Almost exactly ten years ago I was a very recently published first-time author. Being an author was the pivotal point in my life from which I went from poor and alienated, dependent and filled with disgust and embarrassment about my past to the person I am now, who is a lot happier and more independent. When my first book was accepted for publication I think I may have told everyone I knew in the world. It was so amazing. The book was almost less meaningful than what it represented. As an author I took on a wonderful socially valued role. Positive social roles are hard to come by when one is a former criminal and drug addict, a person with a diagnosis of schizophrenia and Asperger’s a public housing tenant and a person who had been on the disability pension for twelve straight years with precious little work to supplement my meagre income.

Even before it was released, I was fairly certain that my new book would mean a new life. Ten years later I know that to be true. I am no longer somebody who doesn’t dare enter expensive restaurants and shops for fear that I would be chased away by disgusted wealthy people or staff. In fact I have a personal income which is above average. I don’t live in a public housing flat but own my own flat which is a little temple of all things Jeanette, complete with absurd amounts of art, Tiffany lamps and gold plated teaspoons,among other things. This citadel of Jeanette – known to its friends as ‘Whimsy Manor’ – is completed by a sleek black cat known as Mr Kitty. He hops into handbags when friends visit and uses my pink Nepalese rug as a very large cat toy. The other thing that I have now which I could only have dreamed of ten years is a huge network of friends, colleagues, coauthors, confidantes, mentors and mentees. Had you told me ten years ago that this would be me I would probably have laughed.

I don’t think about my life journey too often but today I was reminded of it. A newly diagnosed Autistic woman who is a little older than me asked if I could catch up with her and talk about Autism-type things and share some of my own experiences and thoughts. We met at a cafe near my work. As always happens at these sorts of meetings when I went to pay she gently closed my wallet. Funnily enough I don’t think I’ve paid for a meal out for a while!  As we sat down I fished out my latest book which only just arrived this week .(I have to admit that I had been showing it off at work all morning). I said ‘That’s my latest offering’ My lunch companion was impressed.

At that moment I was taken back to ten years ago. I had been asked to give an interview about my brand new autobiography with a radio show in the UK called Woman’s Hour. Apparently this was A Big Thing. I was collected from my dingy flat by a polite chauffeur in a shiny car. I was pretty certain he had never been on our estate before! I got to the ABC studios in South Melbourne. I had never been in this building. I was clutching my book just in case anyone questioned my right to be there. A forty-something woman was in front of me. I recognised her vaguely as some kind of journalist on a news program.  She swept past the security desk, clutching a book and said ‘my latest offering…’ to the guard. I was filled with envy and intimidation and wished I was that confident woman swishing around in designer clothes with expensive perfume and an expensive hairstyle. ‘I’ll never be like her!’ I thought to myself,

So life changes. The woman I spoke with at lunch said to me at one point ‘You’ve had a diagnosis for 21 years. I’ve had mine for weeks.’ I understood what she meant as I used to think that about children gaining a diagnosis when I didn’t get mine until I was a very angry and screwed up twenty-something human disaster. I do enjoy talking to people about Autism and feelings and things. I think I probably should have studied psychology rather than Fien Art but I guess I get to talk to lots of people now anyway. It was funny talking to someone at the start of their diagnosis journey when I am a fair way along the road. The woman told me I  was very positive which people do tell me. Of course positivity and motivation and determination are the three reasons I am not sitting in my tiny, damp and horrible public housing flat with alcoholic neighbours and a stalker for company. As my lunch partner and I parted I said ‘if you want to catch up again, just give me a call.’ People are often surprised at how available I am to the community but talking to people about Autism is my work, be it a roomful of people or an individual.

So I suppose today was about journeys – my own and others’. We never know where a journey may take us or where it might end. I try to keep an open mind, not write people off but stick up for myself if I need to and take happiness and joy where I can find it. My life is certainly not perfect and  I have a level of responsibility which I find a bit overwhelming at times but I am surrounded b good people, a lovely house and a naughty black cat. That’s enough I suppose.

 

 

 

 

I imagine that this may be a controversial blog post but I felt the need to write it.

I am an Autism self-advocate, writer, artist and public speaker. In the last few years I have ended up with a larger profile in the community than I expected. Lots of people read my books, blogs and articles and attend my talks. This means I am often put in the position of having to decide whether writing or speaking for an organisation is appropriate.

The Autism community is like any other community, with different opinions and beliefs and often a lot of robust debate. I too have a lot of opinions around what is good practice in providing service to Autistic people, what is inappropriate and what is downright abuse. Within our community there is a large number of organisations for support, education, early intervention, advocacy and activism. Some of these I align quite closely with and others I disagree with. Every sort of organisation asks me to speak and write for them.

This is a difficult activity and it often requires constant reassessing. Organisations can change their ethos and direction Some people in our community advise me not to write or speak for organisations whose Autism advocacy credentials do not align with their own and I am very temped to follow their advice and only speak or write for organisations which I have thoroughly vetted and had passed stringent criteria for organisations prior to accepting the invitation. However, this is not the course of action I always take. I do write and speak for some organisations whose ethos and values do not match up with my own, and here are some of the reasons:

• If I just spoke for the ‘perfect’ organisations I would not be speaking to many people. We live in quite a plural world and there are all sorts of organisations. I like the idea of my message getting to as many people as possible so if I only spoke for three organisations I would just be ‘preaching to the choir’ and not being of much value.
• If all the Autistic activists and advocates only spoke for those three hypothetical perfect organisations there would be no Autistic voices anywhere else in the world. I don’t see that as being a very good thing.  I think the more Autistic voices in more places the better and we can represent our views with people who may not otherwise get to hear them.
• I spoke for an organisation last year which engages i some practices (i.e. ABA) which I strongly disagree with. I had mixed feelings about this talk but in the end I decided that the audience of predominantly parents of autistic kids, were far more important to speak for than the organisation booking the talk. I bet pretty much nobody in the audience was thinking ‘oh crap. Jeanette Purkis supports ABA’. They were in fact listening to what I, an Autistic self-advocate had to say and they benefitted from it. I tend to be more focussed on the audience of my writing and presentations than the organisation which gave me a platform to express it.
• Some people have said I can damage my reputation but writing for or speaking for an organisation which does some questionable things. Of course there is an element of truth there but really, anyone who knows me knows my stand on matters related to Autism and if anyone distanced themselves from me because I gave a talk for an organisation they don’t like, I’m actually not all that bothered. I am independent and I remain independent.
• I accept that there is a line.  I constantly reevaluate any organisations I write or speak for more than once. I do not make a set decision so if they did hypothetically start endorsing bleach enemas or something I would drop them like a hot stone and probably write a bunch of blog posts about what everyone else should do so to.
• We have to remember that most people with a connection to Autism do not have a considered and specific view of what is and isn’t ‘kosher’ as advocates and activists like myself do. Most people are individuals on the spectrum or family members and partners of Autistic people who are just looking for information. These people won’t think ‘I’d better not look at that website because of its dubious credentials’, instead they probably think ‘ooh. Autism articles. Who is that Jeanette person?’ Then hopefully they will read my article and get some benefit from it. If I had boycotted that site because some of the things it posts are distasteful to me, and all the other advocates and activists had done so too, the reader looking for something useful about Autism would probably get some ableist perspective about how Autism is a ‘tragedy.’ I’d rather they read something by me or an advocate colleague!

I understand that there are many differing views in this space but this is just my take on the issue. May we all constantly question our motivations and actions – I know I do.

 

 

 

 

 

Today I went to get my hair cut. I spent my lunch hour in the salon with my young and friendly hairdresser giving my locks their six weekly snip. We talked about what was going on in each other’s lives, including the very recent release of my latest book. I bought some overpriced conditioner and paid $145 for the spruce-up of my look. I walked out the door, checking my iPhone, public service lanyard swinging jauntily and wearing the lovely top I bought last year for a function at Parliament House. My hairdresser had complimented me on my pretty top. I felt good. I looked forward to my afternoon of responsible, paid  work. It was a ten minute walk back to my shiny office building.  I waited at the pedestrian lights and noticed an old homeless man standing just in front of me. I hate to say it but I was instantly filled with unease. He smelled a little. He looked like a prospector from gold rush, 19th Century California. What if he asked me for money? Should I give it to him? I weighed up the pros and cons or giving this man some unimportant coins from my Italian leather purse.

Yeah, I’m not painting a very sympathetic picture of myself am I? Fortunately I stopped my judgmental train of thought in the time it took the light to go green. ‘He’s you.’ I said to myself. ‘Be nice.’ Of course the man wasn’t actually me but he could well have been for my life has not always been as affluent as it is now. Twenty years ago I was a prisoner, Fifteen years ago I was living in supported housing for young people with serious mental illnss and ten years ago I was an aspirational newly published author trying to escape the drudgery and alcoholism of my public housing estate.

My reflection on my terrible judgement of the old man  got me thinking about a lot of issues but mostly the fact that we do not know where our choices will take us. For me, had I chosen to spend time with the wrong friend at a critical moment in my journey, say a former prisoner or drug addict, I might have ended up in prison again and spent my life as a completely different person. I had a good friend from amongst the alcoholics of my public housing estate in the mid 2000’s . This woman had been an alcoholic for a long time. It came to be all she knew. Her path to addiction had started with losing a baby and was cemented by her husband trying to murder her and leaving her with inconsolable grief and post-traumatic stress disorder which she medicated with beer and gambling. Knowing this makes it almost impossible to judge the woman for her addiction, poverty and dependence. All my public housing neighbours had a similar sort of story to tell.

So when Jeanette the Judgmental of Canberra comes along and meets people likes the homeless man today and casts judgement on them – they are smelly, possibly dangerous, want money etc – she is not being very charitable. This fate could happen to all of us given the right circumstances. In fact I spent some time in a state of unstable accommodation and homelessness myself when I was younger. Can you imagine 41 year old me looking at 24 year old me and crossing the street because the younger me looked dangerous and smelled and had holes in her clothes?

When you extend this out, as an Autistic woman with a mental illness I share a lot with many others with similar  diagnostic ‘labels’. Some of these people have had almost identical things happen in their life to me but they have reacted differently. The qualities I have which make my unlikely life possible are unique to me, as anyone’s qualities are unique to them. For example  I have a mental illness which includes an affect (mood) component. I can be very depressed. However I also have an absurd amount of motivation. So when I am depressed, peripheral things like cooking healthy meals and tidying my house fall by the wayside but I channel the remaining motivation into being able to go to work and do a good job. For many people with depression, there is precious little motivation at all when they are depressed and their meals wouldn’t be healthy, their house would be a mess AND they might not be able to consistently attend or perform well at work and therefore lose their job.

One of the reasons I hate myself a bit when I am uncharitable to others who have apparently not made such an outwardly ‘successful’ life as me is that I am making assumptions about them without knowing their circumstances. I know that is a terrible. thing to do, for all our personal qualities plus the experiences we have shape our life and often there is a very fine margin between a good and a poor outcome.

There is one very dangerous thought that pops into my mind sometimes and that is ‘if I could do it, why can’t you?’ This is the worst thing for me to think. It is not compassionate, or understanding or even accurate. No two people are alike. Of course I want a world where people on the Autism spectrum and those with mental illness have a positive life, a meaningful job, fulfilment, stable accommodation, enjoyment in life and so forth. But if those things don’t happen we can’t blame the individual for not achieving  their potential. We have to support people to achieve their goals and aspirations. If they don’t, blaming them for it is unhelpful. It is better to understand a person and work with them to succeed rather than being guided by the narrow lens of our own experience.

And I know that all our lives are fragile and precarious and we constantly need to support ourselves and others. We don’t know what might happen tomorrow, next week or next year.

So I treasure what I have and when I see myself sitting in judgement, impressive in wig and robes, gavel ready to condemn another human, I just utter the age old refrain to myself ‘There but for the grace of God go I’ and try to be nice and understanding instead,

 

 

 

 

 

 

Yesterday I awoke at 5 am. I didn’t need to but I was going to the airport and didn’t want to miss my taxi (at, um 8:20!). I was travelling to Dapto, a town on the Pacific South Coast of New South Wales. I was a bit stressed. I wasn’t really stressed about the talk – i wrote it ages ago and practiced it a few times so that was all good to go. My concern was arriving at the venue on time. I had to take a taxi then a plane to Sydney then a taxi to Wolli Creek Station then a country train which – it all went right – would have me arriving 14 minutes before my talk. What could go wrong? I then returned home via a similar process after the talk. My Kitty was at home waiting for my return and the Coming of the Cat Food. My medication was also at home. I had thought about taking it with me, just in case there was a delay but I decided against it. Every single mode of transport did what I wanted it too. I was lucky enough to get three very courteous taxi drivers with whom I had three interesting conversations. On the way home I got a train form Wolli Creek station to the airport which I ad never done before but a friendly station staff member told me how. The only glitch was that the flight home was delayed by half an hour and involved lots of changing gates and things. Of course I arrived home stressed and jangly and went to bed about twenty minutes after I arrived.

When I agreed to do this talk and decided to make it a one day event I knew what it would entail in terms of transport logistics. My mental health has been rather difficult of late, with scary hallucinations and people whispering about me all the time which I’m fairly certain isn’t real. I have not slept properly for a long time and have been very stressed and overwhelmed. So a day like yesterday was not something I would consider helpful for these issues.

There were no dignitaries at the talk, no Cabinet Ministers, famous authors, nobody who could provide me with material or intangible gain of any sort. It was a meeting of people with disability, carers and service provides in a regional area. So why on earth did I do this? What was the benefit to me?  And why did I come away form the presentation feeling fantastic and not really caring about all the transport-related stress?

The reason for this goes to something fundamental to all of us – my motivation. I have been thinking about my motivation  lately. My motivation has changed over the years. I used to want negative and unpleasant things to happen to me so motivation was entirely negative – not a very nice time in life. After that I spent some years wanting to be ‘ordinary’. I was aspirational and wanted an education, a professional job and a mortgage. The fact that I achieved all of this within eight years or making the decision and within in years of being released from prison  is testament that I am quite motivated. Somewhere in that journey I decided I wanted to be an author and after that an advocate and public speaker around Autism. I wasn’t really sure why I wanted that but it involved a big profile and lots of people knowing who I was. I don’t think it was a particularly altruistic motivation. I wanted to be well known. These days I tell people that if you want fame and recognition go on the X Factor and if you want to help people be an advocate. I could have done with that advice myself a few years ago. Of course I became somewhat well known in the Autism community and realised that I am no longer motivated with reaching a huge audience, I have been on national television, given a TEDx talk, sold bunch of books and written for websites and journals which reach millions of people. I tend to think I am too well known these days so  I am not seeking to further build my profile.

I think now my motivation now is to make a difference to people’s lives, whether that be thousands of people or one person. Yesterday I gave out a bunch of business cards and all the people I gave them to were ordinary folks who wanted to talk to me about their own challenges and struggles. Yes I like talking to dignitaries and Cabinet Ministers but the more ‘real’ and satisfying conversations are with people with genuine need (although of course sometimes dignitaries have real need too).

I’m glad my motivation has moved into a more positive place.  So I spent yesterday in a state of mild anxiety, checking train timetables on my phone and checking when the last plane would leave in case I missed mine. Despite this I had an amazing time talking to people about my experiences of education to work transitions. Any hey, if it involves me getting up on stage it has to be good! I also bought some Louis Comfort Tiffany fridge magnets froth Metropolitan Museum of Art shop at Sydney airport so I have a souvenir.  I am very happy about where my motivation is at now. It is certainly a god exercise the pinpoint your motivation and what drives you.

New fridge magnets – love a good souvenir!

 

 

 

Like all humans I am a funny little mix of all sorts of experiences, emotions, loves and hates, worries and fears. Worries and fears seem to define some of us. For people like me with an experience of mental illness and Autism, worries and fears can dominate our lives, holding us back from things we want or need to do. If there is a beautiful paradise waiting for me after I die, the only thing I would want would be not to be scared like I have been my whole life. Fear is the backdrop to my existence – fear of the supernatural (how do I know that is my imagination?), phobias (‘the spider won’t hurt you Jeanette, No I won’t put it outside. Your phobia is silly and irrational’), fear of the horrific scene you glimpsed on TV and is now going to haunt your life for weeks, with no sleep and the light on for four days and telling your dad when he looks in at 2 am that you’re ‘studying’.  The fear of the school bully, the rapist disguised as a friend. The abject terror of being a middle class socialist kid in prison with the underclass that  you spent the last four years trying to spur on to revolution but now realise you are more of a target than any capitalist, with your polite manners and funny manner.  Fear of losing your perfect job and your home because your brain is in the terrifying world of psychosis and there’s nothing you can do, fear that your health will never improve and you will be trapped in that purgatory forever. Fear that Mr Kitty is dead not sleeping. The list could go on further.

That was just the terror, the anxiety is even more pervasive. These things haunt me – haunt many of us, for I am not alone here. Autistic people almost all have struggles with anxiety. Some researchers have suggested that anxiety is not a seperate entity from Autism but a part of the condition. I don’t know what I think about that specifically and am happy to see where the researchers end up with their thinking. However I do know that Autism and anxiety often live together.

One of the worst things about anxiety is how some people fail to empathise with an anxious person. I have even heard some people in the Autism world complain about others’ anxiety as being annoying. I always tell people that if someone else’s anxiety is bothering them, how much more do they suppose it is bothering the person experiencing it!

Anxiety is not just debilitating and traumatic, it can stop us from achieving goals we would otherwise succeed at. I spent years being unable to work. Not because I was unintelligent or lacked skills and education but because I was such a perfectionist that I thought leaving a dirty plate in my dishwashing would result in the entire restaurant going out of business. On this occasion my anxiety grew a life of its own. When I had a shift in the evening, I would be highly anxious all day leading up work. Sitting on the tram to my workplace, I would be so anxious I couldn’t tell if I had peed my pants. Of course that didn’t really help the anxiety! After a few weeks, I was in that heightened state of anxiety all the time. The anxiety had stopped relating to anything in particular. I didn’t know what to do. Of course it got so bad I ended up in hospital and had to quit the job.

As an anxious 27 year old dishwasher, there were a few things I might have benefitted from (and some of these may assist readers if you struggle with anxiety. That being said there are many different experiences of anxiety and each person uses different strategies to cope):

• Try some activities to address the physical manifestations of anxiety. I tend to find that if you feel anxious in your body and your mind, alleviating the physical sensation will help the mental experience too. I find deep breathing very helpful when I am very anxious.
• Anxiety is not weakness. It is a biochemical status in your brain which is often impacted by what’s going on in your life. It’s nothing to be ashamed of.
• Seek help. You don’t need to suffer in silence. Psychology, psychotherapy or medication prescribed by a doctor can help. You might need to try a few different options before you get the right one as everyone is different.
• Try not to hide your anxiety from people close to you. It is not shameful and  sharing your anxiety experience can help others to address or accept their own difficulties.
• Some people find pets or assistance animals very helpful at addressing their anxiety. I know a good cuddle with Mr Kitty will always lessen my anxiety.
• Many people find mindfulness meditation very helpful for a number of mental health issues. Mindfulness is a practice derived from Buddhist teachings which helps you to focus on the here and now rather than regretting the past or worrying about the future.
• If possible, find a level headed someone to run your worries and concerns by. If they think you don’t need to worry about the thing, you can take that as a more objective viewpoint and hopefully it won’t be such an issue.
• One of the worst things about anxiety is that it can stop you from doing something you want to do based on the premise that something negative will occur that in fact almost certainly won’t. I find if I want to do something challenging and which worries me, I tend to force myself to do it even if I am worried as I know that all my stress and concerns will probably never eventuate.
• Remind yourself of all the difficulties and challenges you have overcome in your life and how these have given you resilience and strength. If you have got through all the challenges you did, you probably have a good chance of managing in the future, whatever may occur.

 

 

I wrote this post for Heidi who is doing great things with Canberra Cooking Circles. Then I thought it might have wider appeal so am blogging it. Enjoy…

When I was a child I didn’t have much concept of gender or the social conventions around what a girl was ‘supposed’ to be like. Whatever it should be I never conformed to it. I remember being quite surprised at the reactions by adults in my world when I was eight and walked home from school on a  hot day. The boys took their shirts off. I was vaguely aware that older girls and women had breasts and they shouldn’t really be shown off in public but I was eight and had no breasts at all so I took off my shirt and enjoyed the cool breeze. Apparently this was The Wrong Thing to Do. I was confused.

My confusion continued through my teenage years. I was shy and had few friends. I preferred the library to a party and the characters in books were better friends than most of the flesh and blood people in my life. All my schoolmates were talking about boyfriends and kissing and sex and what they were wearing to the formal. All these things seemed silly to me.

My family went to a rather dogmatic and conservative church which had a bunch of specific rules for female members. From an early age I started to realise that as a woman all I would be allowed do in the church was make the flower arrangement, play the organ or make the cakes and coffee for morning tea. All the interesting roles were taken by men. I knew my mum really wanted to do the Bible readings but she knew that wasn’t ever going to happen. The world was apparently weird and unfair.

As an older teenager I encountered sexual violence and harassment. I couldn’t escape creepy men. There seemed to be a new potential abuser everywhere I went. I didn’t actually feel confident to tell them to go away. I thought I needed an excuse. So I would tell them I had a boyfriend or a girlfriend, that I had to go to work or an endless stream of other reasons not to have them do whatever unpleasant things they wanted to. This tactic only worked some of the time. I wondered whether I had a sign stuck on my face that said ‘bother me. I’m shy and not assertive’.

My life went in some strange and frightening directions. I had a sort of asexual relationship with a man who turned out to be a violent criminal. By the time I worked out how dangerous he was I was too involved to leave him. We did awful, stupid things and went to jail. I went from being unable to say no to anyone to being a violent criminal – albeit an extremely reluctant one. Jail was like a malevolent high school where the bullies might kill you if you get it ‘wrong’. I worked very hard to discover what made criminal women happy, angry and murderous and somehow fitted into that broken universe with my half finished university degree and visitor’s list filled with my awkward socialist friends and fundamentalist family.

While I was a prisoner, amidst writing tragic poetry and having visiting art teachers lament that an art student should be in jail, I met a psychologist. The psychologist was called Vikki and she  specialised in working with Autistic women. She asked me questions and got me to do some interesting activities – trying to remember numbers and arrange social comic strips. In return she gave me a diagnosis of Asperger’s syndrome. I didn’t know what this meant. Was it a diagnosis of ‘geek’? Was it just my parents making excuses for all the mistakes I had made in my twenty years on the planet? It seemed a lot to deal wth so I shelved it for a few years.

By the time I picked up my Asperger’s diagnosis again, I had gained a mental illness diagnosis, spent another three years in and out of hospitals and prisons with magistrates not knowing where to put the funny little woman who painted so beautifully and wrote like an angel but who could not stay out of an institutional setting for more than about two weeks. In 2000 I made a choice to change my life and started studying Fine Art at university again. The Asperger’s diagnosis became my friend. She was a little shy and didn’t like to be introduced to too many people, but she grew in confidence. A couple of years later my diagnosis and I collaborated on an autobiography. It was published and I was all of a sudden a rather surprised author.

I still didn’t know where I fitted in all the gendered existence of the world. What was an Autistic woman? Was I doing whatever Autistic women did? I had no idea. In 2009  I was asked to speak at a conference about women and girls on the Autism spectrum. The first day was a conventional conference but the second day was  a workshop just for women and girls on the Autism spectrum. I was sitting amongst 100 of my female Autistic peers. That day I knew I had come home. I found my world, my identity, my kindred.

I have never left that moment. It is with me still. But now those 100 Autistic women have turned into tens of thousands on social media, readers of my books, friends, colleagues. I now know the terrain well. No longer wondering how to be female but knowing I am Autistic Woman  and she is a good thing to be. My work now involves helping other Autistic women and girls to find their own belonging. If I can help one young woman to avoid the hell I went through then anything else is a bonus.  Women on the Autistic spectrum face some specific challenges, many of which I have experienced. So International Women’s Day is meaningful to me because I want other women to have power, to value themselves. For Autistic women – and all women – to have the opportunity to find where they belong and are safe, accepted and valued.

 

So keeping with the mental health theme of my last few posts, I am focussing on my experiences with my ‘other’ diagnostic label – schizophrenia or one of its sisters. People who know me well will notice that at around 9:30 every night I take my antipsychotic medication. And hour or two later I go to bed. I wake up pretty much the same me that I was the day before (if I’m lucky and all is as it should be). I have been taking psychiatric medication since 1995. I remember when I first started taking meds I was staying at some place for down and out youth and the leader took us all out for something or another and I forgot the meds. In true Jeanette Aspie stressy fashion I got really worried about missing the dose. The leader said with some exasperation ‘you won’t turn into a pumpkin!’ (It’s true, I didn’t turn not a pumpkin. I turned into a more anxious and slightly annoyed human). That was one of a very small number of times I have not taken my meds. I did have a bit of a time in 2012 when my illness thought I didn’t deserve the medication. I knew not taking it would make me unwell but I thought I deserved punishment. And Yep, I got punished with some time in hospital and a treatment order fi I remember correctly (which I may not). The other time I missed my meds was last night. It was completely accidental. I had been feeling quite unwell in a sort of depression manner and thought an early night was called for. I washed the dishes and brushed my teeth and  went to bed just after nine. Mr Kitty slept next to me. Then I woke ip at 11. A friend was messaging me. I felt scared for some reason. Then  I went back to sleep. I was waiting for an email from my publisher in the UK. This played on my mind. I dreamed I was calling the publisher. Then the dream turned a bit awful. I was the very violent and criminal central character from that 70s film ‘A Clockwork Orange.’ I was going around the world with a protege – a young innocent girl who actually looked like a younger me. We were destroying nature. Birds would fly past and we would kill them. It was awful. I woke up and didn’t know where I was. There was a sort of orchestral sound coming out of my lounge room. It was discordant and I thought there might be a ghost orchestra in my house. It seemed unreal but real. Something was wrong. I raced around and turned on all the lights. I called the crisis team because something was definitely not happening the right way at Whimsy Manor. The lady said it was just a bad dream and made some joke that she wasn’t someone called Vera who I had apparently spoken to the day before. I didn’t remember calling the crisis team yesterday. Now I was really confused. She suggested a milk drink with honey (they always do) but I didn’t have any honey. Should I tell her that? She suggested watching music videos on Rage on the ABC. Evidently she didn’t know me well. I hate anything remotely scary on television even when my brain is behaving itself. Rage videos at 3 am would surely be full of confusing and frightening images?  But she was kind and said I should call beck if I needed to. I went back t sleep with all the lights on. Mr Kitty was still on my pillow. He purred when I patted him.

I woke up a 5 am. I was wide awake. Something was seriously wrong. Then I came to the realisation as to why I had such a difficult night. I checked my webster pack for yesterday’s meds and there they were, looking up at me almost accusingly. At least there was some explanation for some of the difficulties.

I set about doing what one should do at 5 am when one hasn’t taken one’s life-saving, sanity-inducing psychotropic drugs.That is that I worked and created and worked some more. I discovered that my writing came easily to me, more so than usual. I made memes on my iPad – each one more striking and impressive than the next. I shot a video I had been asked to do for an Autism and employment website. It was masterful. I was buzzing with creative power and intellect.

Slowly something crept into my mind. This unusual and gifted me was the me of the 1980s. The school student who never studied for a single exam and came top of each year. The seven year old poet. The fifteen year old who read Karl Marx’s Das Kapital (volumes one and two) on the school bus to find out about communism. She was there in me and the main thing I noticed was that she was not happy.

My parents used to tell a story about little me. Apparently some educator or doctor or someone decided to IQ test little primary school Jeanette. Little Jeanette apparently sat down with this interesting new piece of work and returned a Mensa level score. Little Jeanette went to gifted kid class for a while after that. I can never reconcile gifted Jeanette with who I am now. Certainly I have a few brain cells knocking about and am far from unintelligent but I am certainly no genius. I have more insight and wisdom than raw intellect these days. But today I saw that piercing, blinding intellect return. Being the author of a soon-to-be-released book on managing mental health I am a little ashamed to admit this but the idea of keeping the genius and ditching the pills did cross my slightly addled brain. Just think what I could do with the genius me? How much could I change the world in good helpful ways?

And then I realised why there is no argument with this decision. There is only one option to take. For psychiatrists do not hand out heavy duty medications for fun. I have taken antipsychotic medication or over 20 years, and I think I have needed to. For child Jeanette and teenage Jeanette was different from 21 year old Jeanette. By the time I ended up with my mental illness diagnosis and all it came with, I was not a poetry writing, IQ test blitzing genius. I was a drug addled, psychotic recent ex-prisoner who was unable to function in the world. I had a choice to use my brilliance well and for whatever reason or excuse I thought to take, I gave up that choice.  I have endless remorse for my poor behaviour in the 1990s but I suppose my penance is that I lost that brilliant child. I threw her away to please a criminal boyfriend and then to dull my guilty mind with narcotics.

I find my glimpse into my former intellect today almost cruel for it is not a choice I have. If I chose not to take the pills, I imagine it would work like this. I would become increasingly  sleep deprived, move frightening dreams and waking experiences would come, my hold on reality – which is always somewhat tenuous – would be lost. If I were lucky I would end up in hospital for a few weeks and if I weren’t I would be dead. Thinking about it, there is even a chance that just missing one dose when I was already a little frazzled could result in further issues so I will be keeping as close eye on myself.

So I get to keep my rather dulled-down intellect and with it the knowledge that these medications have enabled me to do some pretty amazing things. I’m not Einstein but I am Jeanette and that is a good thing too. And I’ve stuck a note on the medication cupboard for tonight saying ‘take your bloody meds Jeanette!!’ so I don’t forget

 

 

 

 

 

 

 

 

 

 

Trigger warning – mental illness 

I apologise in advance if anyone doesn’t like my personal reflective posts as this will definitely be one of them. However I think there should be some value for others within my personal musings.

I think most of the regular readers of this blog will know that I have a new book due out any day now which looks at Autism and mental illness. Occasionally people ask why this blog has mental illness in the title. In fact one kind soul explained to me that Autism isn’t a mental illness but a neurological condition. I thanked him and explained that I was aware of that but that Autism and mental illness are both things I know quite intimately.

I think if I were a child in this day and age I would have gathered myself a mental illness diagnosis when I was about 10. However when I was a child mental illness had to be extremely serious in children to be treated. I got my first mental illness diagnosis when I was 21. I was told ‘Jeanette you have schizophrenia. You will have to take this medication for the rest of your life’. I could almost hear the psychiatrist apologising that my life was essentially over under his breath. In the ensuing few years I was given a bunch of different diagnoses. I had a really tough time – not just with the illness but with the attitudes of some of the health professionals who weren’t very helpful. Like many Autistic women, my Autism was missed and I got the borderline personality disorder diagnosis. Because I was engaging in anti-social behaviour as well, I ended up in prison a few times. Every single magistrate would look very apologetic and say to my lawyer ‘Thank you for showing me Jeanette’s beautiful paintings. She definitely doesn’t belong in jail but there’s no other place.’

I overcame all that stuff mostly due to willpower, motivation and the good intentions and care of my family I think. I had a reprieve from the worst of my illness for some years  – which regained its schizophrenia name tag in about 2002 and has hovered around that diagnostic neighbourhood ever since. I managed to finish my education and join the public service in a feat of extraordinary audacity and unlikeliness. I bought a house and became middle class.

A couple of years later and my world imploded. It crept up on me. I didn’t see it coming but when I was within its grasp all logic disappeared and I knew I was dead, in purgatory, punished by God. My house the enemy, my brain the enemy. I dragged myself to work because it didn’t occur to me not to. There was no help. I had ditched my psychiatrist when I joined the ranks of the affluent and comfortable. All I had was my well-meaning GP who wasn’t really qualified to help much. When I eventually tried to access mental health services – mostly because I thought there were demons in my mind – they weren’t much help either. Apparently home owning public servants don’t need public mental health services. I had denied my schizophrenia diagnosis for some years so did not share that little fact with mental health professionals. I imagine this probably made things a lot worse for me.  By the time I did finally end up in hospital, I was in Hell. I suspect that leaving it for so long to realise I needed help and then having help denied for some months made the whole episode of illness considerably worse. I first went to hospital in 2010 and my most recent admission was over two years later in 2013. I accessed every acute mental health service in Canberra.

The illness has stuck around and I am still in its grip but I have learned some useful ways of managing it. I am using one of these tonight. I find activity – particularly writing – helps me to feel better, as does helping other people.  Because, like many other Autists, I have alexithymiea (’emotion blindness’) I struggle to know when I am feeling unwell so it often creeps up on me over a few weeks and by the time I understand what’s going on it’s worse than I’d like. This has happened in the recent weeks. Because I have had a lot of episodes of illness and recovery, I am very good on insight, self awareness and strategies for coping.

In 2013, shortly after I started to recover to a point that I could avoid hospital,  I started writing a book about my mental health journey. Over the past three years this has morphed into a how to guide for Autistic people, those that love and  care for them and health professionals about managing mental health issues for Autistic people. The book is absolutely chock full of useful information, peer mentoring advice and wisdom. It stopped being entirely my baby and gained some additional ‘mums’ – psychiatrist Dr Jane Nugent and academic, Autism specialist and advocate Dr Emma Goodall.

One of my best strategies for coping with my errant mental health is to do work which helps others. The book is that crystallised. All those things I have learned over the years, all those tips and strategies for managing my health I have put into the book. So tonight I will go to bed feeling awful. If experience is to be trusted I will fee awful for a few weeks – lacking confidence, terrified of ghosts and demons I see around the house, depressed, sensitive, paranoid, hearing people insult me when I’m fairly sure they aren’t, emotional and profoundly drained. This is my life. It gives me motivation and insight but it also gives me suffering. I am OK to suffer. I reflect that my life is an unusual gift – I should have exited our beautiful and broken world many times when I was younger and didn’t. Life with mental illness and Autism can be so challenging. Things like misdiagnosis, inappropriate treatment, a lack of self awareness and just the very fact of mental illness symptoms can be overwhelming and awful. For me I manage by  combination of distracting myself, helping other people, cuddling Mr Kitty and chasing accomplishment. Others have their own strategies. It is possible to do it, to live with both Autism and a mental illness but it can be hard.

I didn’t intend this post to be a book plug but the book is very relevant to this post, so here is a link: The Guide to Good Mental Health on the Autism Spectrum

If you are dealing with this stuff, I am most definitely in your corner.

And if you are struggling with suicidal thoughts or other challenges, in Australia you can contact Lifeline – 131 114

UK/Republic of Ireland  -The Samaritans

08457 90 90 90  (UK)

1850 60 90 90 (ROI)

USA – Suicide Prevention Lifeline;

1-800-273-8255