Tuesday, 22 July 2014

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.

Sunday, 13 July 2014

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.

Monday, 17 March 2014

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.

Friday, 14 March 2014

Some Advice for Younger Autistic Adults

In a post last year, I talked about how the number of younger autistics who are basically ‘sitting around doing nothing’ appalled me (and not only me). More recently, I listened as an aspie friend of mine and a young autistic woman talked. My friend was asking the young woman what she was doing with her life, and she kept saying “Well, I can’t do this, I can’t do that”. After she left the room, my friend commented “I’ve heard a lot about what ____ can’t do, but I’d like to hear her say what she can do”.

Such attitudes are, I believe, the result of young autistics growing up receiving negative messages about autism (communicated openly or not) from those around them. Some have had years of ‘special’ education and ‘treatments’ and being told or having it assumed what they “can’t” do, rather than being encouraged to explore what they can do. Others are newer diagnosed, but still accept the ‘doom and gloom’ image of autism. They’ve all come to believe that being autistic is an affliction that will ‘ruin’ or at least constrict their lives. In consequence, it’s like they give up on life before they’ve even started.

We older autistics have a certain advantage here – going through life without the benefit (or drawback) of a diagnosis, we were simply expected to get on with things, and so we did. We got educations or training, worked in various jobs and careers, travelled and saw the world, had relationships, had kids and raised them, joined churches, community organisations, social and political movements, did volunteer work and a whole heap of other things - in short we just got on with our lives, and participated in the world, to the best of our abilities – and frequently beyond them.

And yes, it did come at a enormous cost – massive confusion, anxiety and stress, frequent meltdowns or shutdowns, depression, self-hatred and low self-esteem, often leading to physical illnesses or even suicide attempts, not to mention suffering the frequent anger, rejection, ridicule, derision, bullying, abuse, exploitation, etc of others, without having the slightest idea why we were being so harshly treated, or what was ‘wrong’ with us.

BUT. (And it’s a big BUT.) But we also achieved much, learnt much, accumulated a great deal of experience - and came to understand ourselves a lot better, and to know exactly what our real capabilities are. We know that we can do much more than autistics are ‘supposed’ to be able to – because we’ve done it! (And when people try to claim that “proves” we “can’t be” autistic after all, we can only roll our eyes.)

Yes, I know it’s easier said than done – and that at least some young autistics don’t do anything much because they simply don’t know how, or where to begin. Ignorance of the world and how it works is a huge problem for young autistics. I remember it was for me. So here’s a possible plan of action for them.

1) Accept your autism. Embrace it. You might as well, because you can’t get rid of it. [Don’t hope for a ‘cure’. Those working on ‘curing’ us are either a) working on methods to suppress all outward signs of our ‘deficiency’ – meaning they want to force us to hide who we are – or b) working on ways to eliminate us before we’re even born.] Find your true peers, ie other autistics, and you will begin to see in them the beauty that is also within you. We have problems, yes, but we also have great strengths. Develop them, use them, grow into the fullness of your true autistic self.

2) Know yourself. Know your personality, how your autism manifests, what you are as well as being autistic. Many young autistics (including me when I was young) don’t really have a great deal of self-awareness, and hence can’t decide what to do with their lives. Whether online or in books, do personality tests, IQ tests, aptitude tests, ‘the right job for you’ tests, etc, etc. Scour the library and the internet, read anything that might enhance your self-knowledge. Yes, most of what you read will be NT-orientated, but that doesn’t mean there’s nothing helpful in it. Take what is relevant to you, and discard the rest. The point is to increase your self-awareness, not to dump on yourself for not being ‘normal’.

3) Work on your obstacles. Don’t let ‘autistic things’, eg a tendency to meltdowns, stop you. This is where other autistics can really help – we have a pool of knowledge that can help you figure out your triggers, recognise your warning signals, cope better, ask for accommodations or changes, etc, etc. And if one thing doesn’t work, do try another, and another, and another. Don’t just give up, and let these problems stand in the way of a fuller life. There’s a way round everything.

4) Formulate goals. Once you know yourself a bit better (and this is usually an ongoing thing), you can begin to figure out what you want to do. List what you know you can do well, or like to do – even if it’s only looking after your pet, making cakes, and playing computer games. Fancy being a baker? A vet? A computer games designer? Don’t let your imagination be limited by what you think you ‘can’t’ do, or have been told you’ll ‘never’ be able to do. Figure out ways to do it anyway – eg, if the idea of studying long years to become a vet is too daunting, what about being a vet nurse instead? A cattery or kennel assistant? Or working in a pet shop, or even as a volunteer at an animal shelter or SPCA? It could be the first step to a rewarding, fulfilling career. Go for it.

5) Find mentors. If there’s one thing I wish I’d had more of when younger, and that I wish for younger autistics, it’s people willing to guide and inform us. We are so woefully ignorant of so much, we need to be told, explicitly, of a whole bunch of stuff, and guided through it till we learn how to do it for ourselves. You will probably need more than one mentor, and to keep periodically finding new ones, as your life changes – someone for educational or career stuff, someone else you can ask ‘how do I do this’ type questions of, maybe someone else still for dating or relationship advice. Look for these mentors amongst your family and friends, your teachers, support people and school careers advisors, but also at disability resource centers, campus disability support services, social services, NGOs, religious institutions… whatever is available in your community.

6) Stretch yourself. Now and again, give your boundaries a little push. Take risks. Maybe the ‘pushing’ has to be well-prepared for, and the risks small, brief and ‘managed’ ones. But you will learn from them, and expand your capabilities. Keep doing this throughout your life – and you will surprise yourself with what you find you’re able to achieve. It will do wonders for your self-esteem, believe me.

7) Above all – be proactive. Take charge of your life – because ultimately no-one else will do it for you. (Even if they’ve done it up till now, they won’t when you’re an adult. Or they shouldn’t, not if you can learn to do it for yourself.) Yes, you will make mistakes, but don’t be too hard on yourself for them, or try to avoid them altogether. Making mistakes is human.

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Don’t get me wrong – I’m not saying that it will be easy, or that changes are going to happen overnight. But it’s still worth the effort. And in case you’re still not convinced, let me list what is likely to happen to you if you continue to just sit around and complain about what you ‘can’t’ do.

a) Poverty. If you think being poor sucks at twenty, imagine still being poor at forty. Or fifty, or sixty, when your health, hearing or eyesight is deteriorating and you still can’t afford decent housing or furniture or food, and the prospect of any job has become a mirage.

b) Homelessness. This is a real risk for the poor at any age – and it’s a prospect even less attractive when you’ve got arthritis, a dodgy heart and tired, aching bones. Fancy being a bag lady, or living under a bridge?

c) Institutionalisation. Who do you think will look after you once your parents/caregivers are gone? Siblings and other relatives are often not keen on taking on that burden, financially or otherwise. If you haven’t acquired at least some measure of independence, as an alternative to being homeless, you could end up somewhere really, really horrible. Think the worst kind of old folks’ homes. Think the Judge Rotenberg Centre. Look it up – and be afraid. Be very afraid.

d) Compassion Fatigue. Put bluntly, when you are no longer young, and your life hasn’t changed any despite the best efforts of others, people get tired of trying to help. You could find yourself without any kind of support system at all. You could even end up one of those old people who die alone and friendless, in their tiny flats or apartments, and aren’t found till they’ve been dead for weeks.

e) Boredom and frustration. Doing nothing actually sucks. It’s really, really boring, especially if you do it for years on end. Even if you have a whole heap of special interests, your life may still feel constricted. You might even get so frustrated with it, you do something completely crazy that turns your life upside down, just to break the monotony. The trouble is with these sudden changes is that we’re usually totally unprepared for them, and hence they tend to rebound on us, making our lives much worse.

f) A sense of unrealised potential/life passing you by. It will also suck when you’re old and look back at your life and realise how many things you could have done and didn’t. You’ll feel like life and the years have vanished, while you did nothing, achieved nothing, were nothing. It’s a horrible, horrible feeling. Avoid it. Get off your butt and get out there, in one way or another.

I want to emphasise here than I’m not saying these things to lecture you, but because all of you are precious to me. Yes, there will still be difficulties and trials – they are part of everyone’s life – and of course some of us older auties have experienced the above too. You may endure some of them anyway, even when you’ve put in your best efforts. But it’s pretty much guaranteed that you will (especially e and f), if you don’t take charge of and do the utmost you can with your life. Even if you’re ‘lower-functioning’, and full independence may always be beyond you, nevertheless, you still need to take control of as many areas of your life as possible. Because the alternatives suck, big time. And you deserve better.

Thursday, 6 March 2014

About That Aspie 'Superiority'

For a while now, I’ve been seeing some aspies talk about how we’re somehow ‘better’ than those not on the spectrum, more advanced, the next step in evolution, inherently superior in some way – intelligence, honesty, integrity, focus, empathy, whatever. I would like to make my position clear on this subject.

I don’t believe we are superior to those not on the spectrum. It’s tempting to think this, comforting even, when we are so often criticised or labelled ‘inferior’ in some way. And NTs have so many baffling behaviours - small talk, lack of directness, ‘woolly’ or illogical thinking, etc, etc, plus many of us have experienced the worst kind of NTs – the users and abusers, the bullies and the bitches, the back-stabbers and the exploiters. But there are many lovely NTs out there too, caring, kind, helpful, intelligent even, willing to listen and learn, to support us on our journeys, and to at least try to understand us – not to mention NTs have one big advantage, ie the ability to navigate social networks we can only dimly perceive, let alone weave ourselves into. And not all autistics are ‘wonderful’, or all ‘indigo children’, or beautifully empathic, etc, either. I’ve met or heard of autistics who even other autistics can’t tolerate, who are sex addicts or other unsavoury things, who really do lack any compassion or empathy for others, even those who are violent schizophrenics, psychopaths, narcissistic or borderline personality disordered. Even ‘ordinary’ aspies/auties can have their negative sides, or their bad days. We are definitely not inferior to NTs, we have our strengths, but we are not all sweetness and light either – and I don’t believe we do ourselves any favours, if we try to picture ourselves as this.

I also don’t believe we are the ‘next step in evolution’. I think this belief is based on the apparent (and I stress apparent) rise in our numbers, as well as, perhaps, a hope that there is some purpose to our existence, and our trials in life. But that doesn’t explain why at least some of those trials are NOT the result of others’ treatment of us, or their lack of understanding – for instance, our sensory difficulties, our executive dysfunction, our often severe dyspraxia, our difficulties with communication, our erratic and often uncontrollable (even by us) emotional states, our frequent lack of a sense of danger, especially as children… Evolutionary advances are all about enhancing the ability of the individual and hence the species to survive, and hopefully to flourish. None of the above traits seem to do that, as far as I can see. In fact the last of them can actually be counter-productive to survival – think of the many autistic children who drown every year, through a combination of that lack of awareness of danger, coupled with an attraction to water and ‘escape artist’ tendencies.

Also, my own experience, as well as the anecdotal evidence and others’ analyses of various historical figures, suggest that we have always been around, we just weren’t called autistic. We were at least some of the ‘lunatics’ locked up in asylums, the ‘simpletons’ kept in back rooms or minded by relatives, we died as children or young adults from abuse, assault or lack of care, or, if ‘higher-functioning’ and able to look after ourselves, were labelled ‘eccentric’ or ‘loners’, and/or found jobs and positions where our need for rigidity and order was tolerated or even encouraged, even if we weren’t especially liked. We have always been around, and unless they somehow devise a way to wipe us out, we always will be.

So, if not the next step in evolution, or superior, what do I think we are?

…HUMAN.

We are first and foremost human beings, with all the glories and the imperfections, the beauties and the blemishes, the mediocrities and the marvels, that being human entails. I don’t want us to be seen as superior or advanced. I want us to be seen as human beings, entitled to all the same rights and responsibilities and privileges and burdens as other human beings, albeit we have to exercise these rights etc in our own particular ways, and often need accommodations or adjustments in order to live life to the full.

Only by finally being seen as completely and fully human, albeit a different type of human (which we are often NOT, right now, hence my need to write that ‘Autistic Bill of Rights’ recently), will we be able to overcome the discrimination, abuse, rejection, misunderstanding, unemployment, alienation, marginalisation, etc, that is currently our usual fare, and take our rightful place in the world. We sell ourselves short, if we aim for anything less than this fully human and equal status.