You can’t say that! – Autism, advocacy and some very rude people

Being an autism advocate can be a funny old life. I am a person with lived experience of autism who is proud, vocal and has lots of self esteem. However, I live in a world that devalues the experience and very existence of people like me. So while I don’t care how ‘normal’ I might appear and am proud of my various Aspie quirks, I live in a world where being different – particularly being the autistic brand of different – is seen as shameful and ‘weird’. My job – or at least one of my jobs – as an advocate is to address this issue and make the world a better place for people like me to live in. To build acceptance and inclusion, to make the way easier for others on the spectrum.

This has not always been the case. I spent so many years wanting with all my being to be like everyone else – whatever that meant. I had low self-esteem. I didn’t want to be different. I wanted to be one of the ‘cool kids’. Something happened when I was 30 that made those things kind of impossible – I wrote a book about living with Asperger’s syndrome. The funny thing was that I didn’t do the sums and prepare myself for the thing to be published, but it was. I suddenly become an accidental advocate. I was thrust into a world I hardly understood. Worse still, people I didn’t know seemed to value my opinion about things I felt I didn’t know anything about. I was torn between being excited about my new-found recognition and thinking a sincere and heartfelt ‘what the hell?’ when confronted with yet another thing I had previously been unaware of. I’d tell a room full of autism world folks how I hated discrimination and thought everyone should be able to be as openly Autie as they chose while at the same time worrying whether friends at uni thought I was ‘weird’.

As time went on, I grew in confidence – both as a human and as an autism advocate. Before long I really was a proud and confident advocate who valued and liked myself just as I was. I suddenly started noticing that some people said really inappropriate things to me, either about me or about other autistic people.I was horrified. Had this been going on all my life and I just hadn’t noticed? What was wrong with these people? Things people said that I noticed included such gems as ‘You don’t have to say you’re an Aspie Jeanette. You could pass as ‘normal’, ‘Are you like that lady that thinks like a cow?’ (Presumably they were speaking of Dr Temple Grandin who I’m fairly certain thinks like a person, not a cow!). Other nuggets included ‘You don’t look Autistic’ and ‘can you find a friend for my daughter. She does’t have any friends! ‘ (Said daughter was standing right next to her mum and me at the time. I could only conclude that her mum wasn’t much of a friend.) I came across people who had worked as teachers and thought it was perfectly OK to manhandle young Aspie students to make sure they looked them in the eye, people who saw us as deficient, broken, alien and worthless beings. While some of the quotes above are rather amusing, I don’t entirely mean for you to be amused. I would prefer some horror or disbelief as a response as well.

Put simply, we are different, not less.  I do not see disability when I view myself, I see difference. I suppose it’s not an exclusively autistic issue. People from other ‘disadvantaged’ groups have to deal with all these sorts of prejudices. The thing that worries me most is the level of power and superiority that it denotes. On one end is the concept of use being mentally deficient, less than human, even worthy of death. One the other end there’s pity and paternalism, tokenism and condescension. Both ends of that spectrum are destructive, disrespectful and damaging.

So I suppose I should be glad that I became an accidental advocate back in 2005, because there is so much work to be done. I don’t really want Autism awareness, at least not in isolation. I want autism understanding, respect, value, inclusion, communication. Basically some neurodiversity would make the world a better place for us all.

I constantly remind myself that if I am negatively impacted by discrimination and ignorance, me – a proud Autie who values and likes myself just as i am – how much more negatively will it impact on those who do not have confidence and self-esteem. We all need to work towards making a difference here. If someone says something disrespectful or prejudiced, I know I will be calling them on it.

TEdx pic 8

Me doing my bit to promote neurodiversity 🙂

‘Human Being on the Spectrum’ – reflections

I just got home after attending an Autism conference in Brisbane. The theme was ‘Human being on the spectrum’. It was organised by Asperger Services Australia – an organisation which has been around for 21 years and whose entire staff – including the director – are volunteers. I have spoken at one of their events before.

I love a good Autism conference. I get to hear interesting speakers and catch up with people I don’t see very often. These days I am usually a speaker at these things too.  There are some practical considerations (for example that I have no sense of direction at all and can’t read a map so finding my way to hotels and conference venues can be tricky). The main practical consideration at the conference I attended this week was the weather.  As the concierge at my hotel reliably (and strangely rather enthusiastically) informed me, there was a tropical cyclone whirring around off the Queensland coast. The weather was the backdrop to the event. One of the speakers who I really wanted to see got cut off by floods. It rained the entire time I was in Brisbane and most of the conference delegates arrived each day a little soggy. There was talk amongst interstate attendees of being unable to fly home, but that did not happen for me.

My presentations were about resilience and employment. The resilience one was in the main auditorium. I always have mixed feelings about being in he big room, for while it’s wonderful to stand on stage with your PowerPoint slides projected on a massive scale behind you. if it is a small event (or there is a more popular speaker on at the same time) you may be speaking to a smattering of people in a huge room, which is off-putting. This did not happen to me though and I had a great crowd.

I caught up with some wonderful people – and met some more. I also met my two coauthors for my new book in person. They were as lovely as i expected and I am now even more inspired to get on with writing the book. I caught up with Wenn Lawson, who I was featured in a documentary with in 2010 and is one of my favourite people in the world. He really is a great role model and leader for our community. I hosted a radio show from my hotel room. Conference delegate Berinda Karp and keynote speaker Katharine Annear very kindly participated in the show, which was great.We talked about a range of topics including the responsibility leaders – and conference speakers – have. We were all sitting on the bed in my hotel room, hoping that the hotel WiFi or Skype didn’t give out half way through.

By the time I flew home I was exhausted and overwhelmed – often a response to these things – but it was a wonderful week. It is so good to be among my Autistic peer group and better still to be among my peer group of Autism advocates. It will take me a while to process everything I heard but I am so glad i went. Oh, and other highlights were that  met Graeme Simsion, author of the Rosie Project who signed my copy, Tony Attwood came to my resilience talk (I’m not sure what he thought be he smiled and nodded in the right bits) and I discovered fidget toys.

Here is the podcast of the radio show we did:–jeanettes-autism-show


Me speaking about resilience

Never deny hope – we all deserve a chance

Trigger warning: references to suicide and police violence

Yesterday in Sydney, a young woman was shot dead by police. She was on the Autism spectrum and she was at imminent risk of self-harm or suicide. Presumably the police went to ‘help’ her and ended up ending her life considerably more quickly and effectively than she probably would have. A response which was supposed to protect someone vulnerable ended up with them being dead. I read about three of the comments posted about the news item on social media and came to the conclusion that there are a lot of very uncaring people out there. One comment which stuck in my head read ‘if you don’t want to be shot, obey the law.’ While it beggars belief that anyone would think – let alone write – such a thing, I am not writing this post to talk about idiot trolls on social media. Well not so much at least.

The tragic – and I suspect largely avoidable – incident yesterday really had an impact on me. Not just because I’m an Autism advocate, or a person with Autism or a caring human being who would hope that if someone is suicidal they get help rather than death. No, what really affected me was that some years ago, I was – essentially – quite similar to that young woman. From 1994-1999 my younger self was a criminal, a drug addict and a very unwell person. I spent years wanting to die and did a whole load of very dangerous and stupid things which may well have resulted in my death. Of course they didn’t, but I understand how close I cam to not being here.

I want you to imagine 20-something me – or someone very like her. Picture being on a suburban train and this skinny young girl with bright purple hair hops on the train. She’s talking to herself. She’s jumpy and fidgeting and playing with her hair. She’s wearing a T-shirt and you can see what you’re pretty certain are scars from self-harm. She catches you looking and stares back defiantly. She really doesn’t seem to care what you think. In fact you wonder if she’s actually quite proud of her scars. You think about your own daughter and hope she never ends up like this woman. The girl stinks of cigarettes…no, wait…marijuana. She pulls out a small bottle of tequila and takes a few swigs. You probably want to get as far away from this crazy lady as you possibly can. A couple of bored-looking ticket inspectors get on the train. The purple-haired girl looks anxious for a second, then angry. Apparently she doesn’t have a ticket. It figures, you think. She doesn’t even argue with the inspectors but when they write the fine she screws it up and throws it at their feet.  They escort her off amid swearing and struggling. You’re just glad she’s gone.

You probably wouldn’t expect the purple-haired young Jeanette to do anything worthwhile with her life. If she died, maybe it wouldn’t be such a loss.

However, twenty-something, dope-smoking, alcoholic, self-destructive, authority-hating, unemployable ‘loser’ Jeanette became me. I work full-time and earn more than most. I have a good education. I own property. I even go to church (although not a scary conservative one). I have every outward trapping of conservative, middle-class existence. I also volunteer around 30-40 hours each week of my time to advocate for Autism and write blogs like this. So while I should have dies all those times in the past, and most people who knew me back then may have thought ‘well, she den’t have much of a future’, in fact, in my case they would have been completely wrong. I’m actually a happy and accomplished human being.

So this isn’t really a nice story about how I overcame adversity. I don’t need to write that – it’s already in my autobiography. This story is me trying to come to terms with those haters on the news sites who victimise the victim and see only negativity. Any death – and particularly any suicide or shooting of someone who needed help rather than death – is a complete tragedy and I believe, is avoidable. We do not know the potential of anyone. Even if someone is miserable and drug-addicted and desperate and may seek death, in fact their life can  improve.  I am devastated at the death of any young person in this way and especially one of my Autistic sisters or brothers. My heart goes out to her family and friends and our amazing community that has to deal with death and tragedy perhaps more often than could be the case. And those internet haters…I have no words for them but I suppose they must be in their own kind of negative hell.


You don’t know who she will be. She is precious whatever her path