Why it’s OK to love differently

When I was diagnosed with Asperger syndrome in 1994 there was a prevailing attitude that people on the Autism spectrum were incapable or love, closeness and empathy. Apparently we only formed attachments to objects and characters in science fiction. The funny thing was that this didn’t immediately make me angry, which it certainly does when people say it to me now. As a twenty year old who had already experienced all manner of abuse and trauma, I didn’t really feel much inclined to love others or form close attachments. When I looked at my childhood there hand’t been a lot of overt outpourings of love and closeness to humans either. I struggled to grieve as a child, going through the motions of behaving in the way that I thought was expected of me to avoid people thinking I was a serial killer in the making.

When I look back I think the issue around emotional attachement  was less about my Autism and more about my alexithymia. Alexithymia is a condition which many Autistic people – and others – experience whereby we can’t access or feel much in the way of emotion. When my Grandpa died I certainly missed him and wished he was still around and there was definitely grief going on but I struggled to access feelings around it. I didn’t understand this particular element of what made me ‘me’ and instead was terrified that I was incapable of emotion or attachment. When I joined the socialist party as a teenager I remember trying to make myself feel anger at some abuse of human rights or war atrocities. My socialist comrades were great at being angry on behalf of some oppressed minority but my anger was far more cerebral than visceral. I couldn’t hate some world leader with a deep passion, even if I found their actions morally or intellectually abhorrent. I thought I must have my emotion switch permanently set to ‘off’ or at least ‘very low.’ When I got older I developed a mental illness. This resulted in all sorts of emotions but I was not conscious of them on any level. I know I felt ‘good’, ‘bad’, ‘nothing’ or ‘in crisis.’ These are still my basic emotional setting some twenty years later and I still struggle to identify and access emotions.

Now people have a much better understanding of how we experience emotions and know that Autistic people are capable of love, attachment and empathy but there are still stereotypes about our apparent lack of ‘normal human emotions’ floating around. So here’s me refuting this negative business which sees Autistic people as unfeeling robots…

  • Having difficulty accessing and identifying emotions is not the same as being incapable of love or empathy. Autistic people love people deeply but sometimes it looks a little different.
  • When my eldest niece was born, I held her at one day old and was overwhelmed by love and closeness and a wish to protect her from any harm. Just because I don’t often have access to that feeling does not mean I am incapable of it.
  • Love and attachment can be based in actions and thinking, not just feeling. I spend at least 30 hours each week doing largely unpaid work to promote understanding, acceptance and respect around Autism and mental illness. I never meet most of the people who are touched by my work, it does not have much material benefit to me and it can be exhausting, frustrating and infuriating. The main reason I do this work is the degree to which I care about other people and hope they don’t experience some of the negative things I did in my youth.
  • Autistic people have long-term intimate relationships and love their partner just like anyone else does. I have many friends on the spectrum who are in long-term committed relationships or married. My friend and fellow advocate Anita Lesko just married her fiancé Abraham Nielsen recently. Not only did the couple love one another enough to take vows of faithfulness and commitment, they loved their community enough to hold what was described as the world’s first all Autism wedding. All the guests and  the celebrant were on the spectrum. Some of the guests had never attended a wedding before (as an aside, a lot of Autistic people do not get invited to weddings. I am 41 and I have only been to three weddings in my life. I have a lovely friend who is on the spectrum too and she is getting married in February and I have the privilege of attending her wedding and seeing her and her soon-to-be husband exchange vows).
  • Autistic people are not necessarily ‘cold’ parents. Our community really suffers form these sorts of stereotypes. All the parents I know who are on the spectrum are fiercely protective and loving of their children. My mum is on the spectrum and her love for me and my brother is so evident I can almost see it emanating from her when I visit her.
  • I have a number of attachments in my life which bring me happiness. When I see certain people I am delighted just to see them. Some people email me and I am excited just to see their name pop up in my inbox. I don’t think that is an example of someone who has no attachment to humans.
  • Empathy for people on the spectrum can look a little different but it is still empathy. In my case, I have two sorts of empathy. The first is intellectual empathy. This means that I will find out a person’s likes, needs and preferences and ensure that I provide them with they might need. When they tell me they are sad, I listen and ask what they need. This is not an intuitive, feeling empathy but it is empathy nonetheless (at least in my humble opinion). The other sort of empathy I experience is a little more problematic, at least for me. This is what psychologists term ‘hyper-empathy’. This means that I will pick up on other people’s feelings without them even speaking. I feel their sadness or joy as much as if I were experiencing it myself. Of course this is something of a liability in psychiatric hospitals – where I occasionally find myself. Not only am I experiencing my own crises and misery but everyone else’s as well!
  • Stereotypes are rarely helpful. All Autistic people  – like the rest of the people – are individuals. What is true for me will not be try for someone else.

If you need me, I will be cuddling Mr Kitty, who I love very much!

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This is my Dad. I love my Dad very much

 

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What is disability?

Disability – what’s in scope and what does it mean?

Apparently Autism is a disability, My schizophrenia is a slightly more complex label because apparently (and who decides these things?) a mental illness is a health condition which can be disabling but isn’t of necessity a disability. This makes me think that most of the time my illness is not disabling because I can go to work and stand in front of 1000 people and tell coherent stories illustrating messages in a meaningful way. However, when I am unable to leave the house, think I am dead and in purgatory, being punished by God for challenging him with my arrogance and the television is talking to me telling me to leave my job…well, you get the picture. When this stuff is happening I am disabled by my schizophrenia.

Gee I’m confused already and I’m the person writing this!

Many people – including me – struggle with the ‘disability’ label. Autism advocate, speaker, author and one of my role models Wenn Lawson sees Autism as a ‘diffability’ or different ability. This makes sense to me as the disability tag comes with some difficult connotations. Disability is often associated with a deficit or lack of ability to do something. This in turn often leads to low expectations of the person with the disability label. These low expectations come from all quarters – family, society, workplace, school, and the person with the label themselves. Low expectations often lead to low performance, dependence, lack of confidence, low self-worth. A person who has been seen as having a disability since childhood often grows up knowing more about what they can’t do than what they can.

Thoughts on disclosure

If a life of being told what you can’t do and having people doubt your competence is what having a disability leads to it’s no wonder that many people choose not to disclose to others that they have a diagnostic label. People not disclosing their diagnosis has a few effects. One of them is to compound a person’s self-stigma and confirm that they should not talk about the diagnosis lest people discriminate (and often people do discriminate and this can drive non-disclosure in the future). When a significant number of people do not disclose their diagnosis it can serve to make people with health conditions less visible in society. As an ‘out’ person with schizophrenia I am all too aware of this. I have met many other people with psychotic illness during my career who have come up to me and quietly said ‘I have schizophrenia. Please don’t tell anyone.’. Many pf these people are highly competent and excel in their chosen profession but I am the only person in the workplace who knows that they have a mental illness because, as a mental health advocate and ‘out’ woman with a mental illness, I am the only person they have apparently felt they could tell.

Disclosure is a really tricky concept. Many people do not disclose their health condition to their workplace because they (often rightly) assume they will be disadvantaged in recruitment processes or in career advancement and promotion.  Disclosure is an person’s own decision and is for them to make through consideration and thought. It saddens me that there is still such a prevalence of people not disclosing their health condition in the workplace due to concerns around discrimination or bias because in an ideal world, people would not be so terrified to talk about their health condition in a work context. In fact, in many ways, people who are able to disclose to their employer benefit because they can take advantage of things like workplace accommodations and adjustments. Also, for a person with a mental health issue, it is less stressful to be unwell and ask for time off if your boss knows you have an illess and how it impacts on you.

I will relate a little story, because that’s what I do. When I was 35, I had been working in my professional job in the Australian Public Service for just over three years. I got very unwell with psychosis and needed to spend a lot of time on leave and in hospital over the next few years. I had not disclosed the specifics of my illness to my manager but she did know I had an illness. I decided the best course of action would be to tell her what I was experiencing in more detail. My disclosure meant that nobody was assuming my extended time off work was for any reason other than my illness. My manager put me in touch with the human resources area and I got a rehabilitation case manager who was wonderful. The case manager helped me to access insurance I was entitled to so I didn’t miss mortgage payments and kept my little home. Being me, I used to visit my colleagues at my office every time I got a leave from the hospital because I didn’t want to get disengaged from my work. Two weeks after I returned to work from my most recent hospital stay I was given an award from my CEO because of my work in the disability network at my workplace. Soon after that I was back working full-time and (so far) my mental health has been manageable since then. Now my example of working together with managers and colleagues to maintain my good mental health is in my little grab bag of stories to illustrate living well with mental illness. I am very fortunate that I have a lot of self-confidence and value myself and so was able to disclose to my workplace.

Thoughts

  • You are responsible for how you approach, view and describe your disability, health condition, diffability, difference etc
  • Popular perception of diagnostic labels is often unhelpful and inaccurate
  • There is discrimination and bigotry all over the place. Plan for how to address it
  • Low expectations and deficits-thinking is not an accurate reflection of your capacities, but if you let it, it can become a self-fulfilling prophecy
  • Reflect on your skills and accomplishments frequently
  • Everyone has human rights. There are some rights specifically related to disability and health conditions
  • Disclosure is your own choice and decision. Consider what the pros and cons are for each situation in which you might have to consider disclosure (job interviews, starting relationships etc)
  • You have peers in the broader disability community. It can be really helpful to connect with them. You might find people with a different diagnostic label have a lot in common with you
  • For all the deficits and low expectations there are many  examples of people succeeding with a diagnosis. It can help to find a few role models. (Some of mine are Professor Temple Grandin, Dr Wenn Lawson, Glenys Purkis).

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Bullying – never, ever OK

Trigger warning

There is an article doing the rounds of the internet at the moment which talks about Autistic people ‘benefiting’ from bullying. I have not managed to read this piece of misinformation as it would probably have resulted in me throwing the computer out the window in anger. From others’ responses it seems to have been – as the title suggests – an unhelpful and invalidating look at something which most of us know innately – bullying is a bad thing for everyone and especially for Autistic people – Editorial note: I spoke with a friend who advised that the article actually wasn;t too bad, just apparently inappropriately titled so I apologise to its authors, although ti gave me the impetus to write this post

This is the first blog I have written about bullying. That seems a bit odd, even from my own perspective, for discrimination, bullying and abuse have been a significant part of my history. In fact to some degree  I still experience discrimination and bullying from certain quarters.

There is a TV programme which Australian people probably know called Summer Heights High. It is a comedy set in a high school and one of the characters – Jonah – is a bully. It is an interesting programme. I didn’t find it very funny. In fact I found it quite disturbing, but the scenes about bullying told me a lot about perceptions of the experience by some neurotypical people. There is a young student who Jonah bullies because he has red hair. It is not a one-way street in that the younger boy evidently does some things to wind Jonah up and see his reaction. I think this is what a lot of people think about bullying among young people. That is, that the victim often ‘winds up’ the bully to try and get them into trouble. The first time I saw this program I was amazed. When I was a young school student experiencing bullying, I did not do anything intentionally to ‘wind up’ the bullies. It was completely one-directional attention. I just wanted to go to classes and pass exams and read books but all the time I was singled out for negative attention, teasing and even at times physical violence, There was no sense of my doing anything to invite the attention of bullies other than the fact that I seemed different and odd.

Bullying, as I’m sure you know, frequently leads to post-taraumatic stress, self loathing and a low self esteem. The worst thing about the low self-esteem is that this can lead to lowered defences against abusive and bullying behaviour, thus leading to a vicious cycle of self loathing and continued abuse.

This is a Jeanette Purkis blog so I will need to include some points from my own experience or people might doubt its authenticity (joke). Before I went to school, I was a confident, intelligent and inquisitive person. I thought I was pretty OK in terms of my value in the world. It did not occur to me to think anything negative about myself. Primary school was mostly OK and I loved art and music and writing. When I went to high school, my world changed very quickly, Within days I was the least popular child in the school. People form other year levels singled me out for teasing and violence. Within weeks I started to view myself as different. I could see that there was a popular group or ‘normal’ students and that I was not one of these. I didn’t understand why I was hated. It was bizarre. I spent years trying to be accepted with very little success. BY the time I reached adulthood I had lost all my self-confidence and personal power. I found it almost impossible to assert my rights and spent at least five years being victimised by creepy men. This of of course  exacerbated  my lack of confidence and inability to set boundaries and say no. It took me twenty years to start liking myself again. Even now I struggle with saying ‘no’ and being assertive but I am slowly improving.

Some thoughts about bullying

  • Bullying is never OK. Never.
  • Bullying is never the fault of the victim. Autistic people do not intentionally contribute to bullying. Even if there is some dynamic going with non-Autistic people between the victim and bully, the bullying relationship needs to stop There is no benefit of it to anyone.
  • Bullies – male ones at least – are overrepresented in the ranks of the unemployed, education drop-outs and the prison population. Often they are victims of invalidating backgrounds themselves. This does not excuse the bullying but it does go some way towards understanding that solutions to bullying need to be holistic and often need to be at a social as well as an individual level,
  • Bullying behaviour – like all behaviour – is a response to material reasons or circumstances. Address the reasons and you can address the behaviour. Solutions often need to happen in consultation with the parties involved.
  • Autistic people can be bullies too.
  • Building your – or your child’s – self esteem is a great way to tackle bullying. If you value and like yourself, you are less likely to care about what the person bullying you thinks of you. In my experience, bullies tend to give up if they can’t see their behaviour having a negative impact on you.
  • Some kids will not volunteer formation about being bullied. Parents may need to ask specific questions about what is going on at school or in social media.
  • Bullying can happen in all manner of situations, from school to work, social media, in relationships and within clubs.
  • Of you are being bullied, it can be hard to know where to access help. As a first step, tell someone you trust such as a family member or your partner.
  • Often bullying is an intractable, wicked problem. Sometimes the only way to address the issue is to remove yourself from it. Change schools, leave the job etc. This doesn’t mean the bully has won, it means you are looking after yourself.
  • Bullying is Never OK. Never

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‘Impostor!!’ Why so many of us never appreciate our value

I wrote a foreword for a friend’s excellent book on Autism and sexuality and relationships recently. As I sent it off I was filled with doubt: “This is terrible. I’ve let my author friend down. Should I even send this?’ I sent it despite the self-doubt – I’d promised it by Sunday and didn’t want to submit it late. The next day I had an email from the publisher saying it was excellent and that they would feature is in its entirety and use bits of it for promotion. I was delighted so I sent my foreword to my mum and dad and told them how surprised I was that the publisher thought it was good. My mum  – bless her – responded with ‘Why would you think it wasn’t good? It ticks all the boxes…’ My mum was right of course – it was a well-written piece and it satisfied the brief for a foreword. If I spread my gaze broader than just that one piece of writing, it would appear that I am quite a good writer. I have two – soon to be three – published books, have contributed to three other published brooks, I have written for magazines, professional blogs, websites and journals. I have won poetry competitions and been a finalist in other literary contests. I spend more of my spare time writing than anything else and most people seem to love my writing. But I still doubt that any publisher would want my work. I do not deserve recognition or success, I tell myself.

I am not alone in being a somewhat successful person who questions their value. Many others seem to experience this too. There is a term ‘impostor syndrome’ which describes this experience. We feel that our success is misplaced and undeserved. It is a difficult thing to live with. In my case it has meant that I haven’t properly appreciated many of my achievements and have instead belittled them. I have invariable compared myself to people wildly more successful than me (in a conventional sense at least) and felt completely  inadequate.

Impostor syndrome is not a nice experience and can turn things which should make us proud into moments of self-doubt, Some thoughts on tackling impostor syndrome and self doubt:

  • Comparing yourself to others is rarely a good idea. We tend to compare ourselves to people we see as more accomplished than us so it becomes and uneven competition which just serves to make us competitive and stressed
  • When filled with self-doubt about your actions, try to step outside yourself and view things more objectively. If you are good with logic, use that.
  • If you can, avoid people who reinforce your self-doubt – people who put you down or belittle your achievements
  • Challenge low expectations – both hose you might have about yourself and those of others. Focus instead on things you do well.
  • Remember that you are not alone – many others are experiencing the same thing.
  • Tell yourself two positive things about yourself each day. Some people like to do this while looking at their reflection in a mirror.
  • Other people might be looking at you and seeing you as a successful and accomplished person even if you aren’t. Most people won’t tell you that they think this about you but there is likely to be a few of people who think this. If it helps, you can imagine others being impressed by you and what you do.
  • The range of things which society considers impressive does not encompass every impressive thing. You are almost certainly doing things which are amazing, but often uncelebrated, like raising kids, managing a significant illness or disability or caring for elderly relatives.
  • Every time you find yourself doubting yourself counter it with a positive statement. These statements can be ones you make up which work for you.
  • Look at where you were in the past and see where you have got to. It is likely that your journey has taught you some valuable things which add to your understanding of yourself and the world. Regardless of what this involved, it is almost certainly an achievement worthy of positive feedback.
  • If people compliement you for something you have done well, try to accept it. Even if you don’t agree with it, at least say ‘thank you.’

It gets tiring trying to constantly banish your self-doubt demons, In my case I do it by trying to achieve more successes constantly. After doing this for over fifteen years, I have a lot of accomplishments but I am not content and I still question the value of my work. Usually I give an example of how I have overcome something or what I have learned in these posts. In this blog post I am urging you to not use my example. Yes I am successful, I have achieved a lot but I can’t see any of it objectively and am still insecure and negative about me. Please use my example as what to avoid. I do love my successes but it would be lovely to sit back one day and genuinely reflect that I have down enough, I have nothing to prove and drink a cup of tea with no need to succeed or make an impact or anything like that.

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Nope. I can’t write at all! Silly self-doubt

My favourite thing… Movie night

I was in the supermarket this afternoon, gathering supplies for an event which takes place every two or three weeks in my small but comfortable home: movie night. As I saw my groceries lined up at the checkout, I realised they were all blue and yellow – from lemonade to cat food. I remarked upon this to the woman behind me. She evidently thought my brain was broken but was friendly nonetheless and commented on my bright jewellery (and yes, I had that lovely moment where it becomes obvious that Jeanette of the feeble brain is also Jeanette of the high paid job, responsibility and good taste in ‘nice things’. That moment never gets old). I mentioned to her that the soft drink and chips and things were for movie night. And that they were.

Everyone in my life seems to know about movie night. Every second or third Friday I will announce to my colleagues at work that I am taking a flex afternoon because I have to go home and prepare for movie night (read put away clothes and clean stuff).

Movie night is perhaps my favourite regular event. It has grown organically over the past twelve months or so into what it is now – a gathering of amazing Autistic woman  – and one amazing teenager – to watch movies, eat take away and share our thoughts, concerns and lives with one another. We are always completely ourselves. There is no pretence, no bickering or meanness. We support and care for one another. There are currently six of us who attend, including me. Whimsy Manor is…well, cosy I suppose, so we fit quite snugly and distributing the pizza and drinks can be a logistical challenge but it doesn’t matter. I have the gift of a flat not filled with any housemates, parents or partner and I love to have others here. I often wonder how my guests feel about visiting because I am certainly not meticulous about cleanliness. I think the last time I dusted was in about 2012. I do clean the toilet but there is often a smattering of cat little which Mr Kitty does manage to get all over the bathroom floor and which it impossible to completely capture while sweeping.

Movie night started with myself and one other, a long-term friend who regularly does battle on social media with anti-vaxers and other unsavoury types. I admire her because I find confrontation very stressful. I just provide examples and thoughts mostly. The two of us watched the first two Hobbit films and then went to the movies to see the final one last year. We then got onto the Lord of the Rings films and I think it was at that time that I invited another friend. Before long there e were six of us taking a few hours out of the wider world to spend in each other’s company.

There is a mum and daughter who come. I met them through the women’s group I facilitate for Autism Asperger ACT. The mum is very sensible and practical and very kind and thoughtful. Her daughter is uniquely talented, a great artist already and always keen to do some show and tell. I was delighted tonight when she offered to make me one of her beautiful hand-drawn bookmarks and asked what sorts of characters I like (Dr Who and Star Trek plus Mr Kitty and flowers was my response).  I love show and tell too, in fact I am often found reading out one of my latest articles or poems. I even practiced my resilience talk for the Asia Pacific Autism Conference at one movie night. I should probably lay off the Jeanette show and tell.

More entertaining than the movie at times is my little furry fella, Mr Kitty. Everyone loves him and he loves everyone. One of the women is as much a fan of the feline species as me and Mr Kitty has taken a particular like to her. She plays with him and he smooches her and her backpack. He also likes to get into anyone’s handbag and come up and sniff them to enjoy the scent of cats, dogs or guinea pigs. He really is the star of the show (and he knows it),

Movie night was not really my idea. It is something which seems to have happened quite organically, driven by all of us (and probably Mr Kitty too). I just love it because everyone is just themselves and there is no judgement. Movie night is the highlight of my fortnight. I remember a few months ago I was attending a dinner at Parliament House (incidentally with one of my movie night friends).  At the end of the same week, movie night was on. I looked forward to movie night much more than I did going to a dinner at Parliament. I’d pick my Autie friends over dinner with a bunch of dignitaries any day. I can be completely myself at movie night, surrounded by real friends who value and care for one another.

So we just finished watching the Back to the Future films. There was some talk or Star Wars for our next series which sounds good to me. Next movie night will be a birthday celebration for our youngest attendee. Movie night demonstrates to me the value of my peer group. And is also demonstrates that whatever idiot said that Autistic people don’t want friends or are deficient friends or any amount of rubbish like that has obviously never been to movie night at Whimsy Manor.

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The star of the show…

Abuse is abuse

Trigger warning – abusive things happening to me in the 1990s

There have been some high profile cases in the media of late around restraint of Autistic school students. Obviously this is a terrible thing which should not happen. However, a lot of the discussion is around who was responsible? There is a lot of apportioning blame and working out who to pin the bad practices on – the school, the funding body, the individual teachers? I honestly don’t know who to blame in these cases. I was not involved in the decision – either as the person deciding to restrain kids – or the person on the receiving end of the restraint. I honestly don’t know where to point my finger, I will never know what happened or why.

I do have some experience which informs thought on this topic though. I have been on the receiving end of restraint in a number of settings (although not in school). The me you see today was not always positive and proactive, employed and engaged in life. Instead I was a broken, angry, negative ‘no hoper’, prone to spending months in psychiatric hospital and years in prisons. I was not even the usual miserable prisoner of denizen of the hell of the high dependency unit in the psych ward,. I was in fact probably the person the staff of these places would be betting would be first to die. I was self-destructive, had zero self awareness and had no fear of death or injury.

My first experience of restraint came when I was 22 and in what was probably the most horrendous psychiatric hospital in Australia, the medical staff headed up by a formidable and arrogant psychiatrist who had no experience of women with a diagnosis of Autism. He had treated a couple of young men on the spectrum but was flummoxed when faced with female, Aspie (and at the time very depressed and psychotic) me. He deiced I mist have borderline personality disorder, presumably because I was self-destructive and had identity issues. He stopped all my medication for reasons best known to himself. Of course the result of this was that my already very shitty life got even worse. I was looked in the seclusion room with the small window papered closed. I couldn’t see out. I was there for a week. I was by myself, totally psychotic and locked in a tiny room. I didn’t see humans very often, When they came in I would assault them – not really wanting to hurt them but to try to get past them and into the rest of the hospital with other people. I regret to say that I behaved like an animal, but then I was caged like one, wasn’t I?

There was no help in this place. My misery was met with institutional violence. I had never felt more alone in my life. And really, essentially I was alone. Of course there was no escape from the hospital and I was sent from there to prison after assaulting the formidable chief psychiatrist.

Prison was even worse than hospital for at least a hospital claims to be there to help patients. Prison makes no pretence about its role as a brutal institution. As a very unwell, Autistic prisoner my life was about as hellish as it has ever been. I had meltdowns when I was stressed and assaulted staff. After some tweaking of the management regime for ‘Purkis’, this resulted in  five days in what (for reasons lost in the mists of time) was called the ‘wet cell’. This was where people were kept under observation if the staff thought they were suicidal. The light was on 24/7, the ‘bed’ was a concrete slab with a canvas ‘blanket’. I had to wear a canvas nightie with no underwear and there was a camera watching every action I took, including using the toilet. If I was really lucky I would be let out to have a shower once during the five day stint in this awful place.Of course the officers would watch me while I showered. I got used to this over time. Sometimes the prison staff would play a fun game and turn on the radio in the cell and leave it on all night. Between the loud radio and the fluorescent lights I didn’t sleep all night. If you want to see powerless, come and visit twenty-soenthing, prisoner Jeanette. I didn’t count how many days I endured this judicial torture bout it would certainly have equalled months of my life.

Whenever I was ‘released’ into the prison from the wet cell I was delighted. But I was still in a  tiny cell most of the time. I would pace up and down the five or so metres of my cell in a vain attempt to get exercise. I had a radio as my only home comfort and I tell you, the Triple M rock music station must have kept me sane enough to have taken the path I did when I left prison.

For me, these experiences are still difficult to think about, but that is my personal experience of restraint and being powerless. I don’t believe anyone should have to experience powerlessness like that and particularly not children. I don’t have any solutions. I don’t know how you stop people wanting to disempower and control other people. It was hard to share this but I think it needed to be written. If you need me I will be cuddling my kitty. Thank you for reading this.

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I couldn’t really find a suitable image for this one so this will have to do…

Those good old protective factors again….

As you may have gathered, my mental health has been misbehaving of late. The funny thing though is that this period of brain misbehaviour is very different to other periods of illness from my past. I thought it might be worth looking at those protective factors which are in place for me now which weren’t there in the past. To do this I will compare three scenarios:

Scenario 1 – 2001

I was a recently-released ex-prisoner who was trying as hard as I could to make my life more positive. I had enrolled in university at the start of the year and discovered that I was a very good student. I found out that there were things called high distinctions and I was keen to gather some more of them at assessment time. I decided that a job would also be a good thing to have given that my university colleagues were all doing part-time work and earning much more money than I did. I got a job washing dishes at a restaurant but it was never going to work. I was so stressed about my job and terrified of making a mistake that it resulted in a fairly unpleasant mental illness episode. I ended up in hospital and had to quit the job and take time off uni. The support I had was the staff and residents of a live-in mental health program where I was staying. That was pretty much it. I suffered immensely for the next couple of years, begin haunted by intrusive thoughts of violence and self-destruction and strange thinking and extreme anxiety. Time took its course and I recovered. I stayed at university during this time and some years later gained a Masters degree.

Scenario 2 – 2010

I was a published author, Autism self-advcoate and Government official with a Masters degree and a newly-purchased apartment. I thought I was invincible and cured from my mental illness. I experienced a number of anxiety-provoking events whig led to me being constantly stressed and at a high state of anxiety. This went on for some months until I started to get quite unwell. Quite unwell is something of an understatement. By the time I sought help I was thinking I was dead and that I was being punished by God. I thought there was a ghost in my house which was trying to kill me. I was too frightened to use any of the appliances at home and was only eating stuffed vine leaves from a can and pistachio Lindt chocolate. Needless to say I spent the next few years in and out of hospital. The protective factors I had at this point were my job, my family and some good friends, my own attitude and confidence and the fact that I had moved from being a socially devalued person to a middle class, respectable and respected person. It took a long time to recover but I stayed employed and I kept my house and I built my author and speaking profile very quickly after getting over the worst of it (my talk for TEDx Canberra happened six months after my most recent hospital stay).

Scenario 3 – now.

I spent eighteen months begin driven and  working on my Autism world work all the hours that God sends. A lot of people told me that I was working too hard and I ignored them, saying things like ‘but I enjoy this work!’ My illness started some months ago and I looked at changing things and seeking help as soon s a noticed. I kept getting worried about events I was attending and speaking at. I thought I would be unable to speak at things or that I would end up in hospital when an event was on. I worked through all manner of unpleasantness and misery but I stayed quite confident that I would be OK. When things got really bad I made an emergency appointment with my psychiatrist who increased my medication. This seemed to help quite a lot.  When I needed someone to talk to I did. I cuddled my lovely black cat, Mr Kitty and felt his deep purrs radiating through my chest and felt the healing power of them. I stopped working when I was stressed and watched a movie. I decided to take things one at a a time and not worry so much about the future. I was also incredibly blessed to have my wonderful Facebook family who always give me support and kindness. I have my various projects to inspire and engage me – books and talks and things. I have the wonderful protective factor of my paid job to help keep me focussed and take my mind off any nasties.

As far as I see it, the main protective factors are I have now which I didn’t have so much in the past are:

  • Being in a ‘socially-valued role’ – that is, having a position in society where I am respected and socially included
  • Having confidence that I can overcome difficulties
  • Being part of a peer group which respects and supports one another
  • Having a little black furry kitty person
  • Knowing when to access help and where to find it
  • Building self-awareness
  • Taking control over my life and my health
  • Having a job which is supportive and doesn’t contribute to any difficulties with my health
  • Being engaged in supporting other people which puts my own issues into perspective
  • Willingly accessing family support
  • Being engaged in activities which I feel are meaningful
  • Having positive feedback about my work from people I value (i.e. Autism world peer group)
  • Liking myself
  • Being strongly focussed on the future and positive things
  • Having so much useful ‘stuff’ to do that thoughts of self-destructive behaviour don’t stick around too ing

I hope some of those protective factors are helpful for you as well. Just keep going and remember how amazing you really are. If you are having a tough time (and live in Australia) and you need to talk to someone – you can call Lifeline on 131 114.

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My favourite protective factor, Mr Kitty