Monday, 21 May 2012

How Much Is My Own Autism Disabling Me?

I want to try to figure out how much my own autism is a ‘socially constructed’ disability, but first  I must admit to some reluctance to calling myself ‘disabled’. This despite having an (acquired) physical disability, namely my Chronic Fatigue Syndrome. My reluctance to seeing/calling myself disabled because of my autism however, stems from two things :-

A) I am able to live independently, manage my own life, and in many ways ‘pass’ as a ‘normal’ adult. Thus, I feel I don’t have the ‘right’ to call myself disabled, except as regards my CFS. It would seem like I was trying too hard to fit into some kind of ‘special’ group, a sort of bizarre attention-seeking maybe. Or perhaps I simply fear ridicule or scorn along the lines of “You? Disabled? Don’t be silly!”

B) The stigma and marginalisation of those ‘obviously’ more disabled than me, and how they are so often treated as being mentally incapable as well as physically. I’ve no desire to suddenly start being treated as though I’ve lost 50 IQ points. Especially as this has happened to me already to some degree, when my CFS was in its acute phase.

Nonetheless, I do see myself as ‘disabled’ or at least ‘functionally impaired’ (ie unable to do, or restricted in doing, some things), in specific areas. These ‘impairments’, or ‘disabilities’, fall into different categories, and I am going to try to list them, and analyse how much the disability is ‘socially constructed’, and how much ‘real’, ie it would exist no matter what society’s attitudes or practises.

Physical Disabilities

1) Dyspraxia. Though mild, this has nonetheless meant a lifetime of broken plates, banged heads, sprained ankles and various cuts and bruises. I took much longer than most of my peers to learn manual skills, and I have to be very careful on steps, and with sharp objects. Thankfully it doesn’t seem to affect my fine motor skills for artwork. So I guess I would call this mildly disabling, and something I would have regardless of social attitudes. The only ‘social’ part of it is people’s impatience with my ‘clumsiness’.
2) Auditory Processing Disorder. This affects how I hear sounds. A lot of speech, especially that spoken very fast, quietly, high-pitched or in a noisy environment, comes across as garbled, or as though the words are ‘stuck together’. I therefore have to ‘decode’ what people are saying before I can respond, and some people get impatient with my slowness or confusion, or think me stupid. So I have a real disability in this area, but more patience and understanding from others would help tremendously.
3) Sensory Processing Disorder. This is a two-edged sword. On the one hand, barrages of sounds, smells, sights, movement, colour, textures, etc, means some environments are an impossible torture for me, places I could never work in, or even be in for long. But it’s also a source of much pleasure – things like the crash of surf, the beauty of sunsets, or the sweeping power of music, can transport me into ecstasy. If there’s a social component to this ‘impairment’, it’s that others get impatient when I’m suffering from the barrage, and mystified or taken aback by the ecstasy. Again, more patience and understanding needed.

Emotional/Social Disabilities

1) Alexithymia. This is my difficulty in recognising, managing and expressing my emotions and feelings. I’ve got much better at this in the last ten or fifteen years, with the help of meditation, so it’s a lesser factor in my life than it used to be. It is a real disability however, which caused me much distress in my younger years - and something that has also caused me a lot of social difficulties. I’ve been accused of being ‘cold’, ‘snobbish’, or ‘unemotional’, and had people get angry with me, even reject me, because of it. So there is a ‘socially constructed’ element to it, in that I am framed as ‘lesser than’ or ‘wrong’, simply because of being different.
2) Reading Non-verbal Signals. Not surprisingly, this is an area I have significant ‘impairment’ in. It’s less than it used to be, due to my expending a lot of time and energy over the years to learn what all those ‘little things’ meant, but my understanding of them is conscious and intellectual, rather than subconscious and instinctive, and thus it’s much slower than that of NTs, and liable to break down altogether under stress. It has caused me a lot of social difficulties, as people assume that I understand things which I don’t. Understanding of my impairments however, and some patient explaining, has to help.
3) Social Interaction. This is one of my worst, most ‘disabled’ areas, which might surprise some as I can (usually) follow the social rules, and even do a bit of ‘small talk’. But if the conversation continues, my lacks soon become apparent, and I have never been able to connect well with others. In a work environment, it can be especially disabling – I haven’t a clue how to ‘network’ with colleagues, or do many other ‘social’ parts of a job, and probably couldn’t do it even if I did know. I think this has probably cost me jobs in the past. It’s certainly seen me excluded from many social circles and shouldered out of groups.
But how different would it be, if people understood my various difficulties, and were patient and understanding about them? If they accepted my preference for conversations about real topics instead of superficial nothings, and my need for large chunks of solitude? If my difficulties in the workplace were accommodated for, and the unspoken rules explained? How ‘disabled’ would I be then? Perhaps a lot less – or perhaps I would still be socially isolated and unable to connect. While a change in attitudes would certainly help, it’s nonetheless true I have a real impairment in this area, and I don’t know that a change in attitudes would totally eliminate it.
4) Friendships. I guess it goes without saying that pretty much all of what affects me in social interactions, also affects my ability to make – or keep – friends. My ‘weirdness’ was obviously too much for them, or perhaps there were other factors no-one’s ever told me. I only know that eventually I stopped trying - until I started to meet other spectrumites, people I actually felt ‘in tune’ with. This has revolutionised my friendship ‘abilities’.
I don’t know if a change in attitudes would significantly change anything here – friendship is a very personal thing, and if you don’t feel in synch with someone, you’re not likely to want to be their friend, no matter what degree of ‘understanding’ you have. But it’s also obvious that I’m not as lousy as being a friend as I thought, when with my ‘own kind’.
5) Relationships. This is an area I am significantly and deeply ‘disabled’ in. I decided some time ago to stay single. The reasons why are too many, complex and personal to list here. Suffice to say that being in a relationship for me means being in a perpetual state of emotional instability, anxiety and stress. And when it ends, my over-riding emotion is relief – the kind you get when you stop doing something that you know is really beyond your capabilities, and which you undertook only because you felt you ‘should’. Other people have difficulties with relationships I know, but for them the rewards are worth the stress. For me, they just aren’t.
So my disability is real here too. And I don’t think any change in attitudes, or even a switch to aspie partners, would significantly alter that disability. Having people accept that this is so, that being single/celibate is a valid choice, would eliminate a good deal of tension and frustration on my part however.
 24th May Update/addition. 6) I have realised I forgot to add ‘Executive Dysfunction Disorder’ and ‘Difficulty Coping with Change’ to this list. In practise, I find these two hard to separate - change means disruption to the methods I use to organise my life, and the distress I feel is due to both. So I’m lumping them together. Like a lot of my autistic traits, these have eased over the years, I am now far more flexible and (a little, now and again) spontaneous, and yet more organised, than I ever was when young. And yet the core of these traits remain. Do I have to say yet again the magic words ‘patience and understanding’?

There are many other facets to my Autism/Aspergers which I could list, such as my preference to ‘mono-focus’ rather than ‘multi-task’, my passion for my special interests or social justice, my perfectionism, or my ‘eccentric’ way of seeing and responding to the world, but I as I don’t consider them ‘disabilities’ (though I know that many do), for me they are outside the scope of this discussion.

In Conclusion -
Writing this list has been an interesting exercise. I’ve realised I am significantly disabled in several areas, and would be regardless of how others interact with me. However, it’s also true that there are some things that are seen as ‘disabilities’ by others, but not by me. And in those areas I do experience real impairment in, their impact would be significantly lessened if social attitudes and practises were changed. If people were patient and understanding with my auditory difficulties, my sensory overloads, my conversational ‘quirks’, my lack of automatic understanding of unspoken social rules, etc, the stress and distress I experience as a result would be much diminished. I hope I live to see a world where this happens. It can only be a better place, for all of us, on the spectrum or not.

Friday, 11 May 2012

How Much Is Our Autism A 'Socially Constructed' Disability?

I haven’t written much here recently, as I've been working on several other projects, including a submission for the Loud Hands anthology. During the writing of that, I did a lot of thinking about how autism/aspergers is perceived. Then ‘Autism Positivity Day Flash Blog’ happened on April 30th, in response to someone doing a Google Search on ‘I Wish I Didn’t Have Aspergers’. I also recently read a piece written by an autistic person who feels autism is a devastating disability that has ruined their life, and who rejects the idea of autism as ‘social construct’. All this got me wondering – how much is our autism a ‘real’ disability, and how much is it ‘socially constructed’?

Firstly, what exactly constitutes a disability’? My Concise Oxford defines it as a “thing or lack that prevents one’s doing something… physical incapacity caused by injury or disease”. So for us to be ‘disabled’, we must be defined by our ‘lack’ or ‘incapacity’, by what acts as a ‘barrier’ to our doing or being the ‘norm’. (The assumption here of course being that the ‘norm’ is something we all ‘naturally’ want to do or be.)

Secondly, what is meant by socially constructed’? It seems to mean two slightly different things. Firstly, it means if society accepts and caters for ‘differences’, eg if there are wheelchair ramps, ‘disabled’ toilet facilities, etc, in all public buildings (as there largely is in New Zealand), the ‘disabled’ will cease to be prevented or disbarred from many normal human activities – ie no longer ‘dis-abled’. Regarding autism, this could mean (and I wish it did mean, but alas not so, or not yet) accommodations being made for our different perceptions, eg separate offices with doors instead of open cubicles. Secondly, and on a deeper level, it refers to attitudes towards and assumptions about people with all kinds of ‘disabilities’. Specifically, for those with autism, it means that many of what are currently defined as our ‘lacks’, could be re-interpreted as simply different ways of perceiving or interacting with the world, and just as easily seen as a ‘plus’ or advantage.

My feeling is that the latter has a lot of merit, but can be taken too far. There are some aspects of autism that are indeed ‘disabling’. But what exactly are these aspects? One thing I have noticed is that many of the things autistics – or their parents - complain about tend to be actually either –
1) The ‘co-morbid’ conditions or factors - alexithymia, sensory processing disorder (and consequent sensory overloads), executive dysfunction, dyspraxia, etc;
2)  ‘Outer’ factors, eg difficulties or delays in communication or toilet training, or;
3) Their social difficulties interacting with, understanding or relating to others.
Thus parents will say things like -
- “I’m exhausted by my child’s constant meltdowns.”
- “I wish he could tell me why he’s so upset.”
- “She doesn’t seem to get why she should do it only in the toilet, and not her pants.”
- “The house always has to be locked up like Fort Knox.”
- “If things don’t happen exactly to schedule, she panics and screams for hours”.
- “He won’t play with other kids, unless they do things exactly his way.”
And autistics themselves say things like –
- “I wish I wasn’t always so disorganised.”
- “I’m tired of being overwhelmed by noises, smells, and bright lights.”
- “I hate being so clumsy, I’m always injuring myself and looking like a fool.”
- “I never seem to know what I’m really feeling till it’s too late.”
- “Why can’t I ever make real friends?”
- “I’ve never had a decent/any relationship.”
- “I can’t seem to get along with co-workers/bosses or hold down a job for long.”

By contrast, I haven’t really heard/seen anyone complaining that they hate what I regard as the inner ‘core’ of autism, ie our neurologically different way of thinking, feeling, processing, interpreting and reacting to the world. Perhaps they have, or perhaps they do feel this way, and I just haven’t seen it, or understood it. Perhaps. What I do hear/read is people saying things like “I hate how I can’t do this/always do that/how people treat me… but I love being me, the way I respond to nature/animals/art/music/etc, I like the way I look at the world…” Even many parents say things like “he can be so lovely, so innocently joyful and playful”, or “she’s so refreshingly honest, I’ve never heard her lie”, etc.

So we need to ask ourselves: how much – and which parts - of our autism constitute a ‘real’ disability? And how much – and which parts – are a ‘socially constructed’ disability, that would change or even disappear, if people’s attitudes changed? I feel the answer to that is probably both broad and differing somewhat for each autistic person. And also that this is a conversation we really, really need to have. Because how can we ask for assistance on the one hand, and yet promote ourselves as ‘simply different’ on the other, if we’re not ourselves clear on what is ‘disabling’ about autism, and needs special support or accommodations, and what is simply a ‘difference’ to be accepted? Not to mention the ‘autism rights’ movement is alienating some parents and even some autistics, who do feel their/their child’s autism is a major disability, and that this is being ignored by more (apparently) ‘higher functioning’ autistic adults.

And if proper assistance, early intervention, appropriate and truly helpful and focussed training and support (for parents, autistic children AND adults) was automatically provided, if suitable adaptations were not just ‘allowed’ but mandatory in schools and workplaces – what then would be people’s attitudes, to their own or their child’s autism? Would we still hear people saying they ‘hate’ autism? Would autism still be seen as – or be - a ‘devastating disability’?

I would really like the chance to find out.