Z is for… the end

Content warning: death

This is my last alphabet blog post (well obviously). I want to talk about death. Death is the only thing that happens to every single one of us. We are all born, we live then we die. This happens without fail.

The thing about death is that it actually isn’t fair. Some people are more prone to early death than others and there is an intersectional element to this. For example, in Australia, First Nations peoples have a significantly lower life expectancy than non-Indigenous Australians. Autistic people also have a lower life expectancy. When I was a prisoner in the 1990s we lost people every week. Life is pretty cheap in jail. Being wealthy increases life expectancy as does being white. It’s all a bit political but that is how it is. It is an area which needs to change.

I am more afraid of death than I am of anything else. I don’t like the unknown and Is worry I will go to hell – even though I am not really religious! Death is a big unknown. I hope that it just involves either going to sleep and not waking up or that people go to some nice dimension where they meet up with all the people – and cats – that they love who have passed. 

Grief is another thing which I struggle with. I have lost a lot of people and cats who I love. I don’t know what to do about this. I want there to be a telephone to heaven so I can talk to them but that is just silly. Grief is such an awful thing but it is also a beautiful thing because it is the price of love. My parents have been together for over 50 years. Their love is immense but they are getting older and one day one or other of them will die. I can’t imagine the sense of loss when that happens. They love each other so much and death of one or other of them will be absolutely traumatic but I imagine they both feel the immense grief is worth it as a price of their love. 

I often imagine when I die that I will be in another dimension but will be able to see the world and what is going on. This makes me very happy. One of my main issues with dying is that I won’t know what happens in the future and I really want to know what happens next. However I also have a fearful vision of the afterlife. I read a news item the other day about a Catholic priest who had a near death experience in which he went to hell. It absolutely terrified me as I worry that is where I am headed – if hell indeed exists. I often dream about big dead and being a ghost, destined to walk the earth alone. I told my mum this and she said emphatically ‘you will never be a ghost’ but how does she know? I have no answers for any of this.

Lead singer of the Doors, Jim Morrison, said ‘none of us get out of this alive’ shortly before he himself died. He was absolutely right. One of the intriguing things about humans its that we all know that. From a young age we are aware of our mortality but we manage tor be motivated and engaged, to go to work, to have kids, to make art and write books. Despite being aware that in 100 years none of us with be here, we still engage in life. I think that is beautiful and liberating.

And when I die I really hope I will have left a legacy of kindness, inclusion and to have made a difference and positive change.  

Y is for… Yenn. Or how we see ourselves and how others see us

Content warning: bullying

I know that I am Yenn. I am a kind and caring person. I am an out loud and proud Autistic, ADHD, schizophrenic, Non-binary and Asexual person. II am an author and presenter and I know that I have a lot to offer the world.

As an autistic person I spend a lot of time reflecting on how others might see me. This is not some quality that autistic people have from birth. Rather tit relates to not being accepted socially for a long time. When I started out life I was a confident little person who thought that they could do whatever they chose. Then this happy little Yennie went to school and encountered bullies and life was not the same. 

School bullies gave me a lot of messaging about what kind of person I was – and none of it was good! There were a few things going on which probably should have countered this but sadly didn’t. I had a stable and loving home, I was the best student in the school – every school I attended – but these things were meaningless in the face of relentless negative messaging

So what did I do to manage this? Quite simply I tried as hard as I could to fit in. I did not become adept at this until I was an adult. People now call what I was doing masking or camouflaging. I didn’t know that at the time but I knew I wanted to be accepted and have friends, Life as a teenager was pretty dire. This messaging around my apparently poor character and undesirable attributes followed me will into adulthood. I even became an alcoholic in order to be accepted by my neighbours— most of whom were alcoholics and if you want to socialise with alcoholics you need to drink a lot!

These days I still worry about how people view me a bit. Am I respectful enough? Am I ‘weird’? Will my friends all of a sudden realise they don’t like me and distance themselves from me? Most of these kinds of questions are borne out of trauma and anxiety but they are not nice thoughts. Lately I have been worrying about people judging me for being autistic and seeing me very differently to how I see myself.

These days I am quite confident and I do actually like and value myself which is nice In fact I wish that level of self-acceptance to all my neurodivergent compatriots. It has taken a long time to get there that’s for sure!

X is for… some of the things I have eXcised from my life 

I have a lot of Exes. Not ex-partners so much, more ex activities. I often joke http I have no more vices other than buying nice things for myself and some people might think I am a property-owning professional employee who has never had a day’s worries… This is definitely not the case.

I have spent over ten years of my life in institutions. (‘Ooh’, I hear metaphorical readers say. ‘Which ones??’ Well about equal amounts of prison, mental health residential services and psychiatric wards with a smattering of homelessness and crisis housing thrown in and several years in public housing. The current incarnation of Yennski is a relatively new thing and in order to become that version of me I hav needed to ‘eX’ quite a lot of things from my life.

I had addiction problems for many years. I have a major issue with cannabis abuse for many years. People might think cannabis is more of a harmless drug but for me out brought on my first episode of psychosis and my understanding is that the reason I have schizophrenia now, almost thirty years after that first episode, is almost certainly heavy cannabis use. When people say it is a harmless drug I will remind them that if you are prone to psychosis it is not a mild or harmless drug at all. The problem with addiction is that you can’t just wake up one day and decide not to be addicted. For me it was around ten years of battling my addiction before I got clean and for others it take even longer. I simply couldn’t see my drug use as being a problem even though it clearly was damaging my life. I got there eventually but it was a hard road.

Another thing I have ‘eXed’ is criminal activity. I spent over three years in jail in the late 1990s and about five identifying as a criminal. It was awful and related to masking and being in denial about my autism. I got into that lifestyle through a partner who was very dangerous but I didn’t realise this. I spent six months in prison s a result of this man and after that became traumatised and institutionalised. 

Being a criminal fulfilled some needs for me, mostly company and boundaries. I was prone to loneliness and isolation so if all I needed to do was break the law and go to court I would get several months of round the clock company! I also became terrified of life in the ‘real’ world. It was too big and scary. I am not proud of the things I did the but I recognise why I did them. Excising myself from the criminal lifestyle was at once easy and incredibly difficult. In practical terms it was easy: I threw out my address book as everyone in there was a drug addict and/or a criminal. I stopped seeing any of the people I had known in the preceding few years and I changed my behaviour. I was also supported by a mental health residential service. The hard bit was letting go of my entire world. -all my friends and people I knew and the containment of living behind prison walls. The best part of this – and the catalyst for me changing –  was my parents who always stood by me. I remember them going overseas shortly after I was released and coming back with loads of thoughtful gifts for me. It was just lovely.

So excising things from my life has ben liberating if challenging. I think for autistic folks making major life changes is particularly hard but in my case at least, very much worth it.

And Sunday 5 February will mark exactly 23 years of me not being a prisoner. I am celebrating by having lunch with some of my close friends – none of whom are remotely criminal!! Seems fitting to me.  

W is for… Work

I have a book called The Wonderful World of Work. It is my second book and is an instructional activity type thing for autistic teens to help prepare them for a career. On the morning that it was published, the publisher posted about it on their Facebook page. The first comment on my lovely new book was this: “The world of work for autistic people is horrible, not wonderful. I won’t be buying this book!” I was of course quite horrified by this reaction. I mean they had a point! Maybe I shouldn’t have written a positive book about autism and employment? Thankfully future reviews and commentaries on my second contribution to the literature on autism were much more positive but it got me thinking.

I couldn’t work for many years. I was simply too anxious and too much of a perfectionist. And earlier in my life I was in prison and psychiatric wards pretty much non-stop for five years so paid employment was a fair way away from my mind. By the time I worked out that I wanted to change my ways, I realised that work was a very important thing. I was desperate to work but it took many years to get to a place where I could work. I did what I would now call controlled challenges in order to build my confidence to work. I started by volunteering at a gallery. I really enjoyed this and it wasn’t too stressful because I wasn’t getting paid. (At this point in my journey I worried about being in paid work and costing the employer lots of money or making mistakes). After my volunteer job I started a small business editing videos for my art school colleagues. And then I got a job talking about autism to school kids which I loved – yes, I have always loved public speaking! I wrote a book in 2005 and it was published. This gave me enormous amounts of confidence and within three months of it being published I applied for public service graduate roles.

Applying for the public service was a big deal. I was fairly certain I would be refused due to my schizophrenia and my extensive police history from the 1990s but I figured that if I didn’t apply but would have won a position I would have missed out big time. However if I applied but was unsuccessful I would have lost nothing. ‘Give it a burl’ thought 31 year old Yennski and so I did and I was successful.

I am still in the public service sixteen years later. It was one of the best decisions I have ever made. I had to answer a LOT of questions about my past but I got the job and hav now been promoted twice and worked in a range of really interesting and rewarding areas. My job has funded the purchase of two properties and I am financially independent and doing meaningful and rewarding work. I absolutely love my job.

But what about my reviewer and the world of work not being wonderful for autistic people? Well they still have a point as for many autistic and neurodivergent people work is stressful and even traumatising. I have also had some of those kinds of jobs in the past. 

It is quite common these days to get people listing all the positive attributes of autistic employees…attention to detail, pattern thinking, focus, passion, loyalty, that sort of thing. I wish we didn’t need to do that because we lived in a world where employers were aware of the skills and gifts we bring to our jobs. There is still a ways to go in that area but things hav improved in the 31 years since I first joined the workforce. Employers need more uncerstnnidfng and knowledge of autism. I think it is definitely changing but it is still the case for many autistic people that their world of work is not wonderful. We also have very high rates of unemployment, underemployment and being in unsuitable work. I want to live in a world where the world of work for neurodivergent folks is a lot more likely than not to be wonderful! 

V is for the trouble with saying someone is ‘Very unlikely’ – challenging stereotypes and representation

I often get told I am very unlikely and unusual. My previous clozapine nurse would call me ‘an anomaly’. A psychiatrist in one of my hospital stays said that 3 percent of people with schizophrenia have insight into their illness and I was one of that 3 per cent. I am an ex-prisoner who has not committed a crime since 1999. If you follow the stereotypes I suspect I am totally impossible.

But evidently I am NOT impossible because I exist. However I exist in a world full of stereotypes, assumptions and judgement. I think the assumption and stereotypes hold people back and reiterate negative views about people. We can be hamstrung by these assumptions and they influence how people treat us. And the assumptions around pretty much all the groups I belong to are largely negative. 

I have recently been taking some downtime and watching TV. I like TV. It is varied and engaging and a great distraction from mental health issues. However I have noticed a lot of unhelpful representations of groups I belong to on TV. Essentially and with few exceptions, people with schizophrenia in TV dramas and movies are always violent. In fact the term psychosis when used in TV and moves is used interchangeably as a term for violence, despite this not being the case at all. People with any kind of mental illness are portrayed as manipulative and untrustworthy. And don’t get me started on depictions of ex-prisoners! You can guarantee that if a character in a movie or TV drama has ben in prison that they will reoffend and probably kill people, even if they were not in prison for violence. It absolutely infuriates me. And then there are the depictions of autistic characters, which historically have ben very unhelpful. Thankfully this has changed in recent years with greater influence form autistic advocates. There are some autistic characters being played by autistic people which is great. Hannah Gadsby is challenging stereotypes and Chloe Hayden is doing good things on Heartbreak High. We need to avoid being complacent in this space though as things can change and there is no guarantee it will be onwards and upwards into the future.

In terms of me, the stereotypes are really harmful and not just if you are actually me. For people to focus on how I am apparently unusual actually makes it harder for others in similar situations to me. We are ALL unusual if the starting point is a stereotype. We need to see people as individuals not a list of stereotypical attributes and assumptions. So stop with the telling people they are an anomaly and just see people as who they actually are. 

Yennski on their soapbox 🙂

U is for… Unsolicited advice

This one is a tricky one. Tricky because I usually dislike being on the receiving end of it but then I go and dish out advice like it’s lollies! I think everyone has experienced this. There are a few areas where this is a big thing, such as parenting, buying or renting property and health issues to name a few. I remember someone telling me I should put honey on the golden staph infection in my leg a few years ago and being very peeved!

I try not to do this as I find it infuriating when others do so for me – well most of the time. Sometimes a person will give me advice which I didn’t expect but which I actually find helpful. For kids – and some older kids – parents and older siblings are pretty good at handing out advice whether you want it or not! Managers at work can do so and perfect strangers can as well. Social media is a hotbed of free and often unwanted advice! Be it about about your choice in home decor or whether you are or are not autistic – some people on social media do seem to enjoy dishing out their thoughts on what you should do or which things your should purchase or how to live your life in any number of rather irritating ways.

There is a sort of intersectional issue here as well. I was talking with a lovely friend about this post just before and we agreed that advice given to Disabled folks often – although not always – has an ableist element to it. There is an assumption that Disabled people are somehow inferior or unable to know our own minds or navigate life (apparently) as well as our abled peers. 

The medical system is premised on power dynamics and viewing patients / consumers as needing fixing and needing a lot of advice. Because of this we can get a lot of unsolicited advice and when we do not follow it we are viewed as being non-compliant or even that we are sabotaging our own health care, even if this isn’t the case. Obviously medical professionals have experience of medical and health-related things but often their advice goes beyond the bounds of their medical knowledge and actually isn’t very helpful – or wise. I have found that having schizophrenia and being Autistic and ADHD means people make assumptions about me – what job I might do, my relationships and interest in sex, how much money I might have and indeed how well I might manage that money and where I live – and whether I rent or own property. Usually people get all of those matters totally wrong as I am not typical in how I live my life as an Autistic and schizophrenia person. This just demonstrates to me that people should hold off from the advice until they have all the facts!

I mentioned my own issues with giving out unsolicited advice. It really bothers me that I do it. I think it comes from the place of my experience. I have a VERY wide experience of life and I have learned insight and wisdom in my almost 49 years on this planet. But I ned to know that my experience is not the only experience and maybe if I suggest something that worked for me that it might not work for others. 

I find I need to pull myself up on the advice thing. If I don’t enjoy people doing it to me than I should not do ti to others. There is a power relationship here – assumed or real – and I like to avoid those where I can. So hold off on giving out unsolicited advice and if you see me doing it please remind me and I will stop!

T is for… I’m Trans enough thank you very much!

I imagine that anyone reading this blog probably knows I am non-binary / transgender. It is something I am pretty keen on getting out into the world given how mach horrible bigotry there is. What people might not know is that I am guilty of some unconscious bigotry myself…against myself!

When we talk about gender diversity, one thing we discuss is gender expression. That means how you express your gender identity to the world. Everyone has a different gender expression – not just trans folks. When I was a teen and twenty-something my gender expression was quite typically masculine. I had a shaved head, wore flannelette shirts and work boots. Bus drivers and others usually called me ‘mate’. It was many kinds of awesome!

As I grew older my expression changed. I started wearing jewellery and even on occasion wore a frock! Why did I do this? Well why wouldn’t I? My gender identity remained the same through the years from then until now and now my I think my expression is androgynous and slightly feminine – if one has to assign it a description. I am agender, meaning I am neither male nor female and have no sense of gendered identity. If you ask Yenn whether they are a boy or a girl they will say ‘no.’ and they will be right. 

 My identity is not under question but I have struggled with people telling me how I should express my identity. I had one person say I shouldn’t wear a dress because I am non-binary! Who know that my dress had a sense of its own gender?? Also, if I shouldn’t wear a dress then am I allowed to wear pants? They are ‘masculine’ after all! And really mine – and everyone else’ gender expression is not a matter for criticism or judgement.

All these people and society telling me how I should dress really did a number on me, hence the bigotry I levelled at myself for some time. I used to really worry that I wasn’t trans enough. I felt like I needed to b ‘more masculine’. Of Course this is total nonsense. If you feel trans you are trans, simple as that. I learned that if I identify as trans that that is all I need to do. There are no exams for trans identity. If you identify as trans then you are. It was quite a liberating thing to come across I must say.

And in general terms, how people identify their gender is correct. It is not up to anyone else to cast judgement or give advice. This is true of other identities as well. I am autistic enough, Asexual enough and schizophrenic enough, I do not need to justify my identity or expression to anyone. Basically we are enough just as ourselves.   

S is for… schizophrenia 

CW: mental illness 

I am 48 years old. I was diagnosed with schizophrenia in 1995 and have spent ten years of my life – over 20% or my time on this planet – in institutions of one sort or another. I have taken heavy duty medication for over 25 years. While I see my autism and ADHD as important parts of what makes me Yenn and I sometimes view them as friends, schizophrenia – for me at least – is often viewed as my worst enemy. I sometimes imagine my illness as being like someone who hates me and wants to see me suffer and fail. I would not wish my illness on anyone and if there was a cure for it I would take it and then take it again, just in case it didn’t work the first time!

I have learned to live with my illness – for much of the time. How it manifests for me is that I have episodes of mood issues and psychosis, usually treated with hospital stays and changing medication. It takes a lot out of me and is utterly terrifying. I see psychosis as being like a waking nightmare. I am inhabiting a different universe to others and everything is dark and scary. Ghosts and beliefs I am dead and in purgatory are my constant companion. The worst thing about having a level of insight is that I know something is wrong but I can’t work out how to fix it. I feel myself looking down on myself and saying ‘stop this! Just stop this!’ But I can’t use my willpower to make the illness go away.

One of the worst things about schizophrenia is the stigma and attitudes of others. Even the kinder people seem to have prejudicial attitudes around the illness. Apparently I shouldn’t be doing any of the things I do because I have schizophrenia. I work in a professional role in government administration, I write books and give talks and I own property. Many people think that those with schizophrenia can’t do those kinds of things. We also aren’t ‘meant’ to be in relationships or have kids! The stigma and attitudes in this space often hold people back from achieving things they would like to achieve. Even I thought this. I moved to Canberra in 2007 to take up a public service role. I assumed I must be cured of my schizophrenia because – to my mind at the time – people with schizophrenia weren’t public servants! I didn’t see a psychiatrist in my new home in Canberra and instead saw a GP to prescribe my anti-psychotic medication. I continued to think I did not have schizophrenia up until 2010 when I became very unwell with psychosis and spent the next three years trying to manage severe illness.

I didn’t accept my schizophrenia in any real way until about 2021, having had the same diagnosis since 1995 and finally thinking maybe all those psychiatrists saying the same thing might be correct! It is not a diagnosis I have really embraced until very recently. Now I keep meeting other people with schizophrenia – including some autistic ones – and it is a libration. The illness is a huge challenge for me but being in touch with others with similar experiences is fantastic. 

And just a couple of concluding points… schizophrenia is NOT a ‘split personality’, psychosis does NOT mean violence and people with schizophrenia are in all areas of life, they just might not tell you about it due to fear of stigma. I am proud of myself for managing challenges and doing the best I can to change the world as much as I can in the mental health space as well as the autism / Neurodiversity one. While my schizophrenia poses a number of very difficult challenges, I have learned a lot through managing it and I feel like it has increased my empathy and emotional intelligence. I hope I remain free from psychosis for as long as I possibly can.  

R is for… remembering Major Tom 

CW: death of pets

Sadly this weekend I had to farewell a member of my household – the beautiful kitty Major Tom. I only had him for just over seven weeks but he made a big impression and was much loved. Major Tom was FIV positive (the cat version of AIDS) and had a range of other health issues. He was somewhere between 8 and 10 years old and was a stray when he was rescued – firstly by Canberra Street Cat Alliance and then by me. 

Why on earth would I have adopted a cat with so many issues? Well if you met him you would understand. He was a prince among felines and an absolute  gentleman. He was never aggressive with me or to my knowledge with anyone else. He loved affection and cuddles. I had such a lovely time smooching with him and giving him pats and love. 

A Yenn does better with a cat and Major Tom was a most excellent cat but he was very sick. When I adopted him he had an infection which was treated but he did not recover. Yesterday morning I took him to the vet for the last time. I had realised he was probably going to be saying goodbye so I gave him all the creamy treats I had in the cupboard as those were his favourite – and by that time were the only thing he would eat. I had a beautiful cuddle with him before he went to the vet which lasted for over half an hour and he just purred and purred. It was like he knew we were going to be parted and he wouldn’t see his favourite human again.

The vet was lovely.  When we said goodbye I was holding Major Tom and telling him how much I loved him. He just slipped quietly away. One minute I was holding my cat and the next he was gone. Even though I only knew him for seven weeks, I really miss him. Having such a sick cat did not do good things for my anxiety and mental health but I never regretted having him. I saved him from a scary life. While I only knew him briefly it was an absolute pleasure to be his human. I hope he is in a good place wherever he is now and I am glad he is at peace and no longer in pain. When I said goodbye to him I thanked him several times. And I am so grateful to have had him in my life, albeit briefly. 

I think I will be finding myself another cat in the relatively near future. The loss of major Tom is pretty raw still so I doubt I will be rushing out and getting another cat next week. However, I know that I do better with a cat. My friend that I had lunch with today said she saw how happy I was when I adopted Major Tom and she is right. A Yennski does better with a cat. Thank you Major Tom for being in my world and giving me joy and love. I am sorry to see you go. You will be missed. 

Q is for…. Quirky! Overcoming the (perceived) need for conformity 

Content warning: bullying 

There is a saying that the coolest adults were unpopular at school. I am not sure how ‘cool’ is defined but I do agree with the sentiment. I was certainly not in any way shape or form cool at school but I like to think I am pretty cool now!

Quirky is a positive quality in my mind. Being a bit left of centre, a little idiosyncratic is a good quality. Despite my current view it took me a long time to accept my own quirkiness. 

When I was at school I would have done anything I possibly could to have been accepted by the ‘cool’ kids. Instead they – and it seems most of the other kids too – took it upon themselves to bully me and make my life unpleasant. I tried as hard as I could to fit in. I changed my fashion sense to be a bit more like everyone else’s. I lost my English accept because nobody else had one. I even changed the spelling of my name, thinking that removing an ‘e’ would make me less of a target! I never achieved coolness at school.

My wish to fit in and be how I thought everyone else was followed me into early adulthood. I masked like nobody’s business and tried to be socially accepted. I was actually quite good at hiding my quirks. I was so good I believed my own performance! I was ashamed to be my true self.

Thankfully my life changed. I matured and built my self-esteem. I also wrote a book which changed my world. The book was all about my journey as an undiagnosed autistic person so I had put my autistic experience and my true self out into the world in book form. I started to feel proud of who I was – autistic, Queer, schizophrenic and everything else that I once would have hidden in shame because it was quirky or unusual.

I now love my quirky Yennski self. I am proud of my various differences and unique take on life. I know that I have as much right to exist and thrive as anyone else does. I would so much rather be quickly than ‘ordinary’ – whatever that is! Quirky is a good quality I think. So many Neurodivergent people – including me – are beautifully,  wonderfully, fantabulously quirky. Yay to that! Let us celebrate our quirks.