Things I Detest - A Totally Random List

Muzak. You can't call it music.

CHRISTMAS muzak. As if the regular sort isn't bad enough.

Phone salespeople - I hang up on them now.

Religious doorknockers. I sometimes feel like saying to them, "how about we make an agreement - I don't come to your door, pushing my views on you, and you don't come to mine, pushing yours on me. Deal?"

TV shows such as Survivor, The Block or Big Brother, because I don't get the emotional games played, I think it's all BS anyway, and don't give a rodent's posterior who wins. (I must confess to sometimes watching a bit of Masterchef, because the food looks delicious!)

Sitcoms, especially American ones, as they're based on people making idiots of themselves, and I've had way too much of that in my own life.

Cricket. One notch above watching paint dry. Make that half a notch.

Asparagus. Blech.

Stuffed marrow. Ditto. My mother used to cook it for us when I was a kid - until the day I said it looked like cooked snot. Funny, none of the rest of the family wanted to eat it either after that...

Things that are fiddly to open - whether it's a jar of peanut butter or a new packet of tissues or whatever. Not being especially co-ordinated or strong, I just get so damn annoyed with them, I could throw them across a room.

The Briscoes lady. She irritates me, she and all her white, middle-class, oh-so-healthy-looking sisters in ads, who somehow manage to produce big, white-toothed smiles and talk at the same time. They look like ventriloquists' dummies.

How it's always the most irritating songs that stick in your head. Why can't it be one of the nice ones?

Doing dishes. The most boring job on earth.

Music being played - LOUDLY - on people's cellphones in the street. I've blogged about this before, but it still irritates the crap out of me. Get some earphones, people.

Harvey Norman ads - they're always YELLING AT ME ABOUT ALL THE WONDERFUL SAVINGS I'M GOING TO MAKE IF I SHOP AT THEIR STORE HURRY NOW!!! I don't give several rodents' behinds what your specials are, Mr Norman. Just turn down the volume on your ads, because I'm less than impressed.

...and I will probably add to this list at some point. In fact, it's inevitable. Sigh.

A website for aspies

I don't normally plug other people's websites - there are far too many out there for me to read and/or recommend - however this site is related to a group I'm in on Facebook, and the moderator asked me to check it out. It looks pretty good to me, so here's a link to it, which is also in my 'websites of interest' list, down the right side of my blog.
www.alwaysaspergers.com

Life Is Like A Game Of Solitaire

I realised something recently about the computer game Solitaire, which I play quite often, how it's in many ways a reflection of life, or my life to be exact, as I've lived it to date.

For instance, there are the 'games' I just couldn't win, and was foolish even to try. I was always doomed to fail them. But I didn't know that to start with, and so I crashed over and over again, until I learnt, painfully, the hard way - because I had no-one to guide me, no-one to point out that I couldn't possibly win them - which games to never even start.

Then there are the games I thought, even after learning about the first sort, that I could still win at, they seemed hopeful, until by about halfway through the game, I realised that they were just as unwinnable as the first, at which point I had a choice to either go on to certain defeat, or to cut my losses and walk away. "This counts as another loss in your statistics..."

Oh yes, the little message that pops up when you've lost a game - "do you want to start a new game? ...To redo this game? ...To continue playing this game? ...This counts as a loss in your statistics", etc. Whatever your choice, the message is clear - "Loser, loser!" The world has told me that too, in a complex variety of ways, over and over again. I don't need reminding.

There are also games I think I'm finally winning, yes, yes, nearly there, I've got it, my God I've actually got it... and then... BANG. I haven't. Chalk up yet another loss, and walk away. Try again with a new game, a new day, a new life...

 Sometimes, I think I know what I did wrong, and I'm all "oh, if only I'd done this, or that, chosen this or that 'card' instead of the other", going over and over the 'game', but I never know for sure, except by going back and repeating everything, and that's a loser choice in itself, and often not possible anyway. And sometimes I couldn't spot my mistakes at all. Sometimes, it only seemed like the harder I tried, the worse things got, and the more I lost. And I felt stupid, for 'doing it all wrong', for not being able to see the 'right' choices to make, like 'everybody else' did automatically, or so it seemed to me.

 Often, I would eventually stop caring, and then it didn't hurt so much, only I would then find I was just going through the motions, and not really engaged with the game at all, and my 'win rate' went down even lower.

And sometimes, finally, eventually, after much time and effort and concentration, I even win a game - only to realise, after a temporary exultation or relief, that I've been so caught up in the damn thing, trying to 'get it right', that I've actually ended up wasting huge chunks of my time and energy on something that wasn't really worth it, and that I would have been far better off employing said energy etc to some more beneficial goal.

With Solitaire, my losses rank far higher than my winning games - I'm slightly embarrassed to admit I only win about 6%, which is probably about my winning average in life as well. Sometimes life just sucks, or is it me...

Someone once said to me that 'theoretically' it's possible to win every game of Solitaire. I immediately forgot the 'theoretical' part, and took this as meaning that somehow "everybody else" "just knew" the rules, and how to win at the 'game', and only I was too stupid to figure it out. Once again, too like my life for comfort. I now realise that wasn't what was meant, but still, it's hard to shake off. It's hard to be positive about life, oops I meant Solitaire.

I think I need to try a new game.

Why We Need Mentors

I've called this "Why We Need Mentors", but it could just have easily been titled "What Happened To My Life?"

I began my adult life with a whole bunch of expectations, most of which involved assuming my life would be like other people's - marriage, motherhood, mortgages, the white-picket-fence-with-2.5-kids life in the 'burbs' thing... I didn't truly know how people got all that. It seemed to 'just happen' for them, and so I presumed it would for me too.

Well, some of it did. I did get married and become a mother, though younger than I'd thought I would. My marriage however was an abject failure - I made a lousy choice of mate, who proved not a good provider or all that stable, and we were never able to buy our own home. And then I started reading feminist stuff, eventually leaving the marriage and coming out.

 Still, all that meant was that I reframed my expectations. Instead of a man, I assumed I would find a long-term female partner, I'd get my degree, get off the benefit, and we'd settle down in happy domesticity, a sort of lesbian version of the white picket fence thing.

It didn't happen. Instead I had a string of short-term failures interspersed with long periods of celibacy, where I tried to figure out "what I did wrong", and how to do it differently next time. Then I'd launch myself out into the mating market again, thinking I'd solved all my problems, only to find - BANG. Another failure, and I'd reel back into celibacy again.

Friendships were another area I consistently failed in. They imploded, or drifted apart, or just never got off the ground properly in the first place. I couldn't understand it. I thought I was being friendly, helpful, nice, etc, why did no-one want to know me? Why was it such a struggle to connect with others?

I was attending university on and off during these years, but at times I struggled there too. Academically, I was doing okay, getting mostly As and Bs, but there was a lot of social stuff that I just didn't 'get'. I was putting a lot of pressure on myself at this time to be 'normal', and eventually, that pressure resulted in my health collapsing under the strain.

It would take another ten years before I would be diagnosed with Chronic Fatigue Syndrome, but the pattern was clear from the beginning - any severe stress, and my health took a nosedive. I began to use it as a reason to not do certain things, but only because I couldn't articulate my deeper, more long-standing reasons, which no-one would have accepted or understood at that time anyway. I still kept believing that my life would, at some magic point, straighten out, that everything would fall into place and come right. It never did.

I ended up leaving the city and living in the country for many years, while I tried to heal. During that time I finally managed a long-term relationship - only it wasn't exactly as happy as I'd dreamt it would be... I tried so hard to 'fix' it, draining my health, my vitality, the last of my youth, hope, romanticism and emotional energy in the process. I finally left only when I felt I had nothing more to give. And only then did I come to understand, way too late, that I'd been the victim of sustained emotional abuse.

I took stock - no partner, few if any friends, no job, no money, no possessions worth a damn, my health a wreck - where did I go next? Eventually I moved away to be closer to my family and start anew. Life since then has had a few ups and downs, but I still find myself, in my late fifties, poorer than I've ever been. I have no permanent job and little chance of one, my health is still not the best and in some ways is getting worse with ageing (eg the onset of arthritis), I've never owned my own home and am never likely to, short of a miracle. My family are supportive and help when and as they can, but still, life could be better. A lot better.

As for relationships - well. I picked all the wrong people, it's true, but then I could also say that none of the 'right' ones ever picked me. Suffice to say it's an area I'm not willing to venture into again, for a whole host of complicated reasons, of which being 'burnt' too often is only a part. In terms of connecting to others, the best thing that's happened for me in the last few years is not relationships but the aspie friendships I've made - they're one of the highlights of my life now.

But overall, my life has been, in many ways, a train wreck. Very few of my dreams and expectations have ever been met or realised - I've never owned my own home, never had a relationship that was worth the effort involved, never had a career (except for my writing of course, but I've yet to work out how to make that pay), I didn't even manage to finish my university degree. I rate raising my daughter as my biggest achievement - and don't get me wrong, I would still rate it that way no matter what else I'd done - I just wish I'd been able to achieve a whole bunch of other stuff too.

So what has all this to do with mentors?

It's this - when things have gone right in my life, it's always with the help, guidance and support of others. A typical instance is my getting to uni - for a while, I was friends with a woman who'd done several degrees, and who 'knew the ropes'. I quizzed her endlessly, and she very patiently showed me how to enrol, told me all about degrees, courses, prerequisites etc - we later drifted apart but I'll always be grateful to her for her assistance. It's very likely that I wouldn't have gotten to uni at all without her help. It was typical of a consistent pattern - if people were willing to patiently explain things to me, and guide me through new things, my life went much, much better. Other times, I got through life changes only with the practical help of family and friends. When I was lacking such support, that's when my life would go haywire. The inevitable result was a good deal of anguish and stress.

Maybe some of all this would have happened anyway, aspie or not, mentors or not, - I would still have come out for instance. But there's no doubt in my mind my life would have gone a lot better, if only people had realised just how ignorant and in need of help I really was, and given me a lot more guidance.

Many other aspies seem to be the same, I've heard many lament how they can't make or keep friends or relationships or jobs or stay in education, how their lives are going to ruin, they're homeless or unemployed or whatever, because they just don't know how best to get by in the world, they lack the practical knowledge or skills or social skills to rescue themselves - and no-one is helping them.

                                                                                                                                          
WE ALL NEED MENTORS. Everyone of us on the spectrum needs mentoring, sometimes throughout our lives. It doesn't have to be a big, formal thing - though that can help those who don't have families etc to step in and do this role - but it is a very real need, even when the individual is well into adulthood and seemingly independent.

Now, I understand that most people live busy lives and they can't always spare the time - even if they understand the need - to mentor someone. But whenever anyone, be it a private individual or a member of an agency or organisation, can fulfil this role, I would plead with them to do so, as the lives of the autistics they touch can only be better off for it. Because with the right practical help and patient support, we can achieve great things.

On Making Mistakes

I've been thinking lately about how we aspies absolutely hate to make mistakes. It can be anything from a social blunder to driving down the wrong street to making a slip-up at work - the type of the mistake doesn't seem to matter as much as that we've made an error at all. It triggers our anxiety and autistic shame, and we can get very upset, even have meltdowns, or angst for hours, days or even weeks over something that an NT either wouldn't fret over, or wouldn't do so for long. We just can't seem to let mistakes go.

I have struggled with this issue myself for most of my life, and have won only a partial victory over it, and so when I see other aspies/auties doing it, eg in my Facebook autistic groups, I feel a strong empathy for their pain and confusion. So I'm going to try to analyse why we react so badly to making mistakes. Bear in mind this is not a definitive or 'final' list, more of an attempt to open discussion, sort of like lancing open an infected wound so that it can begin to heal.

So here's why I think we react so badly. I've listed them separately, but of course they are often entangled and influencing each other hugely.

1) Fear. We have usually learnt to fear other's (often forceful) negative reactions to our mistakes - their criticism, disapproval, anger, hostility, jeering, or even outright abuse. So when we make a mistake, we cringe in shame and perfectly understandable dread. It's possible that this could even be the biggest reason for our dislike of mistakes, or at least the one that first makes us aware of them.

2) Orderliness. We live in a confusing, overwhelming, constantly changing world, and so we need to create our own order, those routines and habits that help us manage our lives. A mistake (eg forgetting to set an alarm clock) can disrupt this order, make us feel like everything's falling apart, and send us into a tailspin as a consequence.

3) Perfectionism. Any perfect pattern or order, whether we create it or not, is soothing to our often jangled nervous system. We like to have things fixed in place, and an error disturbs that perfection. We get upset when others disturb the perfection we've created, but perhaps we get even more disturbed when we do it, because we feel we should "know better". We can hold ourselves to even higher standards than we do others.

4) Low self-esteem. This is common amongst autistics, caused by a lifetime of criticism and other bad experiences. We often have to "try twice as hard to feel half as good", and so any mistake, however small, can cause us to beat ourselves up emotionally as a result. It's sad, but true, that sometimes we even self-criticise worse than others have done to us.

5) Catastrophising. You all know what I mean by catastrophising, I'm sure - that horrible negative spiral of thoughts we can get into, where we make 'one little mistake', and before we know it, we're imagining our whole world unravelling, our lives ruined... And afterwards, when we realise that our worst-case-scenario thinking was totally unfounded, it makes us feel (yet more) stupid and ashamed. I'm really not sure if catastrophising is a cause or a consequence of our loathing of making mistakes, maybe both, but I do think that a fear of triggering it would make us hate mistakes even more.

6) Perseveration. We have a tendency to go over and over events endlessly and at times obsessively in our minds, unable to let them go, and when we do that about our mistakes, it almost always leads to that catastrophising. And reinforces the low self-esteem, the self-bashing, the desire for perfection, etc, etc...

So what can we do about it? How do we stop doing this to ourselves? Perhaps we might never be able to entirely stop, but we don't have to suffer in silence forever either. I can only offer a few points that have helped me, I'm sure others will have other methods, this is, as I said, hopefully the beginning of discussion, not the end.

a) Accept that we can't prevent ALL mistakes. We are human, and therefore will blunder sometimes. Socially, we will blunder more than most. It's important to remember NTs make mistakes too - and because their memories don't seem to sear into their consciousness the way ours do, they also forget (and forgive) much quicker than we do, ie make a mistake one week and they'll have forgotten about it by the next.

b) Share with other autistics. Sharing with NTs usually only gets us more upset, because we end up feeling stupid and ashamed for feeling that way in the first place. But other autistics understand where we're coming from, and can offer solid advice and support. I've often felt much better after sharing with other aspies, and I've noticed other aspies seem to as well.

c) Get support in learning what we CAN prevent. What support you have will of course vary, but use every means possible, including any supportive NTs, to 'fill in the blanks' of your knowledge of the world. You'll be less likely to make mistakes if you're less ignorant of a whole bunch of stuff, including social rules and what's considered 'proper workplace behaviour'.

d) Stop with the negative self-messages. Stop the spiral of angst and self-hatred, preferably before it gets properly started. Meditation has helped me a lot over the years to get out of the "Oh God I'm so stupid" thinking and into a more rational space, a lot faster and quicker. For some, medication may be necessary to cope with their anxieties, but it's important to remember all medications have side-effects, and sometimes become less effective over time.

e) Have a Plan B. This is essential for when we make mistakes in our daily routines or travel. If we miss the bus to work for instance, perhaps we could catch another, or a train, or get someone to drive us... there's always another way to get our routines back on track. So always have a Plan B - and if need be, Plans C, D, E and F as well!

f) Dump your toxic connections. Wherever possible, dump those negative people, especially the downright abusive types and the just-don't-understand-or-want-to-understand-autism types. Yes, even if they are family. When you're trying to repair your self-esteem, you don't need anyone tearing you down again. Be ruthless. Press the dump button on them.

g) Above all - forgive yourself for making mistakes. I know this is easier to say than do, but if we can perseverate over our mistakes, then we can turn that to perseverating over not perseverating! We need to stop beating ourselves up for our mistakes - they usually aren't worth it, and we deserve better than all that angst. You're worth that, each and every one of you. 

Things I Don't Understand - Number Seven

I don't understand greed.

I don't mean being greedy for food, I do sometimes want to gorge myself on food that tastes really good, eg Christmas dinner, though I've learnt to restrain myself, as the results are not good! No, what I mean by greed is financial greed, the urge to accumulate more and more money, gather more and more of it into one's hands, or bank accounts.

I'm thinking here of how, when a reporter once asked an extremely wealthy man what he wanted, he replied "more money". He already had more than most of us could spend in a lifetime, yet he wanted more. And I suspect there are many out there like him.

Greedy people have always been amongst us, and there have always been disparities of wealth, though till the Industrial Revolution only royalty and the most powerful nobles could hope to live truly extravagantly. The resources and the material goodies just weren't there. And there have also always been those opposed to anyone having such a lion's share of the world's wealth, especially if it's at the expense of others (and it usually is). And during the middle decades of the twentieth century, it truly did seem that the world's wealth was becoming more evenly distributed, at least in the Western part of the world.

Now, however, it seems the wealthy are gaining the upper hand again. I read somewhere recently that in the 1960s, the USA's richest men had about thirty times the income of the poorest. These days, the richest are worth around three hundred times the poorest. (I don't have the reference handy, but it was something like that.) With this sort of concentration of wealth in the hands of fewer and fewer people, is it really so surprising that even the middle class are struggling, while the truly poor increasingly go to the wall? I think not.

Even in New Zealand, a country traditionally without this kind of financial obscenity, we are beginning to see such differences. In the same week that Campbell Live, a NZ current affairs programme, campaigned to raise money for Kids Can, a charity that feeds kids in poor schools, one of the wealthiest men in NZ launched his new yacht in Norway - worth around $NZ 78 million. The Campbell Live campaign raised around $NZ 800,000. This means that for less than one seventy-eighth of the value of his yacht (and he already has two others), this wealthy man could have provided breakfast and lunch for hundreds of hungry kids from poor families.

There are of course plenty of other obscenities of wealth out there. The movie stars who think nothing of spending thousands on a handbag or scarf, or tens of thousands on 'therapy', while just a few miles away homeless people are rummaging in bins to feed themselves. The huge houses of the rich, while down the road kids go barefoot and hungry to school. And no, I'm not talking about third world countries, but countries like New Zealand, Australia, the UK and the USA. 'First World Poverty' is very, very real, and becoming more so.

Don't get me wrong - though I would be deemed at least 'left-leaning' by most standards, I'm not any kind of communist, in fact I dislike communism as a system. And life's luxuries are very nice, I wouldn't deny that. I like decent cars and a nice house and smart clothes as much as the next person. I also know that many of the richest do give substantial amounts to charities. Though perhaps not all - a recent magazine article here in New Zealand asked if being rich made you nasty and selfish - and it seemed that sometimes, yes, it does. A typical example they quoted was how street charity collectors often get a better response in poorer neighbourhoods than they do in rich ones, that in fact the rich often ignore such collectors. The phenomenon of the rich attitude that the poor are 'just lazy', and should 'pull themselves up by their bootstraps' is also very real too, according to that article - which of course totally ignores the fact that a) not everyone has the entrepreneurial ability to become rich, and b) they've left a lot of us without any metaphorical 'boots'.

I don't know if my lack of understanding on this is due to my being an aspie or not - I have noticed many aspies do seem to be on the 'left' side of the political spectrum, probably because of our passion for justice, which extends to social justice. Others seem to be totally neutral, either undecided or so turned off by humanity that they don't give a damn, while a few express rabidly right-wing opinions - though I've noticed they also seem to be the ones who have jaundiced, misanthropic views in general, due usually to years of ill-treatment from the world.

I wonder too if my attitude is at least partly due to the family values I was brought up with. These values weren't made explicit, were never lectured to us or pushed on us, but rather simply demonstrated. I grew up seeing my parents get involved with groups such as Plunket committees, school lunch committees, and Lions Clubs. In more recent years, groups like the Child Cancer Foundation, Hospice, Save the Children and others have received the benefits of my family's energies. Moreover, we've all tended to gravitate towards careers and jobs that help, educate or take care of people - nursing, education, social work, etc. Community involvement is almost taken for granted in my family.

This philanthropy goes further back than just this generation - family history research has turned up evidence my ancestors were on church or sports committees, organised fundraising events, or were members of such groups as the Rebekah Lodge, the Hibernian Society and the Druids Lodge.

I've also had more than one discussion with various family members about "what we'd do if we won Lotto". The general consensus was that, after we'd satisfied our own needs, we'd distribute our wealth. 'Paying off our younger generation's student loans' and 'buying everyone in the family houses' featured prominently on that list, and there was a general feeling that beyond taking care of your own needs, it was best to 'spread the wealth' and help as many as possible.

Or perhaps my attitude is because of my own personal experience of all too often having to go without - I've survived, at times, thankfully never for too long, without things that most Westerners consider 'basic amenities', such as fridges, electricity or hot and cold running water; I've also lived (for a few weeks or months each) in a tent, caravan, housetruck and converted cowshed. I've gone without fancy clothes and many material goodies that others take for granted, and had to trim my budget or shopping bill to eliminate anything not absolutely essential to keeping body and soul together. I'm not saying this is a good thing, I'd very much like to not have to do that, but it has taught me you can live without many of the things most Westerners consider necessary to existence. Luxuries are very nice, but they're not essential. Other life-experiences have also contributed to what I can only describe as a feeling that "all things are best in moderation".

And that includes wealth. So I just don't understand greed.

That Autism 'Suffering' - Part Three

In this final installment of my investigation into the causes of our suffering, I examine 'external' causes. Not all of us will suffer from all the internal causes, but it's probable we all do, in one way or another, from the external ones. These can be roughly grouped in the following categories -

      i) Other people's attitudes towards us - gross distortions and misunderstandings of what autism actually is, what an autistic child or adult 'looks like', or behaves, or why, or what we're capable of, invariably cause us distress. Hearing all the negative opinions so many have about autism can cause us to feel alienated, self-hating and depressed, especially if it's coming from those closest to us, or from a seemingly ignorant and blinkered media. These distorted beliefs can see us -

- as children, hearing our parents say to others, right in front of us, that they wish we weren't autistic, or that autism is 'dreadful', or that it causes them to suffer, etc, etc.

- having adults refuse to listen when we try to tell them we're being bullied, and/or being told it's our own fault, for 'choosing' to behave in certain ways;

- being criticised for 'attitudes' we don't in fact have, or told we're being something (e.g. rude) we in no way intended, and then not listening when we tell them this;

- being told that we or our child "don't look autistic", or that we're "just jumping on the latest bandwagon", or "making a big deal out of nothing";

- having it assumed we "can't' do" such and such because we're autistic, and then if we show we can, being told that we "can't really be" autistic then;

- having what we say ignored or discounted because we "don't understand" emotions or ourselves or can't do theory of mind, etc, etc;

- having hostile autism parents call us various nasty names, and claim that if we can communicate at all we "can't really be" autistic, and should be ignored;

- having certain autism organisations describe us as 'thieves' of the 'real person' supposedly hidden underneath, or as destroyers of families, or 'brain-damaged', or defective in some other way;

- having people tell us how "weird" we are, or asking "what planet do we come from", and even suggesting we should go back there;

- cringing as yet another autism-negative article appears in the news;

- fearing for our personal safety in the face of some people's hate-filled attitudes.

All of these, and more, are daily examples of how people's attitudes cause us suffering.

      ii) Other people's treatment of us - There are many ways we are actively 'managed' that induce suffering. Among just the most obvious are -

- forcing us to make eye contact or talk or move in 'non-autistic' ways;

- stopping us from stimming or following our special interests;

- suppressing any other facet of our being that is obviously autistic;

- inflicting 'therapy' on us that is boring, meaningless, frustrating or even harmful or dangerous;

- incarcerating us in institutions like the Judge Rotenberg Centre or other psychiatric facilities or even jail;

- forcing us into counselling or psychotherapy that ignores our autism and blames us for our problems;

- abusing or bullying us as children or even adults;

- laughing or jeering at us;

- ridiculing or belittling us;

- rejecting or excluding us;

- firing or refusing to hire us or bullying or harassing us in the workplace;

- refusing to give us the support we need to access education.

      iii) Other people's social interactions with us - Our difficulties interacting with others are the result of the above two 'external' factors - others not understanding us or behaving well towards us - combining with various 'internal' factors such as lack of ability to read non-verbal clues. The results can only be painful. Bewildered and hurt, we often reel away into semi-reclusiveness. Or we are cold-shouldered and excluded from social interaction - which doesn't help at all, we never understand why, and it just hurts.

So in writing this, I've realised that, though there are far more 'internal' causes than 'external', the external ones are SO big, SO influential, they inevitably interfere with the internal ones. People don't understand us, don't provide support or the knowledge or skills we need, leave us to flounder and fail, or treat us in ways that actively make our lives much, much worse. Hence, whatever the apparent cause of our suffering, the primary cause is the attitudes and practises of others. And if these external causes of suffering could be reduced or eliminated, then so much more energy could flow into providing the practical support and accommodations needed to overcome the internal causes of our pain and suffering. It truly is all about attitude, and the behaviour that follows from that.

That Autism 'Suffering' - Part Two

In this next part of my investigation into the 'suffering' of autistics, I look at the things autistics themselves - or in some cases the more objectively observing of their parents - put forward as the actual causes of autistic pain and suffering (as opposed to what many non-autistics believe are the causes), along with possible ways non-autistics can support and help us.

There are quite a number of them, and in this post I'll look at the 'internal' causes, those  that arise out of our 'different' way of being, and/or are closely associated with autism.

      i) Communication problems - especially if we're non-verbal, but even those who can speak sometimes have difficulties. We might 'lose our words' under stress, not be able to find the right ones, struggle to process and respond quickly in conversations, or just find it so much easier to write than speak. The use of computers, other communication devices, sign language or writing, along with simple patience on the part of others, would go a long way to help.

      ii) Auditory Processing Disorder - This is part of i). If what we hear sounds distorted or garbled, and it takes us ages to 'decode' what's been said, then we can feel stupid, embarrassed and hurt by others' reactions to this. Others can help us by speaking clearly, minimizing background noise, and waiting patiently for our responses.

      iii) Executive dysfunction - basically, we can't get our lives together. The results can be disastrous, and extremely distressing to us. We will flounder through life and ultimately fail at it - or at least feel like total failures - unless those around us help us learn how to organise ourselves. This is important not just for children, many adults on the spectrum could also do with such support.

      iv) Emotional Regulation - Many autistics have difficulty identifying, expressing and/or controlling their emotions. This can cause a great deal of suffering, especially if it triggers public embarrassment or hostility. There are various methods of helping autistics with our emotional states, including emotion charts, meditation or medication, but needed first is an understanding that this isn't a case of us just being 'spoilt brats' or 'cold and unfeeling', but a real and often painful challenge.

      v) Fear of change - Just about every autistic I know gets distressed by change. Something about our minds is too rigid to cope with it. Visual aids of various kinds are helpful, as is lots of preparation and planning beforehand, and being taught the 'Plan B' approach. Ultimately though, only repeated experience will help us develop the skills and maturity to get through changes.

      vi) Lack of social skills - Our lack of any 'intuitive' knowledge of how to interact with others, combined with inability to read non-verbal clues, means frequent social blunders. The resulting hostile reactions often cause us considerable distress. If others grasped that we are socially 'blind', and certainly don't intend to offend, and instead of condemning us quietly advised us on what, and what not, to say or do in situations, and (most importantly) why, it would assist us a great deal.

      vii) Poor Impulse Control - Impulse control seems to be a problem for many autistics, and can cause much suffering, whether it's through rushing headlong into possible danger, saying things without thinking, being unable to restrain ourselves from 'compulsive' behaviour, or even 'burning our bridges' because we've made too many mistakes, or plunging into disaster in some other way. Self-regulation is a very important skill, and one we usually need help in learning. It's difficult to learn it without such support - I speak from personal experience here.

      viii) Sensory overload - this one is tricky. The immediate causes are outer - i.e. the sensory input - but the ultimate cause is internal, i.e. our senses turned up to the max. The difficulty with managing it is twofold. One, heightened senses can also be wonderful, such as when listening to our favourite music. Two, not all the sources of over-stimulation can be avoided. It's pretty hard, for instance, to stop birds tweeting, dogs barking, or babies crying. Much relief can be found however. For example autistic students and employees could be allowed to wear sunglasses, caps, etc, in the classroom or workplace, lighting can be adjusted, and so on. Acceptance by others of the desperate need for such accommodations is crucial.

      ix) Meltdowns - These can cause us a great deal of suffering, both in the lead up to them, and in the actual experience - not to mention other people's unsympathetic or hostile reactions. We don't want them to happen, but can't always prevent them. If others understood the difference between meltdowns and tantrums, and did their best to assist us in eliminating the causes and creating safe, quiet places we can go to be alone and recover, it would go a long way to alleviating our suffering in this area.

      x) Gut/dietary problems - A lot of us have sensitive digestions. If an autistic person is having lots of diarrhea, constipation, etc, and constantly feeling or seeming unwell, then it may be worth trying different diets. Note though that even that if we don't eat, say, gluten, this doesn't mean we will magically not have autism anymore. It just means that if we're not sick, we will have more energy to deal with life and its challenges.

If my solutions to our suffering seem glib, I don't mean them to be. I know that they usually entail a good deal of hard work, on the part of the autistics themselves, and/or their parents. But what does strike me is that a change of attitude combined with practical help will alleviate our suffering far more, and far quicker, than any hyperbaric chambers or bleach enemas or worms or any of the other and often ridiculous 'cures' being touted by the autism industry.

In my next post, I will examine the 'external' or 'outer' causes of our suffering.

That Autism 'Suffering' - Part One

A while back, a friend of mine was sent an email by an autism parent, angrily reproaching him for trying to stop autism parents doing certain treatments on their autistic kids. He claimed, as many such parents do, that he and others were simply trying to "stop their pain and suffering".

This idea of autistics ‘suffering’ is something that bugs me. I feel it needs more attention. It's a big issue, I've realised, so I'm going to split it into three parts.

In this part, I ask what is it that parents (and all the autism 'experts' and autism industry that caters to them) are seeing, when they say their child is ‘suffering’? (And please note here, I am NOT talking about those who use various therapies in service of what I call the 'maximisation' approach, but rather those who form what is not-so-fondly known as the 'curebie' brigade, who take the opposite or 'normalisation' approach.)

Firstly, there seems to be an assumption on the part of these parents (and others) that simply being autistic means an individual is ‘suffering’. Sometimes they appear to think this is so through having observed some aspect of their child's behaviour, e.g. frequent crying, meltdowns, or the child's frustration when they can't communicate. So they think, "well, this is caused by my child's autism, therefore if I can get rid of the autism, I will relieve their suffering." That autism is fixed at the genetic and neurological level either isn't understood or isn't accepted, nor do they seem to consider that there might be specific, removable causes for that behaviour, i.e. some other (and easier) way to alleviate their child's difficulties that doesn't involve attempting to remove their autism wholesale. They 'have' to eliminate the autism, they believe, and so anything and everything that might achieve this is okay. Some of what they do is patently useless (hyperbaric chambers? worms? really?), other stuff alleviates some distress in some cases, e.g. gluten free diets (though only, it seems to me, where there are definite physical signs of ill-health), but don't rid us of our autism, per se. Yet other treatments, such as bleach enemas, are exponentially more harmful. Parents who take this approach often seem to feel either that a 'temporary' suffering is necessary to a long-term 'solution', or - more drastically, in some cases - that they'd rather see their kid dead than autistic.

More often, however, the underlying thinking seems to run like this - "If I was autistic, I'd be miserable. Therefore, they must be too, and I have to do everything possible to eliminate the autism, so they can be happy." The parent thinks, for instance, that a child who spends a lot of time alone must be miserable, because they would be, if they had to be alone that much. That we might have different needs, that we might not only be perfectly happy alone, but in fact need large chunks of solitude in order to 'recharge' our emotional /social/ physical batteries, so we can go out into the world again, never seems to occur to them. Or if it does, they take that somehow as further 'proof' of what's 'wrong' with autism.

These above beliefs, in turn, combine with another belief - or simply an assumption -namely that autism itself is a bad state. It's 'abnormal', and therefore 'of course' those with it 'must' want to be relieved of it. Because being 'normal', i.e. NT, is not merely superior, but the only 'right' way to be, and only 'normal' people can be happy. Right?

Wrong.

And yes - before anyone points it out - I do accept that many of these parents are simply ill-informed, tragically caught up in the whole 'defeat autism' thing, and are genuinely just trying to do the best they can for their child. I know this. Nor am I denying that being autistic often means experiencing pain, frequently, and rather a lot of it. I wrote a post  here on just that recently. However, I believe that our pain is not through being autistic per se (i.e. the different way we think, feel and react to the world, which forms the core of our autism 1), but through difficulties that arise out of that different perception, or 'co-morbids' associated with autism, and/or - most especially - other people's reactions to our autism. Yes, it can be difficult to separate out all these things, but I'd like to try, so as to tease out the real causes of our 'suffering'. They seem to fall into two main groups, and in the next two parts, I will examine those.

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1 It has been said (though I can't remember by who) that left alone in a room, our autism 'disappears'. That is, we're okay until we have to interact with the world. It's then the pain and suffering starts.

On 'Soul Loss'

Recently I was (re)reading one of my favourite books, Julia Cameron's 'The Vein of Gold', and happened upon a passage about a psychological phenomenon called, in the shamanic tradition, 'soul loss'.1 It happens when we are the recipient of various kinds of negative experiences, especially of the more insidious kind, such as the harsh criticisms designed to squash any creativity or non-conformity in children. Given various labels (dreamers, flaky, unrealistic, even selfish or stuck up), or simply having our talents denigrated and belittled, we set aside our dreams, and lose touch with those parts of our true selves. And it can often be difficult to get them back; every time we think of doing something creative, the voices from our childhood surge back up - "You think you can draw? (Or sing, or write, or dance, or...) Who are you kidding?" Paralysed by this internal critic, we're not able to believe in ourselves or our creativity, and so it's suppressed, souring our lives. If the belittling or sidelining of one's talents has continued into adulthood, eg from unsupportive partners and friends, it's even harder to believe in your own abilities, and stay in touch with your creativity. Many try to 'fill in the gaps' in their sense of self with various substitutes, including drugs, alcohol, sex, relationships or workaholism, or they take out their frustrated desires on those around them. The main object of Ms Cameron's books is getting in touch with that creative self again, and healing it.

But on reading her words, it occurred to me that we autistics must also experience soul loss. Think on it. We are routinely denied a full and true expression of our autistic selves. Autistic children frequently have their stims and other openly autistic behaviours suppressed, often ruthlessly. Even as adults, our mannerisms are often made fun of. Both as children and as adults, we are forced into the straitjacket of 'normality', and are robbed of any authentic sense of self as autistics. Not to mention that almost daily, we hear the messages that autistics are terrible in one way or another. Words like 'epidemic', 'stolen', 'tragedy', 'brain-damaged', etc, are used to describe us. The media regularly publish or broadcast articles and news items that, whatever their actual words, almost always convey a message of fear and loathing for the 'modern scourge' we represent, usually with a heaping of sympathy for the 'poor parents' who have to 'put up' with us. Professionals regularly release news that they have found yet another possible 'cause' of autism, and/or discuss us using the language of pathology and disease, all the results of their research being structured so that we are the ones with the 'lack' of something 'normal' people have. Commonly repeated ideas of autistics include that we lack any empathy or sensitivity, that we 'don't want' the company of others, and are incapable of love. Or that we are lacking in intelligence and awareness (if classic or 'Kanner's' autistic), or are all computer nerds and hackers, if Aspergers.

We are put through 'treatments' that would be considered abuse if done to anyone not autistic, incarcerated, or abused outright (that is, without even the excuse of 'treatment'), and even murdered, for the 'crime' of being autistic. And even if our abusers and murderers are brought to justice, they either get off with the proverbial slap on the wrist, or all the sympathy is for them, not us. We are laughed and jeered at, isolated and rejected, yelled at and criticised, bullied and told in a million small and large ways that we are worthless or inferior in one way or another. We are, even now, after years of autistic activism, routinely not consulted, even as adults, on what we want, and often not included in running autism organisations that supposedly are 'for' us. In short, we are treated as if we're not quite human, not entitled to even the most basic of human rights, fit only to be 'treated' and 'managed' by the 'real' humans, and ultimately to be eliminated.

So why wouldn't we experience 'soul loss'? How, really, could we avoid it? Over and over again, I hear/see autistics talking of their pain, their confusion, their floundering through the world, their feeling of 'lack' or 'wrongness', their struggle to achieve some sense of self-esteem or even self-coherence. They daily dump on themselves, wonder if they'll ever 'get it right', hate themselves for not being able to do what 'everyone else' can do with such ease, for having to struggle so hard with just about everything in life. Sometimes they believe the negative stereotypes for lack of any better information, but just as frequently it seems the state of their lives, their lack of a coherent sense of self or even a sense of purpose, is to blame. For many of us, private tears and shame are an almost daily experience. I have seen so many autistic individuals broken by their experience of life, wondering why they should even bother to continue, or trying to 'fill those gaps' in one way or another.

The only way I've seen this even begin to be overcome is by these individuals meeting and talking (even just online) with other autistics with a more positive view of themselves and of being autistic. Not everyone needs to be some hot-shot autism activist or advocate, but we can all extend a hand of sympathy, and frequently do. I have seen autistics come into groups flagellating themselves, and within a relatively short while, having experienced the help and support and understanding of others, they move towards a more positive outlook, or at least stop whipping themselves so damn hard. Even those who've been part of that support and community for ages can be in need of reinforcement when life assaults them particularly badly, as it does to all of us now and again. Community is not the whole answer of course, but it's a very important beginning. I firmly believe that it's only by way of our autistic communities that we can reclaim those bits of our true selves shattered by 'soul loss', and begin to heal.

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1 Pgs 78-79, The Vein of Gold, by Julia Cameron, Pan Books, London UK, 1997.

Things I Don't Understand - Number Six

I don't understand prejudice. I really don't get why someone thinks they are better than another, because of their race, religion, sect, gender, sexuality, nationality, tribe, language, culture, sub-culture, educational qualifications, social class, neurology, degree of able-bodiedness, or whatever. So nor, consequently, can I understand or support all the 'isms' that arise out of such prejudice, when one group gets power over another.

Sure, people vary in their size, their physical strength, intelligence, education, wealth, etc. Another person's culture, language or appearance can be very different, and seem strange. They may do things you don't approve of. They may even have 'isms' of their own within that culture you'd like to see eliminated, such as women being oppressed. But to say that because of that, the members of that group/culture/etc are somehow 'inferior', and deserve a lesser status than you and/or the group/culture/etc that you belong to, is nonsensical.

I've somehow known all my life, long before I was able to put it into words (and I'm not sure I can totally do so even now), that every human being is essentially equal. Not exactly the same - we differ of course, as I said above. But beneath all that, is something, a spark, a common thread, a 'human-ness', whatever it is that forms the nucleus of our being. I tend to call it the human spirit or soul, but others will call it by other names. And we all have it, without exception. Even the ones thought 'unreachable', or 'too damaged', the ones who seem a threat, or 'too different to understand'. I've looked into the eyes of many considered 'other' or 'undesirables', and it's there. (I've also looked into the eyes of the dead, and seen that essential spark gone, but that's another matter.)

Perhaps it's the aspie in me - from just a young child, I paid little attention to such 'unimportant' things like peoples' status or position. There were undoubtedly tons of little signals which I missed, and which helped others to locate themselves in the social matrix, to know who they had to kowtow to, and who they could lord it over. Children, especially girl children from families of no great social status like myself, were pretty near the bottom of that matrix. I was oblivious to all that. I protested the privileges my brothers and father got. I couldn't for the life of me understand why everyone thought boys were so wonderful. I didn't think it remarkable that some of my cousins and schoolfriends were Maori, or think they were somehow 'lesser' human beings for it. And while I understood that adults had power over children, and knowledge and experience I lacked, I didn't see them as intrinsically superior to me because of it. And so on. I have met many other aspies/auties who share the same lack of awareness of social distinctions, the same lack of prejudice.

Or perhaps it's because I'm of the post-war generation. Growing up, the Holocaust and its horrors were very recent history to me, a glaring example of racism gone mad, and of how thinking oneself 'superhuman' actually made people behave in subhuman ways. I'm also old enough - just - to remember President Kennedy, how wonderful everyone thought he was, the hope for a new world he engendered, and the shock of his assassination, which reached us even here in little ole 'Godzone' at the bottom of the world. The 'revolutionary' events and phenomena of the 60s - the Vietnam War and anti-war protests, the civil rights movement and Martin Luther King's assassination, and even the music of pop groups like the Beatles, were the background to my childhood, while events like Watergate and movements like feminism and gay rights and the 'flower power' of the hippies influenced my adolescence. When I was about fifteen or sixteen, I wanted nothing more than to grow up to be a hippie, and when my father sneered at my 'tatty' jeans, I didn't get why. The prevailing idea was that our generation was breaking down old structures, and creating a 'brave new world'. Prejudice was anathema, to be discarded along with other 'old fogey' ideas and social structures.

Or perhaps it's both of these factors acting together - or neither, but simply something that's part of me, of who I am. There are plenty in my age group, and younger, who didn't get the memo about the revolution, and who are as racist, sexist, homophobic, etc, as any of the older generation were. And I know that there are aspies/auties out there who are prejudiced, and who spout that prejudice at any opportunity. I've met some online (thankfully only a few, in a forum I no longer visit) who rant about Obama and immigrants and blacks, or see being gay as a 'sin', etc, etc. They do exist.

So I don't know why it is, exactly, I lack any ability to feel prejudice. All I do know is, I don't understand it, I don't understand anyone thinking themselves a superior type of human being, and I will never, ever, ever support it or knowingly perpetuate it. Ever.

The Suffering of Autism Parents

I hear so much in the mainstream media about the 'suffering' of autism parents (though far too little about the feelings of their children), how difficult' it is to have an autistic child, the trials they go through to 'help' their children, etc, etc. The general feeling of such parents seems to be guilt, for somehow either causing their child's autism (by, eg, exposure to certain things before birth), or not preventing its continuance (because they didn't do this or that therapy, or didn't do it early enough, or enough of it, or the 'right' one, or whatever). They thrash themselves with this guilt, devote long hours to their children's therapy, and/or bankrupt themselves trying to afford all the latest 'treatments'. Or if their attitude is not one of guilt, it's of negativity, of 'fighting' and 'hating' Big Bad Autism. Either way, their lives seem pretty stressful.

Now, I sympathise more than you'd think with such parents - their lives look incredibly hard, and they always seem worn out. And certainly dealing with some autistic behaviours such as meltdowns can be difficult. But I'm also left with the feeling that so much of their suffering is completely unnecessary, based as it is on the idea that their child has to become 'normal', before this weight will slide off their backs. The assumption is that such 'normalisation' is the only goal worth pursuing, when it comes to autistic children. (The assumption also seems to be that their child is 'suffering' just from being autistic, and so to relieve that suffering, the child has to become, or at least seem to be, 'normal'. But I'll deal with that issue in a separate post.) But what I want to argue here is that if such parents are willing to take a different approach to autism, their lives, and those of their children, would be eased considerably.

So here is my advice to them.

First of all, understand that autism is increasingly being proved to be genetic in origin - i.e. nothing you did caused it. It's also now understood as being neurologically based, we have quantifiable and substantial differences in the way our brains work, differences that are fixed, permanent, and intrinsic to our very nature. Our autism can't be separated from us (can you separate your neurotypicalness from yourself?), hence you can't destroy autism without destroying the autistic individual. So don't blame yourself for not being able to 'get rid' of it. Instead, find and read Jim Sinclair's "Don't Mourn For Us". Written in the 1990's, it's just as relevant today, and just as potent, as to what it means to the autistic child when you say you wish they didn't have autism.

Secondly, armed with this knowledge of autism's fixedness, think what it means to your autistic child to constantly receive the message that something so intrinsic to their very nature is 'bad'. Understand that suppressing autistic behaviour and mannerisms is NOT the same thing as 'getting rid' of the autism. All it means is that we've managed to hide this 'badness'. I leave you to imagine what that does to your child's self-image, in the long run. I have seen countless autistic adults who suffer with low self-esteem, depression and other mental illness, even alcohol or drug addictions or suicidal urges. I've also met or heard of many younger autistics, now coming into their late teens or early twenties, who believe that because of the 'curse' of their autism, they're not able to have anything like a normal life, so they sit back and refuse to even try. Is this really the kind of life you want for your kids?

Thirdly, understand that your child is not 'lost', but simply different. They will have different needs, behave in different ways, communicate in different styles, and so on. Remember too that all behaviour is communication. Yes, even those meltdowns. If you can let go of the idea that your child 'must' be normal, or at least aiming for normal, and stop worrying about the approval of others (who usually don't know or understand your kid or family anyway), you can then see, and embrace, where your child is actually at. And embrace their real needs - not for 'normality', but for understanding and practical support.

Fourthly, entertain the idea that there may be nothing wrong with the autistic mindset in itself. That many of the difficulties that beset us are caused by other people's attitudes to us (eg judging us as 'rude', when we are actually just honest), lack of specific supports (eg visual aids, communication aids), or the world simply not being congenial to us (eg things that cause sensory overload). In other words, change their world, rather than waste energy trying to futilely change your child. Understand also that your child is not giving you a hard time, they are having a hard time. If the pressure to be 'normal' was removed, their load would be lightened along with yours.

Fifth, read everything you can lay your hands on written by adult autistics, and I don't mean just Temple Grandin either (though that's a good place to start). Accept that we are what your child will someday become, their future peers and role models, and that we have a viewpoint worth listening to, not to mention help in understanding your child, why they might be behaving or reacting in certain ways. But understand too that we are human beings, and don't want to be treated solely as a resource.

Sixth, do your best to find parents who have accepted, even embraced, their child's autism. You will find (as I have) that their lives are much less stressed than the 'normalising' parents. These parents still have problems, and issues to deal with, but they seem to me to be far more relaxed (and also not so financially stressed). They focus on particular issues - eg toilet training, dietary problems, communication difficulties - and deal with them one at a time, rather than trying to 'eradicate' the autism wholesale. This approach is one I call maximisation, i.e. they try to help their child become the best autistic they can be, rather than forcing normality on them. Consider becoming one of them. And watch the stress drop away.

Last but not least, understand that if you've been caught up in the whole 'hating/fighting autism' thing, you have to some extent been 'brainwashed'. Not intentionally, but the weight of all the negative media images of autism, the attitudes of other autism parents caught up in the 'fighting', the promotions of autism organisations often run by such parents, their vehement criticism of adult autistics who speak out, not to mention the entire autism industry telling you how 'sick' your child is and claiming they have the 'cure', etc, etc, well, it can all be overwhelming, filling your thinking to the point where you've possibly lost sight of your real needs, and those of your child. Try letting go of all that angst and hatred and 'fighting'. You might even begin to enjoy life again - and you can get to enjoy your children too, instead of constantly 'working on' them.

I know that it won't seem easy, especially if you've been really caught up in the frantic struggle to destroy Big Bad Autism. And I do understand that most parents who are, are simply trying to do what they think is best for their child. All I am saying, is that there is an easier way, one that will de-escalate your stress, relieve your bank account - and your child. And change your life.

ONE DAY...

ONE DAY.... One day, the very idea of 'un-selecting' any egg, embryo or foetus solely because of its actual or perceived 'risk' of the consequent child being autistic, will be as anathema as the idea of such selection on the grounds of race, gender or sexuality would be.

ONE DAY... Parents will never again grieve because their child is autistic, but rather accept it as simply another variation on human, albeit one that needs more support and understanding than most.

ONE DAY... no autistic will grow up hearing or thinking they are worthless or 'deficient' or 'terrible', or feeling they are a 'burden' on their parents, because of their autism.

ONE DAY... Parents of autistic children (and everyone else) will understand that their child is not 'lost' or 'stolen', or 'in their own little world', but right here in this one, just focussed on different things, and having different priorities.

ONE DAY... Those parents will never be frantic, overstressed and continually anxious or burdened with guilt because they didn't do this or that, or enough of this or that, or at the 'right' time, to 'treat' the autism. They will enjoy their autistic kids.

ONE DAY... It will be accepted as a given that every autistic child is intelligent and aware of their surroundings, whether or not they can speak, unless there is strong evidence otherwise (that's not an IQ test, which many autistic children don't perform well at).

ONE DAY... There will be an end to 'normalizing' autistics into some kind of pseudo-NT state. We will be allowed to be who we are, with a focus on enhancing our lives as autistic people, not squeezing us into a narrow concept of 'normal'.

ONE DAY... One day, there will be an end to harmful and hugely time- and energy-wasting autism 'therapies'. The 'autism industry' which now leeches vast sums of money from overwhelmed and desperate autism parents will go stony broke.

ONE DAY... It will be considered a normal educational practise to work with autistic children's special interests, focussing and building on their strengths, rather than viewing these interests negatively, and/or denying the child time with them so they can 'concentrate on therapy'.

ONE DAY... Stims and other autistic mannerisms will be simply accepted as normal variations on human behaviour.

ONE DAY... Social skills classes will teach autistic kids and adolescents what they really need to know, eg how to recognise, avoid and report bullies and abusers.

ONE DAY... It will be normal practise for every autistic person to have their own mentor or mentors, from school age till well into adulthood, with the right to such mentoring at any further time, if the autistic adult feels in need of it.

ONE DAY... Accommodations such as closed offices or workstations, the wearing of caps and/or sunglasses inside, etc, will be regarded as 'normal practise' where autistics, both children and adults, are concerned.

ONE DAY... Autistics of any age will no longer be murdered simply for being autistic. Or beaten up. Or locked up in mental hospitals, or fired, or jailed because we didn't look some cop or judge in the eye, or any of the other things that currently happen all too often.

ONE DAY... There will be public awareness campaigns based on how we really are... And this autism awareness will be taught as a matter of course, in all schools and workplaces.

ONE DAY... The current treatment of autistics will be looked back on the way we now regard slavery, apartheid, the Holocaust, or the treatment of gays and women before gay liberation and feminism.

ONE DAY... These and many other changes in attitudes to autism will happen.

...One day.

I hope I live to see it.

Autistic Pain

I've written before of autistic shame, but it seems to me there is a deeper emotion running beneath or parallel to that shame, and that's our autistic pain. As individuals and as a group, we are hurting, and hurting badly. Just about every aspie/autie I know has expressed this pain sooner or later, in one way or another, including the younger generation as they grow old enough to express it.

To know the source of this pain, we only have to look at our lives. We struggle daily. We endure frequent sensory assaults, and then feel shame and embarrassment for our meltdowns or shutdowns. We bang up against our social awkwardness and communication difficulties, suffering social isolation, loneliness, depression, low self-esteem and/or anxiety. We run headlong into the knowledge that the world's values are not ours, and that its rules make no sense to us, but we're expected to follow them anyway - and then we get cold-shouldered or criticised or jeered at if we try to be our true selves. We struggle with our relationships, which all too often fail or turn toxic or just never start. We wrestle with our executive dysfunction issues and our inability to 'handle life', feeling like worthless failures, and then are refused the help and support we so desperately need, or get given the wrong sort of 'help' that isn't helpful at all, and sometimes actually makes our lives worse. We get abused or bullied or made scapegoats for others' tensions. And then we're told it's 'our own fault', or 'for our own good', or that we're 'making a fuss about nothing', or 'not trying hard enough', or 'don't have the right to complain', or get asked 'why can't we just be normal?'.

We must exist in a world that doesn't understand us, that often refuses to even try, or to make even the smallest accommodation for us. A world that barrages us with negative messages about autism, making us out to be mentally ill or intellectually deficient; a scourge or disease or epidemic; a 'thief' of the 'real' individual supposedly 'buried' underneath our autism; or anti-social 'weirdos', geeks and loners, possibly even criminals and mass murderers.

Why wouldn't we be in pain? But the biggest and deepest pain, is, I believe, the one that is the sum of all the individual hurts, and yet more. It's the one that comes from our agonizing 'ill-fit' with the world. We are square pegs in this round-holed world, and we so know it. It's a constant abrasion at the nerves, sapping our strength, our hope, our faith in ourselves, our self-esteem, sometimes even our will to live. For me, this pain has always been intrinsic to my very existence, long before I had a name for it, or understood its roots. Some days, some times, it's closer to the surface, only taking a sad song, a soppy movie, or even just a stubbed toe, to make it spill over. Other times, it runs more deeply, like an ache in the bones, or a weariness of the soul. But it's always there.

There are of course no quick fixes for our pain. I'm not even sure in some cases the source of the pain can be eliminated. (How, for instance, would we rid the world of all sources of sensory overload? And should we, when some of those same sources – eg music - can also result in some of our most beautiful sensory 'treats'?) But other sources of pain, however, such as the distorted and mistaken attitudes and actions of others, can and must be eliminated. The pain and the damage being done is so immense.

One thing I do want to stress is that our pain is legitimate – despite what we are all too often told, we are entitled to our pain, entitled to express it, to share it with others on the spectrum who will understand and sympathise - and also entitled to do whatever we have to do to minimise it, stop it, or escape it – up to and including the right to change the world to accommodate us better.

If you recognise this pain in yourself, know that you are not alone. Know that only other aspies/auties will understand it. And that only as a group can we relieve it. We're in this together, my friends. And only together can we stop it.

A Review of 'The Spark'

Lately I've been reading 'The Spark', by Kristine Barnett, about her autistic son Jake and his genius. Some of you may have heard of them (the link to news stories about her and Jake have been doing the Facebook rounds), and even read the book. It tells of how, when her son was three and his special ed teacher told to stop sending her son to school with alphabet cards, because he'd 'never need the alphabet', she refused to accept that he had such a limited future, and set out to prove it. In time, young Jake proved to be something of a mathematical/scientific genius, with an IQ so high it's almost unmeasurable. It's a stirring story, and one that I loved reading... and yet. And yet. Sigh. I have mixed feelings about this book. She did so many things right, and one Big Thing wrong.

The things she did right were -

- Closely observing her son with a realistic eye – and thus coming to recognize that the traditional 'therapies' for autistic children were not helping her son at all.

- Realizing also that during his 'free time', his whole manner was different – purposeful, deeply engaged with the world around him, and in fact “like someone who was lost in very important, serious work.” (pg 41)

- Refusing to accept that her child (or any other child for that matter) should be 'written off' as 'beyond hope' at the tender age of three.

- Believing in her son's intelligence, and that he was capable of far more than the 'autism experts' and his special ed teachers were telling her he could do.

- Trusting her own intuition that she needed to take her son out of the special ed pre-school he was attending, despite the opposition of just about everyone around her, including her own husband.

- Asking herself, “Why is it all about what these kids can't do? Why isn't anyone looking more closely at what they can do?” ( pg 56)- Engaging the child where he was at, by harnessing her child's 'special interests' to help him learn, encouraging rather than suppressing them – even if they seemed incomprehensible, frightening or 'weird' to her and others.

- Understanding intrinsically that other skills will emerge or improve if a child is encouraged to do what they love, and that you can connect best with them through this.

- Insisting that Jake be allowed to have 'time out' and a 'regular' childhood – i.e., to not spend his every waking moment being 'therapised'; a right all too many autistic children are still denied.

- Recognising that “people with autism are in our world. They're just not thinking about the things we want them to think about.” (pg 77, my emphasis added)

- Taking the methods that worked so well to encourage and support her son, and extending them to help other autistic children as well, including some profoundly autistic children that were thought 'unreachable' and 'unteachable'.

And the one Big Thing she does wrong?

She demonises autism.

Yes, even though she is a lot more accepting of autistic 'quirks' than many autism parents, she still says flat out “Autism is a thief. It takes your child away.” (top of page 30, if you're interested). She refers several times to feeling she was 'losing' her son to autism (actually, he seems to me to have been mostly retreating inside his head out of boredom, or perhaps sensory or social overload), she refers to his autism in terms of 'impediments', etc, etc. In other words, she still has a lot of the 'Big Bad Autism' mindset. This even though it's obvious to anyone who knows autistic people that a large part of what makes young Jake special is his autistic traits. Autism isn't responsible for his phenomenally high IQ, but it is almost certainly responsible, for instance, for his ability to focus intently on his particular interests, going deeper and deeper into them, for long periods of time, not to mention his ability to perceive patterns far better than most people can. In other words, he's not a genius because he's autistic, but he uses his genius in an autistic fashion.

To give Ms Barnett her due, she also states that she eventually came to understand (pg 95) that “curing autism would be the same as 'curing' science and art”, and that her “beloved boy hadn't been missing after all. He'd just been working”, and “how fortunate it was that [they] hadn't taken away everything he'd been using for self-stimulation in those early days.” (pgs 93-94). Nonetheless, she still refers several times to people 'losing' their children to autism, and autism itself as a 'locked-in' state. There are mixed messages all the way through this book.

It's a shame that she comes so far, understands so much, does so much that is absolutely fantastic, is so revolutionary in her approach... and yet fails to take that one little step further, that would take her over the 'hump' of attitude change, and into seeing that much of what makes her son so special is his autistic traits, that autism is not a 'tragedy' or a 'thief' or a 'monster', or in any way 'bad', it simply is. Another way of relating to the world. Another way of being. Another way of being human.

This is still however an important book, and I can sum up its essential message in no better words than Ms Barnett's herself, in the postscript, where she says... “This is how far we've come, from the special ed teachers who didn't believe Jacob could ever learn to read, to [his] university physics professor who sees his unlimited potential. That's the kind of ceiling I want my son's teachers to be setting for him. More important, it's the ceiling I want teachers and parents to set for every child, and for all of us to set for ourselves... I'm not suggesting every autistic child is a prodigy, or every typical child for that matter. But if you fuel a child's innate spark, it will always point the way to far greater heights than you could ever have imagined.”

Quite.

I'm Impatient.

I’m impatient. I’m getting more and more fed up with the whole mess of autism attitudes ‘out there’, the entire public image of autism; the misconceptions, the distortions, the downright fallacies, the blind, unquestioned assumptions. There’s a part of me that wishes I could just sweep it all away, clear the decks, like someone swiping a table clear with a backhand - I’m that frustrated, because I am seeing more and more of the damage it’s doing. So many things are connected to this bad image of autism. Let me give just a sampling of that.

- The autism parents who see autism as a ‘tragedy’, and spend mega-bucks on all sorts of useless or downright dangerous treatments to their kids, many of which, if done to any other kid, would be deemed ‘abuse’. But hey, it’s okay to do this to autistic kids, because they’re not ‘properly human’, and it’s ‘for their own good’, to make them ‘normal’, which is a good thing, right?

- These same autism parents claiming that by giving those ‘treatments,’ they are ‘rescuing’ their children – the assumption being that just to be autistic means you are suffering – because autism is so terrible, a disease, a tragedy, a ‘thief’ of the ‘real’ child supposedly buried underneath, a home-wrecker, a burden, blah blah blah.

- Again, some of these same autism parents, who go on camera saying that they’d ‘get rid’ of the autism if they could, that they wish they had a ‘normal’ kid. Right in front of those kids. And all their ilk who don’t go on TV, but spend years telling their autistic kids anyway, in one way or another, that to be autistic is a Bad Thing.

- The ‘autism industry’, who cons those parents into spending those mega-bucks on those treatments, and by golly if that one doesn’t work, or that one or that one, oh look, here’s something even more weird and even more expensive, and if you don’t do it, you’re a bad parent, maybe even guilty of ‘abuse’. (Yes, really.)

- The young adult autistics (and some not-so-young ones) who think having autism means being ‘doomed’. Of course they hate their autism – who wouldn’t hate something that seems to have ‘ruined’ their lives? Some of these are of course (surprise, surprise) the now-adult children of the above parents.

- Yet other autism parents, who think that their autistic child should be allowed to do whatever they want, whenever they want, regardless of whether it impinges on other people or not, because “they don’t understand”, so there’s no point in setting limits on their behaviour, or disciplining them in any way.

- The special autism ‘schools’ or camps that spend more time repressing the kid’s autistic traits, punishing their stims, etc, often forcibly and harshly, than they do actually educating the kids or even getting to know them properly.

- The struggles autistics have in regular schools, and the teachers who seem afraid of them, the other kids who bully them or reject them, the lack of support, and then how they get tossed out because they’re ‘aggressive’ or ‘don’t follow the rules’.

- The adult autistics who also think that being autistic automatically means being miserable, like the one who, when tossed out of a Facebook group, told the moderator that if she wasn’t suffering and unhappy, then she “couldn’t really be” autistic!

- The high unemployment rate of those with autism, not just because we flub interviews, but because we get fired or leave because of the hostility and/or manipulations of co-workers and bosses.

- The hesitation and caginess many autistics who are employed have about ‘coming out’ as such, for fear of losing their jobs, or incurring hostility, misunderstandings, rejection or arms-length ‘sympathy’ from their co-workers/bosses.

- The hostility directed at many autistics from their own family members, who think we’re either ‘faking it’, or ‘could pull ourselves together if we tried’, or misconstrue our actions and words, or just use us as scapegoats for family tensions.

- The professionals who think they ‘know what autism is like’, so of course we “can’t be” autistic if we can talk well, have a partner and/or kids, hold down a job, etc.

- The family members and general public who also assume they ‘know what autism is like’, and so if someone says they’re autistic but they don’t seem to fit that mold, that person, they decide, must be ‘faking it’, ‘jumping on the latest bandwagon’, etc, etc.

 - The way the media beat up any story that involves any autistic or any person who even might be autistic committing a crime, as though to have autism/Aspergers means being intrinsically violent or criminal.

- The same media, who regularly trumpet yet another and even more bizarre ‘cause’ of autism, everything from motorways to older mothers to the Internet, as I recounted in a previous post.

- The researchers who, when they find a ‘difference’ between us and NTs, always assume that this represents a ‘lack’ or ‘deficiency’ or ‘pathology’ on our part. In their minds, NT= always good, and autistic = always bad.

I could go on, but you get the picture. It’s all connected. All, all, stemming from the concept of Big Bad Autism. Intrinsic to this is a whole bunch of totally incorrect and distorted ideas of what it means to have autism, what motivates our behaviour, etc, etc. To give just one example of this – our lack of eye contact. Experts decided that this is because we’re “not interested in other people”. BZZZZ. WRONG. We don’t make eye contact because we find it a) painful, b) invasive, c) irrelevant (because we don’t get the ‘messages’ we’re ‘supposed’ to get from it), and/or d) many of us find it difficult to look at and listen to people at the same time. So how, you might ask, did the ‘experts’ get it so wrong? Because. They. Never. ASKED. Us. They made an assumption, and the assumption became ‘Truth’, and that ‘Truth’ is still being faithfully repeated and perpetuated. This is but one example of why we demand nothing about us, without us.

It’s like the gay thing, in some ways. Once upon a time, gays and lesbians were also assumed to be ‘unhappy’, ‘twisted’, ‘scourge on society’, blah, blah, blah, too. We ‘had’ to be, because being gay was an ‘aberration’, right? A twisting of the ‘normal’ pattern, right? So ‘of course’ we were unhappy, etc, because we weren’t heterosexual, right? A similar story could be written for old attitudes to many other minority groups. Well the world has largely changed its ideas on them, due to various social movements, and by goddamn it’s going to have to change its ideas on autism too.

Because I’m sick of the whole thing. I want to throw it off, the way you throw off stifling covers on a hot night. The way we throw out clothes that don’t fit us. The way we rip up an old script that isn’t of any use to us anymore. Like that. Yeah, like that.

I know I can’t. But I want to. I’m so sick of what is. I want each and every autistic person to be seen as an individual, as a human being first and foremost, with the same needs – for respect, education, etc, as any other human being, albeit we have to do these things or get these things in our own way. Yes, there are broad similarities, many traits we have in common, but we are first and foremost human beings, not a ‘label’ or a ‘category’ or a ‘specimen’, though an autistic identity (as an aspie, HFA, whatever) must be taken into account as an essential part of that human being. I want people to see beyond the diagnosis and the labels to see what our real capabilities are – like the case of the autistic kid whose parents were told not to worry about teaching him to read and write, to focus instead on things like tying his shoes – and now he’s proved to be a young genius. I am certainly not claiming we’re all geniuses, and nor should we have to be, to be accepted, my point is that trying to pigeonhole us is actually doing both us and the world a disservice.

Because enough is enough is enough. It’s got to stop. Things have to change. The public image of autism is beyond overdue for a complete overhaul. So I’m impatient, I’m very, very impatient. And I like to think that I’m not the only one.