Not just another year

This is going to be a rather reflective blog looking at my own experience of 2015. It will focus on a few things I have learned and observed this year.

Be careful what you wish for

Very early on in the year I joked that 2015 would be ‘the year of Jeanette.’ This was tongue in cheek – I am not a Chinese zodiac sign (although the thought is a little amusing. ‘People born in the year of the Jeanette will be ambitious and like pudding’). However it did seem that there was a perfect storm of success and recognition just waiting beyond the horizon. My prediction was correct. The thing I hadn’t figured on was just how overwhelming, challenging and confusing this storm would be.

The recognition I have been enjoying in Australia lately is a very recent occurrence. As an extroverted creative person the whole idea of recognition always seemed great. That is until I started to get it. I first began to realise that people outside my circle of friends knew who I was in mid-2014. By this year I found myself being singled out at conferences by large numbers of people and found out i even have my own following of people who go to all my talks and read all my literary efforts. In the past I would have been excited about this without qualification but in fact some big issues came with it.

Just say no!

A big issue with recognition is managing all the requests for my time and energy. Assertiveness and I do not know each other very well. As far as I am concerned, boundaries are something you get in cricket and limits are diet biscuits. This has had to change rapidly this year. Every week somebody asks me to speak at their event, contribute a chapter for their book or give permission for my memes to be on their website. I also have individuals who want to be my friend and almost always this is fine but a few times I have found myself needing to set boundaries in a hurry. I’m sure if I have a guardian angel, they have probably been doing a face-palm all year watching my pathetic attempts to set limits. However this is gradually improving. It will need to improve quickly as I have already got ten speaking events booked for 2016. This will probably be compounded with the release of my latest book, the collaboration The Guide to Good Mental Health on the Autism Spectrum in April. Things could get very busy at Whimsy Manor so I will need my ‘no’, ‘maybe later’ and ‘I need to look at my calendar’ primed and ready to go from 4 January.

Good friends

Up until 2015, for most of my life I felt isolated and lonely. Friends were a rare thing in my life and often the friendships were not based in anything real or shared and therefore weren’t particularly enjoyable. This year I have finally discovered my peer group. Probably 90 per cent of my friends at the moment are Autistic and many of them are fellow advocates and writers. I got to know one friend better this year. I will not embarrass her by saying her name but she is wonderful and we have this lovely reciprocal friendship. She is always very wise and gives me helpful advice. We worked on a project together this year and it was a joy.  I value such a friendship highly. In fact I am little bit cute when it comes to friends I really like because when I see a message from them I get all excited, as if I was ten years old!  The wonderful thing is that I have a good number of people in my life now for whom that is the case. Magic!

All work and  no play makes Jeanette…er Jeanette

This year was my first year as a proper workaholic. This was partially by choice and partially because I couldn’t say ‘no.’

I haven’t kept accurate stats but I think my usual week in 2015 involved 38 hours of full-time paid work and about the same of advocacy,  preparing presentations and writing, Down-time was something other people had. I would laugh when people mentioned ‘work-life balance’. I was speaking with my dad the other day about my great grandfather who was a multi-gazillionaire. My dad said when a doctor told great-grandad to take three days rest he went to London the next day because there was work to be done. ‘Oh dear’ I said ‘It’s genetic,’ because that is exactly what I would do! My work ethic this year has been absurd. People keep asking me how I have managed my huge workload and I have said such unhelpful things as ‘magic?’ and ‘picture my workload like a TARDIS….’ Thankfully I realised recently that the amount of busyness this year could well be the same for the rest of my life. As such I am trying to reassert a schedule which includes reading books and watching movies and things. It’s a work in progress…

Staying healthy

The constant backdrop to my life is my soul-rending mental illness. Successful Jeanette spends a lot of her time at home being tormented by visions and voices and death and supernatural nastiness. My  paid work and advocacy work is often used as a distraction against all this horror. I can honestly say that for every major presentation in the last three years I have been concerned that I wouldn’t be able to go through with it up until the day before the event. My work ethic and determination always gets me over the line but nobody has any idea of the difficulty and doubt I went through to prepare for the event at which I got a standing ovation from 1300 people or the conference where I was flavour of the month and was interviewed on national radio. My illness is usually a private battle. I hardly ever access assistance from friends, maybe occasionally from my family. It is an odd experience because it is often the thing I am pushing up against to give me motivation but it also threatens to destroy everything I have worked for. This is also a work in progress.

New year thoughts

I don’t make resolutions at new year – well no more than I do on other days. I have some intentions for the year ahead though:

  • Learn to say NO! More often
  • Manage people’s expectations and set limits where necessary
  • Manage my health and stay aware of any warning signs for crisis
  • Give Mr Kitty lots of cuddles
  • Give out a bunch of Jeanette business cards
  • Get to know my friends better
  • Promote friends’ skills (writing, speaking etc) and support them on their advocacy journey as much as possible
  • Write, write, write then write some more
  • Remember about work life balance and watch some TV
  • Change the world just a  little bit



Happy 2016!


Drink… a friendship

Note: This is a considerably longer blog than usual. It is not really about Autism or mental illness or advocacy. It is a story about a friend, alcohol and how I (eventually) learned to value friendship even if the friend is embarrassing!

I lived in what policy makers refer to as ‘social housing’ some years ago. I had been unemployed (or, in social policy-speak ‘outside the labour force’) since 2001. That being said, I did not choose unemployment, rather I had it unceremoniously thrust upon me after anxiety from my dish-washing job had caused some kind of psychotic episode and a week’s stay in hospital. I wanted more than anything to work but didn’t feel up to it due to worries that the stress of any job would lead to my emotional downfall.

The flat I lived in was small – I don’t know how many square metres it was, but the only access to the bathroom was through my bedroom and the front door opened directly into the lounge room. When I moved in, I was terrified of my neighbours, for the flat was in a block of over 100 social housing properties. I was truly a middle class child let loose in the ghetto. When I moved in the gas stove didn’t work and I had to take three days leave from university to wait for the maintenance man to come and fix it. The first day I moved in I couldn’t find the jack to connect my landline (it was in fact, for some inexplicable reason, located in my bedroom). I called the telephone company from the pay phone in the housing complex, with furtive looks over my shoulder to see if any irate tenants wanted to use the phone.

The second day of my tenancy, some young men who looked like drug addicts (and in fact were, as I later discovered), were kicking a football around. It kept banging into my window and upset me somewhat, but I was terrified to ask them to stop. The third day of my stay, in the evening, just after dark, a young woman knocked on my door and introduced herself and Kaylee. It was the beginning of the end, for while I had started out terrified and wary of my neighbours, I soon become one of the crew, part of the social housing tenants unofficial club, with all the alienation and hopelessness that goes with it.

After a month or so I met Mel, a fifty-something lifetime alcoholic; the mother figure in our gang of desperates and derelicts. I met Mel at Kaylee’s flat (she lived next door). We were all trying to work out how to hook up Kaylee’s new DVD player. Mel was drunk on the cheapest cask wine available. Kaylee did not approve as she had recently converted to Islam – a legacy of her love affairs with most of the single (and some of the married) Somali migrants in the area. Mel had poured some wino wine into a cordial bottle in a vain attempt to trick Kaylee that she was drinking something Halal and not Haram.  Mel was loud (and not just because of the alcohol) and had strong opinions as to how to make the DVD player work. Eventually after much frustration the machine did its job and we watched ‘Men in Black Two’. During the movie, I got to know Mel. She seemed very excited that I was enrolled in a course ay Monash University. You could see her frowning with concentration, trying, in her inebriated state to be polite and urbane. I ended up at Mel’s house that night: the first of innumerable visits to her own piece of underclass heaven. Mel had lived in her flat for twelve years, during which her two children had grown and moved out. She had a three bedroom flat for just her and her incoherent, deaf Maori boyfriend. She was very house-proud. While my flat was a breeding ground for cigarette filters, five cent coins and papers, Mel’s flat was immaculate (if you ignored the bong stains on the carpet – a legacy from her eldest daughter who shunned the demon drink but partook with gusto of the evil weed).  Mel got steadily drunker as the night went on and poured herself and me copious amounts of white wine from a five litre cask. At around midnight she started crying and told me that she had seen the doctor recently and he had given her two years more to live. Then as the night wore on, she froze, stiff. Kaylee advised me that she had ‘alcohol fits,’ but from the outset I suspected she in fact had ‘attention-seeking fits’ as she responded to my voice and moved her hand closer to me when I started to pull away. In all the years I came to know Mel, her fits only seemed to happen when she was feeling down and in need of some love.

A few weeks later it was new year’s eve. I had no plans – I never trust new year’s eve as it usually promises so much and delivers so little. Mel knocked on my door, tinnies of VB in hand, and asked if I’d like to spend the evening with her. We then went to Rob’s house (Rob being an undiagnosed Asperger’s ex-criminal who scoured the hard rubbish collection for stereos and TVs which he fixed and up either gave to neighbours or took to Cash Converters, depending on how charitable he was feeling). Rob was already half drunk and had his country music on as loud as it would go. He insisted on dancing with me – he always did the same dance steps, so it was fairly easy to follow his lead. Mel and Rob had known each other for some time and got down to the business of complaining about the neighbours. The block of flats it turned out was an incestuous place – apparently Rob had hooked up with the daughter of the older woman downstairs who complained about, well, everything. Mel’s boyfriend, Al, had once been a neighbour too – although they had met at the pub.


I drank more beers than I usually would – would I become an alcoholic while I lived here I wondered to myself before cracking open another can. At midnight we were still in Rob’s flat, admiring a coffee table he had painted with swirls and dots. He had also painted his fridge all over with green leaf-like shapes – it was quite impressive. After we’d bidden each other a rather slurred ‘happy new year‘ and Rob had tried to kiss me (not Mel I noticed), Mel and I walked over to her flat. She insisted we feed ‘the puppies‘ and collected lamb bones to give to the two ferocious dogs that guarded the derelict factory across the road from the block of flats. I had been surprised by these beasts barking at my the first week I moved in – they were both huge Rottweilers and looked more than capable of ripping your face off. But Mel was apparently on first name terms with them (‘Roxy and Bruce’) and fed them scraps whenever she could. She insisted that they were friendly and said I should give them a pat. Trembling (and a little too drunk to disagree) I patted the female dog, Roxy, who amazingly did not rip my hand off! Mel stayed at the factory gate, talking to the fierce dogs as if they were little puppies, while I longed to go back to my flat and bed. I didn’t get home until well after 3am, and spent the early morning in Mel’s flat, listening to the best of the ‘70s mix. I hate 1970s music and many of the songs I didn’t know, but Mel sang along and urged me to do so too. I walked across to my flat and went to bed, drawing a disparaging look from my long-suffering tabby cat, Tilly.

Mel soon started inviting me over for dinner – she loved to cook. It turned out that Mel’s story was quite a sad one. she had been adopted as a baby into a ‘good’ family. Her mother had been a teacher at the local school and Mel had grown up with positive role models in the form of her parents and their friends. When she was quite young she was raped and fell pregnant. She wanted to keep the baby and gave birth to a little boy. Sadly the baby died soon after he was born. Mel told me he would have been the same age as me. Showing some impressive resilience, Mel got herself a job. She met her husband as well. They owned a country pub together – him serving drinks and she cooking counter lunches for the hungry patrons. Her husband turned out to be a thug and beat her repeatedly. One time he tried to kill her, but she escaped and called the police. Mel was never the same again and took to drinking to dull the pain of all the tragic events she had lived through. The pub was sold, leaving Mel with a large sum of money. This was spent at the pub or on the pokies. Eventually Mel moved into the Office of Housing property and became part of the furniture. She had a sister who was a senior public servant, who found it hard not to judge Mel’s lifestyle. Her mother was elderly and kind and helped out if Mel was in trouble financially.  Mel showed signs of her previous prosperity. She respected people like me who went to university. If ever she met any of my uni friends she would be on her best behaviour. But she didn’t entirely remember how to behave and often said something inappropriate. To her credit she was not at all prejudiced against people from other countries, refugees, Indigenous people or gay people. Se took people on their merits and did not judge. She would tell any of her visitors that I was gay, regardless of whether I wanted them to know that piece of information, but there was no malice in it – she simply didn’t think that anybody would be judgmental or bigoted.

Mel loved cooking and would often make a roast and invited me over for lunch or dinner. There would always be the ubiquitous cans of VB beer or cheap white wine. It amazed me how Mel could cook so proficiently when she had been drinking beer since getting up at 9am. (One time she put some potatoes in the oven and fell asleep. The resultant fire alarm and smoke emanating from the windows caused the attendance of all the emergency services – police fire and ambulance. Poor Mel awoke to find a burly fireman looking at her with concern and two police officers standing around.) I was often hungry – a result of my poverty and studies, for I prioritised buying art supplies for my course over buying decent food. Meals at Mel’s house were a lifesaver. She also had a constant stream of leftovers which she would feed to the stray cats that lived under the flats, but often I would go over and she would offer me the leftovers. She was a wonderful cook and the food was always delicious, although I was grateful for my strong constitution as hygiene wasn’t a particular concern for Mel and chicken would come out of the freezer, thaw and go back in on several occasions before being cooked. Amazingly, Mel never got sick and neither did I.


My first outing with Mel happened shortly after I met her. I had recently purchased a DVD player which wasn’t working very well – the picture kept flashing and skipping on certain discs and I was fairly sure that this wasn’t supposed to happen. Mel offered to come into town with me to take it back, seeing that it was under warranty. We caught the bus and soon we were in the centre of town. The electrical goods shop where I had bought the DVD player from was some way away from the bus stop and we needed to catch a tram. However, on the way to the tram stop was Mel’s favourite drinking hole – The Post Hotel: a dingy pub with little charm and a regular clientele of alcoholics, all of whom Mel was on first name terms with. As we passed the pub, Mel couldn’t take her eyes away from it. She slowed down and looked in . ‘Who’s in today?’ she asked me (at this stage in our friendship I didn’t know any of the regulars at the pub, but I soon would). Mel suggested going in for a beer. ‘It’s 10am!’ I said and Mel couldn’t see why that was a problem. When we finally got to the electrical goods shop I explained to the clerk that my new DVD player didn’t work. To which Mel said, quite loudly ‘You shouldn’t have put it on the floor then should you!’ At that moment, I completely understood the expression ‘I can’t take you anywhere’, and wished I had left Mel at the pub and done my errand on my own. Thankfully the clerk didn’t think my placement of the DVD player had caused the issue and took it in to be fixed.

Mel was friends with every alcoholic and petty criminal in town. The odd thing was that they all had strange and oddly appropriate nicknames: Santa Claus; the Lizard; the Old Fart; Black Bob; and many more. They all met each other at the Post Hotel and jovially disliked each other. Their conversations centred around who had died recently, who had come into money, who had been in hospital, and the fact that the disability pension didn’t pay enough, all interspersed liberally with swears and insults. The other drinkers seemed to dislike Mel immensely but she still went into the pub at every available opportunity. On Centrelink payday, Mel would catch the bus into town, have a beer at the Post, catch the tram to the supermarket, buy food and then go back to the pub. She would usually play the poker machines, and generally she lost a fair amount of money, although occasionally she won. I soon became a part of the payday ritual. I earned less money than Mel as she still had a payment every fortnight from her dead husband’s superannuation. Mel always despaired over the small amount of money I spent on food. We would go back to the pub and have a drink with all the other alcoholics, trading insults and drinking up their pay. At first I found it hard to drink a beer in the mid-morning. However after a few months I could down a couple of cold ones at 10am and go back to Mel’s house and drink some more. I was an accepted part of Mel’s circle of sad friends. The bus drivers and bar staff got to know me: I was part of the drinking scenery.


About a year after I met Mel, her mother developed a terminal brain tumour. I learned from this that Mel had a very philosophical attitude towards death, for she must have seen a fair number of her drinking friends pass to that place where there are no Centrelink payments where every poker machine is a winner and the beer is free.  About two months after she was diagnosed, Mel’s mother passed away and Mel and her respectable sister inherited $80,000 each. Presumably Mel’s sister put the money on her mortgage or went on a holiday. Mel could quite easily have put a sizeable deposit on a flat for herself, but that was not something within her sphere of experience. Instead she spent a year going out for dinner, playing the pokies, drinking and buying appliances (a new fridge, a big TV and TV stand and a new display cabinet for her ‘heirlooms’ – a number of crystal tumblers and unpleasant china). Mel was not particularly generous with her windfall but within a couple of years it was all gone. My middle class sensibilities were horrified, for if I inherited that much money I would have surely put a deposit on an apartment and found a job. Mel’s attitude to money and how one obtained it was quite telling. She thought that the only ways to have any income other than Centrelink payments was to either inherit it, win it on there Lotto or have an accident and sue a company for negligence. There was no concept that woking was the optimal way to ensure a steady income.

These attitudes were a little incongruous given that Mel’s boyfriend Al worked full time as a carpenter and earned quite a good income. Al brought home around $1000 per week. As far as I could tell, with this sum he paid for beer, meals out, put a little in for bills and played the pokies. When I started work in the public service, Al and I earned roughly the same amount of money, but I saved a large amount of it towards a house. At this point I learned something about class. For Mel and Al had a similar income to me, as a public servant, but  what they chose to spend it on and their attitudes towards it betrayed their class attitudes (and mine too I suppose). I learned that you can have money and be socially excluded.

After knowing Mel and Rod for around eighteen months I started to notice that I had a far higher tolerance for alcohol than I used to. I enjoyed being drunk and often found myself staying up until all hours drinking and waking the next morning hungover to go to university cranky and tired.  I was completely accepted by the drinkers, both at the pub and in the apartment complex. Mel saw me as ‘one of the crew’ and I valued her friendship (with a few caveats). Part of me worried that I was an alcoholic – I even took myself to substance abuse counselling at a nearby rehabilitation centre, feeling out of place amongst the addicts and criminals. who made up the rest of the clientele.  I didn’t want to drink too much, but alcohol was everywhere in my life. I would go to Mel’s flat or Rod’s with a six pack of beer, determined not to drink more than that but then we would end up at the pub or Mel would offer me more beer from her stocks – ever the generous drinker.

I think Mel saw me as a surrogate daughter – I soon found myself spending a lot of time in her flat and meeting everybody in her life. This did have its drawbacks, such as when she went to threaten a neighbour and asked me to ‘back her up’. She was most annoyed when I didn’t but I was never much for being a stand-over and didn’t see myself in that way – I was a n Honours student at Monash, not a sordid alcoholic with violent tendencies. I was actually, with the benefit of hindsight, balanced between being an underclass alcoholic and a successful graduate – it could have gone one way or the other. However, I did notice that I had to put on an ocker, Jeanette-from-down-the-pub voice and my middle class polished English was what I naturally spoke. Mel didn’t know this though and thought me just like her.

During my friendship with Mel, I wrote a book. It was an autobiography and the first publisher I sent it to agreed to publish it. Secretly, I knew this could well be my ticket out of poverty and underclass society, but I didn’t mention it to Mel. She was very proud of me and quite excited, but I was finding myself caught between two worlds – a phenomenon which had happened a lot when I was younger. I was to have a book launch and Mel and some of the other neighbours would have wanted to come, I knew it, so I simply didn’t tell them about it. This was far preferable to the time I had an art exhibition opening, attended not only by my lecturers and fellow students, but by a small number of my neighbours. It seemed wrong – they were enjoying the free drinks more than the art, then felt out of place and left, but I was mightily ashamed of having people like that amongst my friends, at least in public.

Before long, I had met all Mel’s family and friends. She had two daughters – Jenny and Lisa. Jenny was married to a Muslim man from Lebanon and had two young children. Her son loved me for some reason – maybe because I thought smacking children was not an appropriate punishment and Jenny and her husband quite obviously didn’t agree. Jenny and her husband owned a home in Broadmeadows, in outer Melbourne. The mortgage payments were not much more than rental would have been but Jenny’s husband had a strange attitude to work – he often lay in bed all day and didn’t go. The only reason he had a job at all was that h worked for his cousin, but the mortgage payments were not made regularly. I never found out whether the bank foreclosed, but Mel was a guarantor for the loan – at the time I thought it foolish for somebody with no assets to guarantee a loan.

Jenny’s son, Ahmed was five the last time I saw him. From an early age he;d demonstrated fair evidence that he may grow up to be gay. He loved pink sparkly things, wore his sister’s clothes when he could fit into them and was a beautiful sensitive soul. I wondered how his conservative father would take the news if he did bring a Kevin or an Ibrahim home, instead or a Jane or a Fatima. I had a lot of time for Ahmed – he was a lovely natured boy and it made me sad that his parents seemed so overwhelmed by the world and incapable of having time with their children – for they spent very little time playing with the kids and I never once saw them read a book. When Ahmed and his sister were at Mel’s house, all the adults would smoke and drink beer – hardly a suitable environment for young children. I wondered how many other kids in Australia had this kind of upbringing.

But Jenny and her husband’s lack-lustre parenting was nothing compared to Jenny’s sister Lisa’s attitude to her children. Lisa. Lisa and her partner Ray were petty criminals. Ray was constantly drunk and angry. Lisa was constantly stoned and communicated with, well everyone, by yelling. Mel disliked her eldest daughter Lisa and made no secret of it. When I first met her, Lisa had just one daughter, Britni. Britni was eight and was the most lover starved child I had met. I would spend time talking to Britni, letting her play imaginative games where she would be a fairy princess or a famous jockey. This was discouraged by all the other adults who seemed to see Britni as a chore rather than a blessing. Her reading and maths ability was very poor for a child her age, but her parents were incapable of assisting her, being functionally illiterate themselves. After a couple of years, Lisa worried her relationship was at stake (having stabbed Ray wand thrown him through a window), so she decided to get pregnant. Little Billy was premature and severely underweight. As long as I knew them, he never spoke – he was almost three the last time I saw him. he demonstrated all the d=signs of a developmental disability and his parents seemed incapable of dealing with raising a child with disability. I almost cried when I thought of the future these two children would have. At ten, Britni was demonstrating signs of an eating disorder and  told her mother she wanted to grow older so that she could play the pokies when she was older. I hoped there would be same intervention to help these kids and longed to escape this stultifying world of poverty in which children were not valued.

While friends with Mel, I completed an Honours then a Masters degree. I wrote a book and was involved in filming for a documentary which later aired on national TV. The documentary was interesting, as the director decided to feature my living arrangements in the movie (much to me dismay and embarrassment). The Director wanted to film  me interacting with one of me neighbours and I decided that Mel was the least likely to cause me too much judgement from people I knew watching the film – she could be on her best behaviour when she wanted to. The director turned up at my flat and we walked over the Mel’s house together. Mel offered the director a beer which she declined and we discussed our friendship for the camera. I felt a fraud, given that by this stage I was friendly with Mel more out of convenience and obligation than out of genuine feeling (although this was an interesting point – I was never sure whether I disliked me neighbours or not. I was quite confused about how I saw them. I was more a social chameleon than anything else, so if I was exclusively in the company of my neighbours they would be my friend but if I was with my neighbours plus any ‘outside‘ people, I would be embarrassed. It was not a good state of affairs). The scene in Mel’s house ended up on the cutting room floor – she was mortified and quite angry with me, as if the director’s editing decisions were somehow my fault.

While I was completing my Masters degree – in the final year – I decided to apply for a public service job. It was quite a process whereby I needed to submit an online application, then undertake a timed comprehension test, then have an interview. I didn’t actually expect to be offered a public service job given my lack of professional experience and my ‘interesting‘ past life (which included several criminal convictions). But after the interview and some additional questions relating to my wayward youth, I was accepted. I was delighted, especially as I would be able to live in better accommodation and not have to spend my evenings drinking foul cheap beer with the neighbours. When I got the call, one of the first people I contacted was Mel. She didn’t try to hide her disappointment. Some time ago I had come to the realisation that Mel’s feelings about our friendship and mine were two entirely different things. In Mel’s mind, I was the wayward daughter who had come good. I was going to be ‘famous’, I’d written a book and got an education and now I was going to be ‘rich’. The problem Mel felt about my successful public service application was that I would need to move to Canberra. As far as I was concerned, this was a huge advantage and selling point for me – I could make a clean break from my life in Melbourne, which I had realised was not very edifying and involved too much drinking. I could distance myself from friends I didn’t really like anymore and start afresh where nobody knew me. Mel got very drunk and cried and told me she wouldn’t live without me. She had one of her ‘fits‘ and pleaded with me not to go, but I think she knew that I would be leaving.


I left for Canberra, promising to stay in touch with my neighbours. The only one that I actually staying in regular contact with was Mel. I had some quite mixed feelings about this, but did enjoy her mothering me. I also felt that if I bade Mel farewell and never spoke to her again I would be proving myself to be a bit of a snob. I called Mel every weekend from my new, three-bedroom home which I shared with a strange woman and her cats. On the infrequent occasions that I travelled to Melbourne I would make sure I visited Mel – in fact she would not allow me to go to Melbourne without staying with her, and she wanted me to stay for far longer than I did.

When I visited Mel after three months of middle class living and public service paychecks, her house seemed strangely diminished and foetid. The carpets smelled, the scraps for the cats would get spilled in the hallway and not be cleaned up all day. There was always a posse of mangy cats miaowing at the door for food, and Mel would lift up these pitiful creatures and try to cuddle them, not minding that they usually aimed a swipe at her face with their sharp claws, often. The odd thing about Mel’s house was that I experienced it completely differently now that my circumstances had changed. Because I was apparently ‘rich’, I was expected to buy a carton of beer and shout all the drinks at the pub – and we always stopped by at the pub. The alcoholics who were the only regulars at the Post Hotel seemed even more pitiful now that I no longer moved in such circles, at least, when I was in Canberra.


Mel had a fascination with my family. She wanted to meet my parents, my brother and his children. I was fairly keen for this to never happen, for I was a little ashamed of Mel and didn’t want to be seen in her company any more.

Mel’s attitude to my salary was a bit disconcerting. Mel would parade me to all her drunken friends as ‘my friend Jeanette – she’s a public servant you know: earns heaps.’ This would usually result in me also shouting beers for Mel’s friends, and if I showed any ambivalence to funding the next morning’s hangover of large numbers of people, Mel would dig me in the ribs and say ‘oh, but you’re loaded.’ Mel didn’t seem to understand that I had more expenses now that I was working full-time: I gave to charity; I paid my mortgage; I had to pay full price for health care and dentistry; and I n longer had a concession card, giving me cheap medications and public transport. I resented Mel’s insistence that my money be used to fund her and her friends’ drinking sessions.

Worse still was Christmas, and even Easter, for Mel would expect me to buy expensive gifts for her, Al, both her daughters and their children, even if one of the daughters was supposed to be Muslim. In return, I usually go a $20 Target voucher (and I no longer shopped in Target, and even if I did I was unsure that $20 would be of much use, unless i wanted to buy chocolates). Mel also liked me to be at her house on Christmas morning. She really seemed to think of me as a daughter but as the time went by I realised that I was increasingly reluctant to oblige.

The last Christmas that I saw Mel I spent a couple of days in Melbourne before Christmas day, and of course I was expected to keep Mel company. When I was about to leave to spend Christmas with my actual family, little Ahmed, who was now five didn’t want me to go. He held on to me tight and cried and cried ‘please don;t go Jeanette, please don’t go!’ In the preceding days, Mel had introduced me to a new neighbour, Gary. Gary was a hulk of a man with a grizzled beard. Mel told me he was soon to face court for stabbing somebody. He also gave Mel boxes of ‘discount’ foodstuffs which had ‘fallen off the back of a truck.’ Mel usually had a good sense about criminals and most of her friends were relatively law-abiding, but this man was of a different type entirely. I didn’t feel safe in his company and I didn’t like listening to his conversations about stabbing a friend. He knew he would go to prison and I was amazed he wasn’t’;t there already. I tried to discuss my concerns with Mel but she shrugged it off with a ‘Gary’s all right.‘ So that was that.

I had recently purchased an apartment in Canberra. Mel was very excited. The first day I moved in she called me at midnight. I had been sleeping, after lying awake for some time trying to work out what the various noises were in my new home. I leapt out of bed when the phone rang, wondering if someone had died, but it was just Mel, wanting a chat. I didn’t like this development for she seemed to think that because I lived alone I should be able to answer the phone at any hour of the night. I imagined this happening on weeknights and shuddered. Mel had also announced on several occasions that she wanted to stay with me in my new apartment. I imagined her spending a week drinking and playing the pokies and wondered what I would do while this happened, for Mel and my ideas of a good time were poles apart by now.

When I returned home from that last Christmas I knew what I needed to do. I called Mel, hands shaking and explained that I didn’t feel I could be her friend any more, especially because of the criminals she was associating with. While this was one reason, my main reason was that the idea of hosting a drunk and clumsy Mel in my small flat filled me with a kind of creeping horror and I needed to distance myself completely from her to ensure it didn’t happen. Unfortunately, Mel had just had one of her frequent fallings out with Al and she was already quite emotional. I extricated myself as quickly as I could and then started to become anxious. What if she sent her daughter Lisa’s dubious boyfriend up to Canberra to ‘sort me out’? What if she had friends in Canberra and she would ask them to break into my house and steal my things? What if I came home from work one day to find her standing on my doorstep? I went to work the next day trembling and anxious, and was like that for several more days. I consoled myself by asserting that Mel was more victim than perpetrator – she had in fact called my mother in quite a state asking why I hated her, but apparently had made no threats. Eventually I figured that she was gone from my life, and that did come with considerable melancholy. For Mel had been very good to me in some ways. She had fed me, kept me company, taken me out (even if it was to places I didn’t really like). She had been my surrogate underclass mother and I did appreciate it. It was just that our worlds had steadily grown further and further apart and I no longer felt comfortable with that aspect of my life.

Mel never tried to contact me and I never called her, although sometimes I wondered what was going on in her life. Did Jenny and her husband work out their money worries? Did Al come back to Mel (as he had done on innumerable occasions)? Did Mel still stuff up idioms and mix metaphors in such an amusing way? Was she still living in her three bedroom flat or had the Office of Housing decided that she should move to a smaller property?  I often thought of Mel when advising on social inclusion policy. I imagined Mel and how she would react to a program or policy, whether she would participate or feel alienated.

Last year I had a phone call from  private number It was Mel’s younger daughter. She called to tell me that Mel had passed away.  offered my condolences and felt very guilty for having permanently ditched Mel. Despite the fact that my former friend had supported me when I needed it and hd nothing but love for me, me embarrassment and upward mobility had meant I didn’t speak her or want her in my life.  Mel taught me a lot. I still think about her often and wish I had managed to put my embarrassment to one side and stayed in contact with her,


We wish you a merry Friday

Yes, it is that time of the year – there are decorated tress in public places, the shops are awful and hectic, Christmas specials are on the TV (I always like the Christmas special in Dr Who), Carols by candlelight has been playing on commercial TV, complete with has-beens and a smattering of current celebrities presumably appearing through some kind of show business altruism. And this is the Jeanette Friday 25 December special.

Anyone who knows me well knows that despite the fact that I am a Christian, I hate Christmas. I don’t hate the concept but I hate all the expectation  – the fact that one is ‘supposed’ to have a big family gathering and lots of gifts seems really crappy to me given how many people out there do not have contact with family or have no money to but lavish gifts for their kids. A friend pointed out last week that the idea of Santa cClaus can be really difficult for poor kids who see their more affluent classmates and friends receiving loads of things from ‘Santa’ and the poorer kids thinking they must have been ‘naughty’ due to their smaller number of gifts. Another example of what seems like harmless fun having a rather damaging unintended consequence.

I usually spend Christmas with family, which is nice I suppose but I find the whole thing pretty overwhelming. The day concludes with a huge pile of wrapping paper on the floor and the kids comparing all their various books and plastic things from China. The adults drink nice wine and play board games with varying degrees of competitiveness. It is nice but it makes me uncomfortable and stressed too.

This years I did not spend Christmas with family. it wasn’t because I had fallen out with any of the other Purkises but was because I wasn’t quite as organised as I should have been about booking the furry boy in for cat boarding so I needed to stay in Canberra. I have a few surrogate families in Canberra who would have been happy to have me. I thought it best to be proactive and invite myself just in case it didn’t cross people’s minds that I might prefer to be with people on Christmas. After two families declined (one due to the impending birth of a little boy – who arrived on 22nd and has the beautiful name ‘Arlo’, like the folk singer –  and the other due to family illness). I was left wondering if I would feel so lonely as to emulate one of my former public housing neighbours and buy a load of beer and get roaring drunk. I finally decided to invite myself to one of my my movie night friend’s  family Christmas.

They said yes and I was delighted, if a little apprehensive for I had never invited myself to another family’s Christmas lunch before. I have friends who for various reasons struggle with Christmas so I planned to Skype with a few people and share a sincere ‘bah humbug’.

I spent the morning not quite knowing what to feel. Here I was on Christmas Day and there were no family members, no presents under the tree (actually no tree or decorations of any kind). I gave it a good think and realised it was just another day. It was Friday. I worked on a presentation about Autism and employment I will be delivering in March. It felt odd but sort of liberating. I was alone on Christams morning and the world was continuing to go on, I was not depressed or miserable, just a little reflective. I felt like the same Jeanette I always do.

After a postponement and good deal of catastrophising and on my part, my friend picked me up and there I was, being an honorary member of someone else’s Christmas celebration.   I Knew my friend and her daughter (who is a also a friend) and her husband. My friend’s parents came too. I hadn’t met them before but they wrere very lovely and welcoming. The thought that I was like a homeless person or recently-released prisoner or a lonely older peson receiving Christmas ‘charity’ crossed my mind a few times. It didn’t feel like that though – I was accepted and welcomed. (And I also was a homeless person and a recently release ex-prisoner at various times in the past and in my experience these are not things to be pitied or patronised, just life stages that require love and the right support).

I was my usual extroverted self, and wondered a couple of times if I was talking too much and somehow ‘usurping’ Christmas. It was all good though. The youngest member of the family had lots of presents (including a copy of my autobiography). She was very grateful and showed her beautiful character, as she often does. The adults got mostly chocolates and some unintentionally amusing things from a Queensland-based granddad – a big bag of prunes and an even bigger one of figs! My present was the best of all though – lovely company and inclusion.

Time flew and I got home at after six. I got to Skype with one of my friends and we had a great conversation. It was funny because my friend really dislikes Christmas from what I imagine is mostly his own negative experiences. For me, in the past ten years at least, I don’t usually have  terrible time but I just think it is unfair to put all the expectations on people – and parents of young kids – that they have to do some big family event and presents when so many people can’t. I remember the four Christmases I spent in prison and the misery of mothers whose children were in an entirely different universe and the best they could hope for was a ten minute phone call with all the other parents impatiently waiting behind them for the one phone which serviced 110 women.

I’m never particularly enthusiastic about the season. It was nice to talk to my friend via Skype. As we were about to sign off I said ‘er happy Friday’, because for me that is what it is, Friday. While I was very grateful to my friends for having a spot for a funny author person at their festive table, I now know that it isn’t all that important in my lfie. It is another day, that’s all. I don’t need to go along with all he expectations and excess. For me, the best thing about Christmas is the carols. I am listening to the King’s College choir sing traditional carols as I write and they are lovely. So while I won’t say ‘bah humbug!’ and I respect that people may see Christmas as a big event, for me it is a time of reflection and thought. People are important on any day of the year.

My best present is a more inclusive and friendly world for those who struggle in life

Eternally grateful for all of it

You may remember what you were doing on New Year’s Eve 1999. You might have been partying with friends or worrying about the potential for all the computers to explode at midnight. I remember my evening very well. I was not partying and I did not have the internet. Or a computer. I had a five by two metre cell and a collection of art and books people had given to me and a little radio cassette player – I didn’t have a CD player because it would have been stolen by the prisoners who were tougher  than me – which was all of them. It was a hot night and I was in ‘the slot’ or loss of privileges so I was not allowed to see any humans save for the nurse with my medication and the prison officers with my food. I had got off to sleep despite the heat and at midnight the women who were in the much nicer cottage units all yelled and banged pots and pans to ring in the new millennium. It woke me up. I yelled ‘fucking new year! Shut up!’

So I began the third millennium CE as a prisoner. I had very few wants but at around that time I started to see my life in different terms and decided I did not want to spend the 2000s in and out of prison and psych hospitals like I had in the 1990s. I didn’t want to die young, to be murdered or OD on drugs or take my own life. A new millennium should equal a new life. I didn’t really believe in anything much but for some reason I prayed to get me out of the situation I was in. My only wish was to not be involved in crime or drugs any more. i didn’t want lost of the things people tend to aspire to – a big house (or any house for that matter), an expensive car, a partner or kids. I had no great career ambitions, I didn’t want to be famous or accomplished. Writing books and speaking to audiences never entered my imagination as ambitions for my future. I just wanted the chaotic life I had been living for the past five years to improve. With all this lack of ambition in mind, I set about making my new life, having no clue what it might look like.

That was almost sixteen years ago. In the past sixteen years my life has undergone such a transformation that I hardly believe those memories of misery as a prisoner and an alienated  outcast are real. Did I really live that life? Now I have everything I could want. This doesn’t mean my life is easy or free from trauma and misery. I often struggle with managing my life but I think many people would be quite envious of what I have now. I am financially secure, I have a great job that is free from discrimination and harassment, I have the best cat in the world, I love my family and friends, I have some recognition and influence in the Autism world, and most importantly I really like who I have become. I largely created the Jeanette that you see now in the past sixteen years. I decided the things I wanted about myself and those I wanted to divest myself of. I have learned a lot of insight and wisdom from all my struggles with mental illness. None of this happened magically and most of it involved a lot of effort on my part and terror about returning to my previous, broken existence. I still sometimes worry even now that my old life will return, despite how exceptionally unlikely that is.

I am not a particularly special person though. The reason I succeeded in changing my life was mostly due to my will and determination. When I was in that miserable, negated shadow life I had in my twenties I was actively seeking out bad experiences and punishment for myself. Sometime around me telling my criminal comrades to shut up on new year’s day 2000 I decided that I would no longer seek out negative things. I am a strong-willed Autistic woman so if I was facing in a positive direction, I was damned well going to make good choices. I had a lot of assistance from different quarters too. It s almost impossible to make any lasting change without support. Independence certainly does’t mean doing it all by yourself.

Here are some tips which helped me on my journey.

  • Focusing on the positives rather than the negatives. This is not always easy but can be practiced
  • Engaging in some meaningful activity – this does not have to be paid work. It can be anything you find fulfilling
  • Accessing help and support when you can’t manage by yourself. This is not the same as giving up independence
  • If there are people in your life who genuinely value you, stay in touch with them
  • Set and strive for goals
  • Failure or making a mistake is not necessarily a disaster. Unless you die from the mistake, you can use it to learn from. Everyone makes mistakes and  fails sometimes
  • If you are in a toxic living situation, get out of there as soon as you can. If you can’t leave permanently (due to financial pressures etc), try to take some respite time with a friend or family member or a disability or mental health respite service
  • Pets and companion animals can be wonderful therapists
  • If something (a decision etc) feels wrong, it probably is. Your gut instincts are a very powerful thing. Trust them because most of the time they are right
  • Do things you enjoy as often as possible
  •  If you need to, use someone’s accomplishments in overcoming difficulties as an example and support. I am quite happy for you to use mine, but there are lots of other people who have overcome difficulties too
  • Remember that you in are in control of your own life. You can’t really control much else in life other than your actions and decisions. You are the CEO of your own life
  • Try not to place blame and get stuck in blaming others. Be angry while you need to and then work out what you can do to to change the situation or how you respond to it. You really can’t change the actions or attitudes of other people
  • Try and set boundaries and limits with other people who need these. Assertiveness and boundaries can be really tricky so it might be a bit of an ongoing project
  • Remember that nothing lasts forever. If life is hard, remind yourself that it will not be the same next year, next month or even tomorrow.





Reflections on loss and change

I saw a couple of things recently on social media which made me stop and think. I saw the first one yesterday. I was on the bus on the way to work and just happened to check Facebook. There was a message from the profile of the editor of an Autism magazine which was presumably from one of his family stating that he had passed away suddenly. I am never prepared for death but this was particularly shocking, and is characteristic of social media that one becomes closer and more familiar with other people I would otherwise not really have a lot to do with. I felt very sad for the editor and his family. I didn;t know what to do. The first thing which struck me after the shock of the news was that the editor had asked me for five articles for upcoming editions of the magazine and I wondered what I would do with the three articles I have already written. As is customary in these sorts of situations, my primary response was inappropriate  – I mean who cares about some articles I had written and what I would do with them? In the magnitude of death, my articles were kind of irrelevant. But I am not in control of how my mind reacts to things. Yesterday evening I tried to find put about the editor’s family. I really didn’t know him and we had only met through social media but I felt the need to help out his partner, kids or anyone else who might have been severely impacted.

It was a strange kind of grief because I didn’t know the man as a friend. I had never met him and all I knew about him was his Autism world activities but I felt really sad and cheated of his company and of the opportunity to get to know him. Death is something I don’t really cope with, be it of a friend or family member or even thinking about my own mortality. Death sort of leaves an abrupt stop in the flow of things. You want to continue the conversation but you can’t.

The other thing I saw on social media was related but different. I have a relative in the UK who has a son who very sadly has become involved in criminal activity in recent years. The young man is now 22 and spent his birthday in prison. My relative posted this on social media today and I could feel some of his heartbreak and disappointment in circumstances from the other side of the world. I responded to his post and said what a shame that people in prison get so many services to assist them which would have been much more usefully applied before they got in trouble. I also reflected that my 23rd, 24th and 25th birthdays were spend in prison and that I am an example that lives can change.

I’m not sure what the message for this post is. It’s more a reflection on things which occur and my wish to change things for everyone. I know logically that I will die and that I have a limited time here on Earth but it’s very rarely that I think about this. The death of the editor brought home to me that we can cease to exist as suddenly as a heartbeat and the longest we will be around is still an insignificant figure when compared against history, This thought fills me with terror but it also inspires me. Because I will not be around for long, I have a need to make things better, to make an impact on the world in a positive sense. This is urgent and I need to do as much as possible while I can.

Which brings me back to my relative’s son and my own time effectively wasting my precious years. As a forty-something woman who prides herself on understanding life from the perspectives of others, I have begun to reflect on just what Hell my choices as a twenty-something woman put my family and those close to me through. I look at the terrible, self-destructive and self-defeating things I did and can feel my mum and dad’s devastation and despair. And I now hate that I did this to people close to me. It certainly wasn’t intended to upset people, I was just in a very dark place, but now I see what it might have felt like for my anxious mother to see her daughter in jail or for my sensitive father to see me make every mistake in the book.

I have thought for a long time what a good thing it was I didn’t die in my twenties, statying in that dark universe of negativity forever. And there were certainly many times I could have died.  The fact that I came through it, despite the heavily-stacked odds against me doing so, has always been a great comfort to me. I suppose my five years in the Hell of prison and self-destruction was almost like a death for me. If one looks at it like that, I suppose I am in heaven now, and it often feels that way. I really feel for my relative and his family going through the stress and pain of having a child in prison, but in reality he is not dead. There is always hope. And I think that until the day I actually do die, I shall say that to all the people in the world. I know its a cliche but where there is life there is hope.

Your past meme



The battle of Whimsy Manor – my private challenges

I’m on Facebook at the moment. I have my IPad next to me running through a slideshow of my memes and the occasional pictue of me speaking at something interspersed with images of Mr Kitty and various artworks I have either created of have displayed at my little flat which is known to its friends as Whimsy Manor. Stephanie the iPhone 6S is downloading the latest iOS and Mr Kitty is at my feet, waiting for a well-deserved cuddle. I have music on and a glass of wine. The cooler is on and I am in my pyjamas but wearing the sparkly shoes I wore to my talk with Temple Grandin in November. I’ve just finalised minutes from a board meeting and am feeling quite content.  It mid-December in the busiest, most challenging, magical and amazing year of my life. I have spent the whole year in a limbo state between mental illness and triumph,  misery and victory. In the past eighteen months I have gone from being a barely-known Autistic author to a well-known advocate and sought after speaker.

I could very easily publish a post banging on endlessly about how amazing everything is and how I’m in charge of my domain and am confidently changing the world and what not. However, this wouldn’t be true. This post is more a reflection of how I dealt with the things nobody really saw much of – my private world.

This year has been the ‘year of Jeanette’ in a lot of ways. I signed a contract for, and subsequently wrote a book about mental illness and Autism, along with two coauthors, one of whom has become a close and highly respected friend. I spoke at th Asia Pcific Autism Confernece (twice), met and presented alongside one of my very few role models, Temple Grandin, wrote 99 blog posts (100 including this one), was published in all manner of magazines, journals and websites, had thousands of cuddles with the little black kitty therapist, Mr Ronnie, gained a profile as a social media ‘personality’ and had a bunch of wonderful movie nights with my friends. Plus I spent the entire year working full-time where I was unable to not so long ago. I met people, built my friendships. strengthen ties with my parents, gave lots of people gifts and received some lovely gifts from others. If I compare 2015 to pretty much any other year, it outranks all of them in terms of accomplishments and experiences. You might think it was one big party where I did a happy author dance constantly and felt proud of myself.

This year was the first year that my mental illness took the stage with me and featured in my writing as a specific entity. I discovered the website The Mighty this year and quickly became a reasonably regular contributor of articles to the site, mostly about my ‘other’ diagnosis. I have been in denial about this diagnostic label or ashamed of it (or both) for most of the twenty years it has been a part of my life. The illess is a head to define thing but most reputable, non-evil  psychiatrists call it a psychotic illness or schizophrenia. There is a lot of misinformation and stigma about schizophrenia and psychosis. Because of this I find it a lot harder to talk about in public but this year I set that aside and decided to own both of my main diagnoses.

My illness occupies a different part of my character than my Autism. Autism is almost like a friend, albeit a frustrating and misunderstood one at times. Schizophrenia, on the other hand, is more like a relative I don’t like who gets drunk at family gatherings and if I’m very lucky she just embarasses me. If I am less fortunate she destroys my house and everything I care about and I have to start life from scratch. So while Autism is a different processing system, my schizophrenia is simply a bastard.

Reflecting on this year, what I think of most is sitting in my flat alone (well, not really because you can’t be alone with a cuddly cat making his precious presence felt). I spent so many  weeks sitting on the couch, confused, thinking there were ghosts in my house, thinking Mr Kitty is a demon, not trusting my senses and trying to explain away terrifying experiences. The weeks leading up to each big presentation were all filled with doubt and worry and a strong sense that I would be unable to fulfil my expectations as an invited speaker… ‘What happens if I cancel APAC? What happens if I can’t go to speak with Temple Grandin?’ ‘What about my reputation if I cancel something?’ Combined with medication issues this was very stressful and worrying.  And the medication was an enemy in disguise at times. Ten days before I flew to Melbourne to speak with Temple Grandin my lithium level all of a sudden raised to a toxic amount and I was physically weak. Climbing one flight of stairs would leave me out of breath. Even getting dressed in the morning would leave me exhausted with sore muscles. How would I be able to stand on stage for an hour and talk to 1300 people? Thankfully a trip to Dr Google (closely followed by a trip to my actual psychiatrist) resulted in a reduction of the lithium dose which miraculously resolved within a week and I was able to present.

Every success was tempered by a struggle, Every win the result of a private battle. Today on the way home from work I thought about how great my life is but at the same time I spend most of my days scared and confused. I am terrified of the supernatural and see it everywhere. I see and hear things which terrify me and confuse me as I try to rationalise and explain them. So yes, 2015 was an amazing year, but a degree of effort and challenge went into the success. I don’t think this is confined to me either, I think everyone has that private life they don’t share where they lack confidence in themselves and have private battles to fight. I don;t want to complain about my experiences as we all have challenges to face. In fact when I reflect on it, I think I should be quite happy with the fact that I kept every single one of my speaking engagements and they all went well. IT s also a good thing to have to battle a mental illness enemy in my life as it keeps me humble and makes sure I don;t get too carried away with my success. So 2015 was an amazing, challenging and very interesting year. I’m interested to know what 2016 will hold….





Autism has a gender and a race and a sexuality and a class…

This is my rant for the year…. I have literally just got home from work. Something on social media had me so riled up I needed to write this post the instant I turned on Alastair the MacBook Air. The author of the social media post defended having no female admins on an Autism site because ‘Autism has no gender.’ As a woman on the spectrum I was absolutely stunned to see this, for Autistic people also belong to all the other demographic groups and are impacted by them as well as Autism.

A woman on the spectrum is a woman and an Autistic person. One does not cancel out the other. Women in the spectrum experience issues related to their Autism, their gender and the combination of those things. We live in a world where woman still experience sexism, particularly when you stray from the shores of first world countries.

I have a number of friends who are Autistic and transgender. There is no way I would ignore their transgender identity because they are also Autistic. Pretty much any transgender person you meet will say they have encountered prejudice and discrimination and even physical violence on account of their gender identity. When people are on the spectrum there are both the issues around Autism which most Autistic people experience as well as the issues faced by transgender people. You can hardly say to a transgender Autist ‘your gender identity is meaningless because Autism knows no gender.’ I imagine they would look pretty incredulous if someone said that.

In Australia we have a wonderful ancient history of Aboriginal and Torres Strait Islander cultures. Tragically now Indigenous Australians face an inordinate amount of prejudice and discrimination. The history of our nation is filled with shameful acts. As in any other ethnicity, there are many Autistic Aboriginal and Torres Strait Islander people. It has only been in recent times that the needs of Indigenous peoples who are on the Autism spectrum have been considered. Certainly some of the Autism-related experience is common to Indigenous and non-Indoegnous people but there are also cultural considerations which need to be taken into account. This is an area which needs much more attention from Autism service providers and others. But Autism does;t cancel out a person;s cultural identification either. If you said to an Aboriginal Autistic person that their Aboriginality was irrelevant because they are Autistic and ‘Autism knows no race’ I imagine they would be understandably offended.

The experience of an Autistic person who is unemployed and marginalised will be very different from that of one who is financially independent. A refugee Autistic person will have a vastly different experience of life than someone born in the country. An Autistic person who is Queer will most likely find life different to one who is not. All our different characteristics shape our experience and how we respond to the world and the world to us. That is not to say a middle class white man on the Autism spectrum will not experience discrimination. All I am saying is that we are a product of our culture and background and this influences our experiences. To say there is no gender in Autism is completely preposterous.

So here’s the customary Jeanette personal story…

I am a middle-aged woman with a diagnosis of Asperger Syndrome and schizophrenia. I identify as Queer (asexual and formerly Lesbian). I spent time in prison and was outside of the labour force for many years. I was homeless and in unstable accommodation for many years.  (Don’t worry though – I now have a good job, a little house and a bunch of accomplishments. I still have the illness but I have some good strategies to manage it). As a member of all those demographic groups I experienced the misunderstanding, discrimination, abuse and uncertainty that you would expect with all of them. My Autism has a gender, a sexuality, a class, a serious mental illness and all that these things entail. Yes I am Autistic but I am a bunch of other things which determine how I am treated and how I exprience the world. I cannot separate my Autism from any of those attributes – all are intermingled.



It’s OK to ask…

Independence is not something I am lacking in. I moved out of home at 17, got a job and went to uni. I had some serious difficulties in life and dragged myself out of them through determination, motivation and  faith. I now work full-time, own my own home and spend a lot of my free time assisting other people. I pride myself on being able to manage my own affairs. These are all good and laudable attributes but there is something I struggle with – I find it almost impossible to give up control and to ask for help.

When I was a child I was taught not to ask people to do things for me. It was rude and selfish and on the list of things to avoid. My understanding was that you only asked another human being for help or favours if you were about to die or were being robbed or something equally severe. I told a couple of teachers I was being bullied in desperation and their responses were quite unsatisfactory – apparently bullying was ‘character building’ and I would ‘look back fondly on your schooldays as the best days of your life.’ Evidently there was no help for me and I was on my own. I got on with doing everything without asking for assistance.

As a young adult I had some difficult experiences and ended up becoming quite dependent and institutionalised. I moved from not asking anyone for help to being extremely dependent and not being able to love independently and manage my own affairs. When I decided to change my life in the year 2000, independence was my aim. I wanted to be successful and accomplished and to not rely on mental health services, welfare payments or public housing, I achieved this and in 2008 I had a Masters degree,  a mortgage and a high-paid, responsible job. I moved cities and stopped seeing my psychiatrist and was delighted not to need welfare payments anymore and to instead paying taxes myself to support the poor.

This was all fine until I became extremely unwell with mental illness. It took me months to ask for any kind of help. I thought I could manage it myself. I was treating psychosis with cups or lap sang sou chong tea and Vitamin B tablets! Eventually I was encouraged to seek help by an anonymous counsellor on a support hotline I called not knowing what else to do. On the advice of the phone counsellor I called my mum and  somehow managed to explain that my life was broken, I was lost and needed help. I spent the next few years in and out of hospital, taking leave from work and relaying on income protection insurance through my superannuation fund to pay the bills. All the time was that spectre of institutionalisation and dependence which I desperately wanted to avoid. As soon as I thought I was feeling slightly better I would return to work, only to have to take time off again within a few weeks. I had a great rehabilitation case manager from the HR department at work. She was very supportive and respectful of me and my needs. She told me one time that I was amazing and  that most people would have asked to be pensioned off after such a  severe illness and so many extended periods of leave. This hadn’t even crossed my mind as my job was the beacon of success and ‘ordinariness’ that was motivating me to recover.

My health improved sufficiently foe me to return to wok full-time and within a few months I gave a talk for TEDx Canberra and had a book on employment published. I was a access story again and I saw myself as independent. I had learned to ask for help when things were life-tthreatening or extremely difficult but I still struggle with asking for help in everyday life. I worry that I will upset or offend my friends if I ask them for things.  Yesterday a friend asked me if she could help with my lounge-room curtains which are a bit frayed and sad. She then offered her and her husband’s assistance to do some other odd jobs around my house. I was very grateful as these jobs were on my list of things which I was unlike to ever be able to do myself and which I have resolved to just put up with. My friend’s offer brought home to me that I not only have difficulties asking people to help me but also that it doesn’t even occur to me to do so.

This all got to thinking about assistance and the fact that were are all interdependent with one another. I imagine I do things for other people which they appreciate so if they want to hep me it is not me begin rude or selfish, it is reciprocity.

Some thoughts about all these things:

  • If you need help, it is OK to ask for it. There are different avenues for asking for assistance, from your friends, partner or family to professionals such as accountants if you need your tax return looked at to psychologists if you have mental health concerns or medical specialists if you have health issues.
  • We are all interdependent. You cannot live your life without somebody else helping or supporting you and vice versa.
  • If a friend or family member offers help it is probably because they are willing to assist. It is OK to accept their offer, or not.
  • If someone offers help, even if you decline, express your appreciation.
  • The help that friends or family give you usually comes from a different place than the help that people who are paid to assist you (such as nurses in hospital, teachers, psychologists etc).   People who are paid to hep you are not generally your friends and they give similar assistance to other people too.
  • Independence does not mean never accessing assistance or asking for help. True independence is about living your life while accessing appropriate support.
  • You don’t know how your actions will affect others, You might just think you are being a friend while your friend finds your friendship comforting and supportive and it means the difference between them being able to cope with their life or not.  You may make a profound impact on others without even knowing it.
  • You may not realise that you need to or are able to access assistance. Try to be open to the option that there may be a person or service that can help you in various situations.
  • While asking for help be aware that assistance should be about empowering you to cope with issues rather than taking away your own power and agency and making you dependent.







It’s your calling…er calling

A friend and respcted colleague asked me a question I have not been asked before today. He said ‘Jeanette, you have one shot at this. You are in the universe once. What do you think you should be doing with your one shot? I thought for a nanosecond and then replied ‘I’m doing it. My Autism advocacy is may calling. I love it. It is my passion.’ My friend said this was obvious when he heard me talk about advocacy. I get to do what I love which is a privilege.

I want to share with you my last day or so, doing my ‘calling.’ I spent yesterday evening and this morning in the regional Victorian town of Mildura. I was invited there by my colleagues who deliver  the Swinburne University Autism MOOC course. The event was a sort of launch of their programme in a non-online context (although the videos  created for the MOOC course – including my one of employment and the other on gender and Autism – are apparently still going to feature in the coursework.) This was my last speaking engagement of 2015. It was presentation #25 for 2015 for me – a busy year.

I’ll be honest – part of me didn’t want to go to MIldura. I spent last week helping my workplace celebrate International Day of Poeple with Disability. It involved a lot of meetings and emails and some public speaking. On Friday I introduced some videos (the excellent Spectrospective’ video produced in April this year by Amaze / Autism Victoria and some TED talks which included mine on resilience and Temple Grandin’s on different kinds of minds). Just before I went onstage in our  theatre at my workplace I was asked to give a brief presentation at the Happy Hour (in to hours’ time). I quickly dashed off some dot points and added one to acknowledge our CEO who let us know she would be attending. While public speaking and I are as friendly as close cousins and I am not intimidated by looking into a sea of expectant faces, I was concerned my lack of preparation would impact on the quality of my talk. Of course it went fine, but after that – and speaking to some staff at Australia Post HQ on Thursday –  I wasn’t all that excited about hopping on a plane and doing it again in a different location.

On Saturday morning I dropped the Mr Kitty person at the boarding place (‘cat prison’ according to my feline friend) and went out for coffee with my lovely friend Julie who gave me a lift. (I don’t drive, which is usually OK but for dropping off and picking up the furry boy I do need assistance by a friend with a vehicle). I felt tired. I didn’t feel like flying to a hot place and staying in another hotel. My life recently has seemed to be a procession of airports, hotels and conference venues. I don’t mind but I had just got to a point where I wanted to spend my weekend sleeping in and reading books and playing with the furry boy.

My weariness and ambivalence stuck with me until I boarded to plane from Melbourne to Mildura. I looked out the window and saw a beautiful patchworks of wheat fields and dams and  trees dotted about, all flat with no hill or mountain in sight. For some reason this got me excited. Then the album I was listening to on my phone stopped at the exact moment the plane got into the gate st Mildura airport – that kind of coincidence always makes me happy.

I was met at the airport by one of the local people. She was lovely. She told me all about the town with a sense of civic pride and fondness. I got to the hotel which was a splendid old building with three country pubs nearby and a clientele comprises almost completely of blokes in shorts and thongs (flip flop sandals for non-Australians). The best thing was the air conditioning – it was 41 degrees outside – dry, desert heat which feels like an oven. All of a sudden the magic returned. I was going to talk to people about Autism and change the world just that little bit.

The talk I gave today was about Autism and mental health – the topic of a new book due out next year penned by myself and Dr Jane Nugent and Dr Emma Goodall. Autism and mental health.  Improving clinical services to help them better understand the needs of Autistic clients – is very, very dear to my heart. I was a little anxious to give this presentation but I thought it was a great topic and I will probably be giving a similar talk several times after our books is released. The audience found my talk helpful – they bought most of my books. After lunch Chris Varney, Chief Enabling Officer and founder of the I CAN Network gave a great presentation based in his experience as an individual and the experience of the I CAN Network. It was a good mix – In a very simplistic sense, I sort of set up the problems in my talk and Chris provided solutions. The audience was not huge but they are engaged and interested. There is no feeling like speaking to a group of people about something you are passionate about. I found it hard to believe that I had had mixed feelings about giving my talk.

So when I was asked what my one aim, the thing I need to do is, I understood that I will probably be doing this advocacy stuff for a very long time. y calling has called and I have answered with an empathic ‘I’m all yours’.  I feel so honoured to get to live my calling.


Me speaking about mental health and Autism in Mildura