Some Pet Peeves of mine

1.) Muzak. This will be no surprise to some of my friends! But truly, going into a supermarket or shopping mall is enough of a sensory-intensive experience, without adding a layer of jangly music to the cacophony. It wouldn’t be so bad if they played decent music, but instead it’s endless re-runs of Abba and Rod Stewart (who I never thought was any good as a singer the first time round), the best they ever seem to manage is the occasional bit of John Denver. And don’t get me even started on Xmas muzak, or the muzak they blast your ears with when you ring some company and they put you on endless hold, only interrupting it now and again to tell you how much they value your custom… If they really valued it, they’d put more people on their phones, but that’s another story.

2.) Religious ‘hawkers’. I mean the people who come to your door and try and ‘sell’ their religion to you. First of all, it’s a sort of invasion of spiritual privacy. I don’t come to their door trying to push what I believe on them, and I object to them coming to my door and trying to push their beliefs on me. Secondly, spirituality is, I believe, a deeply personal, private relationship between you and God. Touting your beliefs door to door like a set of encyclopaedias or Rawleigh’s cleaning products cheapens this relationship, in my view. (Salespeople don’t come to your door selling encyclopaedias anymore do they? Am I showing my age?)

3.) Phone salespeople. Aargh! Why do these people always ring when you are trying to cook dinner! Or eat it. But that’s just part of the irritation. I truly object to being rung out of the blue by someone trying to sell me timeshares in Gold Coast resorts, or get me to contribute to some charity. If I wanted to buy such things (supposing I had the funds), or contribute to that charity, I’d be doing it already, thank you very much. Goodbye. Slam phone down. Grrrr! 

4.) Housework. Whatever man dreamed up the idea that women should do all the housework was as cunning as a weasel. Seriously, there is something about possession of a womb that makes you more capable of cleaning a toilet? And they can send a man to the moon and invent the Internet, but can’t put together a decent robot to do the housework? If men had to do it, that robot would have been invented 300 or even 3000 years ago, trust me.

I’m sure there’s more. But that will do for now. Venting done.

A Book Review

A good book I’ve been reading lately is ‘The Autism Answerbook’, by one William Stillman. It’s meant for parents of those with autism, like so many on the market at the moment. But Stillman himself has Aspergers, and therefore takes a different approach to the advice he gives parents. While I don’t agree with all that he says (eg on the use of ‘person-first’ language) and he probably doesn’t go far enough in some other respects, I nonetheless think he makes some excellent points. 

For instance, he tells them that autism is a “unique and different way of being”, a “natural variation of the human experience”[1]; and urges parents to value and support the child’s ‘passions’ (which others call ‘obsessions’), rather than trying to suppress them. He tells parents that the real experts on autism are the adults on the spectrum, and to parents who might feel devastated by their child’s diagnosis, he points out that this may be due to popular images of autism or news stories that put a ‘tragic’ spin on autism, or unhelpful, gloomy pictures of their child’s future painted by those who gave them the diagnosis.

But I feel the best thing he does is to take a stance focussing on three themes – 

1. ‘Presumption of intellect’. This means that even though an autistic child may not speak, or speak clearly, seems disinterested/detached from the people around them, and doesn’t respond to standard IQ tests, nonetheless you take a stance that they are aware and intelligent, comprehending in their own way what is happening around them. It means treating them with respect, eg by not talking about them in front of them, as if they are deaf or intellectually handicapped, especially if it’s to moan about their ‘deficits’ or the stress they are causing in your life. It also means parents ‘partner’ with the child in every aspect of their life, to allow them (obviously varying degrees of) input and control over decisions made about them. A very valid point, I think.

2. Prevention instead of intervention. This means learning to plan ahead for anything that might cause difficulty for the autistic child, rather than wait till afterwards and (try to) handle the sensory overloads, meltdowns, social disasters, etc. This seems like common sense to me – stopping things before they start is a whole lot easier than cleaning up the mess afterwards. But at least some parents don’t give it enough thought – they seem to just want or expect the kid to ‘behave normally’, even when that patently isn’t possible.

3. Fostering self-advocacy. While the child is young, they will need their parents to advocate for them, it’s true. But as they grow and mature, it’s possible to teach autistic children some degree of self-advocacy, ie learning to handle and communicate their own needs. Even for those deemed ‘low-functioning’, I feel this is an important point. Parents of ‘normal’ children (well the good ones anyway) do their best to foster independence, self-care and self-expression in their children, even if the kids are intellectually or physically handicapped. Why should our autistic children deserve any less?

I’d recommend this book first of all, to any parent with a child newly diagnosed with an Autistic Spectrum Disorder. It’s a great starting point, and a whole heap better than the ‘doom and gloom’ brigade, or books which only emphasize the child’s ‘deficits’ and ‘lacks’.

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[1] Pg 2, The Autism Answerbook, William Stillman, Sourcebooks Inc, Illinois, 2007.

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.

A couple of links to other stuff i've written

Here is the link to the (short) version of my story that was published on Alyson Bradley's website, for those who are interested or who have asked me about my earlier years.
It's at http://asplanet.info/index.php?option=com_content&task=view&id=138&itemid=184

Also, here's a link to another piece i wrote, also on asplanet, about how the world MIGHT look if aspies/auties were in the majority, and NTs the minority. I would probably write it a little differently now, but the basics still stand.
http://asplanet.info/index.php?option=com_content&task=view&id=93&itemid=139
Let me know if you have trouble with the links.

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.