My review of 'THAT BOOK'

I’ve been trying for ages to write a review of THAT book. You know - ‘To Siri, with Love’. (I got it from the library, because not of all of us can afford to go out and buy new books, and anyway, why should I put money in her coffers?) Others have written theirs ages ago, but I’ve struggled with even reading it, picking it up and putting it down numerous times.

It’s not because it’s badly written that I’ve struggled so much with it. In fact, it’s fairly well-written, chatting away about her life and her sons, with that kind of wry, slightly self-deprecating humour which is always engaging. And she clearly loves her autistic son deeply, and he loves her too. He seems a loving, gentle, caring soul, and it’s great that she’s done what she can to nurture that. Also, she is in synch with us on at least some points, for instance (p 53) on stimming. (See, I’m trying to be fair.)

But. Sigh. I started to read - and the first sentence on the very first page, in the Author’s Note, says – “These days, it’s considered politically incorrect to call a person autistic.” Um… does she even realise that autistics themselves prefer ‘autistic’? Was she even aware of the existence of an adult autistic community, when she wrote that part? (If she wasn’t, I’m sure she is now!)

 A few pages later (p7), she utters what is really the defining sentence of the book. “Every person with ASD I’ve ever met has some deficit in their theory of mind.” Read that again – EVERY person with ASD. Someone has already written an excellent analysis of this, so I only want to say this – Theory of Mind (TOM), as a hypothesis, in my opinion, has more holes in it than a block of Swiss cheese. But even if it were true (and it’s a big if) – she’s forgotten one thing.

WE GROW UP.

The classic TOM tests are done on children. I don’t know a single adult autistic, no matter where they are on the spectrum, who lacks self-awareness, and who isn’t perfectly well aware that other people have different thoughts, feelings and opinions. We may have great difficulty in working out what those thoughts etc are, but we do know they have them. And, despite what she seems to think, I don’t think our difficulties with reading NTs (p 66) is a sign of TOM.

I soldiered on. Yes, all the horrible things others have quoted are there, and just as offensive in context as out of it. She asks, for instance (p 121), “how do you say ‘I’m sterilizing my son’ without sounding like a eugenicist?” Short answer – you can’t. And no amount of waffling on about the history of eugenics, or how there’s a “good success rate in vasectomy reversals”, just in case she ever changes her mind, will alter that. It isn’t even the issue.

The issue here is that IT’S HIS BODY. Not hers. His. It’s HIS right to decide whether or not he ever wants sex, wants to be a father, wants to have a vasectomy. Not hers. Got that, Ms Newman? And as for the ‘Benny Hill soundtrack’ comment, I’m old enough to remember Benny Hill, and frankly, I find it both revolting and mystifying to associate him in any way with that sweet boy.

I’m not going to dissect the book chapter by chapter – someone has already done that, way better than I could. My concern is rather with the underlying message of the entire book. Because despite her sometimes using adult autistics as a resource, her attitude to autistics in general is, well, troubling. I finally realised she really and truly feels, deep down, that being autistic is an inferior state, that to her we are a lesser breed of human. Even her attitude towards her own son seems rather like what you might have towards a beloved but somewhat less-than-perfect pet.

An example of this is when she compares her two son’s conversations with their friends. Her NT son’s conversation, riddled with smug one-upmanship, is somehow ‘better’ than gentle autistic Gus’s more straightforward communication (pgs 163-164), because it’s more ‘normal’, more ‘what friends are supposed to be about’. (Says who? Is there some rule book somewhere?) Or it’s more ‘proof’ of our lack of TOM. And on it goes. If autistic ways differ from NT, they’re bad, or lesser, or just wrong, or signs of a ‘deficiency’ in us… you get the picture, and I’m sure you’ve heard it all before.

There’s also her comments on autistic students at Cambridge objecting to Baron-Cohen’s suggestion that there will soon be a prenatal test for autism. While she allows that it’s okay to ‘not be normal’ (how kind of her!), she also says (p 213) “If you are on the spectrum and you’re at one of the finest universities in the world, you cannot speak for the person alone in a room, forever spinning the bright shiny object.” Translation: “you’re too high-functioning to understand/speak for the ‘really’ autistic”. I’ve already expressed my feelings about that sort of attitude here and here. Suffice to say that this kind of talk is both perpetuating a false division and unhelpful to all autistics. (Are you now understanding why it took me so long to read this book? It was all I could do to not repeatedly throw it across the room.)

And then there’s the issue of how she’s reacted to autistic objections to the book. Firstly, she seemed startled, saying that she hadn’t written it for autistics (imagine if a white woman wrote a book about raising a black child, then, when black people objected to her racism, said that she ‘hadn’t written it for black people to read’. Imagine the furore.) She’s followed this up with working systematically to silence our voices, even making pitying, denigrating comments about how our reactions are somehow ‘proof’ of that ‘lack of TOM’. Or perhaps, Ms Newman, we understand perfectly well when we’re being insulted and silenced, and quite naturally object to it.

The irony of us using the self-awareness and awareness of ‘different minds’ that we’re not supposed to have, in order to protest her state of mind, is not lost on me. It seems to be lost on her though – she seems unable to understand our states of mind, our opinions and feelings, how hurt we feel, how pushed out into the cold, how dehumanised, yet again.

This book is a strange mixture of awareness, confusion, misunderstanding, and sort-of-acceptance mixed with subconscious prejudice. It’s absolutely riddled with ableism. Despite being entertaining, despite it no doubt appealing to the ‘autism mommy’ crowd, it won’t make our lives any better. I doubt it will even make the lives of our parents any better, except perhaps in a “confirmation bias” kind of way.

The list of those who have done the autistic community a disservice is, alas, a long one. Ultimately, and sadly, Ms Newman has just been added to that list.

Autistics and Their Allies Getting Together

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

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

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

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

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

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

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

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

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

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

So what do these groups look like?

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

THOSE WHO AREN’T WELCOME IN SUCH GROUPS

- anyone supporting Certain Autism Organisations (you know the ones I mean!). Initial ignorance of their true agenda might be accepted, but if they continue to support them AFTER being informed, out they must go.

- anyone espousing a ‘cure’ for autism, or posting links that lead to pages or organisations promoting it, especially those involving bleach and the like.

- anyone who advocates ABA or similar therapies.

- anyone who is into ‘pity parties’ or the ‘poor me’ thing, for having an autistic child.

- anyone who insists on normalisation or ‘being indistinguishable from their peers’ as the only worthwhile goal for their autistic child/ren.

- anyone who is negative about autism in any way, eg referring to it as a disease.

THE POSSIBLE OBJECTIVES OF SUCH GROUPS

- supporting each other in their autism-positivity.

- working on ways to get the autism-positive message out to the general public.

- working on ways to enable their autistic children to be the best damn autistics they can be, ie the ‘maximisation’ approach.

- whenever possible, reaching out to ‘new-to-autism’ parents who may be confused as to what is the best way to help their autistic child/ren.

And of course, last but certainly not least -

- listening to autistics, both adult and if possible teens and children on the spectrum, with an open mind, and liaising with them wherever possible.

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

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

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

The Perfect Mother For An Aspie

Those of you who know me through Facebook will know that my mother passed away recently. It's been a great loss to me and my family, she was our gentle matriarch, our anchor, our centre and guiding light. But much of our grieving is a private thing, and it's not that I want to talk about, but rather about how she was as the mother of an aspie.

When I was a child, my mother, in an era when autism was barely heard of and Aspergers never heard of at all, seemed to recognise that I needed a little extra help with life, and it was just instinctive to her to give it. She guided, helped and supported me right all through my life, long before either of us knew about my Aspergers. Right up till the end, for instance, even after spending decades learning how to read people, I would still often turn to her to check on my perceptions, asking her things like "Did So-and-so seem __ to you?", and she'd say "no, I don't think so", or "Oh, yes, was she ever!", and so on. I'd ask her how to go about things, and she'd give me advice, in the calm, thoughtful manner that was typical of her.

In fact Mum was always very even-tempered, I rarely heard her raise her voice, except perhaps to call to someone in another room. She did get angry now and again - her lips would press tight and her eyes flash, signals even as a child I was able to recognise! But I don't think I ever saw her totally lose her cool. This composure helped me in turn, when I got agitated about 'little' things. Throughout my life, she was able to calm me down and prevent an incipient meltdown simply with a few quietly reassuring words and a pat on the shoulder or back, etc. She never assaulted my ears by yelling, and was always willing to adjust things to my sensory needs whenever reasonably possible.

My mum was intelligent but never intellectual, she operated from the heart far more than the head. This was a much-needed counterweight to my tendency to go off too much into my head - and though I never thought about it consciously at the time, I'm sure she influenced my realisation, in my late 20s, that the best path for me was a balance of heart and head.

She helped me in practical ways too. When I first learnt to drive, for instance, I was very nervous of driving at higher speeds, and when we went on long trips together she'd wait till we got somewhere less busy and then get me to drive, giving me patient advice like "it's best if you keep an even speed", or "turn the wheel more gently". I remember one day she reached over and patted my hand, and said "relax your hands, Pen, you don't need to grip so hard," and I realised I was clutching the steering wheel like it was a life raft and I was drowning! Like many aspies, I have my difficulties with driving, but I definitely became less tense and more skilled as a driver, thanks to her quiet help.

She was also a role model for me in many ways. While, like many on the spectrum, I've always had trouble expressing (NOT feeling!) qualities such as empathy, a lot of what I have learnt to do is through following my mother's example. Her entire life was centered around caring for people and helping them, particularly family, but also anyone else in need she encountered. She would always lend a compassionate ear to other's woes, as long as she felt they were genuine. Her generosity was legendary, and I was a frequent recipient of it. Her paid work was always in one helping profession or another and she was involved in a long list of charities over the years. She never made a big deal out of it, or indeed about any of her values and beliefs, rather she simply lived them. I absorbed much of this, at first without consciously realising it. Like her, I believe in helping others, and in doing my bit to make the world a slightly better place, even if the way I do it is different.

She also modelled courage and determination. After years of enduring an increasingly unhappy marriage to my father, in her middle years she divorced him, a thing almost unheard of for women of her generation and background, and launched into a new career as a social worker, making new friends, travelling the world (my mother saw much more of the world than I have!) and having all sorts of adventures. She even went paragliding - at eighty!! Many a time I've thought "well, if my mother can do 'x' at her age, I can do such-and-such at mine!"

Mum was always willing to try something new, find out new things. I know that if she and I were fifty years younger today, or if the diagnoses and information that's there now was around when I was a child, that she would have been researching and reading everything she could on autism and Aspergers. As it was, if she saw a magazine article or TV program about autism, she would always point out them out to me, and ask what I thought of them. She read my blog whenever I showed it to her (the Internet was always something of a mystery to her, tech-savvy she was not!), and was really supportive and interested in the column about disability issues I recently started in the local paper. She sometimes asked me how I perceived something, or why I had difficulty with something. Though she sometimes had difficulty understanding me, she always tried to, she always kept an open mind.

Despite all this, in her final illness, Mum said to me that she'd sometimes felt "helpless", to know how best to help me with my AS. I said to her that she didn't need to have done anything, that simply being herself was enough. We were interrupted then, and I never got back to the subject, but I would have gone on to tell her just how grateful I was for her total acceptance of me as I am. She told me once that when I was a child, yes, I had my "funny little ways", but "that was just you, it was just how you were, all my children had different personalities, I never thought twice about it." So much so in fact that when I first told her I suspected I had AS, she pooh-poohed it, even laughed. But then, ever open to new ideas and listening to people, she stopped and asked me why I felt that way. So I explained, and she listened, and finally said, "well, it doesn't matter, you're still my daughter and I still love you." And gave me a huge hug! I wish that I'd been able to tell her just how much that meant to me.

My being "different" never seemed to bother her. She teased me sometimes, true, but it was always done with affection, and that total acceptance. One of the final things she said to us was "no judgement, don't judge people". I never saw her judging people because of race, gender, sexuality, religion, disability or whatever. Family meant everything to Mum, and she also gave me the gift of a loving, extended family, always fostering my connections to them, drawing me into the circle, even when my social skills were pretty minimal.

Perhaps most importantly of all, I felt safe with my mother. When I was a child, she provided clear structures and routines, with fairly simple rules and expectations, yet all of it practised with love and patience. And throughout my life, I knew that I'd always have a place to stay with her if I needed one. I will miss many, many things about my mother, from the companionable dinners eating fried rice in front of the TV (often followed by 'naughty' chocolate!) to her wicked sense of humour, from her gentle wisdom to the trips we took together, and much more, but I think possibly I will miss that feeling of safety most of all. I don't know that I'll ever have that again.

For an aspie of my generation - indeed, any generation - she was the best mum ever. I wish that all autistics could have a mother like mine.

Normalisation vs Maximisation

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

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

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

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

'That' Type of Autism Parent, and their Criticisms of Us

 A while back, I wrote in praise of the ‘other’ type of autism parent, the ones who DON’T subscribe to the ‘autism as tragedy’ etc viewpoint. But today I’d like to examine the ones who do, especially those who claim that we adults on the spectrum, especially the activist ones, are, (in my friend John Greally’s words, from the type of emails he gets several times a week) “nothing but a pedo nanny-state interfering molester trying to get at their kid's life and wreck it, to stop the parents grieving their child to death with therapy and crap, to restrain them from lovingly ripping their child's autism mask off, the asshole who caused autism - or if not - the asshole who stopped him getting treatment by whingeing and confusing people, an obstacle stopping funding or taking funding, a fake malingering foil to his child's wellbeing, the distraction from his sons serious needs, the coward hurting his brave son's interests..."

I could go on, but I think you get the picture. But let’s examine these beliefs, one at a time.

1) That we are ‘against’ all therapy, and just want the child to ‘vegetate’ in their autism. Not true – rather, what we challenge is -

            (a) the GOALS they hope to achieve through therapy - ie are they trying to ‘normalise’ the child, to ‘eradicate’ their autism - or to teach them practical skills and knowledge that will help them function in the world as an autistic? (I will talk about ‘normalisation’ vs ‘skills-teaching’ in a further post.)

            (b) The TYPE of treatment or therapy they use – we have serious concerns about many of these. Some are punitive, a lot are overly demanding of time and energy, most are expensive, many are useless (and hence a rip-off), and some are just downright dangerous.

This DOESN’T mean we are against therapy altogether. See my earlier post about ‘cure’ vs ‘healing’ for more on this.

2) That we want to ‘wreck’ their children’s lives. Again, not true. These children are future members of the adult autism community, our successors in effect, why would we wish to harm them? This seems to be an extension of the belief we are against therapy, but also I believe it results from our statements that autism is not the ‘Big Baddie’. To them, it is, and so they interpret what we say as ‘condemning their child to a horrible life’. I really wish I could find a way to communicate to such parents that being autistic doesn’t necessarily mean having a terrible adult life – that there are good things about being autistic, that even the ‘worst’ features of it (meltdowns, communication difficulties, etc) can be ameliorated or minimized without eliminating the autism itself, and that other negative factors are the result of social attitudes which can be changed, just as attitudes to gays, people of colour, women, etc have changed. Life as an adult autistic is different, sure, but not a death sentence.

3) That we want to stop them ‘ripping the autism mask off’ their children, and thus ‘saving’ them from Big Bad Autism. There’s some truth in this – to the extent that we know that the autism is NOT a mask, not a ‘layer’ superimposed on an otherwise ‘normal’ child. It’s an integral part of their/our being, their/our identity. Attempts to ‘rip it off’ usually only result in the child realizing that this core part of themselves is Not Acceptable to those around them, and so they learn to hide it, to suppress their reactions etc, to their detriment in the long term. Depression and low self-esteem are huge problems for adolescents and adults on the spectrum. Is this really what these parents want for their kids? I know that most take this approach out of love, but it’s a misguided attitude, just the same.

4) That we are standing in the way of their kids getting funding for help and support. There have been a few instances in the States where autism self-advocates have opposed laws that would force health insurance companies to, for instance, pay for therapies like ABA. They’ve done so out of concern that these therapies are not the best way to help autistic children, or that such programs might de facto become the only ‘approved’ way to do so, and other, better ways might not be allowed as a consequence. Perhaps these instances are the source of this belief.

Or perhaps they think that if ‘higher-functioning’ adults get support, it will mean less of the government funding ‘pie’ for things like teacher aides or other support for their kids in school. Or maybe the mere fact that adult autistics exist and are speaking up to say ‘being autistic is okay’, in their eyes is somehow ‘dooming’ their kids’ chances of getting those things?

Whichever, it’s a false belief. The amount of help or support available to anyone on the spectrum, adult or child, is minimal to non-existent. It needs to be increased sizeably for EVERYONE.

5) That we are ‘fakes’ determined to distract attention away from their child’s serious needs. This is actually extremely insulting, not to mention based on false (and outdated) ideas of what autism truly is, namely –

(a) That only the most ‘severe’ or ‘classic’ autism, often now called ‘Kanner’s Autism’, is ‘real’ autism. This ignores the increased understanding of autism we now have. Do these parents just not know about this (which seems unlikely), or do they really think that all of the doctors, scientists, psychiatrists etc, who have been at the forefront of this change to a ‘spectrum’ view of autism (and that’s without mentioning the adult autistics themselves of course), have got it totally wrong?

(b) That the adult autistics now speaking up, simply because they have the ability to communicate, must therefore have no other problems or difficulties – and thus that we don’t have any ‘right’ to complain. It’s the “If you can speak, you’re not autistic” attitude. This is ludicrous. Firstly, many spectrum advocates aren’t in fact able to speak, or to speak consistently – they communicate wholly or partly through communication devices. Secondly, the ability to communicate, verbally or otherwise, is no guide to where the autistic person is in regards to the rest of their life. Autistic adults vary greatly in their abilities, degree of independence, etc, but even the most ‘self-supporting’ and ‘normal-appearing’ ones have major issues in a world that all too often doesn’t understand, tolerate, accommodate or accept them. And THAT is why we speak up!!

Sadly, the incorrect beliefs of these autism parents stop them seeing the things we are, at least potentially, in agreement on. I would really like to say to them –

“Please know that we too have the best interests of your autistic children at heart, even if we differ in what that ‘best’ is, and what is the ideal way to go about getting it. We have more in common than you think, and despite all the rhetoric and insults that have been tossed around to date, I still believe we can and indeed must work together in the long run, for the good of all autistic people.”

If only this message could get through, then a lot of totally unnecessary aggro could be avoided. Imagine if we all worked together to change government policy and social attitudes, instead of warring against each other. Imagine the power that would be unleashed, instead of it being wasted in mutually destructive conflicts.

Imagine the power we could have together. Imagine, and weep.

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.

Autism : Love as a One Way Street?

Recently I read an article in the latest issue of the New Zealand magazine ‘North and South’, called “Autism: A Mother’s Story”, also labelled, on the cover, as “Autism: When Love is a One Way Street”, about a young autistic boy and his parents. I was determined not to let this latter put me off – it was obviously done to sensationalise and sell copies, right?

At first, it seems, well, fairly ‘well-balanced’. This is a mainstream NZ publication after all, and the words ‘monster’ and ‘stolen’ are nowhere in evidence. And it’s sympathetic… But. A more discerning read reveals underlying biases: –

1) The sympathy is for the parents, especially the mother. Nowhere is there any sympathy for the child. When the mother explains, for instance, that she thinks his language delays are due to auditory processing problems, nowhere is there any hint that this, or anything else, might be a source of frustration for the boy, or for any autistic person for that matter. It’s all about how hard things have been for the mother, how ‘heroic’ the parents are, etc etc. (I’m not saying that it isn’t difficult bringing up an autistic child, but plenty of testimony has now emerged that life is damn hard for the growing autistic too.)

2) Much is made of the autistic child’s ‘inability’ to show love and affection. (Translation: he doesn’t show it how we expect, so therefore he doesn’t feel any.) Yet despite acknowledging that the boy “is capable of affection and loves hugs and the sensation of skin on skin”, they still bang on about ‘love being a one-way street’, pointing out that he sometimes calls his mother “by the name of one of his therapists as though the distinction between mother and therapist is lost on him”. Or, could it possibly be, that he simply doesn’t understand or remember names too well? And could it be that he does love his parents, but has no understanding that this can or should be expressed, let alone how? The underlying assumption or implication seems to be that autistics don’t have feelings like ‘normal’ human beings do, that they are cold, callous, selfish and uncaring.

3) Autism is still depicted as a ‘terrible’ thing. On the first page, we are told how, when she was told her son had autism, her reaction was that, having as older parents had all the tests to reduce the chance of a disabled child, “now they had a child with one of the worst of all”. Unquote. Sigh.

4) There’s no understanding that things might develop or change as the child grows older. The assumption is that the child will always be this way. (He’s seven!) Yet even a little research would have told the journalists that we on the spectrum are late maturers (often very late), and continue to grow our capabilities well beyond the usual age at which those of NTs become ‘fixed’.

5) There’s also no real understanding that autism is a spectrum varying in its degree of severity or its range of symptoms, and certainly no mention that at least some parents don’t see it as a ‘tragedy’. Or even that some parents are on the spectrum themselves.

6) And of course there is next to no mention of autistic adults. We might as well not exist, as far as this article is concerned, except in the sidebar about a different child, whose father is related to the now deceased author Janet Frame. And there they refer to her probable HFA or Asperger’s as “mental illness”. I kid you not.

This same family were the subject of a previous article in the NZ Listener in 2007, when the boy was only three. It had much the same tone, the only thing really different was that the family were then at the beginning of a whole host of therapies, which, the mother now admits, were “useless” and “a major scam”. (Oh, and the Listener article had a sidebar on Jen Birch, not the media’s first, or last, interview with her. I have immense respect for Jen, but the way the press uses her as a ‘go-to’ person for AS, you’d think she was the only adult on the spectrum in NZ.)

So my overall impression? That it’s ‘business as usual’ in the media regarding autism, it’s still ‘Awful Autism’, autistic children are still ‘cold’ and ‘heartless’, have no real feelings (and therefore we needn’t worry about them), they’re the last sort of child any parent would want, and autistic adults are invisible. Autism is getting ‘air-time’ and ‘page-time’, yes, and that’s good in a way, but there’s still little real understanding of autism, and the perspective of the autistics themselves is still missing, still not valued, not even truly recognised as existing. And this doesn’t look like changing any time soon.

Sigh. And double sigh.

(Quotes from “Autism: A Mother’s Story”, North and South magazine, April 2011 issue.)

My first article published online!

Hi people, long time no post i know, been busy writing a first-time article, heaps to get the hang of, steep learning curve! Anyway, said article has now been posted, it's on parenting, hope at least some might find it interesting. It's at http://www.suite101.com/content/basics-of-good-modern-parenting-a343660


Please do have a look, the more who look, the more i am likely to earn, and i am one very hard-up aspie!!! :D