Sunday, 28 July 2013

Autism Is Not An Excuse To Do Nothing

I’ve noticed a disturbing trend in some autistics, especially younger ones, namely that they consider a diagnosis of autism or Aspergers sufficient reason to ‘give up’ on life, or to not attempt anything in the least bit challenging. This was reinforced recently when I read Anita Lesko’s chapter in Different, Not Less, a book about autistic achievements and successful employment. A photojournalist and registered nurse-anaesthetist herself, with a busy life, after her diagnosis she was shocked to find that some saw their diagnosis as “like a death sentence”[1]. Like me, she’d been relieved to finally have an explanation for her ‘difference’, and had assumed others would be the same. Instead, she found people saying that they were “glad” they hadn’t had a diagnosis before then, because that would have meant that their life “would have been over” even sooner. She saw otherwise healthy young people “who had given up on living”. When Anita asked one 22-year-old woman if she had a job, she looked up from her needlepoint and said indignantly “I’m not ready for that!”

Don’t get me wrong here. I’m all too familiar with the problems aspies have in employment and education, and with the world in general, and the huge stresses we can experience. I know how it can lead to mental or even physical illness, and how we can end up ‘dropping out’ of jobs, education, etc, etc. I most whole-heartedly agree we need more accommodations and support when we do go into higher education, training or jobs. And I strongly support the idea of young autistics taking a ‘gap year’ – or more - between school and further education. But none of that is either reason or excuse to sit back and do nothing at all.

Perhaps this is one area where we older aspies, diagnosed later in life, have an advantage. We’ve been out in the world, doing all sorts of things that autistics aren’t ‘supposed’ to be able to do, and learnt both our strengths and our limits. We know what we’re capable of, because we’ve already done it. So the idea that we should ‘not even try’ is ludicrous to most of us. My own life is an example of this. I joined the workforce for the first time at 17 (totally ‘unready’, but I did it anyway), and have worked at all manner of jobs since, with varying degrees of success. Moreover, though I’ve spent a lot of time out of the workforce due to chronic illness, most years that I wasn’t too sick, I’ve done either university study or some kind of community education, back in the 80s I was in the feminist and anti-racism movements, while in the 90s I was into women’s spirituality and New Age activities. I’ve also been married to a man, spent nine years ‘married’ to a woman, raised a child, done quite a bit of volunteer work, not to mention my own creative work, amongst many other things. And yes, it was often very hard, and if I’d had more support, understanding and mentoring, maybe it would have been so much easier, I would have succeeded better, probably wouldn’t have gotten ill, and would have had a different life altogether… But, but, BUT!! NO WAY do I think I should have just sat at home and not even tried. Where on earth would that have gotten me?

These young people seem to have got hold of distorted, not to mention very limited, ideas of what being autistic means, in terms of their human potential. Anita implies their parents are largely to blame, as they drag their children from therapist to therapist, so that the children “begin to think there must be something wrong with them… [which becomes] a self-fulfilling prophecy.” Societal attitudes that autism is a ‘disease’ and a ‘tragedy’, and ‘expert’ opinions which focus on autistic ‘deficiencies’ and not on our strengths, must also share the blame. They have sucked these autistics into sharing their negativity, and are creating the very ‘burden’ that society fears. And yes, I know there are many young people with autism who are NOT like this at all, and which I loudly cheer! My concern however is that even some are, that they’re sitting around at home, lost and cut off from their own potential, believing that they “can’t” fully take part in all that life has to offer.

By doing so, they may not suffer various stresses – but they never experience the highlights of life either. They miss out on the joy and satisfaction of pouring yourself into an interesting course of study, and the absorbing and worthwhile career that can follow it. They never know the fulfilment of finally graduating after years of hard work, the honest praise of bosses and co-workers for a job well done, or the delights (and the challenges) of having relationships, children, community involvement, etc, etc.  They never experience the personal growth and development, the plumbing of their depths and testing of their limits, that all of these can bring. They’re cut off from the world, and it’s all so, so unnecessary! (Anita points out another reason for not just sitting back and giving up – namely that these young people can end up eventually in institutions or homes when their parents are gone, a valid point.)

Yes, we find so many things hugely more challenging that NTs do, and it’s up to each individual to decide how much and what they can do, but some challenges are an inevitable part of life, for everyone. These challenges fall into several categories – the ones that we can cope with okay, the ones that need to be ‘managed’ or ‘mitigated’, the ones that we should totally avoid, and the ones that will really stretch us, but which we wouldn’t miss for the world. To go back to my own life for a moment, the autism conference I recently attended fell into the latter category for me. I got there at all only because of a lot of help from my friends, it involved weeks of preparation, long bus journeys, coping with lots of noise, crowds and various anxieties, long days filled with lots of talk and walking to and fro, etc, etc, and afterwards I was exhausted, both physically and emotionally, even falling ill for a while. But I got so much out of it too – not only did I get to spend some great times with my fellow autistics, I believe the conference itself was a hugely important event, hopefully a turning point for autistics in NZ, and I am so glad I went.

Not that I am saying we all need to attend conferences, but rather that we need to teach these young people not to shy away from all difficulties that come their way. We need to show them that being diagnosed autistic is not the end of their life, just the beginning of a new phase of it. That there are ways to cope with difficulties, to ‘work around’ problems, and that we older aspies (as well as the more active younger ones) have wisdom to share about this.

Because we are all capable of so much more than just sitting around doing needlepoint and feeling sorry for ourselves. (I have no special beef against needlepoint, just that if that’s all you’re doing, it’s not much of a life.) If an autistic finds or feels that they can’t do one thing, then they should try another. If one job or profession doesn’t suit, choose a different one. If a young person doesn’t feel ready yet for university, they could still be preparing for it. Or they could do polytech study or on-the-job training instead. They could do volunteer work. The choices are endless. But what they shouldn’t do, is nothing at all! The supports (where they exist) are meant to help us participate in the world, not to keep us apart from it. And where supports don’t exist, there are still ways to get through.

I want these ‘My-Autism-Is-A-Death-Sentence’ autistics to get up off their behinds and go out into the world, in one way or another, to do something with their lives, because their idea that ‘their life is over’ when they are diagnosed, is based on a totally wrong conception of what having autism/Aspergers means. As Anita says, “It’s not a disease, it’s a way of life.” Though some would deny it, we are human beings, with all the chances and choices, the freedoms and obligations, that this means. As tempting as it can be sometimes to swear permanent retreat, especially at times of overload (that FTW feeling), all autistics need to be part of the world, in whatever way, and as much, as we can individually do, in order to have a life worth living.

[1] This and subsequent references are from Anita’s chapter in Different, Not Less, edited by Temple Grandin, 2012, Future Horizons, Arlington, Texas; pages 205 – 206.

Monday, 15 July 2013

Altogether Autism Conference Speech

I haven't written here for awhile, as I've been busy preparing and practising a short speech I gave as one of a panel of aspies, at the Altogether Autism Conference, last week in Hamilton, New Zealand. I decided to include the full speech here, in case anyone is interested.

"Hello people, my name is Penni Winter, and I’m what’s known as a self-diagnosed, peer-confirmed aspie, or person with Aspergers. What this means, in my case, that it took about two or three years of intensive research and reading before I could accept this new identity, and it took more years and meeting with other autistics before I felt comfortable in it. It certainly wasn’t a step I took lightly, or on some kind of whim.

I always knew that I was ‘different’ ever since I was a young child, and my life certainly hasn’t been an easy one, as I basically stumbled and bumbled my way through a world that I didn’t understand, and which didn’t understand me. I suffered along the way a great deal of personal misery, not to mention chronic depression and low self-esteem. I spent decades trying to either figure out why I’m ‘different’, or to transform myself into something more ‘normal’, or to simply hide the shame of my ‘difference’. I failed badly at all of these tasks, and eventually concluded there was no label that fit me, that I was just an inferior specimen, a sort of lemon off the human production line.

Then several years back, while I was working as a teacher aide, I was assigned one term to working with a young girl with Aspergers. I had heard of Aspergers, but didn’t really know anything about it, so I decided to do some research. Imagine my shock when I recognised not just my student, but myself, in the descriptions. For the first time I saw all my idiosyncrasies listed in stark black and white. It was a revelation, just when I’d decided there was no explanation for my ‘weirdness’. Nonetheless, for a long time, I really struggled with accepting the idea of being autistic. In fact, my initial reaction was along the lines of - “Who, me? Autistic? No *expletive-deleted* way!”

And why? Firstly, because I don’t fit the common stereotypes of someone with autism or Aspergers. I was, and still am, a functional, independent adult, with plenty of verbal ability. I’m also not a child, or male, or any kind of computer geek or trainspotting nerd, I’m perfectly capable of empathy and compassion, I’m not an emotionless semi-robot, and I like to think I have a pretty good sense of humour - I can even do sarcasm, though I do often find it difficult to read other people’s sarcasm.

Secondly, the official criteria for autism seemed extremely negative to me, focussing as they do on rather dry clinical descriptions of autistic ‘deficiencies’. If I had read only those, I probably would have ended up rejecting the whole idea of being autistic, because my self-esteem was quite low enough already. Fortunately, during my forays in the library and on the Internet, I stumbled upon autobiographical books written by other autistics who I could identify with, and then forums and Facebook groups run by and for aspies, as I learnt that they – we – call ourselves.  These played a key role in my coming to accept and even embrace my autism, and, eventually, in finally ridding myself of my sense of low self-worth.

Because in the process of getting to know other autistics, I found that the stereotypes I’d held were demolished and the myths were debunked, as the ‘real’ autistics emerged from the shadows. Friendships – which had always been problematic for me – suddenly became much, much easier, as for the first time in my life, I found people ‘on my wavelength’, who thought, felt, acted and reacted ‘just like me’. A common reaction amongst us, when something was shared, was “you mean you do that or feel that too? I thought I was the only one!” So gradually, I began to think, “hmmm, these people are like me, and yet they’re not terrible people, quite the opposite in fact, maybe I’m not so bad either…” And so that huge burden of self-hatred began to slide off my shoulders.

And eventually, I met other autistics not just online, but in real life as well, most especially through ASK (Autistic Spectrum Kiwis), the group that I’m part of today. And they accepted me, just as I am, no need for shame or pretense or hiding my true self anymore. To someone who spent so long lost in a sort of social wilderness, this still seems like a minor miracle, and one which has greatly enhanced my life. I wouldn’t be where I am today, nor I think would I have a life worth living, if it weren’t for my aspie friends and connections. Because we all need our peer groups, and autistics truly are no exception.

So whether it’s for yourself, your child or student, or perhaps a client or patient, I cannot stress too much the importance for autistic people of the support and friendship of others on the spectrum - no matter what age the autistic person is – autistic children have also benefited from meeting their real peers, and making friends with ‘others like me’. But without such support and companionship, even if it’s only online, we are doomed to being always the ‘weirdo’ or the odd one out wherever we go. And I can say from bitter personal experience, that being that kind of permanent outsider is not the path to a meaningful and happy life.

Thank you for listening."