Reflections from the AIDS memorial

Last week I was part of a performance by the Canberra Qwire. The Qwire sings a wide-ranging repertoire of songs in support of the LGBTQIA+ community. I have been part of the Qwire since January this year. Here is a link if you are interested. I can attest that it is totally awesome. If you are interested, I am a tenor! https://www.canberraqwire.org.au/

Anyway, we did a performance last week as part of the Canberra AIDS candlelight memorial. It was a very moving event, and it got me thinking. Back in the day (1992—93) I was a member of an organization called ACT-UP – the AIDS coalition to unleash power. ACT-UP was an activist organisation, and our motto was ‘the AIDS crisis is not over’. We held protests and activities to raise awareness and understanding and make positive change for people living with HIV/AIDS. I remember having a protest march once and we went past Myers in Melbourne and chanted ‘we’re here we’re Queer were not going shopping!’ I often say this slogan now as a sort of verbal stim and people don’t have the context and don’t know what I am talking about!!

In 2006 I collected donations for the AIDS Trust, standing on the streets in the city of Melbourne asking folks for cash to support AIDS research and support. This involved a mix of nice affirming people giving money and horrible bigots telling me I was going to hell! Which brings me to some of the broader issues. AIDS is an illness, like cancer or heart disease. However, do people with heart disease or cancer get told their illness is God punishing them? In the 1980s when AIDS was first in the public eye, they were a perception that there were ‘innocent’ people with HIV/AIDS – those who acquired the illness through blood transfusions – and ‘guilty’ people – those who were gay men and to a lesser extent IV drug users. This is seriously not OK and it highlights homophobia and significant bigotry in this space – sadly some of which persists even now.

There was a movie made in the 1990s called And the Band Played On which is basically about the history of HIV/AIDS. One of the people in the movie was a gay man who was HIV positive and was in hospital. This man was a Catholic and his room in the hospital was number 666 – in Christianity the ‘number of the beast’. This man was filled with internalised homophobia and believed he was responsible for his own damnation just through his sexuality. Nobody visited him. Watching the film, this part broke my heart and also made me angry – why should anyone facing a life-threatening illness feel guilty and alone? And I am pretty sure if there is a loving God that they do not hate people for being gay or send illnesses to punish people for no reason! I guess it relates to that statement that ‘’man’ created God in his own image.’ And the ‘men’ doing this creating are bigots so they create a bigoted God. Bigotry, homophobia and hate have no place in health care – or anywhere else for that matter!

One of the things around AIDS is that it is an illness which has been highly politicised. It led to so much hateful panic in the 1980s. In Australia there was an awareness campaign which featured a TV ad of the grim reaper playing ten pin bowling and the pins were people who were knocked down by AIDS. It was horrible, bigoted, alarmist and not really very helpful to anyone. It demonised gay people and represented scare tactics of the highest order. I remember someone around that time had a sticker with said ‘hug someone with AIDS’ and loving this. There was at the time a belief that HIV/AIDS was transmitted by touch, or even by sitting on at toilet seat! The ignorance was immense. It wasn’t just ignorance around the illness, but ignorance driven by bigotry and homophobia. I think the hatred around HIV/AIDS probably put back the cause of LGBTQIA+ inclusion significantly and gave confidence to hateful bigots.

Things have changes since the 1980s. Treatments have meant people can live a long life. But there is still stigma and confusion and bigotry and the need for advocacy and activism. Which makes events like the candlelight memorial and similar events so important. I feel very proud to have been part of the activism around HIV/AIDS in the 1990s and then the early 2000s. It was work that needed doing and being a small part of the response and making change fills me with great pride. Yup – I guess we should all be part of the solution and be the change we want to see.

Seven years of Yenn – or what’s in a name – or names and trans pride

On 20 May 2019 I became officially Yenn – my legal name change came through. I love my name and its story relates to a bunch of things around identity, pride and being wonderfully Queer.

I came out as non-binary about six months before I got my Yenn. I spent some time trying to find a new name for myself as my dead name was very feminine gendered and I had never really liked it anyway- it didn’t suit me!

One thing which upsets me – and did imagine other trans folks who have got a new name – is when people ask me what my dead name is. It took me many years and challenges to come to my identity. The last thing I want if for people to invalidate that by thrusting me back into my past before I had come to my beautiful and liberating non-binary identity! To anyone out there, please don’t ask trans people about or former / dead names, or worse still use our dead name to describe us. Just don’t. It is highly upsetting and you don’t need to know.

I had my Yenn name for about three months before I changed it legally. This was because if I changed it right away and then decided that Yenn was not for me than that would have been an expensive exercise in bureaucracy – and the folks at Access Canberra had enough trouble with my application for a Working with Vulnerable People card and my dodgy history! (And don’t worry – I got the card. I just had to answer a bunch of extra questions. Curese my criminal history from the 1990s!!)

One of my big worries shortly after changing my name was that people wouldn’t know who I was – by which I mean people looking for me to request writing or for me to give a presentation. I needn’t have worried – the internet if pretty good with that sort of thing. I remember in 2019 I marched in the Sydney Gay and Lesbian Mardi Gras (which was AWESOME!!). I marched with the Aspect Autism LGBTIQA+ committee. One of my fellow Aspect marchers said to me ‘I heard Yenn Purkis would be here.’ Amused I told him I was Yenn!

Sadly, the world has a fair number of transphobic bigots and people who do not like or respect trans and other Queer folks. This makes me angry and profoundly sad. I love my Queer identities, my name, all my rainbow and non-binary and Asexual pride things in my house. Coming out as non-binary – and changing my name to one that is meaningful to me and reflects me more than my dead name ever did.… these are reasons for joy, not hatred. I am not trying to recruit anyone, I am not sinning, my gender is not a mental illness. I am a proud Yennski in relation to all my intersectional ‘bits’!

I have this awesome friend called Lizbet. I have mentioned her before, and she featured in my 2023 TEDx talk as a wonderful ally. I was out shopping with Lizbet once – we love to shop! I found some Y-related product and purchased it – I love Y things and have a lot of them! Lizbet – always astute – reflected that when my name started with J I never bought J things! She was absolutely right.

People ask what my name means. I wonder if they ask that to other people who have more conventional names. Probably not. I don’t mind answering this because my Yenn has multiple meanings. Firstly, in poetry to yen is to yearn. Given that I have made a career of oversharing and self-reflection then this is kind of apt. Plus I do occasionally write poetry too – I am in several anthologies and was a finalist in an international poetry competition in 2015 (I know, I am a ridiculous overachiever. I can’t help myself!!) Then there is the fact that my Yenn name has some of the same letters as my dead name, indicating that I do reflect on the past and much of my journey was when I had my dead name. Finally, in Australia at least, where I live, Yenn is not a gendered name.

People often ask me ‘where does your name come from’ – no doubt thinking I am from a country where it is a common name. I always say, ‘my brain’. I don’t mind that one so much, but I hate when people ask, ‘is that your REAL name?’ Of course it bloody is!! Why would I say it is my name if it isn’t my really name? Do they ask that for a cis gender man called Peter? Probably not. And don’t get me started on misgendering…. maybe that is a future blog post!

Put simply I love my name. A name should sum up who a person is, their character and identity. My name does all that. It is actually a big part of my brand – personal and professional. It also lends itself to lots of amusing terms and nicknames. Most people know I am called Yennski, which is like my public nickname. When I am talking to myself – which I admit happens a lot – I call myself Yennie or Yenns. There is Yeme, Yenniversaries, the Yenniverse…. I could go on, but I won’t. And as I like to reflect, “If you can be anyone be yourself – unless you can be Yennski, then be Yennski. Being Yennski is awesome.” And if you type Yenn into Google AI it comes up with a bunch of cool things about me – most of which are actually true!!

To disclose or not to disclose? Thoughts on talking about disability at work

I want to talk about something which is often called disclosure. What this means is telling others about your disability conditions, usually invisible ones, and especially in the context of employment. I don’t like the word disclosure but is the most commonly used term so I will stick with it here, despite my reservations.

I was prompted to write this by someone remarking recently that most people do not tell others they have schizophrenia, but I do. I own and am happy to share all my various conditions and differences, mostly because it doesn’t occur to me not to. I don’t see my autism, ADHD, schizophrenia or anxiety as shameful secrets, similarly that I wouldn’t keep my hair colour or eye colour a secret. My mental health conditions and neurodivergences to me are not a reason for shame and I do not believe that they need to be hidden from others.

I used to attend GROW – which is a twelve-step program for mental health recovery. It was actually very helpful and I would recommend it if you have psychosocial disability and twelve step programs are your ‘thing’. At GROW they have a little blue book with all the thoughts and sayings which underpin the GROW movement. One of these sayings is ‘those who mind don’t matter and those who matter don’t mind’. I love that saying and it is true, at least in my experience. So, if a person gives me a hard time about my mental health, they are not someone who matters to me or a person that I want in my life.

One of the reasons I choose to disclose is necessity. I have a profile as a Disabled advocate. If I apply for a job, it is likely that the employer will Google me. If you Google me there are quite a few sites and a lengthy Google AI entry about Yenn Purkis, the disability advocate. The internet thus makes the decision and discloses on my behalf!!

A lot of people struggle with knowing whether to disclose their invisible disability in the workplace. I have a few thoughts on this. Firstly, develop a strategy. This is a framework for whether or not you disclose and then some additional considerations. If you elect to disclose, consider:

Who will you disclose to? Your line manager, colleagues, your direct reports, etc
What will you say?
When (at what point) will you disclose? – When you apply for the job, at interview, when you are offered the role, when you start or after you have been there a while?

Each job and workplace will probably be different, but I find having a strategy helps to plan before I apply for roles.

I worked in the Australian Public Service for 17 years. I know, that isn’t a very Yenn job, but it paid the mortgage and the work was quite varied and interesting. One thing that used to make me sad at work was when colleagues would take me aside and whisper “I have bipolar [or insert mental health condition or autism here] but please don’t tell anyone”. This happened quite a lot.

Disclosing your disability can be viewed as an act of self-advocacy. I am a big fan of self-advocacy. It is also a good way to help get your needs met. If you disclose then management will be able to provide any workplace adjustments that you might need. It means if you have communication needs or sensory challenges that you can ask for assistance for these.

I do not think disclosure at work is a ‘right’ or ‘wrong’ thing to do – each person is different and it is a personal choice as to whether or not to do it. Similarly to not ‘outing’ people as Queer it is important to not ‘out’ your colleagues, managers or staff in relation to their invisible disability. I kept confidentiality for all those public service colleagues who confided their psychosocial disability with me and that was absolutely the right thing to do.

Some positions are specifically aimed at applicants with disability – called ‘identified positions’. For these you have to disclose! However, there aren’t a lot of these positions available.

The issues people face often relate to ableism in workplaces – and also internalised ableism. Some managers see disability at work as being related to incompetence and high costs. This is ableism – and it is also wrong! But these ableist attitudes do tend to persist in the workplace. These attitudes and other kinds of ableism contribute to people feeling reluctant to disclose their disability at work. It is not as simple as telling Disabled folks that they should disclose – the structural, individual and internalised kinds of ableism often need to be addressed in order to support people to be ‘out’ in the workplace.

For me I remain out loud and proud – partially because my profile dictates that I must but also because I want to and I find it helps to address issues at work and to be better supported by my managers.

Rejection sensitivity and employment

Yesterday one of my employers told me I was doing amazing work, and another said she was really happy with what I was doing. Of course I was delighted but one of the reasons it was so nice to hear is that I have significant rejection sensitivity and impostor syndrome. Also, I have a history of experiences of workplace bullying – the most recent of which took the form of performance management. As a person for whom work is probably the biggest part of my identity and also someone with rejection sensitivity and impostor syndrome this was probably the worst way of bullying me. Not sure if the bullies realised that but it weas pretty harmful and impacted me in a big way. The experience of bullying was some years ago now, but it still haunts me and makes me doubt my capability in the workplace.

What is rejection sensitivity? Also known a rejection sensitive dysphoria it relates to struggling with rejection – at times even constructive feedback. The experience of rejection or criticism is experienced as a trauma response and makes people doubt themselves. It is horrible! It is common with ADHDers and AuDHDers, but others also experience it. I can even experience it when anticipating positive feedback! It is closely related to anxiety and self-doubt.

For me, rejection sensitivity is significant and tends to make employment challenging – although some people experience it in other settings too, like relationships or in education. It is not a flaw or failing and is not people being overly sensitive. For me it is mostly around employment, but I also have some doubts around my capability in my PHD study – yesterday I got all stressed and thought I wouldn’t be able to finish my PhD due to me not being capable! This in the context of someone who was one of three students in the entire career of my primary supervisor to get the scholarship for their PhD!

Rejection sensitivity is related to anxiety and self-doubt – things which ADHDers and Autistic people tend to experience a lot of. Addressing it may be focused on challenging self-doubt and building a sense of pride and self-confidence – things which, while very helpful, can be hard to attain.

Wider society needs to be aware of this as an issue and support people rather than make things worse. For me, when I was in that difficult workplace situation my managers just kept adding to my stress and the more stressed I got, the worse my performance was! I don’t actually think my performance was all that horrible prior to my managers starting the process but it definitely was by the time I left due to my doubt and extreme anxiety!

Some people are unaware that they have rejection sensitivity which can make it harder to address. These days my employers – and PhD supervisors – are all very lovely and want me to succeed but I still struggle with rejection sensitivity, and I imagine I probably always will. I am aware of it but that doesn’t make it go away! However, awareness is good because it provides perspective and understanding and I know I am not doing anything ‘wrong’.

Substance abuse and autism

The title of this blog post is actually the same as the title of a book I had a contract for but withdrew – due to me only having enough content for two chapters!! This was in 2006 and would have been my second book. If you google me on Goodreads, it is still there for some reason, despite it having never existed!

The history of the Yennski publications back catalogue notwithstanding, the issue of alcohol and other drugs issues for autistic people remains an issue for many of us.

When I was diagnosed as autistic in 1994 the belief among clinicians seems to have been that autistic people were all rules-focussed and health conscious. However, I was not. I found myself in the psychiatric ward when I was 21 – due to drug-induced psychosis which turned into lifelong schizophrenia. There was a young boy in hospital who was diagnosed as autistic and he fitted most of the stereotypes around at the time. He told me off for smoking on one occasion. He did his schoolwork while in hospital. The head psychiatrist saw this boy as autistic because he fitted the stereotype, but I certainly didn’t so in his eyes at least I was a neurotypical drug addict! [In fact my diagnosis summary stated that I fulfilled ‘all the DSM IV criteria for Asperger Syndrome’ so the clinical psychologist who diagnosed me at least was pretty convinced about my autism and no other clinician has questions it in over 30 years.]

Along with having drug issues in the 1990s I also had, well, prison issues! The stereotype of autism at the time was certainly not a drug addict or a criminal. Hindsight – and greater understanding of the rich diversity of autistic experience – tells me that I was not atypical in my substance abuse issues – many other autistic people battle with addiction.

The other thing I have learned around this is that there’s a level of nuance around these topics. It isn’t really the case that drugs and alcohol are always bad or that anyone with an addiction issue needs to take the twelve-step approach and never partake again. That is true for some people but not all. I had a major alcohol issue between 2003-2007 mostly because I was drinking to be accepted by my public housing estate neighbours – many of whom had issues with aochol. When I moved away, I stopped drinking excessively. I am now quite capable of having one glass of wine and leaving it at that. I have not been drunk since 2011. However, for many, abstinence is essential in order to stay clean and sober.

Also, for some people, recreational drug use isn’t actually a problem. They do it occasionally and can take it or leave it. In addition, some autistic people use things like cannabis to help what chronic pain or other physical health issues. Some people use ketamine for pain or depression and people with ADHD often get prescribed amphetamines to help with focus and managing issues related to ADHD. Substance abuse tends to involve doing something to fill a metaphorical ‘void’ of some form or other, such as emotional pain or trauma. I wouldn’t ever say there is a blanket ‘drugs are bad m’kay’ because it is not that simple. For me I can’t go near cannabis or amphetamines because using those pretty much always results in me getting very unwell and having to stop work for six months at a time but for others these drugs can make a big positive difference.

There are some reasons why autistic people may be more likely to have an issue with drugs or alcohol. One of them is self-medication. This is what I did when I was younger, I had experienced trauma and wanted to block out all emotions, so I used drugs and alcohol excessively. Other people use drugs or alcohol because it is easier to socialise with neurotypical people if everyone is drunk or high. Others use drugs or alcohol to be included and fit in with others who have similar issues – like I did in my public housing place. Others use drugs and alcohol for the purpose of consistency. You don’t need to worry about your mood when you are drunk or high, and you know how you will feel when drinking alcohol or using drugs. Some people have passionate interests focussed on addiction and some get involved because a close friend or partner is involved in drugs and alcohol.

Strategies to help people overcome substance abuse issues need to be tailored to the individual’s needs – which is particularly the case with autistic people. As with other things, behaviour is communication. This means if you understand the reason for the behaviour, it will be that much easier to address it.

For me, I had major issues with drug and alcohol use between 1995-2007. People would tell me that I should stop and I always dismissed this. To an outsider it would have looked like I wasn’t taking their statements on board but actually I was – it is just that they and I didn’t realise that this was happening! I eventually got to the point where I could see that my substance use behaviour was not very helpful and at that point, I remembered all the words from those in my life who were concerned. Addiction is one of those things which seems to be best addressed through the passage of time and the opportunity to reflect. I think this is true for autistic people as much as others.

Catastrophising – putting 2 and 2 together and making 672.33

I often say that I could worry for Australia if it was an Olympic sport. And for me the usual form that anxiety takes is catastrophising.

Catastrophising is a kind of anxiety where you go from worrying about one thing to moving into the absolute worst case scenario in a short space of time. I have a few topics that I tend to catastrophise about, the current ‘favourite’ is about my income. Here is how it works:

I have a mortgage. I am self-employed and have lots of small sources of income.

What if one of my employers cancels on me…. Followed by all the rest? Then I will have no income, then I will need to sell my home, but nobody will buy it so I will be homeless and then I will die.

I can do this thought process in a couple of seconds and end up really stressed about something highly unlikely. I suspect in reality that I am far more likely to get unwell from the high anxiety resulting from catastrophising about this preposterous series of events and have to take a bunch of time off work because of that. That is probably more likely to threaten my income than my worst-case scenario!

While catastrophising is not the sole domain of autistic folks, we do tend to be quite good at it!

I suspect it relates to control and being in a world which is uncertain and frightening for us. People who do not share an issue with catastrophising often think we are foolish for thinking this way, but it isn’t exactly something a person can consciously control all that easily!

My strategies to address it are not always effective but they can help.

Strategies that I use include:

Applying logic. I remind myself of Occam’s razor – the idea that the most likely reason or outcome is the correct one. Applied to my employment stress, it is highly unlikely that I will lose all my jobs at once and then not be able to find another one. I am very employable and have a formidable CV! I suspect I would not be unemployed for very long even if that did happen. In terms of logic, it is silly to think my worst-case scenario is going to eventuate. Anxiety doenslt always listen to logic but this thinking style can be helpful.
Address issues in my life which are contributing the stress, where possible. For me, stress and anxiety are worse when I have something going on which is working to increase the stress. These feelings permeate all areas of my thinking, often leading to increased catastrophising. So where possible, I try to excise stress about other things. Of course some stress is inevitable making this approach challenging. As such I find it is a case of do what you can when you can.
My therapist gave me a strategy that I quite enjoy. It involves setting aside some time each day to dedicate to anxiety and worry. If possible, it can help to move the stress to a dedicated time and work through it then. This one is not about invalidating people’s mental health difficulties. I thought it was for many years and didn’t use it as a result but more recently I have actually found it helpful.
This one is my favourite strategy ever. I got this one from a mental health worker at a residential program I was staying in a while back. The worker said I could think of the thoughts which cause anxiety as a person knocking on my front door. I couldn’t help them being there, but I could decide whether or not to let them in. I loved this and a couple of weeks after that conversation I added a bit of Yenn to it. The anxious thoughts in question were not just any person at the door – they were Donald Trump and there was no way in million years I would let him in!! Now I just need to think ‘Eek, Trump’s at the door!!’ and it tends to work well. Of course I don’t want to diminish or trivialise the high level of complete evil and hatred which is Donald Trump and the fact that he is a fascist dictator and responsible for much death, injustice and misery – and mental health issues! – but I find it to be a pretty effective anxiety strategy.

So those are my thoughts about putting two and two together and making 672.33! Anxiety is a real thing, nothing to be ashamed or embarrassed about an something which can be addressed with strategies and support. I also use some medications for my anxiety. Medication isn’t for everyone, but it can be very helpful. It is important to reach out for help for mental health issues when you need to as well – mental health issues are not a shameful secret, a failing or somehow your ‘fault’. I have anxiety and schizoaffective disorder as well as autism and ADHD. I am living proof that people can live a great life with such things, although – from my experience at least – it can take some additional work and support!

“Where’s the group for straight white men?” Or why I aim to check my privilege

The statement in the subject of this article was actually one I heard uttered in real life. The person making the statement had pretty much all the areas of privilege – white, cis gender man, heterosexual, non-Disabled and middle class. From this statement he clearly felt threatened by any kind of equity, diversity and inclusion! He was a manager at my old workplace and the statement came after our lovely Branch Manager asked me how the disability network was going (as I was the chair) and my Director how the First Nations network was going (because he was involved with that network and was a proud Aboriginal man). Our ‘friend’ of the many privileged groups clearly felt left out, hence his wish for a network for straight white men. And I had to stop myself from responding to him “ We have that group. It is called the world!”

This illustrates a common issue – where people see inclusion and measures to support those from marginalise groups as a threat – ‘woke nonsense’, ‘cancel culture’ or for those of my vantage, ‘political correctness.’ This whole conversation is centred around the concept of intersectionality. Civil rights activist and academic Kimberle Crenshaw first described this as the intersection of race and gender- i.e. that women who were People of Colour experienced compounded or multiplied disadvantage. This was back in the late 1980s and since then the categories of intersectionality / marginalisation and privilege have grown and it now includes things like disability, LGBTQIA+, class and gender diversity. Privilege simply means someone doesn’t belong to one or other intersectional groups. It is not a failing or a flaw – but it does need some attention to avoid being an issue.

Privilege alone is not an issue – generally it isn’t something a person has any say over! Also being privileged in one of more domains doesn’t guarantee you an easy life. The concept of intersectionality is more around sociology than individual experience. This means a cis gender, straight, white, non-disabled man might have a seriously crappy life despite his privilege. The other point in this area is that supporting marginalised people does not somehow disadvantage privileged people. There isn’t a limited amount of inclusion!

The main trouble in this space to my mind is unchecked privilege. One of the issues with privilege is that people do not realise they have it. When you belong to a marginalised group or groups you are constantly being reminded of it – by individuals and society, often through experiencing bigotry and discrimination or ongoing microaggressions. However, when you are privileged, it is rare that anyone tells you about it! This means you might be behaving poorly but not realise it. I have a great example of this. I have a friend who is a woman from a refugee background. She was working in a government department. Her boss – who had all the elements of privilege – was organising a conference. He showed his planned speaker lineup to my friend who said ‘you have no women, you have no people of colour…’ to which the manager expressed amazement and asked my friend how she had so much great insight into such things! He wasn’t being intentionally disrespectful, but – like many hiring managers, he was basically hiring himself! And because so many hiring managers come from all the areas of privilege you can imagine why this is an issue!

I tick a number of intersectional ‘boxes’ – but, like most people who do, I also have a couple of areas of privilege. For me that is White privilege (which is a biggie) and class privilege (also a biggie).

I struggle with privilege too. I used to work in the public service – which is considered a prestige job. I left because I was very unhappy and experiencing some unpleasant behaviour. I left two years ago. I often worry that in the future I won’t earn enough from my business and academic work and will need to go back to working in the public service. When I unpack this, I realise there are a great many people in similar situations to me who would love a job in the public service and that I am in a position of significant class privilege in my thinking. The other class-related issue I have is around my home. I own my home – and am paying off the mortgage. It is basically the best place I have ever lived. The location is perfect, it is the most Yenn place in the world and if I left I would be very sad. I love it. But I worry I will not get enough work and need to sell Yennski HQ!. Once again, worrying about this is highly privileged in terms of class. Many people who share my various attributes are homeless or in unsuitable housing – including my 30 years ago self.

In terms of checking privilege a good approach it to be guided by someone who belongs to a marginalised group or groups. That and learning and educating yourself around intersectionality and inclusion. To privileged folks out there, this is not part of some woke police cancel everyone sinister agenda-type thing. It is actually about being respectful and understanding and including everyone. I actually don’t understand why anyone would intentionally choose to be disrespectful. I have said this when being interviewed and asked such unhelpful questions as ‘what do you think we should do about all the militant autistic activists?’ (Yes, someone actually asked me that at an event once – and it was the organiser of the event!!)

So I reckon educate yourself on intersectionality, check your privilege and be kind and respectful to everyone. We are all responsible for making a better world.

Yennski at the 2019 Sydney Gay and Lesbian Mardi Gras

One grateful Yennski! Or different ways to view a difficult life

I want to start this piece by saying how immensely grateful I am to be who I am and to have the life I currently do.

I am now 51 years old. I have spent just over ten years of my life in institutions – mental health, hospital and prison. So, 20 per cent of my life I have had no autonomy or choice and my actions and experiences were mostly determined by someone in a position of authority who probably didn’t have my best interests at heart. Even nice workers are still people who spend time with you because they get paid! There is the concept of the kindness of people who are being paid to be kind. As such they might be lovely but their stake in your life is very different to a genuine friend, partner or caring family member. That idea around depending on the mercy of strangers was certainly the case in my youth.

In addition to being institutionalised in a number of mostly very unpleasant places I have schizophrenia. This means if I get really anxious over a prolonged period or use illicit drugs or be victimised that the psychosis chemicals in my brain (I believe the culprit is too much dopamine) get very excited and make my life a waking nightmare for up to a year at a time, meaning I cannot work or do anything I like to do plus it is terrifying. I have taken medication for it since 1995 and the meds are brutal and can shorten your life and have very challenging side effects.

So why would I ever be grateful? This sounds like a really crappy life and one I wouldn’t recommend but actually, at this point in time, I am happy. I am often an optimist so instead of being tied down by negativity and regret I see my life now as being incredibly blessed, fortunate, lucky – whichever way you want to view it.

Yes, I was in prison for four years where violence was a regular occurrence and I was constantly in grave fear of my safety. However, at that time I had the most amazingly supportive family and when I was released, they looked after me. My parents are still with us (very big yay to that), and we love each other to a high degree. They are so proud of me now – and often tell me so! Without my family I am fairly certain I would be dead. When I got accepted into my PhD my dad apparently told everyone! The same goes for my books – and especially the first one!

I spent some time homeless but now I own my own home – well, I am paying the mortgage anyway! I could look at my past and be upset with the terror of having no stable or appropriate accommodation but instead and I am constancy delighted at my lovely Yennski HQ. Every day I am grateful for my home and the journey I took to get to being in my current position.

I used to have a drug problem which I now do not have. This is another reason for gratitude. Not only is being clean and sober awesome – and I am much happier – but my experience also helps me to support others with a similar problem and not be full of judgement. In fact, I don’t really judge others much at all. It would seem a little hypocritical if I did!

So… Yenn’s short list of things they are grateful for:

My trans / non-binary identity
- And related to that, my name
My home
My employment – I couldn’t work at all for ten years in the past and now I probably have too many jobs!!
My family
Sunflower the Kitty and all her feline predecessors – Mr Kitty, Major Tom, Sensei and others
That I am financially independent
I like myself and I have friends who also like me
My motivation
My many ‘nice things’
That I am doing a PhD
That I am sought after for my views on stuff and things 🙂
My wonderful Yennski brain – complete with its foibles and idiosyncracies

I always think had I taken a different (i.e. non-prison and drugs) path in my youth that I would probably be insufferable. I might even have been some kind of corporate psychopath. So, while I do not condone criminal activity (unless it involves protesting against evil regimes / fascist dictatorships) had I not taken the path I did I suspect I would be a worse human being than I am now.

My approach to my difficult life can be seen as centring around the concept of acceptance and commitment therapy – in fact one of my psychiatrists in the past said I am the living embodiment of acceptance and commitment therapy! I don’t have enough space here to discuss it but give it a quick Google if you are interested.

Some surprising things about autism diagnosis and the DSM

I have been diagnosed as autistic for 32 years, I have written many books on autism and am considered by many to be an expert in the field…. Turns out even experts need to learn things, as I discovered this week during a course I am actually on the teaching staff for!!

The topic in my course last week was all about the history of autism diagnoses in the DSM. If you don’t know about the DSM, it relates to five main iterations of a publication released by the American Psychiatric Association, the Diagnostic and Statistical Manual of Mental Disorders. The first DSM was published in 1952 and as you would imagine contains some pretty dated diagnoses, many of which are now quite offensive! For example, homosexuality was in there and not just in the first iteration I hate to say. In the first iteration of the DSM, autism was called ‘childhood schizophrenia’. In fact, it wasn’t until the DSM III in 1980 that autism was included as a separate thing. In 1994 another big change was made with the addition of Asperger Syndrome and the concept of autism as a spectrum.

However, interesting though these things are, the thing which amazed me was in the DSM 5. You might remember when the DSM 5 was first published in 2013 that it did away with separate diagnostic terms for autism and introduced ‘Autism Spectrum Disorder’ and three ‘levels’. I believed – as I suspect did a lot of others – a few things about the levels but it turns out all of my understanding – and others’ presumably – were contrary to the intent of how the DSM with its three levels should be used.

Firstly, the DSM is not an assessment method. DSM identifies various different conditions but is not used to assess individuals. Tools like the ADOS are for applying / assessing whether a person should get an autism diagnosis. The DSM just describes what that diagnosis looks like.

Secondly. the autism levels relate to two areas of ‘impairment’ in the DSM – that being social communication and restrictive and repetitive patterns of behaviour. The three levels relate to those two domains. You can get a level of one against one domain and a level of three against the other (or whatever). As such, you might be a level 1 in social communication and a level 2 in restricted and repetitive patterns of behaviour. That doesn’t make you a level 1.5!

Thirdly, the autism levels are not static. They can fluctuate depending on situation and time. They can change even in the course of a day. For example, you might be a level 2 in one domain when you are at work and a level 1 in the same domain at home as these are different environments which impact on your capability and which diagnostic ‘level’ applies in a particular situation.

Finally, the level numbers are not a diagnosis. To say ‘I am a level 2’ doesn’t work. You might be a level 2 at the moment against one of the criteria but that may change related to situation and time. Someone recently said I should get re-assessed as a ‘level 2’. According to how the DSM is intended to be applied, you cannot diagnose someone as a ‘level 2.’ ‘Level 2 autism’ is not a diagnosis. The only autism diagnosis in the DSM 5 is autism spectrum disorder, and the levels are a way of understanding experience, presumably in order to know when, where and how to provide supports to enable autistic people to thrive.

I’m not sure if this blows your mind as much as it blows mine! I always thought the three levels were diagnoses in and of themselves but in fact they are not! This actually makes me feel a bit more friendly towards the DSM 5! Of course, diagnosis for neurodivergent people comes with some inherent issues and risks and a deficits-based view drawn only from a medical diagnosis and identification of only problems and impairments is a damaging thing. Diagnosis needs to be used as a tool to help to empower and promote self-determination, to access necessary supports and promote a sense of pride and self-esteem – not to further disadvantage people or make them doubt their capability. That being said, clinicians and neurodivergent people too can definitely benefit from knowing these things about how the DSM diagnostic criteria can be understood and correctly applied.

I am interested to know if I just missed a major piece of information that everyone else already knew with this or if it is new knowledge for others as well.

When the world of work is wonderful – and not

Almost two years ago I left a job I had held for some years because my new managers accused me of poor performance and had dozens of closed door meetings with me outlining how and why I was a problem. No manager before them had ever accused me of this but being me, I assumed I was in the wrong and something had broken in my brain for some reason making me a poor performer. In fact, I actually became a poor performer because I was so stressed about my performance being criticised! My rejection sensitivity and impostor syndrome meant I didn’t question the assertions that I was the problem. I believed the problem was me – for some reason I couldn’t perform a role I had done successfully for many years. At the point I knew the outcome would probably be the termination of my employment I left. I believed for a long time that the issue was me and I would never be able to work in any job.

Since then, things have changed. I carried trauma with me because the experiences at the job I left. I stressed about my capability to work anywhere and assumed I would just keep getting less competent until I was unable to work at all and I would need to sell Yennski HQ and life would get rapidly more unpleasant in the world of all things Yenn.

When I left that job I had no regular income other than my books and talks. Even though that is a significant amount of income it is not enough to support me, so I needed to get more jobs. This meant that I was unemployed and had no confidence around my capability to work! Thankfully since then I have had other sources of income and have been quite sought after as an advocate and professional. Given I have been networking in a pretty serious way for almost twenty years this provided me with many jobs. In fact at the moment all my income comes through people I have worked with in the past or who know my work – except my PhD scholarship which happened presumably because I am an awesome researcher and impressed the selection panel with said awesomeness!

I finally know that my performance is not an issue. I was not being incompetent in my former job – although it is likely I was being discriminated against! I love my various employers at the moment and love how I approach paid work. I have over 10 income sources which means if I lose one for whatever reason I will still have the others. Working like this after spending many years in a secure ongoing professional role takes some getting used to but I know can apply for different things and am quite likely to get at least some of the opportunities I apply for. I am highly employable so that takes away some of the stress. I have other autistic friends who change jobs frequently and it seems to work for them!

Every couple of days I get all anxious about income and think nobody will employ me but thankfully the stress goes away – mostly because it is silly. I have seen m CV and if I was someone else applying for the same job as me I would be pretty intimidated!! I actually really enjoy my work at the moment. Apart from periodic uncertainty I have things pretty good! All my work is from home so I get to listen to music and pat Sunflower the kitty on her frequent visits to my home office! And I have a lovely home office too. I never blur my background on Zoom as I actually want people to see where I work!

I am relieved to get to a point where I know the issues with my former job were most likely the result of my former managers and not me. Although I am sad that this happened because it caused me trauma and stress for some time but, as my mum says, it is all a learning curve and I am infinitely happier now so thanks former managers!! I’m not sure if making me happy was their intent but take it where you can get it I say!