{for Sylvia}

I just got back form Melbourne where I attended a research academy organised by the Autism Cooperative Research Centre (‘CRC’). I am on a reference group with the CRC and spoke at their participant day in 2014. They have always struck me as an inclusive and respectful organisation which takes cooperation very seriously.  Their work involves  funding research projects on autism and they also co-produce research with autistic and non-autistic peer researchers.

A couple of weeks before the event I started getting anxious. No matter how much I try to deny it or ignore it, I have a significant profile in the Autism community in Australia. What if I started name-dropping or butting in with pointless stories about giving a talk for TEDx or writing books or some other braggy thing? Would I need to somehow prove myself with a room full of Autistic people? What were others’ expectations of the event? Was there any point me doing the academy when I already work the equivalent of two full-time jobs? Was I taking a place someone else should have had?

In fact I didn’t need to worry. When I arrived I was met at the airport by two of the CRC staff and two academy participants who had just flown in too. We talked and got a taxi and my anxiety lessened as I realised it was OK to just be myself.

The interesting thing about this event was that it was Autistic space – meaning that most people were Autistic and that the ‘norms’ were set by us. I have only been in Autistic space like this at three events, including this one, and it has always been sort of hard to describe. The best I can do is to ask you to imagine you are an expatriate living in a country where you had to learn the language and you aren’t very good at languages. The country you live in also has customs which seem odd and even offensive to you but if you question them you are shouted down and judged. Then one day you find a club for expatriates like you. When you go in you feel immediately more relaxed and comfortable. You can speak your first language and practise your customs with no fear of blame. Of course the difficult thing in that analogy – and the real situation of Autistic space – is that you still live in the other country so once you leave the expatriate club you are an uncomfortable  minority once more. Autistic space is where nobody judges and in all three experiences of it I have had, has been almost entirely kind and supportive and not interested in hierarchies or status. It is basically pretty amazing and makes me feel as if I have come home after a long and difficult journey.

I had a couple of helpful epiphanies at the event. One was around the medical model of disability. If you don’t know about his already, there is a medical model of disability and a social model of disability. The medical model is based on diagnosis and deficits and basically ‘fixing’ people. The social model is more based in the concept that what disables people a lot of the time is from a social basis and disability is beyond just medicalisation. Autistic people are often faced with the very deficits-based notion that we are broken and need a fix or cure. I always knew this in terms of external parties reinforcing that thinking and that in turn impacting on autistic  people’s self-worth and identity but I never understood that some Autistic people actually internalised that about themselves. Even when I rejected my diagnosis it was because I thought it validated bullying and prejudice. I have never seen myself as broken on in need of fixing. This understanding helped me to not only understand my own advocacy and how I am happy to talk about my Autism to anyone willing to listen, but also the difficulty those who have internalised that medical model must go through.

In the workshops and sessions at the academy, I felt an overwhelming sense of respect for our opinions from the non-autistic  members of the project team (which was 50/50 Autistic / non-autistic). It was not tokenistic but based in the view that our Autistic perspectives were essential to the work of research on topics related to Autism. At one point we formed groups with researchers and looked at a research question and unpacked  it, sharing our perspectives in a very helpful dialogue. I think everyone involved made connections which will continue beyond  the event. On Sunday we had dinner with CRC Board members and then had a wonderfully enjoyable trivia night with everyone – including the Board.

I made new friends and consolidated existing friendships. The event was so valuable for that reason alone, but there was also some more professional networking done – which I find often overlaps with friendship in my life.

I will recount an anecdote which I think quite neatly sums up how I experienced the event and Autistic space. For the dinner with the Board members I decided to dress up. I don’t do cosplay in the usual sense – inventing a character or avatar and putting together a costume to express that. Instead I sort of cosplay myself. On Sunday I was happy and wanted to make an impression….I wore an orange patterned caftan with different coloured rhinestones on the front, my gold sequin Converse sneakers, lots of shiny jewellery and my orange ringlet wig (think Little Orphan Annie meets Janet Frame in Jane Campion’s ‘An Angel at my Table’). I walked to the dining hall – we were staying on campus at a university. I walked past a couple of students. I’m not good on facial expressions but I could tell the two young women  thought I was a little strange. I didn’t care at all what they thought and embraced my difference. I walked into the dining hall and the CEO from a major organisation greeted me warmly and remarked that I was wearing a new wig which he hadn’t seen before. We discussed a talk I am doing for his organisation and had a good laugh together. I had dinner at a communal table with academy participants, program staff, researchers and a couple of Board members – including an Autistic friend I don’t see often but love catching up with.  I sat there among my peers, colleagues and friends and knew that I am one among many. We have a strong community and incredible potential. I never do ‘us and them’ – instead I try to do ‘bringing along with’. This event was very much in the camp of working together and bringing along with. And while it is probably unlikely that I shall ever spend my whole life in Autistic space, the research academy showed me that we don’t have to always speak the non-autistic language. We can also teach non-autistic people to speak our language, with all the depth and wisdom which comes with it.

The image accompanying this post is me signing a book at a launch event in 2012.I look very happy don’t I? It might surprise you that two days after that image was taken that I was in the psychiatric ward for six weeks with severe depression. Was I putting on a brave face? Actually no. I was unaware that beneath my happiness for signing a new Jeanette book lay a depth of misery which I had simply not noticed. Like many others on the Autism spectrum, I have a condition known as Alexithymia, or emotion blindness. It doesn’t mean I don’t have emotions but that I cannot articulate them and struggle to notice them. In my case I only feel a few emotions and even then only when they are at a heightened state. It means I don’t access what I am feeling unless it is severe and even then I often can’t work out what the feeling is, just that it is unpleasant.

In the six week hospital stay after my book signing event, I remember sitting in the hospital psychologist’s room and crying. The psychologist told me I was really depressed and I denied it, despite the fact that everyone in the place could tell I was depressed. For a person with alexithymia, being asked by a mental health worker – or anyone for that matter – ‘how do you feel?’ is about as helpful as being asked what the temperature on Venus is at the moment. It is almost impossible to respond to that question in the way it was intended.

Autistic people experience alexithymia at higher rates than the non-autistic operation. It can compound existing difficulties. It can mean:

• Autistic people being unaware that they need to seek help
• People not being able to articulate what they are experiencing because they are unaware of it themselves. This can lead to mental illness conditions or symptoms getting very serious before anyone knows
• Autistic people’s level of distress being misjudged and treatment in mental health services not being appropriate for the person. This can include being denied treatment  as the person does not seem particularly distressed or speaks about their experience and feelings in an atypical or unexpected way
• Clinicians and support workers having no idea of what their client is going through and treatment being unhelpful as a result
• Making it difficult for Autistic people to understand their own mind and identify when they need to seek help
• Compounding stereotypes of Autistic people being emotionless or ‘cold’.
• Many Autistic people are taught small talk type responses to questions. Often they may learn that when someone asks them ‘how are you?’ or ‘How do you feel?’ then the answer should be ‘good’ or ‘well, thank you.’ This can be an issue when someone has alexithymia and they think the ‘right’ answer is ‘good’ even if they have some awareness they are struggling.

Recently I have become aware of my alexithymia and what it means. I do not feel a lot of emotional response to things. The most common emotion I am aware of is stress and from that overload.I can tell a meltdown is coming on when the stress turns into anger. I don’t feel much but I observe how I am acting: avoiding other people for fear of yelling at a them, not going online for similar reasons, a tension in my forehead and a sensation of adrenaline in my head. This means that after many years of being at the mercy of overload, I now get more of a chance to leave the situation and take time to de-escalate.

I am also getting better with understanding my mood, not so much by feel but by what I observe myself to be doing. If I am up at 3 am on a work night, talking loudly to myself and Mr Kitty and writing very quickly – and very well, then that is a fair indication I am elevated or getting hypomanic. Once I know this I can physically slow myself down by going to bed and listening to classical music. Conversely, I can tell I am having a depressed mood when my house is messy and I cant imagine  being able to clean it. When this happens I know I can take action to help improve my mood – do something productive or energetic like having shower and going to work when I don’t really want to or writing. With both the elevated and depressed moods I also rely on friends and family to assist by telling me. If my mum says ‘Jeanette your mood is high as a kite!’ I thank her because she is a more objective observer than me and her observation is helpful.

If someone asks me ‘how do you feel?’ I usually can’t answer but I can work it out with some strategies. It is important to be aware of alexithymia and Autistic people, especially for parents of younger kids and teens. There are strategies to manage it but often someone isn’t aware that they are not aware of their emotions.It is a tricky one and certainly deserving of more information than exists at the moment.

When I was fifteen I went from being a fundamentalist Christian one week to a revolutionary socialist the next. This is probably quite an unusual and swift about face in terms of beliefs and identity. I didn’t do it because I was confused about who I was. I did it to be accepted and have a peer group to belong to. I was at school some years before the Asperger’s diagnosis became available where I lived so had gone through school as the loner, the ‘weirdo’, the target of apparently every single bully in the place. While as a small child I was confident and liked myself, years of bullying and harassment at school taught me I was stupid, worthless, ugly and everything else. I thought it had to be true or why would so many people say it about me? I didn’t think anyone would want me to be their friend with my evidently deficient personality so I joined a peer group where all I had to do was toe the party line and agree with what everyone else said. To this purpose, a group with clearly described and stated  beliefs was quite easy to join – hence the revolutionary socialists. (I was brought up in the Christian group so that was sort of my default peer group or ‘culture’ from which I joined the socialists.) In order to be accepted with the socialists – or anyone really – I took on a persona which fitted with their views. I was like an actor studying a role. I observed my new peer group,saw what they did and how they spoke and took it on as part of me. I had in fact ben doing tis at high school for some time already. In school I had tried to be inconspicuous and avoid detection but it was about was effective as trying to hold back the tide!

I left home at 17 and became an independent adult. I worked so I took on the role of ‘good employee’ when at work. I had the odd experience of being probably the only revolutionary socialist ever to win Worker of the Month! When I was at work I put on my diligent employee ‘hat’ and at protests I was radical Jeanette complain gin about ‘the bosses’ and saying rude things about politicians.

It is probably evident to you that this would have affected my sense of self, my identity. It did but teenagers are not always the most self reflective of people and I simply didn’t see it. I was unaware of this part of me. It became second nature.  ada[ted to whatever setting I was in. It was like putting a chameleon on a rainbow t-shirt!

All this was unhealthy but it got worse. Regular readers of my various things will know I spent time in prison in my twenties I am not going into detail about hat here. It is easy enough to find information about that  and a blog post needs to be reasonably short! Anyway the day I went to prison I put my acting skills to effect. This was a world I was only vaguely aware of and I wanted to ensure I didn’t get anything ‘wrong; socially. I realised as soon as I got there that this was essentially high school but the bullies would do more than call you names if you messed up. My effectiveness at turning from middle class leftie student to criminal in a space of days, and the fact that in the over three years I was there that I was never physically assaulted by the other women, amazes me. I always talk about doing what works and in that situation I somehow did what worked for me to stay safe (at least from other people). This was great in terms of my personal safety in a very dangerous place but in terms of my identity it was a disaster. I took on my criminal role so effectively it took some years to move past it. My act even fooled me!

In 2000 I found myself wanting an end to the world I knew as a criminal. I hated who I was – negative violent, self-destructive, disrespectful of others, socially devalued and alienated form all that was good. I had the amazing privilege to get to attend a residential therapy program which, while its target audience was those wth a misdiagnosis I had acquired, was in fact very helpful. While doing this course I realised I didn’t know who I was and didn’t really like what I saw in terms of my behaviour and attitudes, I decided to change.

I am someone who came from a dark place and was filled with remorse and shame at who I had been. I had a blank canvas. I got to decide who I would. be. A scary and empowering proposition. As soon as I accepted my Autism diagnosis I started heading in the right direction. I had never accepted that little ‘A’; word and I think that was because I was not comfortable being myself. Autism to me was like an insult, something not to mention in polite company. My new self was comfortable with her Autism – although not so much as I am now.

Over the course of a few years I built my new ‘me.’ It didn’t mean I stopped taking on mannerisms of people around me. One of my public housing neighbours thought I was ‘fake’ because he heard me talking to one of my university lecturers on the phone and my speech and use of language were different I was in fact unaware of that occurring – chameleons apparently take some time to change back to there regional green! These days I have a very strong sense of who I am. I don;t do so much ‘acting’ and think if someone doesn’t like me because I’m a bit quirky that it is their loss. Identity can be hard but I ended up with a ‘me’ that I quite like.

Here are some thoughts ardour this issue more generally

• While the social chameleon is often seen as a descriptor of the female Autistic ‘type’ that is not always the case. We need to be really careful when using those Autism and gender ‘types’. Gender identity is not just sis gender male and female. Gender is a much more complex and nuanced thing than just male and female. A large percentage of Autistic people identify as trans, non-binary and other genders which makes a static notion of male or camel Autistic ‘types’ quite problematic.
• Often people ‘acting’ do not realise they are doing it.
• While it can be a useful way of avoiding being singled out for unwanted negative attention, ‘acting’ can come at the cost of a sense of identity to varying degrees.
• For a lot of Autistic people identity is complicated by a number of factors such as how they view their Autism, the peer group they mix with or their other, intersectional identities, such as Aboriginally or sexuality.
• Many Autistic people feel a great sense of belonging within their own Autistic community. For quite a few of us this happens after a diagnosis in adulthood.

A place to call home has been a challenge for me for a number of reasons over the past 25 years or so. I was brought up in my parents lovely home in England and then in rural Victoria when I was a teenager. It was stunningly beautiful place. Naturally I hated it. This was not due to me lacking an aesthetic, it was more about what the country meant to me – bigotry, narrow mindedness and bullying. Needless to say I moved out straight after high school.

At 17 I moved in with a socialist comrade in Melbourne and got a job. At that point I had no Asperger’s diagnosis and these things seemed to be what one did. Share houses were confusing. What worked in my parents’ house did not work in a shared house. Over a two year period  I lived in five different places.

When I just turned twenty I met some one who changed my life in a very negative way – ‘Dave’ the violent criminal. That wasn’t how he presented himself to me and by the time my trusting, naive self had worked out he was very bad news, I was in far too deep. Regrettably I was too scared to leave him and so went along with some of his crimes and went to prison. I went through five years of primary and secondary homelessness, plots of stays in prison and the psych ward. I lost any confidence I may have had, hated myself. I figured my life would be as it was – institutionalised, insecure and scary.

What changed? I never truly know the moment it happened. My last prison sentence ended on 5 February 2000. One of the officers said he bet me a carton of cigarettes that I would be back within a month (helpful,  know!!) From prison I went to a live in therapy service and there things changed.I was treated as an equal, worthy human being for the first time in forever. My parents who had always been supportive were so happy and encouraging. It all combined to change how I saw myself in the world.

Sadly poverty and disadvantage don’t magically disappear just because you decide to change your life. Housing was  a huge issue. I went through several years of having no choice in where I lived. Some of the places were unpleasant, some were downright dangerous. I ended up being assessed as the top priority category for public housing as I had lived in over forty addresses over the preceding few years, I don’t remember all of them and none of the addresses. It was like I was a little lost ghost floating through unpleasant boarding houses and supported accommodation. My last supported housing place was in lager block of public housing flats. As a priority list tenant I had to accept the first property I was given. You have no idea how disappointed I was when I saw the tiny concrete box I had to live in. There was constant damp actually running down the walls. All my art was ruined. I soon gained a scary stalker – a woman who gave me no peace and who was a violent alcoholic.

What I’ve missed here is what I was doing to change this. I was an aspirational Jeanette, going to university to gain a degree and hopefully score a graduate job if any company would have for me. I sat in my bedroom with my slightly broken desk and looked longingly at real estate online. For some reason I thought i would buy a flat for $200,000. I had nothing to base that on.  It was odd.

There is a great mental health saying that ‘you alone can do it, but you cant do it alone.’ Thankfully I was not alone. I had my parents always there and in 2004 I met someone whose influence I can realistically say resulted in everything I have now. She was my resplendently wonderful mentor. You will know her perhaps and know that she is no longer with us here which is hard for me to write, Her name was Polly but I knew her then as Donna Williams. Polly suggested I write  my life story which I did. I will be grateful every day from now to eternity. The book was published. Within a year of its release I  was offered a graduate job in the Australian Public Service. I moved to Canberra and started a new life, including living in a very lovely rental property which I could scarcely believe.

The rental came with a difficult housemate. While the house was wonderful, the housemate was less so. I was miserable there within a short space of time and oddly surprised that middle class people could be controlling!  As soon as I had a minuscule deposit saved I bought the cheapest apartment I could which was near public transport (as I don’t drive). I was frightened for the first few weeks. I was alone. I had lived by myself in the past but there were away neighbours or friends nearby, Here it was just me. Because I rushed to buy my flat and it was the only one I could afford I saw it as a compromise. As with many older houses there were maintenance issues. The worst was the shower which leaked and I had to replace. This was a descent into darkness for me. My anxiety was off the scale and I looked at every inch of my flat expecting it to collapse at any moment. I genuinely wanted to live at work and sleep under my desk! If I went away overnight I would expect to come back and find my house robbed, burned down or somehow gone.

My anxiety, as can unfortunately happen for me, turned into psychosis and I spent terrifying months communing with ghosts in a sort of waking nightmare. By the time I got help it was very late and I suffered for some years. I hated my flat and felt it was my enemy,

Then something happened which was as much a catalyst as any of the main change points in my life, A young black cat who I called Mr Ronnie and not long after Mr Kitty, came to live with me, Within a few months my flat seemed a lot more friendly. I came home to a friendly purring kitty person, delighted at my existence and the promise of cat food and cuddles. I tentatively started to branch out with the art and hung as many visually interesting things as I could everywhere there was a space. My house gained the name ’Whimsy Manor’ which has kind of stuck. And today was another of the transition points, at least in terms of my thinking – I love my home, I really enjoy being here. It is a reflection of me. I finally came home. I have within me security and pride in my space. I would never have thought that possible to have a home where I am comfortable and belong. One very grateful Jeanette here. “Welcome to Whimsy Manor”

A corner of Whimsy Manor complete with Mr Kitty

Generally, if you use the term ‘suffer from autism’ a lot of Autistic people – myself among them – will react negatively. The idea that Autism of necessity causes suffering doesn’t quite align with ideas of Autistic self-advocacy ad neurodiversity. The other day a colleague asked me the question which is the title of the piece: ‘Do women with Autism suffer more than men?’ I get asked a lot of odd questions from neurotypical folks who I understand do not share my detailed and nuanced understanding of all things autism – I mean, why would they? So while my instinct in relation to this question was to get into argument mode, in fact I found myself stepping back and trying to understand there the question came from and what information would be useful to convey in response.

I answered my colleague as best I could, trying to convey the Autism is a different approach and not a tragedy. But the question got me thinking about autism and suffering, not in an ableist sense which might suggest parents of autistic children should just give up on their child now, or the idea that if autistic people do not behave or communicate in the way neurotypical do it must be some ind of tragic failing. Instead I turned it in on my own experience of forty-two years as an Autistic person. Do I ‘suffer?’ If so how? Does Autism itself result in suffering or is it something added by others who have no understanding of me or my autism?

These are some of the conclusions I reached:

• My autism is neither negative nor positive in any absolute sense. It is simply an attribute. The perceived negatives and positives around my autism are things which are strongly influenced by the responses of others to me. In its essential state my experience of face blindness (which while not exclusive to Autistics is experienced by a lot of us) is neither here nor there. I can’t remember faces and I can’t remember the ISBN numbers for my books. On paper these are both things I simply can’t remember but in a world full of people who expect me to remember their name and their face, then face blindness becomes a negative. It also makes me anxious around seeing people and worrying I will not recognise them and be ostracised for being considered weird or highly rude. What makes my inability to recognise most faces a deficit is that it is different form most other people, and any suffering attached relates to difference between others and me  rather than an innate flaw.
• Before Is started school I was confident. I liked myself and thought I was a good person. Thirteen years of being bullied and excluded in places where education was supposed to occur left me not only lacking confidence but also filled with negativity and self-hatred. I still suffer from the insecurity and anxiety when I am around groups of  school children, over twenty-five years after I finished school. I didn’t do anything ‘wrong’ at school but I was singled out as being different and I definitely suffered as a result.
• I am naive. As a teen and young adult this was dangerous. My naivety was not a deficit in the scheme of things and the only reason I suffered from it, and suffered greatly, was that predatory people took advantage of me.
• I am a perfectionist. There is certainly suffering within that. But dig beneath the surface of my perfectionism and it comes fro a fear of failing after I lived through high expectations as a child. Perfectionism for me also came  from a place of needing to prove myself in a world which evidently didn’t think much of me. It was  also a way of controlling the more unpredictable nature of the world and those inhabiting it. If I could control how well I did on an exam it seemed to help me address that uncertainty around the other things going on in my life.
• I have spent much of my life high anxious and fearing things – the supernatural, fire, nuclear war and severe phobias like spiders and unaccompanied dogs. Fear has been a constant, unwanted  companion my whole life. My first memory is of a recurring nightmare and in my childhood I spent hours each week praying to God not to have a nightmare. The unpredictable nature of my nighttime brain was almost as horrifying to me as  the nightmares it could produce. As I went through childhood I was given messages from all sorts of places that my fears were meaningless and I was being annoying. ‘The spider won’t hurt you Jeanette.’ ‘Don’t be silly ghosts aren’t real. You’ve been watching too many scary movies.’ those sorts of things. I found that having my anxieties and fears invalidated made them considerably worse as I felt I had to manage them all alone. After a lot of adults dismissing my anxieties an fears I gave up telling anyone about them. This contributed to an unhelpful attitude towards seeking help that I still have today. Had adults understood the nature of my fear they might have helped me manage it rather than being dismissive.

I’m sure you have noticed something among these ‘sufferings’ related in a greater or lesser degree to my autism. They were either created or exacerbated by the actions and words of people who wanted to take advantage of me, hurt me or just plain didn’t understand my approach to life.

There is a flip side to this rate negative picture of the world: If you look at my own life and the suffering involved, consider what might have happened if bullying had been effectively tackled or if predatory people hadn’t abused and damaged me. A world where I felt confident enough about myself to not be bothered by failing at something or needing to be a perfectionist? I believe that world to be possible and it is the focus of a lot of my advocacy to help create a supportive world where Autistic people do not have to bear this huge load of discrimination, dismissiveness and invalidation. Most of the suffering we experience as Autistic people navigating the social world can be seen as  preventable. To address it maybe we can widely promote the notion that our Autistic different is not less, help Autistic people to value themselves and fight discrimination with pride and knowledge and to encourage the structures in society to be Autism competent and confident. Suffering for Autistic people is far from inevitable. Yep, let’s do the changing the world thing.