Unlikely journey: How I got from woeful to wonderful work

I spent my day at work interviewing for entry level positions at my workplace. It was my first time on an interview panel at my workplace and it brought up a lot of memories and feelings. I joined the department through a similar process myself over ten years ago. This is the back story to my becoming a professional corporate suit-wearing Jeanette which will hopefully touch on some useful thoughts and strategies around employment and life more broadly….

In late 2000 I was living in supported accommodation for young people with serious mental illness. I have a  schizophrenia diagnosis in addition to my autism one. I was delighted to live there as it was a step up form a dingy boarding house for homeless women and before that prison. As a result of my naivety and inability to spot dangerous people, coupled with trauma, self hatred and anger at everything, I spent the time between 1994 and 2000 in a hell of prison, drugs and mental illness. My concept of the future was the coming Thursday. I was self-destructive, violent and only focussed on negative things. I was probably not somebody you would like to know or to be.

By the time I got to the  accomodation for people with mental illness I was in an odd sort of transitional phase. I wanted positive things but was unsure how to get them. I remember clearly sitting in the room where the little gold pay phone was after finishing a conversation with my mum. ‘I want to be ordinary!’ I thought. What I meant by ordinary was to have an education, a professional job, a mortgage and a suit. My focus had evidently shifted from negative to positive. I told nobody of my plan, thinking they would ridicule me or respond negatively. I was accepted into university and started my bachelor of fine arts in March 2001.

I was an engaged and successful student My first semester results featured mostly high distinctions and distinctions. I wondered if maybe I could get a job if I was doing so well at university. A friend who worked in restaurant got me a job trial as a dishwasher. I was so proud to be employed even for two evenings a week. I passed the trial and soon had regular hours. I started to notice something though – every time I went to work I would be anxious. The anxiety increased with each shift. I would repeat song lyrics in my mind endlessly at work.   I thought if I made a mistake the restaurant would go out of business. Soon the anxiety was with me everywhere I went, whatever I was doing. Nothing would relax me. I did not realise how damaging this constant high anxiety was but after just a few weeks I was seriously unwell wiht psychosis, went to hospital, had to quit the kitchen job and take a special consideration to ensure I could stay at university. My reflection now is that the most telling thing about that series of events was that not once did I think ‘I will never be able to work.’ Instead I thought ‘I can’t work now.’

I spent a couple of years desperate to work but still too anxious to try. When I felt ready to work I took on a volunteer job and worked up from there. I now give a lot of presentations on resilience and I would describe my approach to finding meaningful work as putting in controlled challenges to build my employment resilience.

I worked a few hours at a tiny business I had editing videos for colleagues at art school and I had a job a couple of days a week collecting coin donations for the AIDS Trust. Then something happened which changed everything in my life. I now refer to it as my point of no return. I met the late, and wonderful autistic author Donna Williams / Polly Samuel at a course in late 2004. I was in between completing my honours and commencing my masters degree and the course was through an autism employment service. The qualification would enable us to speak at schools. At that point I didn’t know much about the autism community. I didn’t know that  Donna was a highly respected author and role model in the autism community but we got along very well and she become my mentor. With her support I wrote my life story – urgently over a four week period. For me it was catharsis. It was accepted for publication and my life changed. The biggest difference was in my self confidence and sense of self worth. An author was an exceptionally valuable role to have, especially as I loved reading and books and authors had been my ‘friends’ through horror and often friendless years at school.

Three months after the book came out I decided to apply for my professional ‘ordinary’ job. I looked at some online career sites and found two jobs I thought I could do – one in the Victorian Public Service and the other in the Commonwealth Public Service. Pretty much everyone I knew – including my psychiatrist – told me I couldn’t do it for a variety of reasons. I had to supply some additional information due to my unpleasant personal history and the poor choices which came with it. This meant I had to wait a little longer to find out the outcome of my application. In the past that awful anxiety would have taken hold and broken me but I had built some resilience and self confidence,

When I found out my application had been successful I was delighted. At this point I was living in quite a depressing public housing estate with a stalker living upstairs from me and making my life awful. The whole place had a hopeless, ‘end of the line’ sort of feel. Even though I worked a little I was unable to afford a rental on my own. I needed a full time job. Because my exiting new job was in another state I could leave the stalker and the misery she caused behind.

When I started my job:

  • I did not know one person in the  city I moved to
  • Almost all the other graduates in my workplace had academic backgrounds in economics, law or international relations. I had a Masters of Fine Art
  • Almost all the other graduates were in their early twenties. I was 32,
  • I had never worked full-time and worried I wouldn’t have the physical stamina to do it
  • I had never used Excel. When I explained to my supervisor I couldn’t use it I thought he would send me back to Melbourne . He sent me to an Excel course instead. I am now known for my ‘big spreadsheets’
  • I thought I was the luckiest girl in the world to the such an amazing job. I still do.
  • I walked into the big swanky shopping centre in the middle of town and thought “Nobody’s going to be mean because I am poor’ closely followed by ‘Yay! I can buy nice things!!’
  • I didn’t fully realise what an amazing an unusual opportunity I had.

I now reflect on a few interesting points in this story

  • My determination and positive view that I could achieve played a big part in how I got to here. I didn’t have a lot of self doubt along my journey
  • Things could have gone one way or the other many times, It was not inevitable that my future should have turned out as positively as it did. There were thousands of decision points
  • I was aspirational. I still am. An aspiration is like staking a claim on the future. It is an anchor point.
  • I have never wanted or had a ‘dream job’. I worry when people talk about very specific goals because they are much harder to attain, with a higher chance of disappointment. And in life, focusing only these disappointments can lead you down some unpleasant paths
  • If you find a good mentor which is willing to share their time and energy, that is a wonderful thing. Mentors and roles models are a really important part of my life and I greatly appreciate their work and support.

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Thoughts on Intersectionality, inclusion, privilege and unconscious bias

I was in a conversation today discussing unconscious bias. It was made particularly interesting – and somewhat disappointing – when someone said ‘I mean I get jealous of the things Indigenous people get…’ I did call her on it, albeit gently. I told her that as an Autistic person with a mental illness there were some things I ‘got’ as well but it was to redress imbalance in society and barriers to participation and inclusion which people face. I pointed out that a lot of that is perception and misunderstanding of how services work and even so, she probably wouldn’t want to have the reasons to be eligible to ‘get’ things which Aboriginal and Torres Strait Islander peoples do – intergenerational trauma, dispossession, the discrepancies in life expectancy and domains like employment, physical and mental health, as well as bigotry and discrimination.  She was saying what she thought at least but it got me thinking about these kinds of things.

I think I’m just going to go with a paragraph or two on each of the topics in the title and unpack them a bit, at least to my own understanding.

So…..

Intersectionality

I will describe this in two ways.  The first is in relation to a conversation I had online a while back with an Autistic man in the US. He was complaining because apparently some ‘feminist’ had challenged him on the fact that he had twelve white male admins on his Autism advocacy group. The man wrote on social media for all to see ‘Autism has no gender…’ I was appalled and raced home to dash off a speedy blog post which I think was titled ‘Autism has a race and a gender and a sexuality and a class….’ Ad what I was writing about was intersectionality.

What intersectionality is all about is the idea that people experience different kinds of disadvantage and discrimination. As an Autistic woman with schizophrenia who has a history of institutionalisation  and socio-economic disadvantage who identifies as somewhere along the non-binary gender spectrum, I have a number of lenses of difference and potential for disadvantage.

Essentially discrimination and disadvantage can be compounded and exacerbated by belonging to different intersectional ‘groups’, as can our experience of the world and how we present to others. This is a very impotent concept, particularly for people who belong to intersectional groups. However it is a vitally important concept for everyone to understand – our families, friends and colleagues, organisations providing services to us, educators, employers, clinicians and so forth. If people in our lives don’t understand intersectionality it can result in the kinds of disadvantage we try to avoid. This is not just a concept which people facing disadvantage need to know about it. Everyone needs to know about it or those disadvantages, prejudices, micro aggressions, exclusions and service failures will just continue and so many people will struggle to lead fulfilled lives where they are respected, understood and included.

Inclusion

I think everyone has an idea of what constitutes inclusion. Inclusion is tied up with the concept of  diversity. Many people think it is a sort of nebulous thing where everyone is nice to each other…. Not quite. Inclusion can be seen as a radical concept. The opposite to inclusion is exclusion. I see this everywhere as an Autism advocate – issues in services and programs, assumptions and prejudice in all sorts of places where it shouldn’t be. Advocacy and activism challenge this sort of thing by promoting inclusion. Inclusion is on one level about ‘doing alongside’, in consultation and collaboration with, and not ‘doing for’. I think that inclusion is best driven by the people who are excluded. Inclusion can be challenging and uncomfortable but through that, understanding and acceptance can emerge.

One thing to be aware of is that people who face disadvantage are not necessarily inclusive on all issues. I sometimes meet people who seem to think diversity stops at whatever disadvantage they themselves have. I have seem disabled people with apparently  great disability politics show a lack of respect for other groups. Tying in with intersectionality, I think it is vital that those of us who are in one or other potentially disadvantaged group to understand and respect the needs of other groups, otherwise I tend to think ‘what’s the point?’ I decided many years ago that I was singled out and abused because I was ‘different’ so I have a responsibility to support others with ‘differences’ – whatever those may be.

Privilege

This is a tricky one which is quite often misunderstood. There a number of different sorts of privilege – a typical one is wealth.  Many people identify White privilege and sis gender, male heterosexual privilege. However the tricky part is that people can belong to a disadvantaged  group at the same time as being privileged in another area. That US Autism group admin who thought Autism had no gender would in my mind at least, fall quite neatly into male privilege despite being Autistic. But it gets more complex. Privilege is not in and of itself a bad thing. The issue tends to occur where there is no awareness of privilege by the person who has it. In my case, despite living in poverty for most of my adult life, I am now a well-paid professional who owns property. I consider myself very privileged in terms of socio-economic advantage. However I am always aware that I have this privilege and keep it in mind when talking to and working with people who are socio-economically disadvantaged. Hopefully there will be no ‘Let them eat cake!’ from Jeanette.

So in essence, privilege is inevitable for some people but if they are aware of it and make allowances and learn the perspectives of others who are not privileged it is much less of a problem.

Unconscious bias

This one is a tricky thing indeed. It refers to people being biased or bigoted but being unaware that is the case. A statement like ‘Even autistic people can be taught social skills so they can communicate properly’ demonstrates some pretty significant unconscious bias, but I bet if you challenged the (in this case imaginary) person who said it, they may struggle to identify what the issue was.

Addressing unconscious bias is often difficult as calling the person on it can backfire if they genuinely can’t see what the issue is. More wholistic interventions to change thinking and understanding around autism (or whichever attribute the bias relates to) can be helpful. We are actually seeing this a little in messaging around autism.

When I started doing advocacy  in 2005 there was a huge amount of unconscious and some deliberate bias, particularly paternalism – in every forum I attended. The idea of Autistic people being involved in the design and delivery of autism services and events was a long way off. So while things are for from perfect nowadays, I see less unconscious bias form non-autistic people than I did in the past. And the thing which is working to challenge that unconscious bias is advocacy and activism being driven by Autistic people ourselves. I think that holds true for other groups: addressing overt and unconscious bias is best driven by the people directly impacted who have first hand knowledge and investment in the issues. I recognise as well that there are some wonderful neurotypical allies who also have a strong investment in empowerment – usually as partners, parents or children of Autistic people. It is nice to view through twelve years of hindsight that things have improved. We still have a huge journey to travel but I do hope one day to realise my dream of being completely redundant as an advocate because I”m not longer needed (at which point I will switch to mental health advocacy which needs a lot of attention!)

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An adventure in non-autistic space: Why I love speaking to new a audience

A few weeks ago I logged on to my laptop and saw an email from an unknown person. The subject line said ‘letter for award’. Given that I wasn’t a finalist for any awards I was a little intrigued. I opened it and found out that Toastmasters District 70 was awarding me with a Communication and Leadership award. The District 70 Director selected me for the award after seeing me give a talk a few years ago and then doing some Googling….and there does tend to be quite a lot of me on the internet at the moment!

The awards ceremony was in Western Sydney. It seemed such an interesting experience to receive an award from an organisation I only knew of peripherally and to to have a night out – a proper adventure I thought, so I agreed to go along. I was asked to give a thirty minute presentation on my life story.

I reflected that the weekend prior I had been in Melbourne at a peer research workshop for the Autism Cooperative Research Centre with predominantly autistic attendees. It was ‘Autistic space’ and quite wonderful. I could be exactly myself as could everyone else. I thought that the Toastmasters awards night dinner might be the opposite of this – a scary notion of ‘neurotypical space plus one Autistic’.  Plus I didn’t know anyone who would be there. Even the person who gave me the award was someone who knew me from being in the audience at one of my talks and not someone I knew well.

I got the bus to Sydney and a cab to the venue. It was one of those huge rugby league clubs in suburban Sydney. I signed in as a guest and found the function room the dinner was in. I introduced myself to the woman outside the room. ’Hi I’m Jeanette, the guest speaker.’ She advised me matter of factly that they were setting up and I should wait outside. I  was a little surprised but figured I wouldn’t be a lot of help in setting up the room!  Soon afterwards two of the other people attending the event turned up. I got a very warm hello and conversation. Then the incoming district Director turned up and introduced himself and said how much he was looking forward to my talk. The woman who selected me for the award arrived and we went and got coffee, only to be met by two of the other Toastmasters. I’m not sure what demographic I had expected to be there but I was surprised by the diversity the group. It was very friendly and everyone knew each other. I felt like I had been welcomed to someone’s family dinner. In fact I have never been in a friendlier room full of complete strangers. The sound people miking me up were lovely and one of them was a woman and there was a curtain so that I could maintain my dignity – such as it is – when dropping the battery pack for the mic down my top and attaching it to my belt.

I was actually nervous about giving my talk. Not so much around talking to a room full of people – I do that all the time. I was anxious about the content of my talk. This often happens when I do the life story talk with non-Autism world people. What if they all just judged me and gave me evil looks and didn’t talk to me afterwards because of my poor choices and abject lifestyle in my twenties? Then I remembered that the main value of my story is how what I do now exists in relation to my difficult past. After my talk I got lots of compliments including from someone staying at the same hotel as me who told me how good my speech was as I ate breakfast! Mine was certainly not the only award as most of the people in the room got awards for their good work as leaders in the organisation. I am very happy I decided to go to Sydney, collect an award and meet some warm, inviting people.

But this is not just a nice story about me getting an award and meeting lovely people.  I think the key point of interest in this story is the idea of Autistic advocates and individuals engaging with a mostly non-autistic audience and one which has little experience or understanding around Autism. I’ll have a go at unpacking them. Here goes…

  • Speaking to audiences who know very little about Autism makes me feel wonderful because I am spreading the word and introducing them to my own Autistic reality and broader Autistic experience and thinking around neurodiversity which may well dispel or challenge stereotypes and assumptions. I think that is quite a worthwhile thing  do, even if it can be little bit nerve wracking!
  • As Autistics we can expect non-autistic people to all be judgmental or hostile. This can mean we approach new situations with this thinking. Many of have experienced bullying and bigotry so this is understandable.  But it is not always the intention of others to be hostile or rude, and ignorance – which can be often be addressed without too much effort – can be confused with outright bigotry.
  • I do speak at quite a few non-autism world events, It is challenging as many people have some unhelpful thinking but the beauty of me speaking in these forums is that I can start to address that unhelpful thinking. I would much rather people listen to me or another Autistic person talking about Autism than someone who shares their unhelpful thinking, This does mean  I often feel like I am ‘taking one for the team’ but it also allows me the opportunity to support people to change their thinking or see the world in a more inclusive way.
  • Outward hostility from non-autistic people at events is unusual in my experience. Often what happens is that someone comes out with some offensive statement  and understandably I get annoyed and respond in the heat of the moment. This usually means I ‘lose’ that person and have no chance of engaging them in the future. If a person’s statements were from hostility and bigotry, anger is definitely warranted, but what if they were simply ignorant and repeating the views of their parents etc? I know autistic people who are ableist against themselves because of internalising societal and parental ableism. Sometimes thinking and attitudes are more complex than they first seem.

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A rare visit to Autistic space

{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.

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Please don’t ask me ‘How do you feel?’ ‘Emotion blindness’ and Autism

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.

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When I was a chameleon…. Autistic Identity and social ‘acting’

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.

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Home at last – My journey from homeless to home

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”

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A corner of Whimsy Manor complete with Mr Kitty