I am a proud Autistic person. If an Autism ‘cure’ became available I would not take it. I would not even consider taking it. My Autism is part of what makes me ‘me’. In some situations I find myself doing that old social chameleon thing – more out of habit than intent – but mostly I’m Autie through and through. I certainly don’t see myself as inferior to neurotypical folks. I do not apologise for my Aspieness and I recognise the very large amount of positives – and some negatives – that Autism gives me.
Sadly, a lot of the word does not share my view. They seem to see Autism as an aberration or something which is only an issue, a problem and a deficit, They hold the view that being non-Autistic is better than being Autistic, and unfortunately, a lot of them have no shame in sharing those views with people like me.
Here is an example of one such instance:
I had a book launch for my ‘Wonderful World of Work: A Workbook for Asperteens’ earlier this year. It was at the National LIbrary of Australia. It was one of the coolest things I’ve done in my life. I was very happy. I gave a presentation prior to signing books and a lot of it was about working with the strengths of Autistic young people, focussing on what they can achieve and helping them achieve it. In true Jeanette style it was very affirming and self-advocate-y. After my presentation we went to the foyer of the library and I signed books. A friend of a friend came up with her worky workbook, ready for my authorial ‘John Hancock’. As I gave it back to her she said ‘you know, you don’t have to tell people you’ve got Autism’. I responded with ‘what?’ She went on: ‘You know, you could pass as ‘normal’ – as if this were the pinnacle of human existence. I explained to her that I did not wish to be seen as normal – whatever it may mean – and that I like myself just the way I am – as Autistic as God made me. My first act on returning home was to unfriend the woman on Facebook.
Sadly, this woman is not alone. A lot of people tell us that ‘you don’t look Autistic’ or ‘You’re just like everyone else’. I want a world in which people understand how dismissive and offensive this kind of thing is. I sort of view Autism as a culture, with its own ‘language’ and set of commonalities. Could you imagine if someone went up to Barack Obama and told him ‘you know, you could pass as Caucasian if you wanted to?’ There would – rightly – be an outcry. It will be nice when our Autistic identity is recognised and people who tell us how ‘normal’ we are as if it were a compliment will be roundly criticised and censured.
Me at book launch – May 2014
I had a lovely afternoon coffee meeting with a friend who was a colleague up until relatively recently when she left our team for a life of books and other good things. I will qualify this post with the thought that my friend is something of an introverted-type person and I am…well, I’m not. Like most extroverts, I get my energy from social contact. I think of my ideas while I’m having a conversation and I love anything which involves public speaking or performance. I have happily been standing up in front of audiences and telling them anything from a mildly rude poem (church prize-giving, age 8), to a poem I wrote about nuclear war (school assembly, age 13) or a TEDx talk about while resilience is a good thing for people with Autism and everyone else for that matter (Canberra Theatre Centre, age 39). My friend on the other hand, would probably be somewhat adverse to standing on stage and is much better at listening to others and quietly considering things.
Our conversation this afternoon took many enjoyable turns. We discussed books and risk management and parenting. Just as we were about to go and board our respective buses, we got onto the topic of social interaction. I mentioned that a natural human trait is to see other people as different versions of ourselves. So if we like cats, we are surprised when another person doesn’t like cats and may even be critical or dismissive of them. My friend responded by saying that the old adage ‘do unto others as you would like done to you’ could instead be changed to ‘do unto others as they would like you to do.’ I think this is fantastic advice. Instead of being self-focused and seeing others as a little extension of ourselves, we should maybe think about the other person as just that – another person, not us.
In practice, this might mean that I, as an extrovert, do not press my more introverted friends to give me their phone numbers or call them but rather to communicate with them in the way that they prefer. It’s really about being thoughtful and considerate. I think it’s OK to ask people what their preferences are too. Just imagine if everyone in the world thought like this. Instead of trying to force people to accept one way of thinking (think of extremists from whichever shade of extremism is doing the rounds at the moment), but to consider the needs of others who don’t share their views. Instead of feeling threatened and angry at difference, people could try to understand ideas and experiences from another’s perspective.
OK, so my friend and I have just fixed the world. Whats next??
Last year I was given the amazing opportunity to speak about Autism and resilience at the TEDx Canberra conference. At the after party I met a journalist who was covering the TEDx conference for the local paper. She asked me what I had spoken about. I responded ‘Autism and resilience’. The journalist made incredulous noises about how this was impossible and sidled off. Needless to say, there was no Jeanette article in the paper the next day!
The reason I spoke about Autism and resilience for TEDx Canberra was mostly due to a young man I met a while back. This man was 21 and had a diagnosis of Asperger Syndrome. He was evidently highly intelligent and perceptive but had finished school at age 15 because he ‘didn’t like it’. Fair enough, but he had no intention of completing his studies. He spent his days in his bedroom at his parents’ house, playing computer games. He had never driven a car or ridden the bus, so by a process of deduction, he had obviously been driven everywhere by family members. He seemed to think that employment was something that happened to other people and that he would never get a job. He was a lovely, thoughtful man but I worried that he would never gain an education or join the workforce and that this would be a huge waste of talent for the world, not to mention having a significant impact on the young man himself.
I thought about this man a lot over the coming months and contrasted his teenage experience to my own. I had no diagnosis until I was twenty and indeed, none existed before then. Consequently there was no learning support, teachers’ aides or specialist Autism programs at school. I was bullied, I was miserable and no-one helped. I was told by teachers that ‘bullying strengthens character’. I somehow finished school with a very high score for Year 12 but the whole experience left me damaged and filled with self-hatred. As an adult, I longed to have had an Autism diagnoses earlier then I did. But when I looked at the young man who had become ‘disabled’ by apparently having been shielded from most challenges, I could see that maybe it wasn’t as clear cut as that.
I said in my talk for TEDx Canberra that we need to diagnose kids early but that parents and schools need to build in some controlled minor ‘difficulties’ or challenges to help them build resilience, confidence and mastery. Here’s the TEDx talk if you want to watch it:
I think we need to approach a diagnosis in a young child as a first step to putting them on the path of building their confidence and resilience. So we don’t want people to have my experience where they get no help and end up hating themselves and we don’t really want the situation the young man I mentioned had where he seemed to have been shielded from everything remotely difficult and as such will have struggles engaging in the world. We want awareness of Autism and its challenges with a good dollop of resilience and mastery thrown in. There, that’s probably what I should have said to the journalist…
Jeanette at TEDx Canberra 2103
I am a lover of ‘nice things’. I always have been. When I was a young girl my parents made friends with a couple from church who were immensely wealthy. When I saw their beautiful home and all the things they had, I knew that I would one day be rich and have a house full of nice things for myself.
I’m writing this post because I just had a friend put up some box shelves in my lounge room where I can display all my knick-nacks, small artworks and treasured photos. I am loving my new wall-bling and will no doubt enjoy it for many years to come, but it got me thinking about all my stuff and then stuff more generally.
As an Autie, I am very visual and respond to beauty, colour and form. Having nice things that I can look at makes me feel happy and safe. The number of things I have is limited by the rather cosy size of my flat, but I’m sure if I had a larger home I would rush out and buy stuff which I absolutely have to have (like designer teapots, paintings, small ceramic things, clothes, more clothes, oh and jewellery and I’m sure Mr Kitty could use some extra cat toys….and so on.) And I’m not the only one.
The odd thing about nice things is that they don’t really matter. When I was about 23, a partner stole all my things – nice and otherwise – and moved away. I have very few possessions from before 1997. The odd thing is that I never think ‘oh, I wish I had that’ from those things. I’m sure if I lost all my things again I wouldn’t really mind. I would replace them with new things.
Karl Marx had an idea he called ‘commodity fetishism’. I think what he meant was that people see objects or commodities – such as nice things – as a goal and an aspiration. As soon as someone owns the thing they move on to wanting another. I think this is part of the idea of objects and the pursuit of wealth as replacing human connectedness and making people alienated (although I’m far from a Marxian scholar!)
So I think I’ve decided that I like nice things but they are simply objects to enjoy, not a major part of my being. When I’m dying, I sincerely doubt I’ll wish for a new teapot or painting. I’ll probably want to see my family and friends and my cat. I may want to hold my books and reflect on them and all that they mean but that is more because they are meaningful to me. And when I do die, all those nice things I have collected through life and which have meaning to me will probably be given to charity or thrown out. So I’ll enjoy my stuff but not let it alienate me from real relationships.
Autism advocate Debbie Denenburg very kindly wrote this article for my blog. I think you’ll enjoy it…
My autistic mind darts. I compare it to an old time pinball machine where there are bells, lights and flippers. When my mind has been overactive for too long it goes TILT. No activity. It simply stops functioning. I can’t think.
This is why focusing is so important to autistics. We call them special interests. Others call them obsessions. The point is that they provide relief from frenzied mental activity. As autistics we are sense based beings. Like animals we tend to tune in to everything in our environments – all at once. We can’t help responding to sudden sounds, flickering lights, overbearing scents. These things are personal invasions. We can’t control our reactions to them. This puts us in a vulnerable position. There has to be an outlet of some sort. That’s where focus comes in. And focus comes from intently concentrating on one thing.
Personally I have a number of artistic projects in the works. These are my “go to” outlets. I think most people would look at them and think I’m insane. But for me they represent a safe place where something is familiar and controllable.
One of those projects is gluing beads. It sounds ridiculously simple. It isn’t. I take thousands of tiny seed beads and other small craft pieces and glue them onto bottles or pieces of wood. They require my complete attention. Some of these projects take hours, some days and some go on for years. After working on them for a while I feel relaxed.
I have had cats for most of my life. I have always bonded with them and loved them. When I was a child, I made friends with kids – and adults – who had cats so that I could meet their feline furry friends.
When I moved to Canberra in 2007 to start a new and somewhat corporate life, I initially shared a house with a woman who was also a cat lover. However, this woman was disrespectful and sort of a bully to the humans in her life. For some reason, I saw strong associations between this woman and her two snooty, aloof cats. When I bought my own flat a while later, I vowed and declared that I would not be a ‘crazy cat lady’ like she was.
As time went on, my mental health deteriorated. I spent many months in hospitals and residential services. I struggled to do daily tasks and still have no idea how I managed to keep my job. I met a woman at work who was the local cat rescue lady and offered me one of her cats. At first I declined the offer. Then one day, I was home from work due to my mental illness. I felt terrible. I went outside to take out the garbage and came across a little tabby cat. I patted him and he purred. When I came back home, I realised that while I was patting the kitty I had not felt depressed or anxious. I called my cat rescuing friend and said ‘I want a cat please!’
She came to my house that weekend, with four carriers full of kittens. There were kittens all over my flat. It was immensely lovely (and I wish I’d filmed it and put it on YouTube!!). But none of the kittens ‘spoke’ to me. The last cat was a big adult boy. He was black all over, save for a tiny white smudge on his chest. He had bright yellow eyes and a sleek, shiny coat. I held him to me and he purred and purred. ‘I’m keeping this one.’ I said and we have been each other’s supporter and protector ever since.
Mr Ronnie – or Mr KItty as he is often known – has been a huge factor in my mental illness recovery journey. I now want to come home, whereas before I was terrified of being alone with the ghosts in my house. Mr Ronnie scares the ghosts away. He sleeps on my bed every night and I have never loved anything the way I love my furry boy. My mum says he is a gift from God. I like the idea that God is dispensing kitties to those that need them. Of all the good things that have happened in the past few years – books, TEDx talks, conferences, work successes – Mr Ronnie is by far and away the best. As I often say, there is nothing like the bond between an Aspie and her cat (or dog or horse or snake…)
Photo credit: John Purkis
Trigger warning – reference to sexual violence
I recently found out that a friend had been sexually assaulted by a pervy creep.
When I first heard this news I was very angry. I considered a scenario where I would find the creep and discover whether a man can actually die from being kicked in the nuts. Knowing that these sorts of things are rather ugly too and that one form of violence is not solved by another, I abandoned my angry images and settled instead on being triggered and miserable for a fair while. I have good reason to feel triggered by such things: I had a similar experience 24 years ago as a naive and trusting 16 year old Aspergirl.
As I move through life and meet more and more people on the Autism spectrum, I discover that experiencing sexual – and other forms of violence is sadly very common. Looking at my own experience, I had a very low self esteem, I didn’t understand the non-verbal cues so by the time I felt threatened it was too late, and I actually didn’t know what my rights were in relation to my body. I’d heard about rape but it was always described in terms of a stranger or criminal and this man was a hippie and I’d been talking to him all evening. I had also grown up in a very strict church and was told that women weren’t supposed to enjoy sex, so I figured that what was happening was probably natural.
It’s quite easy to spot why young people on the Autism spectrum are vulnerable to violence, and another still to find a solution. I suppose what we need to do is start the conversation with our daughters and sons, nieces and nephews, grandchildren and friends. We have to make sure that they have self-protection skills – not just an awareness of ‘stranger danger’ as often an abuser is known to the child. We need to model confidence and assertiveness and teach young people how and when to say ‘no’. Many good people are working to address issues around violence and young people on the spectrum. In my case, I would hope that in some way I can help people be safe and not have to experience what I know to be an invalidating and terrifying occurrence which can leave lifelong scars.
I will add that self-protection allows young people to be prepared and confident to address potential violence but the responsibility for the abuse always rests with the perpetrator. As some wise person said ‘How can you stop rape? Don’t rape people’.