That Small Talk Does Mean Something After All

I  haven’t posted here for a while, as I’ve been either ill or busy with other things, including a great deal of family ‘social’ stuff. But in the midst of this social saturation, or perhaps because of it, I realised something. Or, rather, an understanding jelled that’s been forming for a while.

It’s about ‘small talk’ – you know, that seemingly idle chit-chat that NTs do so much of, the “hi, how are you, how’s your Bert’s lumbago, did you see that program on TV last nite, what do you think of that latest movie, I went to that fancy new restaurant, how did your trip go, we’ve been so busy lately,” kind of talk; on and on it goes, a seeming drivel of nothing much, simply filling the airwaves. Which we on the spectrum find either irritating, boring, or simply confusing and overwhelming. Because it seems so… meaningless, pointless, droning, superficial, and just plain stupid.

Well it isn’t meaningless, I’ve realised. Interwoven with a ton of non-verbal signals, ‘small talk’ sends a host of implicit ‘messages’, creating a two-way (or three-way, or more) flow of unspoken communications. At the very least, this unspoken communication says something like I see you, I acknowledge your presence. The better the participants know and/or like each other, the stronger their connections, the more of these ‘messages’ are sent - I respect you, I like you, I want to spend time with you, I find you interesting enough to care about your Bert’s lumbago or your trip, I’m willing to kowtow to your authority, and no doubt other transmissions I haven’t yet decoded. This is why ‘small talk’ gets called the ‘glue’ that binds people together socially. (There are of course often lots of negative messages sent too. These however are also, in their own way, part of the ‘glue’, as they let people know where they stand.)

Now of course, as our ability to read that non-verbal stuff ranges from poor to non-existent, we miss just about all of that, and hence can only hear the ‘top layer’ of the communications, which – on its own - seems, well, shallow and pointless. (I’m slightly embarrassed to admit it’s taken me till my fifties to realise all this, but hey, better late than never.)

If you doubt me, take the opportunity some day to watch any two NTs talking together. Ignore the actual words and simply observe their bodies. It’s like watching a dance. They will sway towards each other, then lean back. Gesture with their hands or arms, cock their heads to one side, perhaps shrug or twitch a shoulder, fidget in their chairs, shuffle their feet or cross their legs, tap their fingers on a surface or reach out and touch the other. If standing, they might move from one foot to the other, or turn away slightly and then back again. And then there’s things like tone of voice, and pitch, and facial expressions, all of which have meaning – to them. The words they use are simply a framework to hang all this on, a sort of vehicle to carry all the real messages. And NTs never think to tell us this, because not only are they usually unaware we don’t ‘see’ all that, but it functions mostly at the subconscious level anyway, so they’re only half-aware of it themselves.

Now I am not saying we need to learn how to do all that stuff, or try to decipher those unspoken messages. As I’ve said before, beyond basic politeness, I don’t feel it’s productive for us to waste a lot of time and energy on something we’re only ever going to be (at best) second-rate at anyway. If, however, we accept that it’s there, even if we can’t see it, understand it, or decipher it, I believe that it will eliminate or at least alleviate our distress and frustration (though perhaps not our boredom!) with the whole business. And I am all for anything that makes our already-difficult lives even a little easier.

The Issues of Older Autistics

Recently one of my favourite bloggers decided to stop writing her autism blog. Her reasons are many, but one of them is that she feels the autism rights movement is too youth-orientated, and that as an older autistic woman she is unable to identify with the issues that currently preoccupy the movement.

Her reference is to the US situation, and I don’t feel autistic advocates here in New Zealand are quite so focussed on ‘youth issues’, yet in the wider ‘autism community’, it certainly seems to be like that. Children used to be, and to a large extent still are, the focus of parent-led groups, government agencies, the education system and the media. But now as the supposed ‘tsunami’ of autistics are coming into adolescence and young adulthood, the focus is also on such issues as transitioning to high school, or from there to university or polytech, social and relationships skills, how to conduct oneself at interviews, flatting etiquette, budgeting, etc.

Now I don’t want anyone getting me wrong. I’m not saying that young people on the spectrum don’t have major issues that need dealing with. Quite the contrary. But the issues of older people on the spectrum are largely being overlooked and unaddressed, in fact not even acknowledged. The prevailing thought (if any thought is given to us at all) seems to be “well they’ve managed up till now, so they must be all right”. Not so.

Some time ago, another autism blogger of the ‘older’ generation was saying how a friend had referred to her as ‘the last of the wild autistics’. By this she meant those of us who grew up in an era when there wasn’t even the diagnosis out there to find. Who experienced decades of adult life lost in a kind of howling wilderness, being misunderstood, rejected, reviled, pushed into at least pretending ‘normality’, and generally dumped on for being ‘different’. Who agonised and stumbled and bumbled their way through that wilderness somehow, learning a lot along the way, but paying a dreadful cost for it. And now we find ourselves in a peculiar situation, one that may never be repeated. We’re too old for, and usually don’t need, the kind of help being offered to younger autistics. But that doesn’t mean we don’t have other problems. The following is an attempt at listing what I see as the issues facing older autistics.

1) Emotional ‘Baggage’. We may have gained at least some social skills and awareness, but we all carry scars from having learnt them the hard way. Decades of ill-treatment, for instance, and/or of not recognising that we are being ill-treated till it’s too late, have often left us so hyper-sensitive, we see insults and rejections even when they aren’t there – or rather, we’re so unsure whether they’re there or not, we angst over it endlessly – sometimes for years afterwards. Which adds layer upon layer of confusion, bewilderment, shame, embarrassment, anger, resentment, self-hatred and low self-esteem to the pain we already feel. Some of us have become semi-recluses because of this. Others just go through life with a ‘chip on the shoulder’, which others don’t understand, blaming the individual, when in fact it’s the decades of undiagnosed autism that is the problem.

2) Health Issues. Like NTs of our age group, we are ageing, becoming infirm, developing health issues. Unlike them, we struggle to communicate to doctors and nurses our special needs, how we are hyper- or hypo-sensitive to pain or touch, for instance. Or how we just can’t eat certain foods, no matter how many times we are told it’s essential for our health to have them, or that the tests say we ‘don’t have an allergy’. Or our trouble with auditory processing issues, which for at least some of us seem to worsen as we get older, or how our ‘co-morbids’ complicate our lives. And our health issues are often worse than people our age, due to the severe levels of stress (and poverty) we’ve experienced. And then there’s the thought of what will happen to us if we reach a point where we can’t look after ourselves anymore. My own personal nightmare is the thought of being forced into some old folk’s home – where I would have no room to paint or write, and no solitude to do it in, and would be expected to interact with others all day, every day. It makes me shudder even to write about it.

3) Employment Issues. Employment is a big issue for many older autistics. We may have learnt how to conduct ourselves at a job interview, but chances are our employment history is chaotic, spotty or almost non-existent, we may have trouble getting on with our bosses or co-workers (often due to that unresolved emotional baggage I mentioned above); or perhaps our educational history is as confused or lacking as our work history. We may feel we could do a particular job, but don’t have the ‘right’ qualifications, and it’s too late to spend years more getting them. We are often poor, marginalised, un- or under-employed, and lack hope of ever getting out of that situation. Or we’re employed, but have struggled through years of feeling lost, and overwhelmed by the social demands of the job. This latter has lead to early ‘retirement’ for some, and/or major health issues.

4) Family Issues. Some older autistics have good connections to their family (I count myself as one of the lucky ones, in this respect). Many, however, are alienated from their families, who didn’t understand that their behaviour was due to undiagnosed autism, and not to the individual simply being a jerk, an arrogant bitch, or a deliberate pain in the posterior. Or family members are hostile, hypercritical, judgemental, and unsupportive. The result for an ageing autistic is that they are often left to deal with life on their own. When you add in that this group is likely to have few or no friends, to possibly not be part of any social network like a church, to be poor, and to have health issues related to their decades of undiagnosed autism, the prognosis for a comfortable ‘senior citizen’ phase of their life looks very poor indeed. These are the sort of people who stand a high risk of not being found till several months after they die, alone, in their tiny, substandard living accommodations.

5) Relationship Issues. The same things that happen with families of origin, are likely to happen with marriages and/or children. Our history of adult relationships can be messy, confused, patchy, non-existent, and/or we’ve left a trail of angry, confused people behind us. Some have been, or still are, victims of abuse in those relationships. Some are even alienated from, or have only distant relationships with, their own children and/or grandchildren. Some of us have given up on the whole business of sexual relationships or marriage, it’s just too much hard work. Which is our right, but once again leaves us alone, and without support, as we age and become more infirm.

This is only a rudimentary attempt at defining what older autistics need, and not intended to be the ‘final word’ on the subject. I hope that others will develop and continue the discussion. What I do know is that we don’t need – or want - our hands held, or patted “there, there dear”, and we’re past the stage of needing social skills classes or ‘transitions’. What we want is what anyone else in special circumstances wants – recognition, understanding, respect, support and practical assistance. The exact shape of the latter has yet to be defined, and will probably differ from one older autistic to another anyway. What is important however, is that we should not be disregarded, just because it looks as though we are ‘managing’.

We Are The Last Group That Will Be Liberated

We are the last group that will be liberated. The last ones that will have their oppression lifted, their plight seen for the travesty of justice it is, their status as fully equal human beings asserted. The last two centuries have seen just about every other group or minority move out from ‘sub-human’ status and into being redefined as within the range of ‘normal’ or ‘acceptable’. Now it must be our turn.

Once upon a time, the ‘norm’ was defined, at least in the Western world, as white, male, middle-class, heterosexual and of course sane, able-bodied and of normal intelligence. The attributes of this group were the standard against which all others were measured, the yardstick ‘everyone’ should ‘naturally’ aspire to, the best that any human could be. And if you weren’t all of these, you were somehow inferior. To a large degree this wasn’t even discussed, but simply assumed. It was the ideal pattern, the superior state, and that was that. In English-speaking countries, you could add ‘Protestant, of Northern European, preferably English, ancestry’ to that list, or, as the Americans call it, a ‘WASP’.

And then the challenges started. Women got uppity, demanding the vote and a decent education and all the rest. The lower classes formed unions and agitated for change and ‘one man, one vote’. Even ‘coloured’ people, once the shackles of slavery had been removed, began to slowly organise and strive for something better for themselves. And as the twentieth century moved on, the agitation only increased. Socialists came to power in some countries, or formed Labour Parties and got into Parliament in others. Formerly subject peoples threw off their colonial masters, and began to govern themselves. Those ‘coloured’ people started calling themselves Black, or African-American, and refused to sit in the back of the bus and accept second-class citizenship anymore. Women soon followed their example, for a second round of ‘uppity’ behaviour, and in the late sixties gays and lesbians began their own revolution.

The result is that over the last thirty to forty years, there has been a change in how such groups are regarded, with a consequent change to the common idea of the human ‘norm’. Publicly ‘out’ gay figures, mothers working full-time, women and dark-skinned people in prominent and powerful positions - even President of the US - are no longer seen as unusual or something to automatically reject even the idea of. In New Zealand we have gay civil unions, and have had two female Prime Ministers, one female Governor-General and two who are of non-white ancestry. And the sky hasn’t fallen yet.

And along with all this, there have been changes for other formerly powerless groups. Patients now have the right to be consulted and to choose their health care, where once they were simply passive recipients of ‘treatment’ from the Doctor Gods On High. Mental health patients have undergone a similar empowerment. The blind, the deaf and the intellectually handicapped, once powerless and marginalised into institutions, now enjoy a much better position and quality of life. The physically handicapped have also acquired ‘rights’, to accommodations such as disabled toilets and to being seen as fully human, even if in practise they are sometimes still treated as ‘not all there’. Nonetheless, it’s seen as ‘not nice’ to refer to ‘crips’, to laugh at someone because they can’t walk properly, or to talk down to/ignore someone just because they’re in a wheelchair – any more than it’s socially acceptable in most circles to call non-whites ‘niggers’, ‘chinks’ or ‘wops’, or to tell women they can’t do a particular job just because they’re female, or to say that lower-class or Black American accents are not acceptable on mainstream television.

That’s not to say that racism, sexism, homophobia, classism or even ableism, have all been eliminated. Far from it. But my point is that the idea of what constitutes the ‘norm’ has changed. All these groups are now seen as having fully human status, as being worthy of being treated well, even if they sometimes aren’t.

We are not.

It’s still okay for people to say in our hearing that we are ‘mistakes’ that should never have been born, or ‘thieves’ that have stolen away people’s ‘real’ children, or tragedies and burdens that have destroyed our parents’ lives.

It’s still okay – even commended – for people to say in our hearing that they ‘hate’ the autism that is the very core of who we are, without regard to the psychological damage that might do us.

It’s still okay for media to portray us almost entirely in a negative, patronising or pitying light, and to report unopposed the views of those who say that murdering us is ‘understandable’ and a ‘mercy killing’.

It’s still okay to force us into ‘treatments’, therapies or ‘restraints’ that can do us real harm, while denying us the support that actually could help us.

It’s still okay to refer to us as ‘retards’, ‘losers’, ‘geeks’, ‘nerds’ or ‘ass-burgers’.

it’s still okay to exclude us, reject us, laugh and jeer at us, bully us even as adults, deny us employment, and generally dis-empower us.

It’s still okay to demand that we suppress and deny our true selves and natural behaviours such as stims, even if they aren’t hurting ourselves or anyone else.

And it’s still okay to take it as a given that our ways of being are automatically inferior to those of neurotypical ways, and any difference between us is a ‘defect’ on our part.

Most of all, it’s still okay to see us as ‘not fully human’, as somehow lesser than the ‘normal’ people, as Not Good Enough to have rights just like any other human.

Because we are not seen as fully human, and we have no rights.

I’m not wanting to minimise any group’s struggle here, but it’s nonetheless true that even the blind, deaf, intellectually and physically handicapped, and those with mental health issues, are seen as more ‘normal’ than us. Unless they are also on the spectrum, there’s a shared outlook, a body of shared assumptions and attitudes, a natural facility with all the things we so struggle with, that they all have in common.

We don’t share it.

We are the ultimate ‘other’. The furthest ‘out there’ group, the last frontier of what it means to be human. Having spent time in the feminist and anti-racism movements of the eighties,  I believe our struggle will prove to be the hardest, the longest, the loneliest and the most complex of all.

None of which means we shouldn’t try – rather, it means it becomes all the more imperative, all the more needed, all the more necessary, that we do. And when we consider all the above treatments we are on the receiving end of, and the damage they are doing, all the more urgent. We have to do it. We have no choice. Because we are human, and it’s time to step forth and declare it, and take our place in the world.

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.

 24^th 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.

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.

A Very Interesting Post on Murders of Autistic People

I just found a very interesting and pertinent guest post on Rachel's Journeys With Autism page, here, at http://www.journeyswithautism.com/2012/04/12/speaking-out/
It's well worth a look, if you're as outraged - and as scared - as I am by all these murders of autistics, and the sympathy given their killers.

Normalisation vs Maximisation

A while back, I posted a piece on 'Normalisation' vs 'Teaching of Skills'(here). At the time, I knew that the latter wasn't a very good or even inclusive way to describe what i meant by this, but I couldn't think of a better word. Now I have. I've decided to call it 'Maximisation', as I feel this fits best what I mean. This is how I see the difference.

Normalisation is when parents (for instance) reject the child's autism, and see it as a 'tragedy', and become hell-bent on eliminating it, or suppressing all sign of it, no matter what the cost. While I am sure they (usually) mean well, it's my contention that they are mistaken in their belief that the autism can and should be eliminated (as opposed to specific problems, such as communication difficulties, lack of toilet training, etc). We all know instances of the horrors this approach can lead to, I'm sure.

Maximisation, on the other hand, is when parents (for instance) totally accept the child's autism, but want to maximise their child's happiness and chances in life as an autistic person, through various therapies, whether they be physical, social skills, biomedical, whatever. And it's my feeling that many parents are quietly going about things in exactly that way, despite the 'doom and gloom' messages being trumpeted by the big autism organisations.

I guess there are no prizes for guessing which I feel is the best approach, and the one most likely to lead to both the autist's happiness, and that of the parents, in the long run (less stress and expense).