Trigger warning: allusions to sexual abuse

A while back a number of people wrote letters to their teenage selves in order to achieve a variety of outcomes, mostly based around closure and self-acceptance. I am having a year of hanging out with current and former Government Ministers, CEOs and Executives and Autism world notable folks and academics and I wondered what my teenage self would think about this. (As she was a communist she probably would have been a little surprised!) So I thought I would write my letter a few years after everyone else did theirs. Here goes…

“Dear little me,

You will be surprised to meet your forty-something self. I don’t really look much like you or think much like you. The things I hold dear are vastly different to what you do but I promise you and I am the same person as you. I have your memories, your family, your insecurity and vulnerability. I have your power – it will take you a while to tap into that but it is amazing. Twenty-five years later and you end up happy, well mostly.

Firstly I want to say what a lot of challenges you have faced and got through successfully. You have not led a blameless life – far from it. And you go to some dark places even now. But you manage to overcome all those insecurities and anxieties and be a force for good in the world. You are a socialist now and want to change the word. I can tell you that you do change the world – although in a far different manner to what you might expect. You change the world in the best way there is – not through momentous events and conflict but through connecting with individuals and being a good friend.

You know how sometimes you get very scared and anxious about supernatural things? How you ascribe meaning to coincidences? How sometimes you stay up all night with the light on, terrified the ghosts will come? In some cultures that connection and terror of the supernatural would take you down the path to being a shaman. In our culture it is treated with medication. It is called schizophrenia and some other names. It will be with you for ever I think but it won’t stop you from making a good life for yourself.

The other matter which I know is haunting you more than the ghosts, that is that people don’t like you. I know you want to belong more than anything. I am the only person in your life who knows the main reason you joined the socialist party was to find a peer group which would accept you, unlike the kids at school who mostly hate and abuse you. I know that you changed the spelling of your name and lost your English accent so people at school would like you and that both strategies did not work.  I also know your darkest secret, which you will not speak of for some years, I know what that horrible 35 year-old hippie man did to you. He stole your innocence – my innocence in fact. You need to know that this was not in any way your fault. I am very serious about saying that. You did nothing wrong. He committed a horrible crime. Sadly such men will be in your life for a  long time to come. I wish I could protect you. I can’t but I can tell you that these criminals’ evil behaviour is not your fault. The only blame lies with these men. You will heal and one day you will be able to help others heal too.

I’ll get off that topic and onto something a bit more pleasant. You know how you always get ‘A’s for English? How you love to write and create new worlds. How you love to paint and write poetry. Well, in fact you become an author and gain a Masters degree in Fine Art. One day you will have a show at the Australian Centre for Contemporary Art. Another day you will have a book published and then another…and another. You will reach many thousands of people with your writing and public speaking. Yes, you speak at conferences. You love it too.

This is a tricky thing to tell you about because I know how much you are committed to your socialist beliefs. But as we both know, you are not a true socialist, you just like to spend time with those uni students and their beer and weed and those protests where you get to let out your emotion which you struggle with some much. As you grow older, you have some truly awful experiences. You meet another someone who takes your innocence, your morality. I am ashamed to say you make terrible, terrible choices and end up in various malevolent institutions. You hover over death. You lose your faith and your courage. You are in a shadow world. I so wish I could save your from it. Thankfully you manage to save yourself from it, along with support from your amazing family and your own determination and wisdom. You are so impacted by this shadow world that it gives you a cast iron will to go as far from it as you can. After seven years of aspiration and good choices you join the public service. Seriously, you do! And you love it. You are respected at work, even though you are a bit ‘quirky’. You buy a little apartment and fill it with art – top to bottom! Yes, really, you own property. Someone even said recently that you ahed ‘impeccable taste’.

So as I write to you I am a very different you but I know I am still you. I feel your essence within me. We share the same memories. Take courage, for though your life is filled with terrible things it is also filled with wonder and amazement. You become a respectable member of the community. You have great friends who like you for who you are. You have all your quirks and foibles and things which your high school peers hate so much. But you own them and are a proud woman.

I’ll have to write to you again I think to tell you all about Autism. And Mr Kitty. You will love to know about him.

Go well little me.

Love from You”

I have just turned from a visit to friends and family in country Victoria. It was wonderful. Most of my friends know me as a city person. I moved to Melbourne when I was 17 and then to Canberra when I was 32. I have always been more comfortable in cities – i get lost less often as the streets are generally short and have handy things like names and numbers rater than the ‘RMB 1265′ denoting a royal mail box and corresponding number – that I grew up with. The city is urbane and has coffee shops and not a rural field day or tractor in sight. People in the city are supposed to be more sophisticated…. or something. However my first seventeen years were spent in country areas – firstly Devon and a small village near Cambridge in the UK and then the most beautiful place imaginable in Kergunyah in my teens. Keygunyah is a tiny town which boasted a post office and a swimming hole and  a lot of cows and not much else. I hated it.

As a teenager the country was my enemy. I was isolated, there were no shops or other trappings of civilisation. There was no public transport and anyway I lived about three kilometres up a dirt road which would probably not accommodate a bus. My school was an hours’ bus ride to the north. The bus was filled with knuckle-dragging bullies who delighted in making me feel small and embarrassed. They invariably smelled of BO and cows and had names like Jimmy and Bruce. I endured the hell of this bus ride where nobody ever stood up for me or was even remotely nice to me for six years. As I grew older, I identified with leftish political ideals and social justice. I saw myself as being gay and noticed things like the fact that Aboriginal people were often treated badly and that my school friend Simone who had come to Australia as a refugee from Laos was hated and teased simply for her Asian features and gentle accent. I decided that the city was a better place for a number of reasons. As soon as I was able, I moved to Melbourne to spend the next few years sipping cappuccinos and visiting the Vietnamese restaurants dotted along Victoria Street, Richmond, with my apparently far more sophisticated and decent socialist city friends.

For years I had this idea that the country would never be my home. I looked back on my time in Kergunyah with sadness and equated that beautiful place with all my teenage misery. My parents sold the property in Kergunyah over ten years ago and built themselves a house in what my dad called ‘suburbia’ (a small country town with around 4000 inhabitants, where there are street lights and shops and lots of tourists keeping the economy afloat and having a pleasant impact on house prices for those who own their own). The last time I went to Kergunyah I saw it differently. I felt like I was standing inside a painting. On one side, Mount Murramurambong towered spectacularly above a gap. On the other side the Kiewa Valley lay. You could see the procession of trees lining the riverbank and the mountains rising up on the opposite side. It was stunning. But I still thought the country was not the place for an Autistic advocate, someone who was ‘different’ like me.

My thoughts and opinions about all these things got themselves together and decided to change on the weekend of Australia Day this year. I had travelled to north east Victoria with an advocate friend and colleague to visit my family but also some mutual friends in the Autism world, one of whom was moving into his own place in the same town where I had reluctantly attended high school. The entire weekend was amazing. I got to know people I know much better and met others still who I really like and value. The most amazing thing though was that I made peace with rural Australia.  understood that my life would probably have been just as difficult had I grown up in Melbourne or Sydney. I noticed the beauty and vastness of the country, the silence punctuated only by the lowing of cows and  the occasional bark from Larry the labrador. As if on cue I started to relate to the needs and concerns of rural people – the terror of fires which can start from a tiny spark and destroy homes, livestock, crops and people, the connection to the land when your family has worked there since 1860, the disconnect between city and country thinking. I embraced my rural heritage (most of it in England) and realised that an Autistic person can succeed and be happy in regional and rural areas as much as they can anywhere else.

Some thoughts:

• The only reason I wouldn’t live in a rural area is that I don’t drive a car. Although many towns do have a good bus or taxi service.
• Another consideration around moving to the country is employment, as smaller towns tend to have less employment opportunities. Given that Autistic people can struggle with finding a keeping a job, this may be something to think about. However, there is a counter to this issue in that if you and/or your family are established in the town or area it may be easier to find a job than in the city as many jobs in the country are staffed through word of mouth rather than a competitive recruitment process (although this is not always the case).
• The idea I had as a young person that country areas are more conservative is not necessarily true. The idea that city areas are more ‘progressive’ is also not always true. You will probably find likeminded people everywhere you are and you may also find people you disagree with everywhere too.
• The internet means that you can communicate with people all over the world so living in  a rural area may not be isolating, even if your nearest neighbour is five kilometres away.
• Country areas often live up to their reputation of being welcoming and friendly. However this can also mean that there is gossip and everyone knows about everyone else’s ‘business.’
• Different people have different preferences around where they live For some people the city is the only place they would consider and for others they would never leave the country.  I think I could be happy in both.

The is a difficult and uncomfortable topic but it is close to my heart. It is widely known that Autistic children and adults are more likely to be bullied than many other groups. This has certainly been my experience as I was victimised for much of my first twenty five years and also on a few occasions after that. Bullying left me with very low self-esteem, a lack of faith in myself, trauma and anger— as it tends to do with others as well. I felt like I couldn’t do anything right, I tried desperately to fit in but with no luck. My ‘difference’ was apparent to everyone and for my young and vulnerable self, this  was not a good thing.

As an adult I gained an Autism diagnosis and clinicians helping me told me that many Autistic people experience bullying. From then on I assumed that Autistic people were virtuous and trustworthy but non-Autistic people needed to be treated with care as they could be violent, aggressive and discriminatory. Sadly it’s not quite that simple. As I grew older I discovered that Autistic people are subject to the same sorts of character challenges that everyone else is. So yes, there are Autistic people who are aggressive and discriminatory. Most of the Autistic people I have met and who I know are very kind and thoughtful and hate the very thought of upsetting another person. But unfortunately. along with the many, many kind and considerate and community minded  Auties, there are in fact Autistic bullies. The Autistic bully is a far less common phenomenon than the non-Autistic bully but it is still, as younger people rather aptly put it, ‘a thing.’

[I need to qualify this by saying that Autistic bullies are less common and that I am talking about actual bullying behaviour with the intent to belittle and harass, rather than behaviours which non-Autistic folks can misinterpret, like different body language, apparent ‘rudeness’ etc. Apparent anti-social behaviour by Autistic people – especially children and young people – is often unintentional and certainly not bullying.]

In my life as an Autism advocate I occasionally happen upon a troll on social media who is Autistic. They criticise people and engage in inflammatory conversations filled with insults and put-downs. They belittle others’ messages and launch personal attacks. They complain about others’ presenting style and message. These people can create division in our community and discourage people with a great message to share from saying anything at all.

I am not referring to robust debate or disagreement. I love to have a debate about something I say as it can open up new understandings for myself and others. I am more focussed on trolling and personal attacks which are pretty much the opposite of healthy debate.

I am actually quite afraid of these people who troll and hate. Every time I go to post a blog I worry if I will be shot down in flames and ridiculed. I worry that my motives will be questioned. When I see this trolling it catapults me back to 1987 with the mean girls in my Year 8 class. I feel guilty and embarrassed and think that everyone must hate what I have said. I’m just as likely to take down a post – after posting it in 20 groups – because of one cruel or insulting comment. Now I know part of that reaction is related to my own low self-esteem but part of it I am not responsible for. And victim-blaming is not my favourite activity, even if the victim is just me!

In my mind, this trolling is highly  divisive and can effectively stop some people from having a voice. If you disagree with what I say, please let me know and we can have a discussion. But please don’t insult and ridicule me – or anyone else – online. I’m pretty certain that my words about empowerment and supporting one another and the occasional mention of a little black kitty are hardly worthy of such anger and cruelty. In my mind, it is better to focus on others’ strengths and the useful things they are saying than promoting division and animosity.

I studied fine art at university. I remember going to an exhibition by contemporary artist Barbara Kruger which was an installation of advertising-type signs making commentary about social issues, especially consumerism. I bought a mug at this exhibition which said ‘you want it, you buy it, you forget it’ and ‘we are slaves to the objects around us’ on the other side. There is a home in the popular imagination for this notion – the issue that people want things that once they acquire they are no longer particularly interested in. Socialist philosopher Karl Marx had a name for it: ‘commodity fetishism’. According to the father of socialism (and OK, Herr Marx is maybe not the best source of factual information, but definitely a source of interesting ideas), people ascribe more value to objects than they do to more significant and worthy things (like relationships etc). This commodity fetishism, according to Marx, makes us somehow less human. All fascinating stuff no doubt, but my interest in this topic is around my own attachment to objects as an Autistic person.

Whenever I bring out my Barbara Kruger coffee mug, I always disagree with the sentiment. For me, many of the objects I have gathered actually are important and deeply meaningful. When I buy (or am given) something I really love, I get joy from it from the rest of the time it is in my life. Some of you might have seen me in a documentary, along wth some other very awesome Autistic adults, a few years ago. The documentary is called Alone in a Crowded room. At one point in the film, I show off some of my ‘nice things’, -a sparkly scarf, a little translucent glass ornament, a holographic purse with alternating pictures of butterflies and  flowers and some of the film director’s objects as I hadn’t brought enough of my own. I will admit that I still feel something of a fraud every time I see that sequence in the film because I have betrayed my own objects by pretending the director’s objects were mine….

…and I imagine that sentence might sound odd to a non-autistic person (and actually may sound odd to some autistic people too!). I have a different relationship with objects to the ‘norm’. I ascribe them with life and meaning which others may not. When I was a child, I would never input an easy sum to my calculator in case it thought I was an idiot. I knew logically that the calculator did not have sentience and wouldn’t really care if I entered 1+1, but it still bothered me. As an adult I tend to name my technology. I have had a procession of computer friends -Esmerelda the eMac, Molly the MacBook, Izzy the iPad 2, Stephanie the iPhone 6S and Alastair the MacBook Air to name a few. My devices are friends to me. I talk to them. I’m sure my colleagues at my responsible and quite formal job think I’m a little quirky Purky when I kindly utter words of encouragement to the printer or my PC. A couple of weeks ago my internet was slow at home and I uttered a plaintive and quite genuine cry of ‘why do you hate me Alastair?’ to my laptop.

I know this is probably a bit different but this is the world I inhabit. I also have a mental illness which plays havoc with my perception. One thing I experience a  lot of most of the time is visual hallucinations and disturbances. It can be a perfect storm of weirdness! People in photographs are alive, much like in the world of Harry Potter, I can become terrified that  all the things in my very thing-laden house will come alive and start to harass me or attack me.  I see lots of black cats in my house additional to the actual one and all the ornaments and things seem imbued with life. The main problem with this is that very few other people with my mental illness seem to experience it so it is hard to make myself understood when I access help. I usually manage to deal with it but I spend a lot of my evenings being quite frightened. My idiosyncratic relationship with inanimate things can be problematic but I still choose to have a house which is decorated like a cross between an art gallery, a very busy antique shop and the Spiegeltent!

Like many other Autistic people, I have a genuine closeness to many of the objects in my life. It is not a commodity fetishism-type relationship, as described by Karl Marx or Barbara Kruger in which once the object is attained it loses its value. The meaningful objects in my life  retain their meaning forever.  I find my close relationship with objects can be devastating when the objects break, are stolen or lost. When I was 23 years old my partner at the time stole pretty much every object I owned and left me. Even now there is some regret and sadness. ‘What happened to that painting of the poppies i did in hospital? Why did I only get to use that donna with the purple elephant pattern once? Will I ever find one like it?’ It is odd because while it was indescribably awful to lose all my things it did put it into perspective, even for object-obsessed me. I know that those things are replaceable and if lost it is not really a tragedy. I know that when friends and family members are ‘lost’ it is a far more significant and permanent loss. If my house burned down, by far the worst loss would be my little black kitty and I would probably risk my own safety to save the little furry boy. I’m pretty certain I wouldn’t risk my life to save my Tiffany lamp!. Objects are friends, but friends are friends too and in my mind, while many objects have their own character and value, the human and feline beings in my life have that additional spark of character  – a spirit and soul, that wonderful thing called life.

That’s all I have to say about this and thank you Alastair the MacBook Air for your assistance 🙂

Diagnosis can be a difficult thing to manage. One of the questions I am most often asked when I speak to an audience is ‘when should I tell mu child that are on the autism spectrum?’This always reminds me of my childhood when some children were adopted and their adopted parents knew all along but weren’t sure when to give their child that vital little piece of information about their history. I read a book by one of my favourite authors, my namesake Jeanette Winterson where the young character in her semi autobiographical book Oranges are Not the Only Fruit– which I read when I was about 16 –  found out she was adopted by her biological mother knocking on her door. I remember thinking how odd it would be to discover such a significant part of yourself years after other people diid. For many people, discovering they are Autistic – by whatever means – is a huge, life-changing thing too.

I know adults who were told about their Autism diagnosis in their teens after their parents  got a diagnosis for them at a much younger age, saying how helpful it felt to understand why some of their thoughts, actions and experiences were divergent and more importantly, that many other people occupied the same diagnostic space. I have met adults on the spectrum who had a sibling or other relative diagnosed but whose parents never sought out a diagnosis for them. They then went on to seek out a diagnosis later in life and were relieved when they received it. The decision around whether to seek and then whether to disclose an Autism diagnosis for oneself or one’s child is very personal and individual choice. As with all parenting activities, parents can inadvertently get it very wrong or it can work. Parenting is pretty tricky I think, especially as all children are different. I usually respond to the parents asking me when the best time to disclose a diagnosis to their child that they – the parents themselves – are the best judge of this as they know their child a lot better than I do. It’s hard to parent from a stage with the children in question having never met me and usually being in a  different location!

People respond differently to their diagnosis. Most people I know who gained a diagnosis of Autism  / Asperger syndrome as adults embraced their ‘label’ fairly quickly. It meant they were able to understand why their lives have been so challenging and why there was nothing ‘wrong’ with them, just a difference shared my multitudes of others. For many, giving that difference the name  ‘Autism’ can be liberating and provide an explanation of things they were puzzled about in the past, particularly around social connections and relationships. Autistic adults often embrace their new identity and seek out other adults on the spectrum. Many adults gain a diagnosis shortly after their child is diagnosed. This can lead to closer relationships with children. My own mum has a diagnosis of Autism spectrum condition and it is a good thing.

I have met a few adults whose immediate response to their diagnosis was not a source of joy or relief, however. One of these people is me. I was diagnosed with Asperger syndrome in 1994. I was a prisoner and the diagnosis was almost unheard of at the time. I was told that Autistic women were a very rare thing indeed – one in tens of thousands apparently. This diagnosis probably could have enabled me to make some positive changes and understand m experience in a way which didn’t involved self-hatred or blame. But it didn’t. I was in a space where I was desperate to be accepted and not to be the ‘nerd’ that everyone had hated at school. As a twenty year-old prisoner i was fairly certain I wasn’t a  nerd, so when a nice psychologist came and did an assessment and – to my understanding at the time -told me I had essentially a diagnosis of ‘nerd,’ I rejected it.

I spent years hating that Autistic me, telling myself I wasn’t weird and that I was ‘cool’. I think the key issue for me was that I hated myself. I didn’t accept myself as I was. I would be a social chameleon, trying to be accepted by belonging to different groups or ‘cultures’ (criminals, socialists, drug users etc). It took almost exactly seven years to accept my Aspieness. I was just about to start second year at university, studying for a degree in visual arts. I’d recently had some mental health difficulties resulting in a short stay in hospital. In my social life I had very recently started to realise that people liked me because of who I was rather than my membership of a ‘culture.’ I started to think about my mental illness issues and a thought popped into my mind which said ‘what about that Autism thing?’ I asked my mum to send me the information on my diagnosis – reports and things,. I looked at it and thought ‘that’s me.’

Interestingly, while I accepted the Autism diagnosis I found it hard to discuss it with other people. I knew it was a good thing, but I worried that people would hate me or discriminate against me. It took another three years – and the publication of my autobiography – to be OK with talking to friends about my diagnosis. And now I talk to everyone about it! I talked to 257,000 people about it in documentary a few years ago. I talked to 1300 people (in the same room as me) last November. I have a strong social media presence (or course with a fluid number of viewers over time). Anyway, a fairly large number of people know I’m Autistic and I am very much OK about it. My diagnosis and I are one and the same thing. I am Autistic author, advocate, public speaker, person, sister daughter, auntie, friend, cat lover,  Government official, artist Jeanette. And yes, I put the ‘Autistic’ first, not the ‘Jeanette’ first. This is a choice for me because Autism is such a key part of me.

So we all have our diagnosis journey. Some people are diagnosed and told about their diagnosis at five years old, others diagnosed at five and told at fourteen, others find out when they are sixty-seven. To me it’s about making the diagnosis work for us effectively. For it to be empowering and liberating. To help us be the best us we can be.

I was speaking to a parent of an Autistic child today. She was a lovely woman and this was my first conversation with her about all things Autism. She told me that she went to a few parent groups but then stopped going. I asked her why she stopped going and she said she was worried that the other parents whose kids were more ‘high needs’ than her son would think her and her family undeserving of support due to their child’s apparent lack of challenging behaviours. This made me very sad. I recounted to this woman my experiences as a so-called ‘high functioning’ Autistic child. I told her how I was bullied mercilessly as a school student and how this gave me a sense of alienation and difference. I went on to explain how this sense of difference became all-pervading and I longed to be ‘normal’ but didn’t know how to do it. How as a young adult I was so desperate to belong and be accepted by others that I joined quite terrible peer groups like drug addicts and criminals and this led to me making extremely poor choices and ending up institutionalised, and being very lucky to survive many highly dangerous situations. Yes, I was probably a person who would now be judged as ‘high functioning’ but my support needs were very high too.

This illustrates to me some of the difficulties with functioning labels. There are many issues I have with these sorts classifications, which are listed here:

• People’s needs change. I have a number of friends who are Autistic and started their life with a ‘low functioning’ label. They were brought up in disability group homes and attended specialist schools. However as adults, these friends live independently, work and have tertiary qualifications. Of course this suggests one of two things: either my friends’ needs changed over time or the functioning label was not a very useful indicator of their capabilities, or maybe a little of each. People respond to different situations and may attract different functioning type labels over their life, which suggests that such labels probably don’t mean a  lot in terms of a workable diagnosis.
• The last point  leads on to how the label itself determines how a person and their family see themselves and their capabilities. If you are told your four year old child is a ‘low functioning’ Autistic person and will have high support needs for the rest of their life, this may well be what happens because that is the model that everyone – family, support workers, clinicians, educators and most importantly I think the child themselves – are working within. We may be condemning people to low expectations or being unable to fulfil their potential as people.
• Functioning labels can also be used as a divisive thing by some people in the Autism community. I have been told on a few occasions ‘You can’t speak for my child. You are high functioning.’ (thankfully this doesn’t happen a lot). So apparently we have two Autisms – the high functioning one and the low functioning one and one group doesn’t understand the other. I prefer to support commonality rather than focus on division. And no Autistic advocate speaks on behalf of another Autistic person. We share our experience and knowledge in the hope that others – parents, clinicians, Autistic people, educators etc – will draw some value form our knowledge. I will never say that I speak on behalf of anyone.
• Low functioning labels in particular can be incredibly misleading. Many non-verbal Autistic people are highly intelligent. And many non-verbal people  describe the experience that  even before they had speech or an effective communication device or system, they were observing the world and experiencing things sensitively. I can only imagine what some people must have witnessed in terms of put-downs, negativity and ableism.
• Functioning labels come from the basic premise of some kind of ableism as far as I am concerned. The functioning labels model seems to be based on deviation from a norm. So a non-Autistic person is the yard stick for measuring Autistic capability. Then you have the ‘Aspie’ who seems more ‘normal’ and then the ‘low functioning’ person who is the least ‘normal’ of the three, on the outer edge of capability. I’m sorry, but I am from a perspective of neurodiversity and this horrifies me. What is this ‘normal’ thing? And why am I an other Autistics based in  terms of deviation from this? In my mind, we all have skills and attributes and difference is certainly not ‘less’. I suppose that is my fundamental issue with the functioning labels. They are unhelpful in my mind and set up an arbitrary ‘norm’.

I would prefer it if we looked at people as individuals, who have their own skills and abilities, strengths and challenges. I think the functioning labels  do more harm than good. I would never describe myself as ‘high functioning Autistic’. In fact I don’t think I have met an Autistic person who uses those labels to describe themselves. And I think that is probably the most pertinent point in this blog post.