Thursday, 23 June 2016

Autistics and Their Allies Getting Together

We on the spectrum are unfortunately all too familiar with the autism-negative parents and their groups. You know who I mean I’m sure - the ‘curebie’ crowd, the ‘hate autism’ ones, the ‘autism stole my child’ and ‘autism is an epidemic/brain damage/worse than cancer/I’m going to rid my kid of autism come hell or high water’ types. We all know and dread these people.

But a Facebook post not long ago, by the mother of an autistic child, who’d been ejected from an autism parents online group for taking a more positive approach to autism, and the response from some similar-minded parents, made me aware of something that’s been growing in me for a while. Namely, the feeling that there are far more ‘autism-positive’ parents out there than most of us are aware of. Some of these parents are on the spectrum too, but not all by any means.

I have encountered such parents now and again, over the last several years, but they always say things like “well, I’m a rare breed”, or “I’m in a tiny minority”. And given that most of the noise about autism is being made by those negative types above, or a misinformed and/or seemingly tame media, it’s understandable why they think that.

But I no longer believe they are. I think they exist in far greater numbers than either they, or we, suspect. They don’t usually seek the limelight, or go on ‘crusades’ about (against) autism, so it’s easy to overlook them. They accept their kids as they are, and don’t make a huge drama of their autism, to them, it simply is.

They may use various techniques, therapies or supports to help their kids grow and develop, but they don’t bombard them with the kind of harsh therapies we all deplore, or even too many of the not-so-harsh ones. They are simply quietly bringing them up in an autism-positive environment. And they are really, really refreshing to meet.

They’re open-minded and willing to listen to adult autistics, in fact it’s often their doing that which has helped them to become what they are, and to have the courage to shun the mainstream mindset on autism. Others seem to have come to it by themselves, with the words of autistic adults just confirming their ‘gut feeling’.

I believe it’s time for all these autism-positive parents to join together, to form groups both online and in real life, to share their different mindset and support each other, to liaise with adult autistics and advocate whenever they can for a more positive approach to autism and the elimination of such atrocities as bleach enemas.

To present, in other words, an alternative to the usual rubbish we see out there on autism, for the general public, the media, and other parents - who might be new to all this ‘autism stuff’, and really struggling, or who have been in it for a while, and are unhappy with it but don’t know of anything better.

In fact, it’s already started happening. As a result of the post I mentioned above, that mother decided to start her own group on Facebook. It’s called Autistic Allies, and it’s a place where autism-positive links and references to websites etc can be posted. There are also some other groups intended more for support, and parents actively working to see the whole bleach horror, for instance, made illegal. And whether these parents are NT or autistic themselves doesn’t seem to make much, if any, difference to their approach.

Let me be clear here – in promoting these groups, I’m not saying autism-positive parents should be thrown out of the ‘mixed’ groups that already exist on Facebook, where parents and autistics already meet and give each other advice and support. I see them as an adjunct to them, not a substitute.

So what do these groups look like?

They of course have to be careful not to be taken over by the ‘other’ sort of autism parent, so their ground rules have to be ultra-clear from the beginning.


- anyone supporting Certain Autism Organisations (you know the ones I mean!). Initial ignorance of their true agenda might be accepted, but if they continue to support them AFTER being informed, out they must go.
- anyone espousing a ‘cure’ for autism, or posting links that lead to pages or organisations promoting it, especially those involving bleach and the like.
- anyone who advocates ABA or similar therapies.
- anyone who is into ‘pity parties’ or the ‘poor me’ thing, for having an autistic child.
- anyone who insists on normalisation or ‘being indistinguishable from their peers’ as the only worthwhile goal for their autistic child/ren.
- anyone who is negative about autism in any way, eg referring to it as a disease.


- supporting each other in their autism-positivity.
- working on ways to get the autism-positive message out to the general public.
- working on ways to enable their autistic children to be the best damn autistics they can be, ie the ‘maximisation’ approach.
- whenever possible, reaching out to ‘new-to-autism’ parents who may be confused as to what is the best way to help their autistic child/ren.
And of course, last but certainly not least -
- listening to autistics, both adult and if possible teens and children on the spectrum, with an open mind, and liaising with them wherever possible.

Up till now autistic advocates, even collectively, have felt like a lone wolf crying in the wilderness, while the autism-positive parents have largely kept their heads down, perhaps not wanting to attract negative attention from the ‘other’ type of parents, or just getting on with their lives.

But autism-positive parents and adult autistic advocates are natural allies, and I feel it’s time to more and more actively work together, in order to change the public ‘conversation’ about autism, to change government approaches to autism, to change EVERYTHING about how autism is talked about, thought of, approached, ‘handled’ and dealt with, in every sphere of life.

Do these groups represent a turning of the tide on autism? I believe so. I hope so. I believe we can do this, and we will do this. Together, we can change the world!

Tuesday, 17 May 2016

Introversion and Autism

I’ve been reading some interesting books lately, on introverted people. Introverts have long had a ‘bad press’, it seems this goes back to when Freud (himself an extrovert) had an argument with Jung and Adler, two other (introvert) psychiatrists, and from then on depicted introversion as a negative, unhealthy trait, associated with narcissism and/or rejection of the world. Introversion has been seen in pathological terms ever since, especially in Western culture. The outgoing, gregarious, extrovert type is still often seen as the type to aspire to, and parents sometimes pressure their children to fit this model. That extroverts outnumber introverts about three to one doesn’t help either.

But introversion is far better understood than it once was. It’s now known to be not a matter of neurosis, but an inborn temperament, decided by the response to stimuli taking different pathways in the brain. These paths are now being mapped, and the strengths and benefits of introversion are becoming better accepted.

Whether you’re introvert or extrovert isn’t about whether you like other people or not, or how socially skilled you are. Introverts are sensitive to over-stimulation, feel drained by crowds and lots of noise, and need to be somewhere quiet and alone in order to recharge their ‘batteries’. They’ll also go inwards to sort out any problems or stresses they have, and have a rich inner life, though it often won’t show on the surface. They think long and deeply about all manner of things, though this may not be obvious, and they’re often seen as shy or unfriendly, or even unintelligent. Introverts don’t typically dislike people, but they may restrict who with and how they mix, and are usually content with having just one or two good friends.

Extroverts, on the other hand, are energised by social contact and lots of external stimulation. They like to meet and get to know lots of people, and often have a wide circle of friends. They need sensation and external input to recharge, “like solar panels”1 as one author puts it, and can feel lonely and under-stimulated without it. When they have a problem, they typically prefer to talk it over with someone else, and like to ‘know a little about a lot’, their strength being breadth rather than depth.

It’s said that you can tell the extrovert from the introvert not by how they behave at a party - introverts can get quite skilled at presenting a good front - but by what they say when they leave. An introvert will say “Whew! Time to go home and rest.” An extrovert will say “That was fun! What shall we do next?”

I have known for some time that I am a thorough introvert. On the Briggs-Meyer personality test, for example, I’m an INFJ. Plus I fit the classic description of introverts as described in these books. I’ve experienced a lot of flak for this – I’ve lost count of the number of times I’ve been underestimated, misunderstood and misjudged. I’ve often been scolded for being ‘anti-social’, ‘shy’, ‘snobbish’, or accused of ‘sulking’ when I withdrew. Or it would be suggested that the answer to my problems (any problem!) was that I ‘should talk to people more’ or ‘stop hiding away’. My need for solitude has been seen as pathological, an unhealthy thing. As a result, I’ve sometimes forced myself to socialise till I’m about ready to drop from exhaustion, and seen myself as ‘lesser than’, because I couldn’t be like other people.

So does being autistic automatically mean being an introvert? It’s true, we often have a need to withdraw from the world, at least temporarily, due to sensory overload or social challenges, and many of us would probably identify as introverted, on the basis of the descriptions I’ve read. And the extrovert description fits many NTs like a glove – the love of talk and chatter, the throwing themselves into partying, the tendency to ‘sample’ conversations, topics and knowledge like a smorgasbord, or the ability to cope with far more stimulation than any autie could ever handle.

But the introvert/extrovert axis cuts through gender, race, age, nationality and just about every other category you can think of, and could possibly cut through the neurotype boundary too. So theoretically, there could be some, perhaps many, extroverted autistics2. (Plus of course there are definitely many NTs who are introverts, or these books would never have been written!)

So what might an extrovert autistic look like?

I’m thinking here of the autie who tends to charge into groups, loves to be around people and get to know them, and who, especially when young, can sometimes come across rather like a super-friendly, bouncy puppy, all eagerness but no finesse! Autistic extroverts may get their social ‘refueling’ from being with people they trust and have something in common with, rather than simply ‘the world at large’ – this could be their family, other auties, their church or other religious group, a group who shares their special interest, or something similar.

It’s possible at least some of these extrovert auties, if knocked back too many times, might end up rather bitter and disappointed and negative about the world (as do many of us), and retreat from it. But their basic personality trait would be unchanged, and so they might suffer from ‘energy withdrawal’, if they can’t find a congenial group of people to be around. So these auties might conceivably be in a worse state than more introverted ones, who are able to recharge through being alone.

It’s worth remembering too, that few people are extremely one or the other, so you might have some introvert traits, and some extrovert ones. One of the books even postulates a category called ‘centroverts’ or ‘ambiverts’, who fall pretty much in the middle. These people are able to understand both introverts and extroverts better than each type will understand the other, and can provide some much-needed balance and even mediation between them.

The big thing is to understand that one type isn’t better or worse than the other, and that the world needs all sorts. Whether NT, autistic, or a halfway ‘cousin’, an introvert, extrovert or centrovert – we all have something to contribute to the world, and the right to be whatever we are, and have that true self be accepted.

1 pg 20, Laney, Marti Olsen; The Introvert Advantage, Workman Publishing, New York, 2002.
2 One word of caution if you decide to read more on this subject – the writings are not really autism-friendly. One book for instance, on introversion in children, discusses how some confuse introversion with symptoms of autism. The author warns against “pathologising” introvert children - the unspoken subtext being “…but it’s okay to pathologise autistic kids, because they’re really weird.” She also reiterates the misunderstanding that autistics “aren’t interested in other people”. So get what you can out of it, and realise that not all of it will apply to you, whether introvert or extrovert.

Monday, 11 April 2016

Privilege and disability

I’ve been thinking lately about privilege. Most people think of privilege as something they have or had – “ancient rights and privileges”, “I had the privilege of meeting so-and-so last year…” etc.

But privilege, in the political sense, also has another meaning. It’s about what you don’t have to deal with, what doesn’t happen to you, because of your race, gender, religion, sexuality, neurology, or whatever. It’s what you take for granted as so normal that you don’t give it a second thought – unless for some reason you suddenly get deprived of it, or become aware of what those without it suffer. Though even if an individual is made aware of their privilege, they usually want to deny it even exists. As one person in a Facebook conversation about this said – “The thing with privilege is that those with it …are unaware of it. And many do not want to see it because it rocks the foundation of who they feel they are.”

I first became aware of privilege in this sense when I was in the feminist and anti-racism movements, back in the 80s. I of course don’t have male privilege, or heterosexual, or even able-bodied, now. But I do have the privilege that goes with my white skin and European ancestry.

So I know that as a white person, I can, say, walk down a street in a high-income area without having people think I’m there either to clean a house or to rob it. I’ve never had anyone assume that I got a job because of my skin colour, not my abilities. I’ve never been sneered at or hassled by shop staff because of my race, nor feared being arrested because of it. And if I read a history book, people of my race are almost certain to feature prominently, and usually positively, in it.

Similarly, no man walking into a boardroom for the first time is likely to have people assume he’s there either to make the tea or take notes. (Yes, even now that still happens.) They never have to think about glass ceilings or equal pay. They can fearlessly walk alone late at night, and sleep around without fear someone will think them a slut. Date rape is not a worry for them. And so on. (And this is just in Western countries. Imagine the male privilege in non-Western ones.)

And then there’s heterosexual privilege – your average straight person never has to worry about being denied a marriage license, or being allowed to adopt or foster children, or even to retain custody of their own children. Yet until fairly recently, all these have been routinely denied gays and lesbians, and still are in many countries. In fact in some countries, gays and lesbians still live in fear for their lives. And they aren’t all Third World countries either. Russia has a particularly bad track record of this, and it’s getting worse.

So what does privilege mean for the non-disabled, and/or non-autistic?

For the non-disabled, it means things like never having to worry whether you can physically enter a building, or easily get to where you need to be if you do get in.

It means you don’t have to think about whether you can find housing you can access, or whether you’ll be allowed on to a bus or train or plane, or denied a safe place to put yourself when you do get on.

You don’t have to worry that you will be talked to as if you’re stupid, or have others ignore your wishes and make decisions about your life against your will, based solely on your physical abilities and needs.

You’re never expected to be the ‘token’ person of your ability levels, or be constantly told how ‘inspirational’ you are, just for doing normal, everyday things.

If you’re not autistic, if you get bullied, it’s unlikely anyone will tell you your neurology is to blame, and that if you only you acted more like others, it would stop.

You don’t have to plan your day around the fear of inducing sensory overload, and you can change plans if need be without risking panic and meltdowns.

You needn’t fear that people will ignore what you’re saying because of your neurology, or consider you a ‘burden’ because of it, or decide that any and all problems you have, even medical ones, are due to it.

You’ll never have to fear being attacked because of your neurology, or that police officers will take your normal body movements the wrong way, and arrest or even shoot you because of it.

Perhaps most chillingly of all, if you are murdered by your parents or caregivers, no-one will say that “you’re better off dead”, and offer sympathy to your killer/s, based on your neurological style or physical ability levels. Yes, this does happen, and all too frequently, alas.

This is just the tip of the iceberg of the privileges of all the above groups. For more information about privileges, check out the following websites :

And yes, many of the above privileges, or lack of them, intersect. You can have, or not have, more than one sort of privilege. Imagine how they begin to stack up, and you see why some people’s lives are much easier, while some others almost don’t stand a chance.

And here’s the thing about privilege – there’s no point in either denial or guilt. Back in the 80s, I was in the New Zealand anti-racism and feminist movements. I realised then that guilt is a useless emotion, as it changes nothing. You’re not a bad person for being born white, male, straight, able-bodied, or whatever, anymore than others of us are bad for not being any or all of these things. What’s needed is to acknowledge your privilege as a simple fact – and then, hopefully, do whatever you can to ensure that those without it also gain it. I’m not saying that’s easy, or that all of us have to be hotshot activists, but we can always find some little thing to do to change things.

But start with simple acknowledgement. Just facing the truth can go a long way.

Friday, 19 February 2016

My Favourite Things

Too often lately, I’ve been feeling kind of negative, so just for fun I decided to make a list of my favourite things. These are all things that help me get through life. A lot of them, I’ve realised, are sensory things, but not all. Anyway, here they are, vaguely grouped but not in any order of favouritism.

The smell of new-mown grass. Even when it threatens to aggravate my hayfever.

The smell of hot pavement after rain, and watching steam coming up off it.

The smell of onions or bacon frying. Or sausages, especially on the barbecue – and the taste of those sausages (gluten free, of course!) in my mouth. Nom, nom!

Lite Licks Dairy Free icecream, with my own (gluten free) sticky date pudding or self-saucing chocolate pud.

Cadbury’s Chocolate, especially Dairy Milk and Caramello, and Whittaker’s Peanut Slabs. Yes, I know, they’re dairy, but they’re still yummy…

Gluten-free hamburgers from Burger Fuel. I so wish they’d open a store in my town.

Roast chicken with roast potatoes, gravy and all the trimmings. Nom, nom again. (Licking my lips here!) (I guess it’s pretty obvious I’m no vegetarian, lol…)

Spectacular sunsets, with all the delicate shades of colour that surround them, and the deep, deep blue of the twilight sky. Actually, the sky on just about any day that’s not rainy and grey. So many people never really look at the sky, if they truly saw it, they’d marvel.

Gazing at the stars and moon, especially out away from town lights, or pictures of space, galaxies, stars, etc – it’s a feeling I can only describe as soul-liberating or expanding.

Our beautiful NZ beaches, especially when they’re empty of people, and especially when pohutukawa trees are in blossom, their brilliant red and green combining with the blue sky, golden sand, white surf and azure sea, to make a treat for the eye. The surge and crash of that surf makes my skin tingle, and I feel so alive.

Standing on a hill or mountaintop, and being able to see for miles and miles, especially if the view is out to sea, and breathing in the clean, clear air.

Trains – ever since I was a little kid, I’ve loved the chugga-chugga-chugga of them, it produces a thrilling resonation, deep in my body. I love to ride trains too, the way they rattle and sway along, and how you get to see all sorts of back yards and people’s lives not visible from the street. There’s something slightly mysterious about trains, even the most ordinary suburban commuter ones.

Stationery stores – they make me want to grab those pristine tubes of paint and slather them across the pure white canvasses, or the pencils and crayons and pastels onto the sketchbooks, or write in those oh-so-pretty notebooks… especially if I haven’t done anything creative for a while.

Spending time with my daughter, especially when we joke and laugh so hard we just about wet our pants.

Good times with my family, especially dinners, where there’s lot of yummy food, and we laugh and joke ditto as above…

Joking and laughing with my aspie friends so hard that yes, sometimes I ROFLOL and just about PMSL…

Watching my favourite movies yet again. Basically any of the following –
- The Sound of Music. Yes, I know it’s impossibly schmaltzy, but I love it anyway.
- Fiddler on the Roof, the movie version.
- All the Lord of the Rings movies, but especially the last one. “Don’t you give up Mr Frodo!”
- All the Star Wars movies, even the ones with such wooden acting you’d think the stars were fenceposts.

Playing my favourite music when I’m alone, turning it up loud, and just letting the sound wash over me, till all my tension is gone. Especially I love -
- ‘Time To Say Goodbye’, it really tugs at my heartstrings (we played it at my mother’s funeral), but oh it’s good.
- ‘I Believe in You (Le Crois En Toi)’ by Il Divo and Celine Dion.
- ‘O Holy Night’, by Il Divo.
- Sole Mio singing just about anything.
- ‘Amazing Grace’, by just about anyone, but especially if it has bagpipes. (I love pretty much anything on bagpipes actually, must be something in the blood - all those Celtic ancestors! - they always send a thrill down my spine.)

Monet’s waterlily and haystack paintings. The first time I saw them in an exhibition, I was blown away. Also too many of the Impressionists and ‘Old Masters’ to name here. They make my fingers itch to paint too, though I know I will never get anywhere near their class.

Old houses and buildings, castles and cathedrals and the like, especially if they have soaring arches and lots of ancient masonry. There’s just something about arches…

The thrill I get when I’m doing family history research, and stumble on something – a name, a birth record, a census entry – that is another leap back in time, another ancestor emerging from the mists of the past (family history research is astonishingly addictive).

Doing crosswords and other word puzzles – and the satisfaction I get from finding that last crossword answer that’s been bugging me.

Curling up on the couch with a good book, a tasty snack and a long cool drink. My favourite books are whatever I’m currently reading, something to do with my special interests, or anything (fiction or non-fiction) about those who are marginalised, outcasts, loners and/or ‘different’.

Anyway, this is my list of ‘stuff I like’, just off the top of my head. It’s longer than I thought it would be, which I’ve realised is a good thing. The more things that nourish me, and that help me get through life and endure a world that I find illogical at best and downright crazy at worst, the better.

Do you have a similar list? What makes you feel good? What do you do, to help yourself cope with life and the world? What are your compensations or treats, that make things more bearable?

Friday, 8 January 2016

The Dishonesty of NTs

I don’t want anyone getting me wrong here – this is not an anti-NT rant. I don’t do such things, not even in my worst and most frustrated moments. That would be doing a disservice to the many NTs I love dearly. Not to mention that I don’t believe that autistics are superior overall to NTs, anymore than I believe that NTs are superior to me/us. Rather, we have strengths in different areas, and in our thinking and approach to the world and life and other people, we’re simply, totally, completely and overwhelmingly different.

And it’s one aspect of that difference I want to explore here, as I attempt to get to grips with something that’s long puzzled me about NT behaviour. Namely, their dishonesty. Or what seems like dishonesty to us.

Note, I’m not talking here about those blatant acts of dishonesty – theft, shop-lifting, burglary, fraud, embezzlement, con-artistry, espionage, treason, and so on - that get punished by the law, and rejected by most NTs even, and rightly so. Nor do I mean the deliberate but not usually illegal deceptions of negative intent – the cheating spouse, the manipulative workmate, the political trickster. I’m talking, rather, about the little acts of social dishonesty.

I’ve come to realise that NTs, unlike us, place ‘getting along with others’ way, way, way ahead of ‘telling it like it is’. So they will do all sorts of little fudgings of the truth in service of that, where we would just blurt things out – and then get jumped on for being ‘rude’, ‘insensitive’, etc. As we almost never intend this, we end up confused and even hurt. What, we wonder, did we do wrong? Why is the truth so bad?

Anyway, here’s something of a guide to the various kinds of social dishonesty (though they wouldn’t call it that) I’ve seen NTs doing.

Phrasing things politely. This is using diplomatic versions of the truth, to soften harsh messages. So people will say that so-and-so is “a bit upset”, by something, when in fact they threw a tantrum, or are bawling their eyes out. Always take a message like this as a huge understatement – the truth is almost certain to be far worse than the literal words. Phrases like “a bit”, “kind of”, or “somewhat” are red flags for this sort of dishonesty. Even between aspies, I’ve seen this one trip some of us up.

Euphemisms. This is a variation on polite phrasing, where softer expressions are used to blunt harsh realities, eg saying that someone has “passed away” rather than simply “died”. I have often used these myself, finding them either less likely to cause offence, or just kinder. Or more bearable – eg when referring to my mother’s recent passing. It has its place therefore, but too much of it is like constantly wearing cotton wool in your ears – you start to feel like everything is a bit muffled.

Circling the truth. Basically, this involves verbal beating round and round the bush, till you’re not even certain what the heck the bush is. I have always found this extremely difficult to cope with. I’m still not sure what the point of it is, other than a kind of super-politeness, or maybe not wanting to commit to saying the truth, but if you’re faced with someone who never clearly states what is it that they want, or are trying to say, circling is likely what they’re doing. My recommendation is, be blunt. Ask straight out what they mean. It tends to disconcert people, sometimes annoy them, and even then you don’t always get a straight answer, but at least the issue is out in the open. And that’s got to be far less anxiety-provoking for you.

The little white lie. Years ago, my then-partner told me about a previous flatmate of hers, who fancied a guy who was obviously gay, something she refused to acknowledge, even once saying to my ex “people say so-and-so is gay, but he’s not, is he?” My ex’s private thought was that the guy was as camp as a row of pink tents, but she agreed no, he wasn’t. This is the ‘nice’ lie, to spare someone’s feelings and supposedly not harmful, though I have my doubts. How can not facing up to the truth be harmful? How long would that woman have gone on deluding herself this guy was potentially available? And how hurt would she have been, in the end?

 If you do hear someone telling one of these white lies, however, it’s best not to barge in with the truth. These situations often needs delicate handling, and are best left alone by those as socially clumsy as we aspies. Of course if someone asks you outright, they should know better than to expect you to lie, but do ‘phrase it diplomatically’ if you can.

The ‘Fairy Tale’. A more elaborate version of the ‘little white lie’, we see this one most especially on sitcoms, where some of the characters invent a complicated tale to tell another character, because they feel they can’t tell the truth for some reason. However it also sometimes happens in real life too, usually I think to spare someone’s feelings, or to escape the consequences of something.

I’ve been tripped up by this one more than once – confused, I would jump in with “no, that’s not true!”, and blurting out the truth. And of course getting a very sharp reaction, which confused me even more – why were they telling a lie in the first place, and why didn’t they tell me they were going to do it? I still think it’s stupid, and usually unnecessary. Or at least they didn’t need to invent such a convoluted lie.

Zipping the lip. Sometimes NTs avoid telling a lie by simply saying nothing at all, also known as ‘keeping mum’, ‘keeping stum’, and similar phrases. Like the little white lie, it’s done to spare other’s feelings, especially in situations where it’s felt that revealing the truth would do no good, and possibly even hurt someone. So there is a place for it, and I’ve done it myself – kept quiet about stuff that it really wasn’t necessary to reveal.

Maybe, for instance, you’ve got a sweet little old auntie who’s on her deathbed, and who’s always idolized her long-dead husband. Why tell her that in fact he had an affair thirty years ago? What purpose would be served by telling her now? (This is a fictitious example, I hasten to add, not one I’ve ever personally faced.)

Keeping our mouths shut is I think about the only ‘social dishonesty’ we aspies can manage, in response to all the situations mentioned above - difficult though it can be, not to blurt things out! I’ve found it best to watch what others are doing. If they aren’t revealing something, I don’t either.

It’s important to remember that all of these ‘dishonesties’ are done with positive intent in mind – the sparing of other’s feelings, at least in the short term. Whether they do in the long run of course is another question, but the golden rule here is “if in doubt, don’t say anything”.

On Being Challenged, Not Disabled

As most of you will know, I have not only Asperger's Syndrome, but also Chronic Fatigue Syndrome. I also, incidentally, have arthritic knees and a temporary disability in the form of a still-mending broken ankle. So in most people’s eyes, I would certainly slot into the ‘disabled’ category. Yet  I’ve always felt uncomfortable describing myself as disabled, most especially in regards to my Asperger’s Syndrome, but even when considering my other, physical, impairments.

 I’ve been thinking about all this for a long time, and I’ve finally realised why I feel that discomfort. The Concise Oxford Dictionary definition of ‘disability’ is ‘thing or lack that prevents one from doing something… physical incapacity caused by injury or disease’. But I don’t see myself as totally prevented from doing certain things. Rather, I see myself as extremely challenged in doing them. This isn’t being all PC, it’s simply that I feel ‘challenged’ describes way better how my life works.

 I am challenged, in that many, many things are difficult for me, some of which I don’t care about and hence would never bother attempting anyway, some I’ve given up only reluctantly, and others I can do only with assistance, or in small doses, or with extreme care.

 So I’ve decided to try and list (yes, I know, another list!) the ways in which I am challenged, ways which aren’t likely to change anytime soon.

I am Physically Challenged. It is true that many physical activities which others take for granted present significant challenges for me. CFS imposes limits, as does arthritis, how severe depends on how bad my conditions are on any given day. (The ankle, of course, also imposes its own set of limitations.) I can’t work full-time, lift a lot of heavy loads, stand for a long time or walk long distances, and can no longer run or dance or even walk fast, even on good days. Plus, I have to do far less of anything in any given day than others would, or I risk running out of ‘spoons’. Even reading or using the computer can be tiring, for instance, if I do them for too long. I am constantly calculating my spoons, to see what else I can manage that day. Some days, that’s not much at all. Other days are better, but it’s never up to the same level of activity as others can do.

I am Sensory Challenged. I’m challenged, daily, to cope with the sensory barrage of everyday life. I can largely avoid or minimise it in my own home, and to some extent outside it too, eg going to the supermarket when it’s not so busy. But not always, even at home. And sometimes it’s totally overwhelming, and I just have to escape, withdraw, and do my best to avoid a meltdown. It’s a perpetual struggle, and one I know I’ll have to deal with for the rest of my life. And one which others often underestimate or don’t take into account, adding to the struggle.

This challenge is due to not only my AS, but also my CFS. When I acquired the latter, it made already acute sensitivities far worse, especially around glaring lights, certain types of noise and strong chemicals. My intolerance of the latter is especially acute, and means I simply don’t use a lot of fancy cleaning products in my home, as well as strong-smelling toiletries and the like. It’s an aggravation I can avoid, so I do so.

I am Executive Functioning Challenged. All my life, I’ve had to struggle just to get my daily life in order – getting myself to school or work, keeping my house clean and tidy, or just following reasonable routines that keep my life from descending into absolute chaos. When I was a child, my parents, especially my mother, structured things for me a lot, though I do remember she found it frustrating that I was such a ‘daydreamer’, as I was called then.

As an adult, I had to work hard for many, many years, before I established ways of living that suited me. And even then, my routines were (and are) easily upset. Sometimes people have implied I’m too fussy or rigid about them, but I know what happens if I’m not, I know how easily things can fall apart. I’m a bit more flexible now than I used to be, but only within certain limits. Because even now, these routines are something I have to deliberately push myself into completing. Every. Single. Day. And still, I often fail to achieve order. It’s an ongoing battle.

I am Anxiety Challenged. For most of my life, from adolescence on, I would probably have met the criteria for some kinds of anxiety disorder. Trying to avert or cope with sensory barrages, social situations and daily functioning problems, the whole blasted confusing torrent of modern life, for me meant living in a constant state of hyper-anxiety.

 I’m not talking here about a little nervousness, which is what most people (NTs) mean when they say ‘anxiety’. No, I mean the whole sweating, shaking, gasping, heart-pounding, quivering, whimpering, gut-churning, fight-or-flight, on-the-verge-of-freaking-meltdown total mess kind of anxiety. Fear, really. Fear ruled my life. What did so-and-so mean, when they said that? Why did Person X do Y? Had I unwittingly offended them somehow? Why did the things I found so overwhelming not seem to bother others? How could I avoid these things, especially when others didn’t seem to care about or even notice them? Why was I so wretchedly different to others? And on and on, winding myself into tighter and tighter coils.

These days, not only do I know the answer is Asperger's, but I’ve given up on that kind of excessive worrying. You can only exist in that hyper state for so long, and then either it implodes, or you do. In many ways, I simply don’t care what the vast majority of people think anymore. But now and again, anxiety will still return to plague me, usually triggered by some social challenge, though other things can trigger it as well. I have to do A LOT of self-talk, to unwind and calm down. It’s best, I’ve found, to avoid anything likely to set me off.

I am Socially Challenged. Like most aspies, I have absolutely no inborn social instincts. Every single social skill I possess is consciously learnt and consciously practised, and slow, clumsy and incomplete as a result. And this is in spite of deliberately setting out to learn them, to observe and imitate others, from my early adult years on. Decades of effort, however, have not really yielded all that much. I can ‘pass’ for a little while, hold a conversation for a little while, but any interaction more than the superficial, or sometimes even that, will have others looking at me sideways, giving me a puzzled or curious or “Why-are-you-so-strange” look.

So I find it best to not put too much stress on myself in the social arena, it tends to not only tip me into anxiety or overload, but be a Conspicuous Fail anyway. I stick to the people and interactions I feel are ‘safe’, or as much so as possible. Why take on challenges I don’t have to? And which I’ll never succeed at anyway?

I am Relationship Challenged. Relationships aren’t easy for anyone I think, whether NT or aspie/autie, yet this is an area in which I feel myself particularly challenged. Even many other aspies seem to handle relationships better than I can. Moreover, I’ve realised it’s not actually necessary to be in one, to be happy. In fact I function heaps better alone than I do in a relationship - I’m much happier, calmer and way, way less stressed. And so I’ve decided it’s simply a challenge too far.

Think of it this way – many people have climbed Mt Everest. But they typically do it with suitable training, experience, fitness levels, oxygen and equipment, and a big support team. Whereas for me… being in a relationship is like I decided to just take a stroll up the mountain in jeans and a t-shirt, without any equipment, support, training and so on. I’m that ill-equipped, that ill-suited, to the whole venture. And I never really got any better at it either, despite repeated attempts. Every time, I was just as raw, just as unprepared, just as inadequately equipped for the reality of it.

And so of course my relationships failed, spectacularly. Horribly. Repeatedly. And when they did, the biggest and most frequent emotion I felt was …relief. The kind of Oh-Thank-God-That’s-Over kind of relief you feel when you’ve attempted something you instinctively know is way, way beyond you, but which you feel compelled to try anyway, because ‘everybody else’ is doing it. So I made the decision some years ago not to make further attempts at relationships. I just don’t have the right emotional equipment, whatever that is, and have more than enough other stuff to deal with anyway.

So there you go. These are my challenges, most but not all the result of my Asperger's. This is my life. This is how I am challenged. How do you define yourself?

Tuesday, 1 December 2015

Why I Empathise With The Deaf

As someone with both Chronic Fatigue Syndrome and Aspergers Syndrome, I empathise with all my fellow disabled. However I'm finding the group I empathise most with, next to my fellow aspies of course, are the deaf.

There are lots of reasons for this. They start with the personal, such as my having known a deaf woman for many decades through a family connection. I've also had a slight hearing loss since my 20s, and, like many on the spectrum, I almost certainly fit the criteria for Auditory Processing Disorder as well. People's words frequently come across as sort of 'mushed together', and I have to unscramble or 'decode' them. It's hardest when speaking on the phone, and I've realised recently that face-to-face I do quite a bit of lip-reading – and so know how difficult-to-impossible that can often be, eg if someone has an accent, or a moustache over their lip, or turns their head away or mumbles.

But beyond these personal reasons, I find many similarities between the autistic and the deaf.

We've both have had our conditions 'medicalised', seen as pathological. We've been told that the Best Thing that can happen for us is some sort of 'cure', whether it be cochlear implants, learning to imitate speech and lip-read, or punishing rounds of 'therapy'.

We've both been taught we are 'lesser than' or inferior. Our natural states have been cast as 'lacking' or 'deficient' in some way, and we’ve been treated as though we’re somehow less than other human beings. We've been taught that to be hearing/NT is better, and that They Know Better Than Us, about all sorts of things, most especially how we should live our lives.

We've both been seen as 'stupid'. We've been called 'retards' or 'dumb', held back in education or given a lesser education, assumed to be non-intelligent if non-speaking, and often had it assumed, or even specifically been told or taught, that we ‘can’t do’ a lot of things, and so generally not given the same chances in life.

We've both been kept ignorant. Both groups have often not been informed of a lot of basic stuff about the world. Neither group 'just pick it up' - the deaf because they don't hear it, autistic because they don't 'see' it. If the deaf don't learn and communicate in sign language with their parents as children, and the autistics are undiagnosed, then the likelihood of this is increased. Both groups suffer lifelong consequences from this.

We’ve both have problems with communication. Sign language was suppressed for many years, and even now, few people outside the deaf community and their immediate families and teachers know sign language, and interpreters are still thin on the ground. Non-verbal autistics are still too often seen as ‘not having anything to communicate’ - even if they have communication devices, they’re still sometimes not listened to. Even if an autistic is verbal, they can also have difficulty communicating their needs to others.

We've both experienced forced normalisation. There’s been so much pressure on us to be or at least pretend to be ‘normal’, whether it be the tyranny of oralism for the deaf, or 'indistinguishability from their peers' for us. The over-riding message has been that ‘not normal’ is bad, that we must not sign, or flap, or show any obvious sign of our ‘defectiveness’, that we should aspire to be normal, or to imitate it as closely as we manage, no matter what the personal cost to us.

We've both have been punished for doing what comes naturally. This is of course sign language for the deaf, and stimming and other autistic behaviours for us. This follows on from that forced normalisation – all our natural behaviours and means of communication have been suppressed “for our own good”.

We've both been victims of various kinds of maltreatment. We've been beaten up, bullied, abused, yelled at, laughed at, scorned and jeered at, rejected, ignored, etc, etc, ad nauseum. We've been excluded from professions and jobs because other people tell us we aren't capable of them, we've been discriminated against, jailed, put in mental institutions, or even killed. The list is a long one, and it ain’t over yet.

We’re both invisible to others. We’ve both been marginalized. As far as the rest of the world is concerned, deaf or autistic viewpoints are so rarely seen or heard, it’s like we might as well not exist, most of the time. And so our needs are rarely if ever taken into account when facilities are designed or events staged. A recent example is the lack of captioning for Rugby World Cup events on New Zealand TV. It’s like it never occurred to the Powers That Be that the deaf might be interested in watching rugby.

We’ve both had to find our own ways of doing things. For both groups, a lot of the aids we need are visual. Charts, lists, maps, social stories, teletext captioning, cellphone texting, AAC devices, computers, the Internet/email, etc, are of vital importance to us, yet often we’ve had to find, invent or insist on them ourselves. Others have been so insistent on normalising us that they’ve ignored or denied us what we really need.

We've both overcome all the above, to form communities of our own. We’ve rejected so much of all of this BS, to find each other, support each other, and form our own communities, where we can communicate, share, and socialise in our own ways, on our own terms. There is often a sense of relief and belonging somewhere, for the first time, when we enter these communities, plus a shedding of a lot of old worn-out ideas about who and what we are.

Things thankfully have changed and shifted for the deaf in recent decades, though I don’t doubt many of them would still say there’s a long way to go. We autistics are still stuck in the past in this regard, somewhat behind the deaf, a lot of the worst things are still happening for and to us. It fills me with frustration, but I remain hopeful that we will find ways to effect change. It’s certainly about time. Both groups deserve so much better than this.