stopped disclosing my diagnosis – or if I did, it came with all kinds of qualifications, like “I have Asperger syndrome, but don’t worry because I’m ever so capable, and I can do this, and that, and I might have weaknesses but they’re made up for by this strength and this strength”.

Apologising for your own existence as an act of self-preservation is quite a long way from empowerment or rights.

So, I’d travelled quite a distance from the sense of empowerment and hope of the very young, physically disabled me. And that’s what makes me feel that although there is real power in the law to drive social change – there’s also a huge amount of work to do in society too, because while people are internalizing the stigma that society throws at them, it’s a huge challenge, (and exhausting, and draining and painful) for those people to try to advocate for themselves, and access in their everyday lives some of that empowerment that the law is able to promise. So, legal rights are great – but there’s got to be something else as well, and that’s the bit that I really want to understand and to be able to achieve for others.

Hopefully then people won’t feel that disclosing their diagnosis (identity) is like walking some kind of tightrope.

Diagnosis and Identity – Need and Power

Diagnosis and Identity – Need and Power

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

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

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

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

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

The “Moment of Realisation”

There was an actual moment where it all started.

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

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

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

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

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

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

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

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

Identity as “given”?

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

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