Seeing autistic communication as a cultural difference

I like to imagine that autistic communication is similar to a cultural or linguistic difference. Here’s how it goes…

Imagine you move to another country. You learn the language and the customs but it never really sits well with you. You manage OK – hold down a job, have some friends, but you never really feel at home. Then imagine a friend from your home country arrives. You speak your language with them and you know all their ‘in’ jokes. Their customs are your customs. You love spending time with your compatriot and feel 100% comfortable in their company. It is nothing like interactions from those in your adopted country.

Now imagine there are two people – one speaks German and the other speaks French. Most other people speak German and when someone speaks French they assume that they are speaking German badly rather than a totally different – and equally valid – language. This causes no end of misery and confusion for the French speaker who not only struggles to understand the German speakers but also struggles to make themselves understood!

Both of those scenarios relate to differences between Autistic and neurotypical communication. As autistics, we are like expatriates in a strange land. We are like French speakers when everyone else speaks German and has no idea that French is a seperate and equally valid language. However, autistic communication is definitely different not less, as these examples demonstrate. Neurotypical communication is not preferable or superior to autistic communication – it is simply different. We don’t need to be forced to speak neurotypical. Instead we need to be accepted and understood with our autistic communication and language.  These examples also demonstrate why so many autistic people love autistic space (where most or all people in a group are autistic). And how nice is it when neurotypical folks recognise this and try to learn the autistic language and customs!   

Mini blog #2: Sensory issues

I posted a Yeme once which said ‘If an autistic person says something is too loud, too bright or too smelly then it is.’ I stand by this as sensory issues can be a huge challenge but one which many people have no idea are a ‘thing.’

Autistic people often have sensory sensitivities. We tend to experience sensory things to a significantly greater degree than others. For me I have both positive and negative sensory experiences. The negatives ones are related to noise (unexpected loud noises, balloons popping and things beeping are a big issue). I also struggle with certain smells. Many autistic people are sensitive to smells that other people find pleasant, like perfume. I don’t mind perfume but toilet smells, red wine and the smells of foods I have a strong aversion to are a big problem. I also struggle with the sun! I absolutely love Brain Cox’s videos but he is alway using the solar flare effect and it makes me want to throw something at the TV! It render the show almost unwatchable at times.

Anyone who follows me regularly will know about my positive sensory things… anything shiny or sparkly makes me squee with joy! I love sequins and shiny jewellery, foil and glitter, coloured lights and colourful art and anything else bright coloured and shiny. Sensory joy is a wonderful thing.

Most people who have trouble with sensory things can find themselves being invalidated and dismissed, which is never OK. Sensory issues form part of accessibility. Similarly to the need for physical accessibility, workplaces and buildings need to be accessible in terms of sensory issues. When people are designing spaces they need to talk to people with sensory issues to ensure buildings are accessible for people with sensory needs. 

While sensory processing issues are not the exclusive domain on autistic folks, they are something most of us experience, so supporting sensory inclusion and accessibility is a great way of supporting autistic people. Remember, just because it isn’t real for you does not mean it isn’t real form someone else.  

Mini-blog: Why we are not ‘all on the spectrum somewhere…’

The statement ‘Oh but we are all on the spectrum somewhere’ is a big problem. I was giving a presentation yesterday and one of the organisers said this to me. I gently advised them that this is in fact was not true and that many autistic people find that attitude dismissive, unhelpful and offensive. The person apologised and told me how happy she was that I was presenting at the event and thanked me for my insight. Hopefully she won’t say it again but as micro-aggressions around Autism go it is a pretty prevalent one.

‘We are all on the spectrum somewhere’ simply isn’t true. Autism is a specific condition. You either are or are not Autistic. If everyone was on the spectrum somewhere there wouldn’t be a spectrum because we would all be Autistic. We would just call it “being human”. 

The sentiment ‘oh but we are all on the spectrum somewhere’ minimises the experience of Autistic people by essentially saying “Oh but everyone’s a bit like that…” It is a really unhelpful attitude. Would you tell a Deaf person “Oh everyone’s a little bit Deaf”? Or a trans person “Everybody is a little bit trans”? Of course you wouldn’t so stop saying it about Autism! I will always challenge people when they come out with this one. It usually stems from ignorance more than intentional ableism but still needs to be challenged. 

‘I’m not pregnant, just fat!’ Thoughts on weight, health and fat shaming 

I recently lost almost 40kg. People keep telling me how wonderful I look and complimenting me. While this is nice it has me thinking about weight and how we tend to view body size in our society. The idea seems to be that being fat always equals being unhealthy plus there is a lot of judgement involved in relation to weight and body image. There is often an assumption that being overweight is the result of being lazy or ‘letting yourself go.’ In my experience my weight gain related to trying to be healthy rather than unhealthy as it was the result of taking medication to manage my schizophrenia. If I didn’t take the medication I would ahem been a lot less healthy than if I did! I wonder how many larger people there are who take psychiatric or other medications which make them gain weight? 

Another issue around weight and attitudes around it involves gender. Women seem to be more criticised around their weight than men, although men face can judgement too. When actor Rebel Wilson lost a lot of weight recently media outlets were more focussed on it than they were about a hostage situation Rebel was impacted by at a similar time to the weight loss. Apparently weight loss for a female celebrity was of more importance than them being victimised overseas. Why is weight loss even noteworthy? If someone in the public eye did something else to boost their health is would not be newsworthy but losing – or gaining – weight is apparently worthy of headlines. 

Larger women can also be on the receiving end of some predatory behaviour. I knew a man in the past who was in the military in another country. He told me that his comrades and he would go to a bar and try to pick up the largest woman there and take them home. At the time he told me this I myself was quite large and was horrified by what he said. He lost my respect at that point but apparently this sort of thing goes on all the time. It is not at all OK to objectify anyone like this.

The reason I lost weight was part due to style part due to health. I was never ashamed of being large but it had some health implications and I couldn’t fit into the sorts of clothes that I wanted to. I do not judge people on the basis of their weight and I did not judge myself. It makes me sad when people get caught up in thinking about weight – particularly others’ weight. For me I feel healthier, have more energy and can do things I struggled to do and I am proud to have been able to lose weight as it was difficult but I loved my large self and I also love my smaller self. 

I think that weight is something of a feminist issue and I think that thoughts and feelings around weight can be dangerous. Eating disorders are among the most dangerous medical conditions out there. I don’t think an eating disorder is just about weight on its own but I do think a lot of the societal expectations and stigma around being larger can contribute to mental health issues including eating disorders. It is not ever OK to fat shame people. Even the notion that weight and health are linked can be problematic. Larger people face a lot of discrimination and judgement related to their weight apparently being detrimental to they health but in fact being overweight does not always have an impact on health. And other activities which are bad for health like smoking or excessive alcohol use do not seem to be judged in the same way that being overweight is. And some people are more susceptible to weight gain and even of they don’t eat a lot of sugary or fatty  foods they gain weight. I am one of these people due to my medication for schizophrenia. If I ate what many thin people eat I would be very large so in order to stay the weight I want to I need to be very aware of what I eat. Most people do not  seem to be aware of this.

Being large should not be a reason for judgement or prejudice. We are all different body shapes and sizes and that is OK. Being healthy is important but weight doesn’t always mean anything in relation to health – you can be large and healthy or small and unhealthy. When I was 21 I had a major drug issue. I was tiny – 45kg. This was probably the most unhealthy – physical and mentally – than I have ever been before or since. Now I am 92kg and feel really good. Also another person’s weight is really nobody else’s business. So reserve the judgement as  it doesn’t help. I have been subject to fat shaming in the past and it was very unpleasant and mean. I will end with a typically Autistic Yennski response to a thoughtless comment… When I lived in Melbourne in my late twenties I got on a tram and a woman asked me ‘when is your baby due?’ I said ‘Oh, I’m not pregnant. I’m just fat!’ The woman didn’t know what to say and I thought it was totally hilarious! It’s true. I wasn’t pregnant, just fat and that was perfectly OK. 

Gender diversity – a liberation 

I imagine anyone who reads this blog knows I am non-binary  / transgender. My gender – like most people’s gender – is a key part of what makes me who I am. I am out loud and proud and I love my gender identity. It is one for my favourite Yennski attributes. I have been out since 2018. I changed my name in 2019 and have not looked back since!

Sadly not everyone shares my enthusiasm for my gender identity. The world is full of nasty bigots who would hate and invalidate me for the crime of daring to exist. As soon as I came out I was faced with a barrage of bigotry and people judging me. I lost a number of ‘friends’ – but thankfully I gained some new – and more genuine – friends. 

Most people aren’t bigoted but many need some education. An example is my pronouns. I have they / them pronouns and have had these since about five minutes after I came out. My pronouns denote how I want people to understand me. Pronouns are very important but some people struggle with this. In fact I struggled with this at first. For about three months I misgendered myself more often than not because I had she / her pronouns for the preceding 43 years and it took some getting used to! Misgendering  falls into a few categories, There are people who always get it right. I have a friend like this and I am yet to hear her misgender me. Then there are people who try but get it wrong more often than not and then give a genuine apology. Then there are people who get it wrong and treat me like I am being difficult and then there are bigots who intentionally get it wrong and tell me that they won’t ever use my pronouns. The most common one is the one where they get it wrong then apologise. I don’t mind this at all. As I said I got it wrong myself for a long time so I understand. I will now gently remind people if they get it wrong which usually goes off well. I got so frustrated a couple of years ago that I very briefly considered changing my pronouns back. I then realised that doing this would be negating my identity and I would hate myself forever if I did this. So I am left  with reminding people not to misgender me!

One issue I get is where people assume I am female. My gender expression is slightly more feminine than masculine but I don’t think I look somehow ‘girly’. I think a lot of people have two ‘boxes’ in their mind for gender – the boy box and the girl box. Everyone apparently has to fit in one of other box, even if they don’t – like me. So people squish me into the ‘girl’ box because that is the only option available in their mind. It means I face a lot of erasure and get called ‘lady’ of ‘girl’ – which I utterly hate! I want people to understand that there are definitely not just two boxes for gender and that I am DEFINITELY not a girl / woman! I guess I should be grateful that these people don’t attack me physcially. I have a number of trans friends who face violence from strangers due to ‘looking’ trans. People make me very angry and sad sometimes.

My name is a key element of my gender identity. I changed my name in early 2019 and changed it legally a couple of months after that. When I came out in 2018 I wanted to change my name but I couldn’t come up with a suitable name. I decided to leave it up to my subconscious to find a name. Some months later and I was at work. The name ‘Yenne’ came into my mind. I wrote it down and thought it wasn’t quite right. I then wrote ‘Yenn’ and knew in that split second that this was who I was. When I unpacked it I realised that to Yen in poetry is to yearn. Not only am I a very self reflective person, I am also a published poet so thought this was fantastic. It also had a few letters that were also in my dead name so ti was a nod to the past. And it was a genderless name in Australia. I love that if I am in a doctors office and the doctor hasn’t met me that they come out and look at everyone thinking ‘who is Yenn?’ because it is not immediately obvious who I am! I really dislike my dead name. It is not me. It was never me. I am, was and always will be Yenn. I embraced my name instantly. Even my parents get it right and they gave me my dead name! People often say ‘nice name’ to me and it is a nice name.

I am a reasonably high profile transgender person in the neurodivergent community which is mostly quite lovely. Other transgender autistic people thank me for my work and tell me that things I have written have helped them, which is lovely. There are a lot of neurodivergent transgender people. I go to a trans meetup in Canberra and one time the convenor asked people to raise their hand if they were neurodivergent and most of the attendees raised their hands! We are a community and it is a community I feel proud to belong to.

My name, my pronouns, my identity, my community? These are a liberation. I am free. 

Forging an identity 

All of us have an identity, Identity relates to the things that make up who we are. Identity is something which we can take with us throughout our entire life or something we acquire in our journey to navigate the world. Identity often relates to personal characteristics and is bound up with intersectionality and what demographic groups we belong to. Sometimes we are acutely aware of our identity and sometimes we do not realise the elements of our own identity. 

We all identify differently. Different parts of us are more or less important to our sense of who we are. For example I place a far greater weight on the non-binary part of me than I do on the part of me that relates to having been born in England but for another person their British identity may be more important to them than their non-binary one. 

The main things I identify with are:

  • Being Autistic
  • Being non-binary and transgender 
  • Being a member of my family – parts of my biological family and my family through choice 
  • Having schizophrenia and anxiety 
  • Being Asexual 
  • Being an author and advocate 
  • Being a Government official 
  • My ADHD 

Like many people, my identities have changed over the years. I rejected my autism and schizophrenia diagnosis for many years so even though I was still Autistic and schizophrenic I did not see either condition as being part of my identity but now I do.

Many of my elements of identity relate to groups that face disadvantage and to which the notion of pride is often ascribed. My gender and sexuality identities come with a fair whack of pride attached as do my neurodivergent identities. Pride is a way that groups who face disadvantage fight for respect and recognition. In this context pride is a great thing and I think should be encouraged and supported. 

Identity is related to the notion of privilege and intersectionality. Civil rights activist Kimberle Crenshaw coined the term intersectionality. It essentially means that people can belong to more than one group that faces disadvantage and that this compounds the disadvantage. For example some of the intersectional groups I belong to are neurodivergence, mental illness / psycho-social disability and being Asexual and transgender. Intersectionality relates to membership of each group compounding or multiplying the disadvantage a person faces. For me, claiming and embracing my intersectional identities makes it easier for me to understand the difficulties I face and counter these through activism and advocacy. It also means I have some great friends who also belong to a bunch of intersectional groups and as such share some fellow feeling and common experiences with me.

Identity around being part of a group that faces disadvantage can be liberating an involve a strong sense of pride and engagement. I feel a lot more passionately about my gender identity, my sexuality and my neurodivergence than I do about many of the other aspects of being me. I

I am now very confident in my identity. I feel like my identity is hard fought and won and not just the parts of my identity that relate to belonging to one or other disadvantaged group. My autistic identity is something which I had to grapple with myself to accept. It took many years to be a proud autistic person and when my journey to that particular identity began then most people saw autism as a negative – including me! These days autistic identity is a ‘thing’ and there are a great many proud identifying autistic people out there. I can credit my own path to acceptance and my autistic pride but also the work of other autistic advocates, authors and my autistic friends and peers for basically changing my world – and changing the wider world too. In terms of gender and sexuality my path to my positive, out loud and proud identity was quite a long and winding one. It took a long time for me to discover I was non-binary / trans and even longer to work out I am Asexual but as soon as I figured these things out they became a big part of my identity and something I am really immensely proud of.

Identity is a big deal. We all have different elements that make us who we are. Identity is a lifelong journey. I am learning about my identity as time goes by and I am building my own understanding  of my identity. I think it is an amazing thing to learn about who I am, what makes me ‘me’ and where I feel I fit in the world. One big yay to positive identity!

Getting help for my anxiety – and some useful strategies

I once gave a presentation at a conference. I said that ‘all autistic people experience problematic anxiety.’ Someone in the audience challenged me, saying that he worked with some autistic people who did not experience problematic anxiety. I acknowledged that I should not have made a sweeping statement but I actually do suspect all – or almost all – autistic people experience problematic anxiety. I certainly know that I do.

I started noticing my anxiety when I was 14. I felt nauseous all the time and interpreted it as a digestive issue but hindsight tells me out was physical manifestations of anxiety. In my adult life anxiety has been a big issue, mostly because if I get extremely anxious for a few weeks or more it will turn into psychosis. In fact every psychotic episode I have had has occurred after I have been very anxious. What I would give for my anxiety to not turn into psychosis! A psychotic episode results in me having to go to hospital, sometimes for months at a time, and to take lengthy periods off work. You can no doubt understand why I get anxious when I start to get anxious! Anxiety can also result in suicidal thoughts – and actions – for me so I try to avoid anxiety.

I now take medication for anxiety which is extremely helpful so big yay to that. This medication was started last year and I have been troubled by anxiety for, um 34 years. So why did it take so long to get appropriate medication and treatment? One reason was my difficulty in being assertive and also articulating my feelings to medical staff. Like many autistic people I have alexithymia (or emotion blindness) making it hard for me to pinpoint my emotions. Another issue is that most of the time I have been accessing treatment I have either been doing OK or I have been psychotic. In both situations I struggled to express what my needs were around anxiety. If I am seeing my psychiatrist in the community I feel OK so neglect to ask for help for anxiety and at the other extreme, when I am psychotic, I have no idea what is happening and am terrified and it is very difficult to explain my emotions or concerns.

So, apart form the wonderful and effective medication I have had for a year, what do I do to address my anxiety?

  1. My anxiety has a strong physical component. I get butterflies in my stomach and tightness in my face when I am anxious. This means that physical strategies are going to address help my anxiety. Things like deep breathing are really helpful. 
  2. Distraction. This is my number one, go to mental health strategy. It involves focusing my attention on something other than the anxiety. My favourite distractions are work, watching TV, spending time with friends and writing. Everyone has their own distractions that work for them. 
  3. When I was in a residential service for mental health last year my worker gave a nifty strategy. This was to imagine thoughts which provoke anxiety as being a visitor at the door. You can’t help them being there but you can decide whether or not to let them in. I tweaked this by imagining that the visitor is Donald Trump. There is no circumstance in which I would ever let him in! I now think to myself ‘Trump’s at the door!’ when anxiety takes hold. I find this works well.
  4. A gratitude journal. This one also works for depression and I really like it. You basically write down two things you are grateful for each day. I will note that this is less likely to work for someone who is extremely depressed and may be counter-productive in that situation so only use it if you find it helpful.
  5. Medication. Medication can be really helpful. There are lots of different medications for anxiety. Medication is not for everyone but it can make a big difference. It can take a few attempts to find an effective medication.
  6. Mindfulness. This is a sort of meditation practice which can benefit mental health. Some autistic people don’t like mindfulness and find it doesn’t help but I quite like it. The concept behind mindfulness is to live in the moment. Don’t dwell on the past or worry about the future but focus on what you can do in the here and now. There are lots of different mindfulness techniques. I use YouTube videos of pretty scenery, birds or the ocean set to music. I lie back in my papasan chair and focus on the images. It works really well.

Finally getting help for my anxiety was life-changing. I do wish this had happened 34 years ago rather than 1 year ago. Imagine what my life would have been like then! I am grateful to now be living in a world which is much less stressful though. I posted yesterday ‘I like this less stress-y Yennski” and I really do. Anxiety can be horrible and debilitating. I hope the strategies here are helpful for you too. And look out if Trump is at the door!! 

My accommodation journey – from prison to crisis housing to ‘Chateau Overachiever’

Content warning: reference to suicide, prison

Accommodation has been on my mind of late. I am about to purchase my second property so have been reflecting on my history of housing. I am now extremely privileged in terms of income and have a well-paid secure job – the kind of thing that banks get excited about! Most people with the sorts of experiences and issues I have are unable to even consider purchasing property so I am very lucky indeed. I don’t want to reflect on how unusual I am here – something I could definitely elaborate on but which probably wouldn’t be very interesting! I want to look at my history of difficult housing situations. 

Many autistic people are in insecure housing and many people with schizophrenia are too. And just to clarify – schizophrenia and autism are my two main ‘diversity’-type groups which often come with financial disadvantage attracted. 

When I was younger accommodation was a huge issue. I actually belong to a third group that has significant financial disadvantage attached and that is ex-prisoners. These days membership of that group has little to no impact on me as it was between 23 and 28 years ago but at the time there was a lot of financial trouble and associated homelessness in my life.

I moved out of home when I was 17. I shared houses and because of my autistic take on socialising not being understood and the difficulty I had in being assertive and raising issues with housemates I went through a lot of share house situations. Then when I was 20 I went to prison and spent the next five years in and out of institutions. I lived with my parents for a year and then descended into homelessness and incarceration. When I applied for public housing they categorised me as the highest priory as I had lived in 40 places in the preceding few years!

I remember living in a boarding house in St Kilda in Melbourne. My best friend in the house was a sex worker and heroin user. We would vent about the other women in the house who we found annoying. I hated living in this place but I had no control over where I lived. I was too poor to take out a private rental so lived in supported and crisis housing. From the boarding house I moved to a property owned by mental health charity the Richmond Fellowship. I stayed there for just over two years. I liked this house and made friends – and a partner – from among my housemates. From there I moved to a transitional apartment while I wanted for my public housing property to eb available. This apartment was amazing. It had two bedrooms and a bright green carpet! I would have happily lived there forever but it was only a stop gap before I got my public housing flat.

I thought I had done something clever when I applied for public housing. I didn’t want to live in a big complex of public housing flats. I had a friend who had got her public housing application limited to properties of three floors or less due to her mental health and suicide risk. I figured this was a great idea so I added that caveat to my own housing application. I figured I would get a public hosing flat in a block of private rentals. I would not have to live in the ghetto! Sadly they found me a flat in a big complex but the highest was there floors! Because I was on the priority list I could not decline the offer of this place.

I hated my flat from the moment I saw it. There was damp running down the walls. My neighbours were mostly people with alcohol and drug issues. I was still desperate to be socially accepted so I became an alcoholic myself in order to fit in and win the approval of my neighbours. I lived in this apartment for four years. One of my neighbours was a stalker. She was awful and never left me alone. She would glare at any female visitors I had – including my mum! The threat of being robbed or bashed was quite large at this place. At this point in my life I was going to university and planning to change my life for the better. The flat – and particularly my stalker – stood  for everything I wanted to get away from. While I was staying here I decided I needed a full-time well-paid job. I set about making that the path I would take. 

It was not easy changing my life but it was possible. It must be possible because I did it. I got my job, moved to Canberra and life was, well different. I bought a property in 2008. It was a bit of a compromise. The flat was very old and I kept getting plumbing issues. These resulted in high anxiety which -on two occasions – turned into psychosis and resulted in me being extremely unwell and taking months and years off work.

I sold that property in 2020. The plan was for me to buy another one but I was way too anxious at the point. It has only been in recent months that I have felt able to purchase somewhere and to be honest I am still not sure if it will be OK or if the process will make me unwell. I figure it is best out try such things and not be hampered by anxiety. So I will have my Castle Yennski – or as I am tempted to call it Chateau Overachiever – very soon. I am very grateful for how all these things seem to have worked our. Had you told me in 2000 when I had just been released from prison and was living in very unpleasant boarding house accommodation that I would have my accommodation that I do now I was have been very surprised – and probably told you to keep off the drugs!

Autism and hospital – why things need to improve

In terms of length of time spent there I think I am the absolutely master of hospital. I have spent literally years there over my lifetime, mostly due to my schizophrenia which usually involves at least a month admission when I have a psychotic episode.Thursday and Friday of last week were spent in hospital as I have a brain-related (but for once not mental health-related) episode. Apparently I either had a mini stroke or an atypical migraine – having scans shortly to check which and thankfully got to go home yesterday evening and appreciating being home right now. 

Autistic people – kids and adults – often struggle with hospital stays and visits to emergency for a number of reasons. I  am definitely one of them, despite the frequency and length of all my admissions over the years.

I want to talk about autism specifically and hospital. There are a range of things which make hospital very unpleasant for an autistic little Yennski person – and other autistic folks. My difficulties are:

  • Sensory issues – bright fluorescent lights, machines beeping, children – and some adults – yelling. The sensory side of hospital is horrible. One of the worst experience I have had has been in the locked psychiatric ward where there was a light flickering constantly. Because I was very very unwell – and the staff weren’t very accommodating –  this went on the whole time I was there and with literally no escape.
  • Uncertainty and particularly waiting. One Thursday I spent four and half hours on a bed in the corridor as there were no beds in emergency. I had no idea how long I was going to be there for. The uncertainty was horrific. The staff were all really apologetic and the wait times were impacted by the high number of COVID cases so it wasn’t anyone’s fault per se but it was still very stressful.
  • Hyper-empathy. My hyper empathy is pretty significant. Being around people in pain – psychical or psychological – and people who are angry and frustrated is just horrible. The psychiatric ward is often of the worst places in the world for negative hyper empathy. I used to say to my psychiatrist ‘Please let me stay at home and be miserable with Mr Kitty than be with everyone’s misery in the psych ward’
  • Medical staff not understanding your experience. Being autistic we go through life being roundly misunderstood by most neurotypical folks. Go to hospital and this seems to be magnified a lot. This is not just in the psych ward – although it is pretty noticeable in those settings. This can actually be dangerous of doctors miss things because you communicate differently.
  • Meltdowns and shutdowns. The combination of stress, worry  about the injury or health condition you are there for, uncertainty, sensory and emotional overload can lead to meltdowns and shutdowns. These tend to be not understood by staff and you are seen as being poorly behaved, especially if you are an adult
  • A lot of autistic people are alone when they go to emergency. It is much better to be with friends, family member of partner – if you have them. In my life I have spent more time alone in emergency than with a friend so I have been in those situations all by myself. This is very unpleasant and makes being in emergency very scary, especially if I am there due to mental health issues. Thankfully I had a lovely friend with me on Thursday and Friday and she made the experience infinitely nicer.
  • Staff misunderstanding your communication and thinking you are internationally difficult or aggressive.

Doctors are told to ‘do no harm’ but that can be a bit loosely interested by some medicos. When I was in hospital on Thursday and Friday I had taken my Webster pack of medication with me on advice from the ambulance officer. When I finally got a bed the first doctor I saw told me to take my meds from my website pack because one of them. Clozapine – was not in the hospital [pharmacy and would need to be specially ordered. Clozapine is an anti- psychotic medication and you have to take it every day. If you miss it for two days you have to start taking it at a very low does and then titrate it up to the dose you normally take. This process means that you basically get psychotic from the dose being low. I know this because it happened last year. The doctor in emergency on Thursday said to take it so I did. Then the new doctor came in and get really angry that I had taken my meds because they were in my Webster pack and not charted by her. She then said ‘I think you need to stop taking your meds. You didn’t have a stroke. It was your meds!’ I was horrified as I need to take the meds or I get very unwell. I spent the next few hours in total stress about this. Gee I hate hospital! Thankfully the specialist said my meds were not responsible for any neurological issues and it was OK but it made me realise – probably for the 1000th time – how powerful doctors are and especially hospital doctors. 

I have spent a LOT of my life in hospitals and I dislike them immensely. Hospital more often than not is not autism friendly. I guess the only good bit is that I have been in those settings so much that I am quite good at getting through it and am a lot more assertive than I once was. Most of the staff are absolutely lovely for a few notable exceptions. They do an amazing job but it would be really nice if it was most autism friendly. Oh and if they used transgender people’s correct pronouns and didn’t call me a ‘good girl’ that would be a vast improvement! 

Yennski in hospital in 2019

Stigma, assumptions and discrimination, or why it took me twenty-five years to accept my schizophrenia diagnosis 

I was asked to be a mental health month ambassador the other day and it got me thinking about my mental illness and why I am out loud and proud about it and what needs to be done to better include people with schizophrenia in the world.

I have had a diagnosis of schizophrenia since 1995 when my extreme use of illicit drugs and being homeless set up a perfect storm for psychosis. The universe was broken and I didn’t know who I was. It was very dangerous and I am fortunate to still be alive after that – and many other – psychotic episodes. I never thought I had schizophrenia despite every competent psychiatrist I spoke with confirming the diagnosis. I thought people with schizophrenia looked like zombies from the medication and that they couldn’t keep a friendship or a job. Of course these descriptors applied to me at various points in my journey but objectivity about oneself can be difficult. 

My schizophrenia is what is termed ‘atypical’ resulting in lots of related but slightly different diagnoses over the years – psychotic depression, schizoaffective disorder and atypical schizophrenia. Currently my official diagnosis is schizoaffective disorder which basically means I have a combination of a psychotic illness and a mood disorder (usually depression but sometimes mania). I have spent years in hospital and residential services – about seven years last time I checked. Hospital is one of my least favourite places. There is usually a massive power imbalance between patients and staff and not always much understanding of the rights or patients.

I have taken antipsychotic medication continuously since 1995. The medication had side effects such as weight gain and sedation which can make life hard. A lot of people see someone who is big and think they are lazy or that they have let themselves go. I always think maybe they are on antipsychotic medication. It seems unfair that those looking after their mental health can be judged as being lazy or careless about their health! My schizophrenia has an additional label: Along with it being atypical it is also treatment resistant. This means that the medication doesn’t always work very effectively. I am now on medication called Clozapine which is only prescribed for treatment resistant schizophrenia. This medication has been an amazing positive in my life. When it was first prescribed I would look at the pills in may hand and say ‘please be my good friends little Clozapines’. And in fact Clozapine has been a very good friend. Everyone who knows me well says they have seen a big difference since I started taking Clozapine in 2020.

Having schizophrenia can be a challenge for reasons in addition to the actual illness. The stigma around schizophrenia – and psychosis generally – is immense. If you say the term ‘psychotic’, many people think it is interchangeable for ‘violent’ or ‘dangerous.’ It actually isn’t that at all. Psychosis is when reality changes. You might see or hear things that others can’t or believe strange things. You might be frightened that people are trying to hurt you or that the TV is telling you things. I always say my psychosis is like a waking nightmare. People with schizophrenia are usually not violent and if we are it is because we are terrified. Research has found that people with schizophrenia who are violent are usually not taking medication – either because they stopped taking it or because it is their first episode and they don’t know they need to take medication. I am not likely to be violent when I am unwell but I am likely to be terrified. We need to stop saying ‘psychotic’ when we mean violent or predatory. It isn’t helping anyone.

Representation is another issue in this space. How many famous autistic people do you know? Probably quite a few. From Hannah Gadsby to Alan Turing and many, many others, the work of famous autistic people is increasingly known. This is awesome and all power to autistic celebrities. Now can you name any schizophrenic celebrities or role models? All I can think of – and bearing in mind that I am a mental health advocate so likely to know more then most – is John Nash of ‘A Beautiful Mind’ renown, poet Sandy Jeffs, author Janet Frame, the lead singer of The Sunny-boys (who stopped performing after he was diagnosed) and me (and I am a pretty minor celebrity so unsure I even belong on this list!) There is that wonderful adage ‘if you can’t see it you can’t be it.’ In the autism community there are plenty of role models that people can look to and learn from. In the schizophrenia space there are very few and most of the messaging is negative. We need more representation in the wider world and messaging that people with schizophrenia are doing positive things and that we can live a good life with the illness given the right treatment and support.

The world of work is quite fraught for people with schizophrenia and psychotic illnesses. I saw research from a few years ago which showed that in Australia the labour force participation rate for people with psychotic illness was 18 per ent. 18 per cent! I have had a number of colleagues in my workplace whisper to me in a corridor ‘i have schizophrenia but don’t tell anyone…’ Something really needs to be done in this area. I have been employed in a full-time professional job since 2007. I have needed to take extended leave and graduated returns to work on several occasions due to my illness but my employer has always been supportive. In return to keeping me in work my employer is rewarded with my loyalty and dedication and good work. I am currently supervising a staff member and I am highly regarded at work. A lot of people with schizophrenia who are not in work could be to my mind, given the right support in the workplace.

People don’t say they have schizophrenia a lot of the time due to (very understandable) fears or being discriminated against and misunderstood. This needs to stop. I don’t want to be the only person who is ‘out’. Of course I don’t mind being ‘out’ but I want other people to feel able to be out and not feel ashamed of their illness or worry that they will be discriminated against, We need more understanding and education in this area. We need a different narrative about schizophrenia in popular culture and we need a sense of pride in who we are. We need a world that views schizophrenia differently and enables us to engage in the world and to be genuinely included and respected for who we are. 

Drawing by Yennski when in hospital in 2019