I Don't Belong In This World

I don’t belong in this world.

By this, I don’t mean that I hate the world, or anyone in it. I love or have loved many people, some still alive, some not. And while sometimes I’ve shunned the world and held myself aloof from it for my own self-protection, yet at other times I’ve felt huge pity or compassion, even aching sorrow, for the world’s inhabitants and whatever pain they’re suffering, and I still do.

I also love the world’s physical beauties, its forests and sunsets, beaches and waterfalls, sweeping mountains and ever-changing seas. I even love many of its manmade splendours – feasts of colour and light, music that transports me, or the many architectural wonders of the world, especially old buildings, archways, hanging stones and other ancient sites.

But I’ve never felt like I belong here.

This not belonging has many layers or facets to it. There are spiritual facets – I know this isn’t everyone’s thing, but it is mine. It has nothing to do with what anyone else believes or doesn’t believe, but rather with a series of personal understandings I’ve gained over the years. Many years ago, for instance, I was in the women’s spirituality movement, but left because of its focus on Mother Earth and our female bodies – something I just do not feel that connected to. And for much of my younger years, I experienced something I could only describe as a ‘butterfly in a jar’ feeling. Then one day I realised it was my spirit yearning to be free. My true home, I know now, is with the Divine. One day, when I’ve done all I’m meant to do in this life, I’ll get to go there.

But it goes beyond the spiritual. I find myself repelled by many of the values that rule the world. Over and over again, I see honesty, integrity, decency, basic civility and even common sense being sacrificed on the altars of Ego, Greed and Political Expediency. Whether it’s in the political arena or the personal, I see so many appalling behaviours, and constant attempts to justify them by blaming the victims or some conveniently horrible ‘enemy’.

This is a world where there’s supposedly ‘not enough money’ to ensure decent incomes, housing, education or medical care for all, yet somehow there’s always enough money to go to war. A world where if you’re black, you can be arrested for sitting in a coffee shop waiting for a friend, or shot at for asking directions, but if you’re white and rich you can literally get away with rape.

And then there are wars, and pollution, and a greedy ripping out of the world’s resources without thought for the future, the capitalist hegemony that knows the price of everything, but the true value of nothing. And yes, I know there are those who fight against these warped values, but on the whole, the good people are not the ones in power, and even where they are, they’re sailing against the wind. I despair for the world, I truly do.

There’s also the effects of my physical disability – an acquired thing, yes, but it’s meant that for most of my adult life paid employment has been minimal to non-existent, and I’m now pretty much unemployable. Ditto for education, and any kind of community involvement. People rush off daily to wherever, while I stand apart, and isolated. (And poor, of course, something else that separates me from most others.)

Being a writer also means standing apart from society to some extent anyway, being an observer rather than a participant. Not to mention, when I have had jobs, I always felt like I was ‘wasting time’, and not doing what I felt I was ‘meant’ to be doing, ie writing.

But if I was simply any of the above, I would still be able to find a sector of society I’d fit into and be regarded by all as just another part of humanity, even if some disagreed with my political or spiritual opinions, or disliked what I wrote, and so on. But I’m also autistic. And as an autistic, I feel at odds with the entire world on a daily basis, its precepts and practises that just make no sense, and the constant slamming up against unspoken rules and social expectations. Even after decades of learning social skills, this is still a regular occurrence for me, and, I suspect, for most autistics. It’s the ‘square peg in a round-holed world’ feeling.

And while we autistics now have our own community, it’s one that most of the world seems to think shouldn’t exist. We’re seen as less-than-human, or even ‘monsters’ or a ‘disease’, and anything people do to us is considered fair game by most. The usual rules of decency do not apply to us.

So I’m alienated most of all, perhaps, by how we get treated, a mistreatment which ranges from simple ridicule through forced normalisation to outright murder. Not to mention the do-gooders who think they’re being ‘nice’ to us but who reek of fake-cheeriness or pitying inspiration-porn, the parents who never listen to us, the professionals who pathologise us, the teachers who don’t grasp just how different we really are, the media who demonise us… The world makes it plain that it only grudgingly tolerates us, at best, and at worst actively seeks to eliminate us. 

So no, I don’t feel welcome on this planet, or that I belong here. And given all the above, I think this is understandable.

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.

A Bouquet for the OTHER type of 'autism parent'

We all know the type of ‘autism parent’ we love to hate (or at least pity). The kind that goes in for the ‘autism as monster’ thing. Autism as the ‘stealer’ of their children. Autism as ‘tragedy’, autism as a thing to be ‘fought’, to eliminate, to ABA and ‘social skills’ and diet and train etc etc the hell out of their children. The kind who grab at anything and everything that promises to make their child ‘indistinguishable’ from their peers. The ones who can’t bear that their child should be anything less than ‘normal’.

Then there are the ones (usually in or running autism organisations that actively promote the above attitudes) who actively disparage those of us who dare to challenge those ways of thinking – the ones who refer to us as a ‘deluded minority’, crazy or sick, or ‘not really autistic’ at all – the ‘You Can Talk, So You’re Not Autistic’ parents, who accuse us of making their lives more difficult, of being against all training or therapy methods, and wanting to leave their children to ‘drown’ in their severely autistic states.

And also the ones (seemingly more benevolent, but just as contemptuous of us, in their own way) who actively deny us any role in ‘their’ organisations, who sideline and ignore us, claiming to speak for us but without ever consulting us, who pat us on the head and tell us ‘we know what’s best for you, dear’.

We battle these parents, or try to enlighten or ignore them, or sigh over their attitudes, but we sometimes forget there are other parents of autistic children out there who DON’T have these attitudes. Parents who DON’T regard their child’s autism as a ‘tragedy’, or their child as a ‘monster’, etc. Who AREN’T wallowing in grief for a ‘normal’ child they didn’t have, or running here and there searching frantically for a ‘cure’ (though many do seek alleviation for various problems their child might have), or forcing their child into strict programs designed to make their child at least SEEM ‘normal’. They have embraced the autism, accepted their child just as he or she is, and got on with their lives as best as they can. A lot of them are even willing to listen to adults on the spectrum, to get some idea of what their child may someday be capable of, or to help interpret their behaviour, so as to help the child better. Some are even on the spectrum themselves, as autism is genetic, but many are not.

I feel these parents, the ‘unsung majority’ perhaps, deserve a whole bunch of bouquets. Why? Some might ask, surely they/we are just getting on with their/our lives, doing what everyone should be doing? My feeling is they deserve praise and our support for NOT subscribing to the ‘autism as tragedy’ mindset. For NOT being sucked into the frantic search for a cure, the ‘autism business’ that sucks dry the bank accounts of so many desperate parents. For NOT believing that their child is somehow ‘deficient’, or not good enough. For accepting and loving their kids just as they are.

It would have been so easy for these parents to succumb to all that huge pressure, the massive amount of negativity that’s out there about autism, but they didn’t. They had the courage to follow their hearts and their common sense, to do what felt and feels right for their children. I salute their courage, admire their strength, and wish more parents would follow their example.

To those parents, my utmost thanks, and my blessings. You are nurturing the best of the future generations of autistics, and one day they will look back and know just how lucky they are. Thank you.

It's Time to Change the Negative Image of Autism

It’s time to change the negative image of autism.

We see it everywhere – anywhere autism is mentioned you can almost guarantee, if it’s not written by autistics themselves, then the image of autism is overwhelmingly awful. It’s a ‘tragedy’ and a ‘burden’ on parents, or a ‘monster’ which ‘steals’ children away and turns them into cold, unfeeling automatons, spinning or flapping objects and ignoring people; it’s  something that should be ‘cured’ or ‘therapied’ away, gotten rid of, by whatever means possible, and as fast as possible. And the picture of adults is in some respects even worse. We are either totally non-existent and hence invisible, or we’re ‘institution material’ - little better than zombies to be ‘tidied away’ somewhere out of sight of ‘normal’ people, pitied perhaps, but never the equals of those ‘normals’. Or at best, we are personal-hygiene-challenged computer geeks, with zits and zero social skills, necessary perhaps but again, hardly fit company for ‘normals’.

As I’ve mentioned in a previous post, this is what my friend John Greally calls the belief “that ASD is something to fix / therapise / eliminate / exterminate.” Furthermore, he comments, “If I am broken, then lay me down, drug me, benefit me, patronise me, glint at my least achievement and parade me. And by existing standards we are all broken.”

Compare this to, for instance, the current approach to mental health. Paula Jessop, another aspie friend, has commented that people she talks to in the mental health field are amazed at the treatment of autistic people. They have said to her that autistics are in the position that people with mental health issues were in some twenty or thirty years ago, of being ‘acted upon’, rather than being encouraged to be in control of their lives/condition. And there are certainly many similarities between the old and often harsh treatments (shock treatments, incarceration in mental asylums, ‘zombie’ drugs, etc) once given to mental health patients, and the ‘therapies’ now being inflicted on many hapless and helpless autistics.

Remember those mental health ‘know me before you judge me’ ads? And John Kirwan, the ex All Black and hard man, talking about his depression? Perhaps we need a similar set of ads, and/or some prominent person to come forward and tell the public – we are not Bad, Wrong, or Retarded. We are simply Different.

Because the outcomes of the ‘broken’ or ‘deficient’ viewpoint can be, and all too often are, catastrophic. Children being dragged through harsh ‘therapies’, which can involve physical violence, punishments, denial of food, denial of stress-relieving stims or suppression of even the slightest ‘autistic behaviour’. All sorts of weird and not-so-wonderful ‘treatments’ inflicted on their young bodies, which in some cases have even killed autistic children (better dead than autistic, some parents seem to believe). Parents being told that there is no future for their child, that their child will never love them back, and suffering agonies over the diagnosis. Or spending fortunes on those therapies and treatments, exhausting themselves and their bank accounts in the process, or spending their days fighting ‘the Big Bad Enemy’ of autism. Some of those same parents talking in front of their children about how ‘terrible’ autism is, how much of a ‘burden’ it is, and how they want to ‘get rid of’ the autism, at any cost. Autistic children growing up knowing that their parents reject the core thing that defines who they are. Young autistic adults who refuse to identify with autism, even if it means they deny themselves support and what little services exist for them, because they have so thoroughly absorbed the ‘autism is bad’ belief. Or adults who do accept their autism, but spend their lives feeling bad about themselves, and wanting to be somebody else – anything else, but autistic. And yet other, older adults, who have managed to stumble through decades of adult life somehow, always knowing they are ‘different’ and anguishing over it, but never thinking to identify with autism/Aspergers, because, well, it’s those ‘weirdos / geeks / retards’ over there, right? Not them. Rock-bottom self-esteem, self-harming, depression, suicides, hospitalisations, stress-related physical ailments, high rates of unemployment or under-employment amongst adult autistics, and more. And more. Wasted talents, wasted lives, wasted money, wasted potential.

Demonizing the autism helps no-one, not the parents, not the autistic children, not the adults they will become, or the adults that already exist, nor even society in general. We have real talents and abilities that could be utilized for the benefit of all, which are being ignored. Instead of being considered a problem, we could be seen as a resource and opportunity.

This isn’t about denying the real difficulties we have, or the difficulty parents have in raising autistic children, especially the more ‘severely affected’. Rather, it’s about affirming that the image is wrong, not the autistic person. That to reject the autism means rejecting the autistic. Let me repeat that, so there is no misunderstanding. Rejecting the autism means rejecting the autistic person. Anyone who rejects their child’s autism, or their own, rejects the child, or themselves. Autism is not a ‘layer’ that can be peeled off to reveal the ‘real’ person underneath. Nor is it something that has ‘stolen’ your ‘real’ child. It IS the real child – or your real self. And it’s not bad, mad, a tragedy or a monster. Unless someone makes it into one, in their minds. It simply is. A different way of being, but not necessarily a lesser one – again, unless it is made so in someone’s mind, and then in their lives.

Perhaps we need our own ‘autistic pride’ movement, similar to that of the ‘Gay Pride’ or ‘Black Pride’ movements of the past. Certainly, the time seems right to push for more realistic images of ourselves in the media, to ‘come out’ as autistic whenever possible, to get the facts about what it’s really like to be autistic ‘out there’, to the media, the justice system, health professionals, the education system, etc etc. Indications are that at least some are willing and indeed even eager to listen and learn. I won’t say we have nothing to lose, that would be foolhardy, but haven’t we’ve suffered enough? Hasn’t there been enough pain, enough trauma, enough of everything?

So let’s do it. Let’s get out there and do whatever we can, in whatever way we can, to change how autism is portrayed, to put an end to those harmful negative images. I believe it’s the single most important and liberating thing we can and need to do, for all our sakes.

Don't Hate The Autism Either

http://www.ageofautism.com/2011/07/hate-the-autism-not-the-kid-please.html

I don’t normally bother to read the likes of these sorts of websites, they are entirely too much doom and gloom; but I was trying to find out why I had so many links to my blog from Age of Autism (I never did find out, I must have commented on a page somewhere, I certainly doubt I am in their list of ‘fave’ blogs, lol), instead I found this. And I just could not let it go unchallenged. Here is my comment, slightly edited.

“I would say, don't hate the autism either. I can sympathise with parents of severely autistic kids, but i do not think hating the autism will help either them or the child. Firstly, hating anything is a waste of energy, and keeps the parent stuck in the angry, grieving mode. It's hard, yes, but it doesn't have to be a big tragedy thing, not every parent of an autistic child reacts that way.

Secondly, Autism cannot be separated from the child - it's as much a part of them as being (in these instances)male, and (presumably)white and American. It can't be ripped off or out. Being taught to 'hate' their own autism, means sooner or later the child will hate themselves for being autistic. Is that what anyone wants for their kid? It harms the child in the long run. 

Consider this prospect - young adults on the spectrum, who have been taught to despise autism so much, they refuse to identify themselves as autistic, and deny themselves what support and services do exist for them, as a result. Or, they do identify with it, but are so ashamed of being autistic, because they know that it's ‘bad’, so once again they stay away from the places and people that could help them. Or, they are older autistic people who have somehow managed to fumble and bumble their way through life, always knowing they are 'different', and feeling 'lesser than' as a result, but never think to identify themselves AS autistic, because autistic people are 'those loonies and retards over there', not themselves, right?

Short version - please, don't hate the autism either. It's just as harmful, to both parent and child, as hating the kid.”

These, I might add, were not hypothetical scenarios I was talking about. See Rachel’s blog here, where she talks about the plight of young autistic adults who deny their autism. And I myself, like other autistic adults I know, spent many long, lonely, painful years not understanding why I was ‘different’, always feeling inferior to the ‘normal’ people, but never thinking I might be autistic, because of the negative stereotypes we all know of.

Whether the moderator has even let my comment through, I have no idea. Even if she does, there may be lots of negative replies or it will be just ignored or dismissed as ‘another one of those shrill neurodiversity nutters’, perhaps. I can but ‘plant seeds’, hoping that something I say, somewhere, will cause an ‘autism-as-tragedy’ parent, or someone else, to stop and think. And maybe listen, for once, to the ‘real’ experts in autism – the ones who actually live it.

On Respect

1.) Having done a (very informal and unscientific!) poll amongst my online aspie friends and acquaintances, it seems that what we want most from NTs is simple respect. With respect, all things are possible. If NTs interact with us with respect, then they will listen to us, truly hear what we are saying, believe that our experiences and viewpoints are valid (even if they don’t understand them), trust that we know what we are talking about; and generally realize that while we have certain difficulties in life, yes, and need certain types of assistance, yes, we are nonetheless human, essentially more ‘like them’ than ‘other’, that we are ‘different-but-equal’. And we can hear them too; we can be open to their concerns, because dialogue is only possible between equals. 

Without respect, we can only be ’managed’, lectured at, told how ‘deficient’ we are, and how we ‘need’ to do this or that to ‘get our lives into shape’ and be ‘normal’, etc etc, we all know the script, and the situations. So respect has to be a starting point, for all meaningful and productive interactions between us and NTs. 

2.) Those who show us the least respect, in fact none at all, are those organisations and parents of autistic kids, of the ‘autism is a tragedy’ mindset. I’m not going to name names, but I’m sure you know the sort I mean. The ones who say we can’t possibly be autistic because we can talk, read and write, and live (more or less) independently; that only those who are ‘low-functioning’ are ‘truly’ autistic. And therefore we are ‘attention-seekers’ and ‘noisy nuisances’ who ‘trivialise real autism’ (hey, I’m only skimming the surface of the insults here), whiners without any ‘real’ problems who should just go away and shut up. Especially if we dare to suggest there is anything of value about being autistic, or question the type of therapy they are putting their kids through. Because autism is a ‘tragedy’ and a ‘monster’ and they are going to ‘cure’ their kids of it, and make them normal, come hell or high water. 

Such people ignore not only our voices but those of the scientists, doctors, psychiatrists and other researchers who first defined autism as a spectrum of disorders. They ignore everybody in fact but those who pander to their paranoia, ‘poor me’ viewpoint, doom-saying, frantic searches for a ‘cure’, and anti-vaccine etc viewpoints. There’s much I would like to say to such people, but there’s little or no point even trying to engage them in a dialogue, because that simple ‘different-but-equal’ respect is missing. Far better, perhaps, to try and reach those parents of autistics and others who are willing to listen.

Enough said. For now.

What I believe about Autism

I figure I might as well lay out my beliefs about autism from the start. Note I include Aspergers here as well.

1) Autism is genetic. Period. Even if there’s no autism in your or your spouse’s family (have a lot of techies and engineers in the family? A few ‘eccentrics’ or loners?), it’s still genetic. It’s not caused by vaccines, mercury, bad parenting, damage in the womb or at birth, or any other environmental cause. The most I will accept is that something might trigger the autism that is already there. As for the ‘autistic collapse’ which so many report, read Charlotte Moore’s book ‘George and Sam’. She goes into a lot of depth on her two autistic sons’ collapses, on how the signs of autism were nonetheless there from birth, subtly but unmistakably. She also postulates that these ‘collapses’ might be due to how, while we expect little social or linguistic interaction from babies, greater expectations in the infant’s second and third years (typically) overload and cause a withdrawal on the part of the young autist. To which I would add probable sensory overload as well.

2) Autism is not a monster. My autism is me, and I am my autism, it affects every part of my being and my life, and while I’ve never been any angel, I’m certainly not a monster. There is no ‘normal’ person underneath the autism; it is not a ‘layer’ hiding the ‘real’ person. Our ‘true selves’ were not ‘stolen’ by the ‘monster autism’. What you see is the real person. We’re autistic all the way through. Deal with it.

3) Autism is not a tragedy. It can be difficult, yes, even arduous, raising a child on the autistic spectrum, even one with the ‘mild’ diagnosis of Aspergers. But it’s only a tragedy if you make it a tragedy. Attitude is what counts. Go around boo-hooing about how hard your life is now, lamenting that your child is ‘not normal’, and you will make your life infinitely harder than it need be. (And for those who think, “oh well, she’s obviously on the ‘higher-functioning’ end of the spectrum, she doesn’t know what it’s like raising a severely autistic child”, I would say here that I worked with such children back in the 1970s, before modern understanding of autism. Also a good friend of mine has a child who is severely autistic and developmentally delayed. I know what I speak of.) Read Jim Sinclair’s essay ‘Don’t Mourn for Us’ (at http://www.autreat.com/dont_mourn.html ), grieve for the child you thought you had that wasn’t born, and then deal with the child that you have. Love them as they are. They will need it.

4) Autism is a disability. Now this one is tricky, and needs to be qualified. It hasn’t been (in my opinion) adequately separated out what about autism truly causes the person to be ‘disabled’ or ‘lesser-abled’ – such as our executive dysfunction, lack of innate social skills, inability to read body language instinctively, or developmental delays – as opposed to those traits which are simply signs of our different thinking/reacting to the world – eg our stimming, our visual thinking, or our ability to thoroughly absorb all there is to know about our favourite subjects. The first, we need help for, yes, the latter, I don’t see need to be ‘corrected’ or ‘squashed’ at all. Sometimes, it seems even those on the spectrum aren’t too clear about this distinction.

5) Autism’s different mind-set is NOT a disability. This follows on from the last, really. We have a lot to offer, if the world would truly listen to autists themselves (and I don’t mean only those who are ‘higher functioning’ either). For instance, our thinking isn’t bound by the usual conventions, prohibitions, and restrictions. We cut through the bull, the ‘beating around the bush’, the little dishonesties that rule most people’s lives. We call it how it is – even if it’s nonsense (to use the polite word). We’re truth-seekers. Some actually like this in us. And if the world would only give us a chance, they might find much more to value in our ‘different’ ways of thinking and reacting to the world.

6) Any therapy for autistics must take the above into account. There is a belief out there among some parents of autistic children that we adults on the spectrum are against all therapy for autistics. Not so – or at least not the ones I know. What I (and i suspect many other autistics) would like to see is that before undertaking any therapy, parents ask themselves – what am I hoping to achieve? Do I want to give my child specific skills that will help them in life – or do I want to eliminate all signs of their autism? The first is the help your child desperately needs, the second is not, and may even be harmful. Read the following, which explain this better than i can, and in more depth - http://www.adeepercountry.blogspot.com/2010/11/autistics-speaking-day-post.html

Okay, that’s it - for now.