What’s in a name? Being Yenn

Two years ago this month I legally changed my name to Yenn. There were a few reasons for this, mostly it was because it is my name! It wasn’t always my name. I had another name for most of my life. It was a very gendered female name as it ended with ‘ette’ – in the English speaking world that strongly denotes the feminine. But I am not female. I am a different option for gender. I am non-binary and transgender – the white stripe on the trans pride flag. I came out as non-binary and trans in 2018 and one of the first things I thought needed some attention was my gendered feminine name.

Coming out was an amazing liberating thing to do. I was literally dancing for joy in my kitchen. I wanted to skip down the street and declare my gender identity from the rooftops. I loved finally being able to put language to my experience of gender. However my name was an ongoing issue. Initially I wanted to change my name and tried to force it. I didn’t come up with anything which suited and just got frustrated and desperate. I decided to leave coming up with my name to my subconscious which is quite good at working through things that my conscious mind struggles with.

Nothing happened on the name front for many months and then on a February morning when I was at work the word ‘Yen’ came to my mind. Ooh I thought. I wrote it down ‘Yenne’ but it didn’t work. I tried again with ‘Yenn’ and I had my name.  Like many good decisions I have made over the years, I reached the conclusion to use Yenn as my new name in a split second. It was just right. I unpacked the significance of Yenn. The first thing I realised was that in poetry to yen is to yearn. I have made a career of self reflection (and let’s face it, oversharing) so that worked. It was also a nod to my dead name – and through that my personal history – as it contains some of the same letters and it is a gender neutral name in Australia. Yenn was perfect. I loved my name form the moment it came to me.

The day I changed my name I updated all my social media accounts with the change. My email address was under my previous name but I had created a different email for personal emails so I just made that my main address. It was a big job changing all my details and memberships with my new name but it was also quite liberating. I got a new passport with my new name and with gender as ‘X’- which isn’t ideal but it is better than having to pick male or female!

I had an amusing incident the day after I changed my name unofficially. I was hosting ‘Rosie’ books author Graeme Simsion’s book launch in Canberra. Graeme came up behind me and said ‘Yenn…’ and then laughed as I didn’t look around! Despite this I was quite good at not dead naming myself. Much better then when I came out initially and misgendered myself more often than not for at least three months! I probably only called myself by my dead name a few times. Yenn was a great fit!

People responded really well to my name. I must admit it is an excellent name! It is so ‘me.’ My dead name never suited me. I never liked it and it never felt like me. I view my dead name as being like a winter coat that doesn’t really fit well and is uncomfortable but it is the only coat I had so I needed to wear it. Now I have a new metaphorical coat and it fits perfectly, is warm and cosy and oh so very stylish!

Most people responded really well to my new name. My mum picks up the phone by saying ‘It’s Glen here’ and I say ‘It’s Yenn here’ which she finds amusing – as do I! I am very fortunate to have a supportive family as so many transgender people have major issues with their biological families. I have had some abuse and people saying they won’t use my name but mostly people in my world have been very respectful and decent.

When I first changed my name I had a big stress about people who follow my work and conference organisers and so forth not being able to contact me. This was not the case. Things dropped off for a couple of months but have since picked up. I already have 26 things on my presentation list for this year so I think it should be ok!

After two years I am firmly Yenn. I love my name and my strong trans identity and everything that comes with it. So I am very happy and proud to be Yenn. What’s in a name? For me having the opportunity to choose my name has been life changing. My dad recently said he had seen how much happier I have been since I came out. Very big yay to that!

At the Sydney Gay and Lesbian Mardi Gras in 2019

How to do mental health well for autistic people

I am autistic and I also have a diagnosis of schizoaffective disorder. I have spent over six years of my life in psychiatric hospitals and residential mental health services. As an autistic person with mental health issues I have experienced a lot of very unhelpful treatment over the years. Sadly I am far from alone in this. Mental health clinicians and services do not always understand autism well and this is reflected in the standard of ‘care’ that autistic people with mental illness tend to experience.

Some of the notable negatives I have experienced in health settings include being told to ‘be less annoying’ when a fellow patient physically attacked me for no reason, being misdiagnosed with borderline personality disorder and then experiencing years of prejudice from health workers due to that diagnosis and then being taken off one of my medications and discharged form hospital the same day (yes, I got very unwell very quickly and was back in hospital a week later!)

So how can we change this? I have a few thoughts on what can be done in mental health services to support, enable and empower autistic people with mental health issues, These include:

  • Correct / accurate diagnosis. Autistic people often present differently to neurotypical folks in terms of our mental illness. Rather than clinicians treating us like we are making things up (this happens!) actually listening and observing the person’s symptoms in order to make a suitable and helpful diagnostic assessment would be far preferable. Diagnosis determines treatment so this is really important.
  • Clinicians and services to build their knowledge and understanding of autism and other neurodivergences. In this space knowledge really is power. Often clinicians have a limited knowledge for what autism is which can lead to a lot of issues in mental health care. Some useful knowledge includes understanding the impact of sensory processing issues, knowing what a meltdown is and why it happens, understanding autistic ways of communicating, being aware of the neurodiversity approach to autism, understanding that many autistic people ahed alexithymia (emotion blindness). All these things will help clinicians to better support their autistic clients.
  • Listening! Assumptions are the mother of all screw ups in mental health care. An assumption can turn into an inaccurate understanding of someone’s actions and behaviour which can go into some scary territory. I spent time in jail in my early twenties due to this sort of thing. Assumptions have consequences. And listening has consequences too. In fact listening is likely to make life a lot easier for both the autistic person and clinicians.
  • Understanding  the impact of sensory processing issues. Imagine you are in the locked ward in hospital and there is a flickering light and you have sensory processing issues around lights. You are already unwell but the flickering light is setting off your stress. You ask the nurses to change the light and they say it isn’t their responsibility. You are trapped in a ward with a sensory nightmare happening and nobody seems to care or want to help. This could lead to meltdowns or self harm – both actions which will probably result in you being kept in the locked ward even longer. I actually had some contact with the mother of a young man who hd a similar situation to this. He was in hospital for years. A simple understanding of sensory issues and a willingness to address them from staff would make all the difference here.
  • Peer workers. Peer workers are becoming increasingly employed in mental health care settings. A peer worker is someone who has a lived experience of mental illness and is working in the hospital or community setting to support the people using the service. In my last hospital stay from February-June 2020 we had two peer workers and they were amazing. Having an autistic peer worker would be amazing. 
  • Clinicians having an understanding of the kinds of conditions which can co-occur with autism, such as ADHD, dyslexia, Tourettes, dyspraxia 
  • Understanding of what a meltdown is. When I have had meltdowns in hospital staff have treated me like a naughty child. I was told I was not managing my emotions and that I was being unreasonable. In fact I was totally overloaded and needed some time in a quiet space by myself. Meltdowns are so often seen as poor behaviour when that is not the case at all. A meltdown happens when people have too much going on to deal with. It is like a pressure cooker. Once the emotional, sensory, social overload builds to a certain level it just explodes. The key to addressing meltdowns it to be able to deescalate before the pressure builds to that tipping point. Blaming someone for having a meltdown isn’t going to help them – or stop it happening again.
  • Hospital wards having sensory rooms is a great idea. I was in a rehabilitation hospital last year and there was a sensory room which was wonderful and great for deescalation.
  • Understanding hyper empathy. Many autistic people experience hyper empathy. This is where we can pick up on the emotions of those around us as if by osmosis. Psychiatric hospitals can be a very stressful place for. Person with hyper empathy as most people are stressed, sad or angry.
  • An advance agreement. This is a plan you develop with your clinical manager or doctor when you are well to help clinicians know how to support you better when you are unwell. It lists things like what your triggers for illness and overload are, medications you take and who to contact if you are unwell. 

I believe that these strategies and approaches could definitely be employed in mental health care settings and that they would make life easier and clinical services more helpful for autistic people.  

And just because, here is a link to Emma Goodall, Jane Nugent and my book The Guide to Good Mental Health on the Autism Spectrum. Yes, I did actually write the book on autism and mental health – well, coauthored it anyway! 🙂 https://www.amazon.com.au/Guide-Mental-Health-Autism-Spectrum/dp/1849056706

Managing anxiety

I often joke that I could worry for Australia as I am so anxious for so much of the time. Jokes aside, anxiety is a major issue for me as it is for many other autistic people – and people generally. For me if the anxiety gets too extreme it can trigger psychosis which means I am afraid of being anxious When I start to get anxious I add worry about the anxiety to the thing I was worrying about in the first place! It is bit of a vicious circle!

An example of my anxiety relates to when my shower started to leak in the property I owned in 2010. The plumber and the tiler had an argument about which one of them had made a mistake. It added weeks to the repair. Then after the shower was apparently fixed it had another issue and I needed to get the plumber and tiler back. At one point there was just a big hole in the bathroom where the shower should be. The anxiety around this was horrific but it also translated into anxiety about everything to do with my apartment. I would go into every room and look at where there had been plumbing issues or where there might be plumbing issues in the future. I was constantly stressed about home maintenance. Within a few months I was very unwell. I spent between 2010 and 2013 in and out of hospital. Even when I recovered I had a fear of plumbing issues. I still do 11 years later. 

I have a few different kinds of anxious thinking, The key one is catastrophising. This is where I worry about the worst possible scenario. For example if a tap was dripping I would think the sink would block and the dripping tap would flood my house. If I made a mistake at work I would be fired and unable to get another job. That kind of thing.

Anxiety is the one thing my strategies don’t always address. I hate my anxiety and wish it would just go away. It is always in the background, threatening to destroy my life. My most recent period of illness involved anxiety around home maintenance too, among other things. 

While I am not an expert in managing my anxiety I did have a few strategies which help. These are:

  • Breathing exercises. Anxiety often manifests as a physical thing. This means that physical strategies can help. Deep breathing  can be a very effective strategy for managing anxiety. I do an exercise where I breathe in through my nose for a count of four, hold it for a count of five and release it for a count of six. It is a great way for breaking the anxiety cycle. I do this every morning when I get up and also if I find myself feeling anxious
  • Mindfulness practice. Mindfulness is about grounding yourself and being in the present moment. It is great for managing anxiety. There are a number of mindfulness apps for your phone. 
  • Viewing difficult thoughts as being a person knocking on your door. You cannot help them being there but you can decide if you want to let them in. I often imagine it is Donald Trump at the door and there is no way I am letting him in!
  • Distraction. Distraction is a very useful strategy for mental health issues, including anxiety. Distraction works by you focussing on an activity which takes your mind off the anxiety. Everyone has different distractions that work for them. For me writing, TV and work are god distractions. 
  • Saying no. Anxiety can be a result of doing too many things or getting burned out. Learning to say no and setting boundaries is a useful way of addressing this. 
  • Seeking help. It is a sign of great strength to seek help. If you have a psychologist or counsellor they can help you with anxiety. You can call a service lie Lifeline and talk through things too.
  • Friends  and family. Spending time with people you are close with can help with anxiety.   

Anxiety is actually a natural response linked to survival. When we are in danger we go into the fight / flight / freeze / fawn response. This is based in our evolution. If a tiger is chasing you then your body and mind will go into anxiety to enable you to survive. The difference now is that the things which make us anxious are rarely life threatening, We are going into a response which is a hang on from an earlier time. We can; also find ourselves in a constant state of anxiety. Anxiety is not ‘bad’ and we can’t get rid of it. In fact it would be dangerous to have no anxiety or fear but it does need to be managed if it is causing issues. 

Autistic people do tend to have higher levels of anxiety than most people. I think this is due to a number of reasons including the trauma we are so often subjected to and the fact that the world is so confusing and hard to navigate. I hope the strategies in this post are helpful (and don’t; open the door the Donald Trump!)

Autism and mental health – helpful strategies and personal reflections

CW: mental illness

I am just recovering from a major episode of mental illness. I have had a diagnosis of schizophrenia since 1995 and have taken meds for it since then. I wanted to share a few thoughts and strategies about autism and mental health with you.

The way my illness works is that I get really anxious about something over a period of several weeks or months. After the anxiety comes psychosis. People often misunderstand what psychosis is but it essentially means you lose touch with reality. When I am psychotic I get a range of symptoms. In the past I have firmly believed I was dead and in purgatory. I hear voices and see spirits and dead bodies and I get very confused and scared. I think things on TV are real – I remember being at my GP clinic where there was a war movie on the TV in the waiting room. I thought the war was real and happening in the actual waiting room. I was terrified that I would be shot! I also get paranoid and think people are going to hurt me. I remember thinking a police officer was a criminal pretending to be a police officer and that they were going to kill me. I also remember calling the police once and saying someone was going to kill me. The officer asked if I was on medication. When I responded that I was they hung up leaving me terrified! Psychosis is not fun. After the psychosis finishes I usually get really low mood and / or a manic episode and then I have suicidal thoughts and plans and intrusive thoughts. It usually takes me about three years to recover from an episode of illness.

As I write this I have been in a residential mental health service for almost six weeks. I am going home on Monday. I came here to avoid going to hospital. It appears to have worked and I am feeling lot better. In my 46 years I have spent three years in psychiatric hospital. I have no plans to add to that total!

I often joke that I wrote the book on mental illness and autism. I actually did – or coauthored it at least! Along with Dr Jane Nugent and Dr Emma Goodall I wrote The Guide to Good Mental Health on the Autism Spectrum in 2015. Every single strategy I use is in this book along with heaps of other helpful advice. Mental health issues often present differently for autistic people which can lead to invalidation from health professionals. I remember when I had my old blog post under my dead name the title of the blog included ‘autism and mental health.’ I received a lot of criticism from people who said autism and mental health are different things. Um, I knew that! The title of the blog reflected I am autistic AND have mental health issues rather than that they were the same thing! However some people do conflate the two. Just to be clear, autism is a neurological difference which is not acquired and mental illness is a psychological and / or psychiatric health condition which is acquired. You re born autistic and it is a different sort of operating system. You acquire mental illness and it is related to brain chemistry and / or thinking rather than neurology. However, autistic people do seem to be more likely to acquire a mental illness due to things like being subjected to invalidating and traumatic experiences such as bullying and violence.

One of the main issues autistic people experience around mental health is clinicians not understanding autism. Misdiagnoses can happen and happens often. The most common misdiagnosis for autistics appears to be borderline personality disorder as autistic traits can look like characteristics of borderline. A misdiagnosis can be really unhelpful as diagnosis determines treatment meaning people might receive treatment which is unhelpful or even damaging. Autistic people who are misdiagnosed may be prescribed inappropriate medication or other interventions like electro-convulsive therapy (ECT). Clinicians not understanding autism can also lead to difficult and unhelpful therapeutic relationships. Autistic people can be viewed as manipulative or combative even where this isn’t the case. If you find a good clinician then keep them! 

Medications – even when prescribed for the correct diagnosis – can impact on autistic people differently. One person may require a small amount of meds and another may require significantly higher doses than most.

Autistic people often have alexithymia. This is also known as emotion blindness. It doesn’t mean you don’t have emotions but that it is difficult to articulate them or be aware of them. It is a related issue to interoception. It can mean people look like their emotions go from zero to 100 very quickly but what is actually happening is that emotions may have been building up for some time but the person is unaware of what is happening with their emotions and can’t see that there is a problem until it is at a critical level.

Some things to be aware of that impact on mental health include:

  • Getting adequate sleep
  • Avoiding being around toxic people
  • Having positive social contact – if you need it
  • Having effective medication – if you need it
  • Being able to manage stress and stressors 
  • Being able to engage in your passions and interests 
  • Practicing mindfulness / breathing exercises regularly. This can help with alexithymia and interception issues too
  • Finding some distraction techniques that work for you. Distraction is a great technique where you focus on an activity and it helps take your mind off the issues you are having 
  • Find a good clinician – you can ask around autism groups in your area to get recommendations 
  • Spending time with friends / family / family of choice if you can 

I hope my thoughts and strategies have been helpful. I am glad my mental health is doing better. I hope yours is doing well too 🙂 

“Impostor!!” Impostor syndrome, status anxiety, autism and intersectionality

A good friend and advocate friend of mine recently received an award. This was most excellent news and it is much deserved as she does incredible work in the community. I was very happy that she received the award, however my impostor syndrome went into overdrive! I thought that I would never get an award, that the organisation what hosted the ceremony must hate me as they didn’t invite me to the event and that this meant that ALL autism organisations must hate me because nothing I do is of worth or value. Also my followers would probably all desert me and nobody would ever want to read my books ever again! Wow, all that from one friend winning a well-deserved award! Impostor syndrome is not a new thing for me. I have experienced it for many years. I think it comes from a mix of feeling devalued and being anxious that I am not good enough.

A quick Google search defines impostor syndrome as “the persistent inability to believe that one’s success is deserved or has been legitimately achieved as a result of one’s own efforts or skills.” It is a challenging thing to deal with and leaves you doubting your capability and even your value as a human being. It tends to happen despite any accomplishments you may have. In my case this mismatch between my self knowledge and what I actually do is particularly marked. I have written nine published books, given hundreds of presentations including one for TEDx and many major conferences.  I have sixteen awards and finalist certificates, dozens of media appearances and a very large following on social media. Impostor syndrome would not seem very logical given all my accomplishments but I always say anxiety doesn’t listen to logic and I think impostor syndrome is a kind of anxiety.

Looking more broadly, I think there is a big intersectionality consideration around impostor syndrome. White cis gender heterosexual abled men do not seem to suffer from it in the same way others do – although I accept there may be exceptions to that. However, it does seem to be largely an intersectional issue. I think that this is because members of equity or intersectional groups receive constant messaging from society that we are somehow wrong. We get invalidated, stigmatised, bullied and gaslighted a lot which often compounds our experience of imposter syndrome. A person who is confident in themselves, who likes and values themselves and is not subject to discrimination is probably less likely to experience impostor syndrome than a person whom has spent their life being discriminated against, belittled and invalidated.

Autistic people are definitely prone to impostor syndrome. We are so frequently given messaging that we are not OK, that we are somehow broken and in need of fixing. Autistic people can find ourselves doubting who we are and minimising our skills and achievements. Autistic people often belong to additional intersectional groups so can get a double – or triple – whammy of the kind of thinking which fosters impostor syndrome. There are also gendered considerations with this. Traditionally women and girls are ‘supposed’ to not put themselves forward and to downplay their achievements. This can contribute significantly to impostor syndrome. I was told as a child to not be ‘proud’ and any confidence I displayed tended to be treated as a negative quality. Impostor syndrome can impact on your life in a big way. Imagine going for a job and not thinking you have any relevant skills? This happens, and it happens a lot for autistic people. It’s hard enough to get a job for autistic people without a bunch of impostor syndrome and self-doubt being thrown into the mix! It can colour our whole experience of life and our sense of who we are.

There is a cousin of impostor syndrome which is called status anxiety. A quick Google (Google is clearly doing well out of me today!!) defines it as the constant tension or fear of being perceived as “unsuccessful” by society in materialistic terms”. This is the result largely of living in a world that has what are essentially some pretty odd notions of success. People talking about ‘real’ jobs and valuing people based on their income or career is really harmful. So many autistic people are unemployed, underemployed or employed in unsuitable jobs that status anxiety can be a real problem for us.

Essentially what I want to say about all of this is that success is subjective, your job does not define your worth and that you are enough just as you are. Now all I need is to apply that to myself and we will all be happy!

Autism and disclosure at work – to say or not to say

I am returning to work tomorrow after a month on sick leave for mental health issues. This has got me thinking about work, particularly my being out as autistic and having a mental illness in the workplace. 

The concept of disclosure at work is a challenging one for many of us. A lot of people are wary to talk about their autism or other neurodivergence in the workplace fearing discrimination. Sadly there is a very good reason for this and many people have been discriminated against at work due to their autism, other neurodivergence, mental illness, disability or a range of other things. Traditionally workplaces tend to have a problematic view of disability and difference. While this is changing, many people have been discriminated against before and understandably want to avoid it happening again. This can lead to them not disclosing or talking about any health conditions or differences, fearing a repeat experience. 

While I understand the need many people have for not disclosing I tend to take the opposite approach. I am out loud and proud about my autism, ADHD, schizophrenia and also my gender identity at work. Through doing this I definitely risk discrimination and stigma. However, I am a public figure in the disability world so it would be almost impossible to keep my autism diagnosis from my employer. With my mental illness I just figure it is easier to be ‘out’ especially if I get unwell and need to take leave. Being out also allows me to request reasonable workplace adjustments to help me manage at work. It also means colleagues and managers know I am ‘different’ which means they can accommodate my needs and understand why I might act differently. I have been out at work for over fourteen years and have had a few difficult encounters as a result but mostly my working life has been inclusive and most colleagues and managers have been respectful. And I suspect that the colleagues and managers who were not respectful probably would have been rude to me even if I didn’t have any neurodivergences or mental illness! 

So what approach do I recommend for disclosure? I always suggest to people that they make a strategy around disclosure at work. Things they might include in this strategy could be whether they want to disclose at work? Who will they tell? What will they say? When will they tell their manager and / or colleagues (e.g. at application stage, at interview, when they are offered the job or after they have started)? Each job, workplace and team is different which means your strategy might need to be adjusted for different workplaces. Consider your strategy around disclosure every time you are looking for work or when you make a change if you already have a job.

It is important to note that disability discrimination in employment is illegal in many countries. However, it can be hard to prove that discrimination has occurred, particularly in the interview and recruitment stage. An employer could quite easily say ‘you weren’t the best candidate for the job’ and there is no recourse for you in that situation even if you know or strongly suspect that discrimination was a factor. Be aware of your rights and the relevant employment law in whatever country you live in.

Some recruitment processes can inadvertently discriminate against autistic people. Things like job interviews can be highly problematic for autistic job seekers. An interview basically favours confident extroverts – a group which many autistics do not belong to! There are intersectional issues around recruitment processes too. Research has been conducted into the relative success of candidates with ‘foreign’ sounding names against those with English names. The results clearly demonstrated boas in favour of the English names. Belonging to other intersectional groups can severely compound discrimination and exclusionary practices affecting autistic candidates. Even if you succeed in the recruitment stage, employment can be challenging for autistics with unwritten workplace rules, small talk and colleagues and managers not ‘getting’ us. Autistic employees can frequently  churn through jobs and are often employed in roles which do not utilise their skills and experience, underemployed, unemployed or outside of the labour force. However, many autistic people – including myself luckily enough – do very well at work. Many of us have significant skills enabling us to excel at work. I have found disclosing my autism and mental illness at work has helped me because my managers and colleagues understand that I am a bit different and can support my needs. It is also a lot easier for me to be ‘out’ as I don’t need to pretend to be neurotypical or to not have a mental illness. 

There is no one neat answer to the question of disclosure. What works in one situation with not in another. I wish that we could all find a supportive, respectful workplace where we can be our authentic selves. Yes, let’s have that please. 

And I am really looking forward to going to work tomorrow.

Fighting transphobia

CW: Reference to transphobic violence

I recently read my discharge notes from a hospital admission last year. The doctor had written ‘Yenn is a 45 year old female and identified herself as ‘binary gender…’ Um, sorry doctor, wrong on many levels! I am not female and I identify as non-binary gender not binary gender. That is kind of the point! As a transgender and non-binary person this sort of thing happens to me all the time. It is infuriating to say the least. That a hospital doctor is so ignorant of the narratives and experiences of gender divergent folks  is simply mind boggling to me. There is official knowledge of gender diversity in Australia as evidenced by laws in some states around gender on birth certificates and the options people have to change their names and gender on things like passports so surely a hospital caring for people with mental health issues should also be aware of these matters!

There is a lot of ignorance around gender diversity and it makes me very sad, frustrated and angry. I encounter it all the time. Some of my trans friends are subject to violence and aggression from strangers. In fact being transgender puts people at a significantly greater risk of violent attacks, including murder. This has been the case for a long time and is absolutely horrific. My gender expression is what I would call androgynous but many people see me as female in my expression and assume I am a woman. This means I am most likely at a lower risk of random transphobic violence from strangers. However I am at the risk of what could be seen as a kind of dismissiveness. People assume I am female and continue to think this even when I tell tham I am non-binary. I had a colleague at a former workplace say to me after I came out to them ‘oh but you are a real girl!’ It was highly invalidating and made me feel very unpleasant. People are constantly misgendering me and calling me a ‘lady’. It is extremely frustrating and upsetting. I am proud of my non-binary identity so having people just dismissing it is very hurtful.

I might not have trouble with aggression from strangers but I get plenty of transphobia from people who know me as a non-binary advocate. I recently had a person who had been a friend for many years spray me with a shower of transphobic hatred, telling me that she would never use my correct name or pronouns and telling my my beautiful cat Mr Kitty had died ‘from a broken heart.’ This person was one of those bigots who hide behind feminism. It was extremely hurtful. I also had someone tell me I shouldn’t be involved in a women’s exhibition. This was despite that fact that the CEO of the organisation hosting the exhibition was themselves non-binary! I even had someone tell me I shouldn’t wear a skirt because non-binary people don’t wear ‘female clothes’. I just thought they were clothes – I had no idea clothes had a gender! Could I wear pants / trousers or are they ‘male’? Maybe I should just wear my undies?? 

Jokes aside, these are things which are indicative of some major issues in society. They have a big impact on transgender people. I am all for supporting people to be out loud and proud as their wonderful authentic selves. The attitudes and behaviours discussed in this piece are all things which would push people into the closet and make them afraid to outwardly express who they are. Bigotry pushes people into the closet. It makes people doubt themselves, it makes people afraid and it makes them hate and question themselves. I am against bigotry in all its forms but as a transgender person I am strongly against transphobic bigotry.

What do we do to challenge this bigotry? The first thing I would recommend is for people who as not trans themselves to be genuine allies. Stand up and be counted alongside your trans siblings and challenge hatred. Make bigots aware that they will be challenged if they spew forth hate. Validate and support your trans siblings. Challenge hatred wherever you see it and be open about being an ally. And for trans folks? Well some things which have helped for me are to call people on their bigotry when it is safe to do so. Also when the hateful ex-friend mentioned above said all her nastiness I reflected that she had the problem, not me. Challenge that idea of ‘I am not trans enough…’ I really struggled with that one until a friend said ‘are you trans? Then you are trans enough’. Connect with your trans siblings – online and in person, read about the experiences of other trans people. There are some great books for autistic trans people including Uncomfortable Labels by Laura Kate Dale and Spectrums, edited by Maxfield Sparrow (which has a chapter by me in it!). Oh and The Autistic trans Guide to Life by Dr Wenn Lawson and me as well! 

I am a very proud non-binary person and seeing bigotry is always going to really bother me – be it intentional or (for example) due to hospital doctors having no clue about gender diversity! This is an area where things are evolving and could go either way. I see the work of advocates and allies as working to tip the scale in the direction of respect, validation and inclusion. I will do this for as long as I am able.    

Overcoming institutionalisation

I did a calculation earlier this year about the amount of time I have spent in the psychiatric ward in my 46 years. It was just over three years, not counting residential programs which weren’t hospital – that is about an additional 18 months. Then I spent over three years in prison in my early twenties (long story – refer to chapters 6-8 of my autobiography, ‘Finding a Different Kind of Normal.’) So I have spent eight years of my life in one institution or another. Institutions are a big part of my life.

For many years I was what may be termed institutionalised, especially in prison. Being in a place where I had absolutely no control became quite attractive. I would be released from jail and then not cope in the oh so big and scary outside world so I would commit a crime in order to go back to prison. I was not alone in this. Many of my fellow inmates were also serial recidivists who found the outside would too big and scary. Several of these people would I think have gained an autism diagnosis had such a thing been available to them. The odd thing was that I was in far much more danger in jail than out and I absolutely hated it. But there was an alluring attraction to the place. I am pretty sure that it was because I liked to be contained and to have no power or control – or responsibility.

Even after I left prison for the final time I struggled with these issues. I had to make lists of reasons why I was better off in the outside world. Thank fully I overcame my recidivist tendencies but I still struggled with the institution. I became quite independent and was proud of myself for this but I have a nasty mental illness that periodically enters my life and tries to destroy everything I have worked for. In 2001 I had a hospital admission which was a pivotal moment. I had become unwell after having extreme stress related to a part-time job I had at the time. In the past, hospital would have triggered the need I thought I had for institutional care. In past admissions I had done everything I could to go to hospital and be cared for. However in this instance that was not the case. I was delighted to be discharged. What’s more I didn’t want to go back to hospital. Maybe I was cured of my need for the institution?

Many years passed with no hospital admissions. I got myself a masters degree, wrote a book and started a professional job. I also bought an apartment. Basically I was as far removed from the serial recidivist I had been in the past. I had ‘arrived.’ Sadly my mental illness didn’t agree and in 2010 I became extremely unwell. My accommodation was causing me stress and I didn’t want to live there. I ended up in hospital and found myself in and out of hospitals for the next three years. That need for the institution returned but I had so much to lose. I had created for myself a near-perfect life and I wasn’t about to throw that away for the sake of being cared for. There was a war raging within me. I ended up meeting my saviour – the very beautiful and highly therapeutic black cat known to all as Mr Kitty. I was institution free for another six years. As time has passed I have become further and further removed from the institution. I am currently in the middle of a period of illness which so far has lasted 18 months and I am absolutely free of the wish to be in hospital. I genuinely want to avoid the place. I think I have finally won this particular and very long-standing battle.

Some thoughts on institutions are:

  • Institutions tend to breed the need for institutions. The longer you spend there the more you feel the need to remain or return
  • Some things can trigger the wish for institutional care. I avoid watching  hospital themed shows when I am unwell as I tend to find myself wanting to go there if I see hospital on TV or in movies 
  • Institutions perform a role and are not always bad. I accept that there are times when I do need to be in hospital and it can be beneficial
  • Institutions – especially places like psychiatric wards, aged care facilities  and prisons – can have staff who are hostile and cruel. Sadly there places tend to be ‘out of sight, out of mind.’ Society needs to care more for people in institutional care. 

My former psychiatrist, who sadly passed away last year, told me something which illustrates the points in the piece. I reflected to him that had I been born thirty years earlier, as a person with schizophrenia, I would have been in a long term institution. My psychiatrist looked at me and said ‘Yes. You would have been working in the kitchen because you are reliable.’ That was a chilling moment and made me extremely grateful that we live in a world where I can do all the good things I do. 

My support and little black kitty therapist

What can make the world of work wonderful?

There is a well-known statistic that autistic people are less likely to be employed than others, by a significant margin. This is not at all OK and needs to change. 

You might know that I talk a lot about employment and autism. And you might also know that I am a career public servant of over fourteen years’ tenure in a middle management role. I am on leave at the moment due to medical reasons so I wanted to reflect on my work. I should add that my managers and team are very supportive and are looking out for me which is lovely. Evidently something is working in my employment world so I thought I would share some of the things I have in place which help to make my world of work pretty wonderful.

When I applied for my job in 2006 a number of friends poured metaphorical cold water on my ambition. One friend told me that he had done a similar role and was terrible at it so there was no way I would be able to do it. Another said that sort of job ‘isn’t autism friendly.’ I responded that if that was the case maybe I should do my best to make it autism friendly. And that is essentially what i have done. I have put in place measures which make work work for me. I have listed a few of them. I will say that most of these strategies won’t be as effective in a  toxic work environment although some of them can help to avoid things getting that way. Work can be really hard for autistic people and what works for me will not always translate to everyone else’s world of work. Keeping these things in mind, I thought I would share my strategies in case they are helpful to others.

  • I have always disclosed my autism and also my mental illness (atypical schizophrenia) to managers and colleagues. I know disclosure is often a tricky subject but for me the decision was already made as I had a profile in the wider community as an autistic person. This default sort of disclosure was worrying at first but I soon discovered  it meant I could talk about any supports I needed with my managers and that if anything went wrong that I got to work through it rather than suffer in silence. (It is important to note that decisions around disclosure are personal and individual and sometimes it is not a good idea to disclose so this is just my personal experience.)
  • I have always been actively involved in disability advocacy within my workplace as part of the disability employee network.
  • I always ask if in doubt as to anything. Assumptions are the parent of most screw-ups in the workplace.
  • If I need an adjustment or change I ask for it and explain why I do and how it will enable me to work better.
  • I am unashamed about being autistic. I talk about autism and my advocacy work with colleagues. I pull people up – kindly – when they say something unhelpful like ‘we are all on the spectrum’. 
  • I support other autistic people at work and allistic parents of autistic kids too. 
  • When I have had issues with managers being difficult – micromanaging and that sort of thing – I confide in someone and where possible I change my role. There is little more soul-destroying at work than to have a manager who you don’t get along with.
  • I have always sought out mentors and role models at work. These can help build my career and give some perspective on the work I am doing.
  • I hold myself to an exemplary standard in ethics and integrity. This is partially because there’s a few years of being unethical in my past but also because it is good practice to do so and is the right thing to do.
  • I listen to music on headphones pretty much all day. This blocks out the noise in the office which I find distracting and also means I get to listen to nice music all day long which makes it easier to work.
  • I don’t mask. If people have an issue with me then it is their issue. While that might sound hard, I ahed found it improves with practice. 
  • I am grateful to have my job. I reflect on this every day. Before I worked in the public service I was on the disability pension. I was very poor and had no choice as to where I lived. This meant I lived in a public housing estate where the neighbours were not very happy people and used a lot of drugs and alcohol. Because I was desperate to be liked I tried to fit in, meaning I drank a lot more alcohol than I wanted to. One of my neighbours was a stalker and I was tormented by her but I couldn’t afford to leave. I knew I needed to get a full-time job in order to move  into my own place. Fourteen years later and I have a beautiful rental property with no difficult neighbours. I can choose where I want to live which is amazing.  Being employed for all that time has meant other positive changes, including in my self-esteem and how I view myself. So I am very grateful that I get to do such a lovely thing five days per week.

The trouble with eye contact

I am currently staying in a residential service for people with mental illness. I am quite unwell. Part of this is low mood and paranoia. I feel despondent and sad and am frightened of other people. My voice is currently very quiet and I really struggle to look at anything which isn’t the ground. As an autistic person I have no need for eye contact in order to communicate. Eye contact is all about the other person I am talking with, not me. When I am healthy I will look in the general direction of the person I am speaking with’s face as I know a lot of neurotypical people like to think I am making eye contact. In fact I rarely make actual eye contact and if I do it is accidental as eye contact is overwhelming and invasive for me. My ‘eye contact’ – I.e. looking in the general vicinity of a person’s face – is all for them. I do not need any kind of eye contact in order to communicate and in fact genuine eye contact makes it very difficult for me to communicate!

When I am unwell, as I mentioned, I tend to look at my hands or the ground. The effort required to lift my head and pretend to look in someone’s eyes is beyond me. In the service I am currently staying at the workers have all been saying I need to make eye contact in order to communicate. While the workers are all very lovely and try to be inclusive, this particular piece of advice is very difficult for me. I am thinking I will need to give them a quick in service on autism, mental health and eye contact!

Faking eye contact is tricky. If I am not careful I will actually make genuine eye contact and then feel like I can see into the soul of the person I am conversing with! Other issues with faking it include not knowing how long to look in their direction for as well as remembering to look at their face in the first place (which I often forget to do!)

So what is the big deal with eye contact? A lot of people think if you are not looking them in the eye then you cannot listen to what they say. Maybe this is true for neurotypical folks but for most autistics the opposite is true. We often find eye contact invasive or in some cases physically painful. If I accidentally look in someone’s eyes it is like I can see directly into their very soul – just awful and very hard even if I’m not unwell! This idea that eye contact is the pinnacle of communication is also culturally determined. Many cultures view eye contact as disrespectful, particularly between different generations. However in the western world there is a focus on eye contact for communication. Like many cultural differences, a lot of people see this as the only way of doing things despite the fact it is not.

Focusing on eye contact is something that has happened to generations of autistic kids. Some ‘therapies’ (and I use the term extremely loosely as they are not in the least bit therapeutic) punish autistic kids for not making eye contact. This horrifies and angers me as not only is it a case of forcing unnecessary actions it is also punishing kids for not doing something that causes them stress and even physical pain. So the autistic children can either have to do something unpleasant and painful or be punished for not doing something unpleasant and painful. This is not OK on a large number of levels.

The problem is not that autistic people need to learn to make eye contact. The problem is that neurotypical people need to understand the reasons that not everyone ‘does’ eye contact and to know that communication does not necessarily require eye contact.

I will be talking to the manager here about the apparent requirement that I make eye contact in order to be able to recover from my episode of illness and I will explain that I’m not making eye contact anyway, even if it looks like I am! And the whole issue has got me thinking about ‘adapting’ or ‘masking’ because my approximation of eye contact in order to keep others happy definitely falls within the umbrella of masking. Wouldn’t it be nice If I could just look at the floor and have a conversation without having to try and make the person I am conversing with think I am looking them in the eyes!