Why empathy is not as simple as it seems

I recently posted a meme about the myth that autistic people lack empathy. I said that it is not true that we lack empathy and to say so was unhelpful and damaging. I got some interesting responses to this post including a few from autistic people saying they have low or no empathy. This got me thinking about my own experiences and has led to me feeling the need to unpack the idea of empathy and autism as it is possibly more complex than dismissing the experience of those who have low or no empathy.

When I was younger I always thought I had no empathy. I didn’t feel sad when other people were having a hard time. If someone died they were simply not in my life any more and I accepted that. I didn’t understand the consequences of my actions so while I didn’t want to hurt anyone if I did then I would not feel much remorse. However I also had the ability to take on the same emotions of those around me as if by osmosis. I now care immensely and want to ensure everyone I interact with is feeling happy and doing well. I worry about friends and am very sensitive to the moods of those around me.

All of this paints a picture of quite a complex experience of empathy. I am at once lacking in empathy, experience hyper empathy and experience what I would call practical empathy (empathy from a logical, ‘thinking’ perspective without an emotive component). I imagine that other autistic people share these experiences or their own versions of them. 

One thing which always worried me was my struggle to grieve when anyone died. Death to me is inevitable and when someone does they are no longer in your life. There is no way of contacting the person and they exist in your memory. As a child and young adult I never grieved. I didn’t know what it meant to grieve. When someone left the world they left the world. I could not contact them so I got on with life without them. I just felt a bit sad and wished there was a phone to heaven so I could tell them about my day! Dr Wenn Lawson talks about the concept of object permanence and autism rather than people lacking empathy and I agree with him on this. While I miss a friend or relative who has passed they are no longer in my world and that is OK.

When I was younger I struggled with aggression. I was upset and regretted my actions but I didn’t feel anything emotive. The way I overcame violence was through practical, logical thought. I met some people who were victims of violence and I saw how it had affected them. I died not want to be responsible for anyone feeling that way so I stopped the aggressive behaviour. This is not empathy in the traditional sense. It is what I would call practical empathy. It also related to consequences. Understanding consequences was a major issue for me – maybe in a similar way to the object permanence issue I think. Once I had figured out what the consequences of my actions were and that they were negative I changed how I acted.

Empathy is a complex thing. It is not well understood. I think most autistic people that I have met have quite a lot of empathy of one sort or another. Even people who appear to lack empathy – like me in the past – may actually have quite a lot of it. It may seem that someone lacks empathy when in fact they express and experience it in different ways. I do think it is a harmful myth to say that autistic people lack empathy. The idea for this myth came from a clinician in the UK some years ago but it has remained a pervasive issue. It harms autistic people to be told we lack empathy – especially for people that have lots of it and those who experience it differently to others. This is another area where greater understanding about autism is essential. 

In my own life it has been the case that I struggled with consequences for some years and with emotional empathy but that I also have a lot of the kind of empathy where I can pick up on the moods of others as if any osmosis and also in recent years that I have a lot of practical empathy. Practical empathy is where a person does kind things and supports others in practical ways rather than through an emotional connection. I have immense amounts of practical empathy. It drives my advocacy work and writing. So while I don’t grieve  much when someone passes I do a whole range of things to demonstrate that I care for others. Empathy is more complicated than it is often portrayed. So there are some autistic people who are highly empathetic in different ways, some who are empathic in some ways and not others (like me) and some who have low or no empathy. This isn’t just for autistic people. Some neurotypical people also fit those descriptions. Levels and experiences of empathy are not right or wrong, they just are and that is OK and not a reason for criticism or judgement.  

“I’m sorry, I have no idea who you are” – living with prosopagnosia (face blindness)

When I was a small child my mum, brother and me went to Australia from the UK to see my mum’s relatives. My dad stayed behind in England. Apparently when we got home I was terrified of this man with a beard who for some reason was wanting to hug me! Yes, it was my dad. I had forgotten what he looked like and did not approve of this hairy man being friendly with me! Many years later and I had to meet my brother in the city. I had not seen him in some years as he had been overseas. I was terrified that I wouldn’t be able to recognise him. 

I have quite severe prosopagnosia. This means that I struggle to recognise most faces. If you asked me to describe someone I would be able to describe their hair colour and style and not much else. I remember going to an exhibition opening of a show at the Australian Centre for Contemporary Art that I had work in. It was a prestigious occasion and there were hundreds of people there. At the time I was involved in the documentary Alone in a Crowded Room. The filmmaker, Lucy, looked very similar to the curator of the show at the gallery. I spent twenty minutes talking to someone who I knew was either Lucy or the curator but I had no idea which one! It turned out to be Lucy who realised I didn’t recognise her! At the time I was ashamed of my prosopagnosia. I thought it embarrassing and somehow a failing on my part. I now know if is a neurological difference like autism and nothing to be ashamed of.

When I was a child prosopagnosia was a liability. There were two girls in my year seven class who looked very similar and who were both active bullies. I had no idea which one was what! I think this experience was probably what made me start to feel highly embarrassed about my face blindness. It was only relatively recently that I have accepted prosopagnosia as being just another part of what makes me who I am. I even tell people now. And yes, I quite often say ‘I am so sorry. I do not recognise faces. It’s not personal, it’s just a ‘thing’”. This is so much easier than trying to pretend I know someone and figure out who they are –  usually unsuccessfully – from the context. It also gives me the opportunity to educate people about prosopagnosia an autism and ADHD and a bunch of other useful things! “Hi, I am Yennski. I am an eternal advocate.” 

For some reason I find it easier to recognise gender divergent people and androgynous-looking people than cis gender people. I only recently discovered this. I have no idea why it is but it is interesting. The main thing I use to remember people is an unreliable one – their hair. I have met others with prosopagnosia who do the same thing. It can be very ineffective as people often change their hair!  I don’t usually look people in the face and I wonder if I did whether I would do better at recognising people. I am not sure about that. I struggle to determine facial expressions and make eye contact. I will point my face in the direction of the person I’m talking to as neurotypical folks seem to like – and expect – this but I am not actually making any observations of the face or looking at the eyes. A lot of autistic people have told me they also have prosopagnosia and I wonder if whether we looked more at faces whether we would have less of an issue with this? I’m not sure.

I saw somewhere that the area of the brain people with prosopagnosia use to see faces is the same area of the brain that most people use to process inanimate objects. I have told people that my brain processes their face in a similar way to which their brain processes tables. There are lots of very fine tables in the world but it is hard to discern a specific one from hundreds of them! As such the fact that I forget faces sort of makes sense. I see prosopagnosia as what I call a ‘Venn diagram’ attribute. By this I mean that lots of autistic people have it and it overlaps with autism and a number of other conditions. It is very common for autistic people but not exclusive to autistic people. Other attributes I see as Venn diagram attributes include dyspraxia, ADHD, dyslexia, mental illness conditions and sensory processing issues to name a selection.

I have managed to reconcile myself to my prosopagnosia. I am no longer ashamed of it. Far from it in fact – It is part of what makes me who I am and it gives me the opportunity to talk about advocacy things – which is one of my favourite activities!

Autism, masking and mental health 

Content warning: bullying, prison

It took me a long time to learn how to ‘mask’ in order to fit in with neurotypical peers. I tried desperately to be accepted in high school but with no luck. I changed how I dressed, how I spoke and even how I spelled my name in order to be accepted but none of my efforts made a scrap of difference –  I was hated however I spoke and dressed and nobody knew how I spelled my name anyway! 

It wasn’t until I was twenty that I truly learned how to camouflage being Yenn and replaced my Yenn to suit the situation I found myself in – in that case prison. I learned to mask in prison because I realised that if I was my rather geeky self I would be the target of all the bullies in the prison – and prison has its fair share of bullies! In my first week as a prisoner I frantically observed how my fellow inmates looked, what they liked, what made them angry, how they spoke and what kind of language they used. I learned that criminal culture was like any other culture, with its own rules and expectations. I figured out that if I simply followed the ‘rules’ of my new peer group that I would be accepted. This turned out to be true. I became very adept at masking to the extent that I lost any sense of who I was!

When I was released from prison for the last time in February 2000 I left my adopted identity behind but I didn’t actually know who I was. I decided to observe people I admired and respected and be like them. Even now if you asked me what I was like before about 2001 I would be unable to tell you! I continued to mask for a few more years though. I moved to a public housing flat in 2003 and was anxious about being a social outcast with my new neighbours, most of whom were unemployed and had substance abuse issues. I masked quite impressively here too – during the days I was going to university and trying to build my skillset to get a ‘real’ job while at night I would drink heavily with my neighbours. I was always terrified of my respective worlds colliding! I remember being on the phone to a university friend in front of one of my alcoholic neighbours once. He was horrified and said I was a liar because eI spoke very differently with the university friend than I did with my neighbours. Masking might look a bit like dishonesty but that isn’t the reason for it or the intention. 

My masking – as I imagine others would relate – was all about wanting to fit in and having a low opinion of my ‘true’ self. For some – including me in prison – it is a matter of survival. Masking can enable autistic folks to navigate a largely neurotypical – and sadly often quite hostile – world. In a word that doesn’t treat autistic people particularly well, masking can allow us to avoid discrimination or bullying. I have even heard of autistic people. becoming bullies themselves as a survival mechanism – which I think is a related but different element of masking to what I am describing here. Masking serves a purpose and it isn’t really ‘wrong’ but it comes with some challenges. 

One thing which can relate to masking is difficulty in gaining an autism diagnosis where clinicians meet someone who is accomplished at masking and assuming that the mask is the actual person. Another issue can be that people assume a person is ‘high functioning’ – whatever that means – and doesn’t need any support when in fact the person might find life extremely difficult. Masking also – often subconsciously – feeds into the idea that a person is inadequate and needs to fit in with neurotypical folks in order to have any value. It is also exhausting to mask. It is common for autistic young people to mask all day at school then come home and have a meltdown because of the effort and stress involved in masking. Masking is often not a good thing for your mental health. This is for a variety of reasons, including:

  • It validates negative views about yourself
  • It reinforces the view that being autistic is somehow ‘worse’ than being neurotypical
  • It takes a lot of effort
  • It can result in anxiety around being ‘discovered’
  • It is not good for your sense of self-worth or pride. In fact it is the opposite. 

Not masking can be incredibly good for your mental health. As someone who doesn’t do it any more after doing it a lot I can attest that I feel better about myself. This can be a dynamic thing where masking decreases and self-confidence increases. I have a friend who told me the reason I don’t suffer burnout despite my huge workload is that I don’t mask so I have a lot more energy. It is also good for your mental health to like and value yourself and not masking demonstrates and builds a sense of self-acceptance and pride. 

So how do you overcome masking – if you would like to? For me it seems to have happened when I became an autism advocate. I realised I was doing it on one level but it can be hard to pinpoint when you are doing it. My act of changing my character in 2000 certainly helped but it did take a few more years to be unashamedly Yennski. I think surrounding yourself with other autistic and other neurodivergent people is a good thing to do in this space. And also surrounding yourself with people who like and accept you as you are. Building your sense of pride in who you are and seeing your autism as a positive – or at least neutral – attribute can help too. It can take a while to get past masking. For some people stopping masking is very challenging. I imagine in my own experience in prison. If I had been my true Yennski self in all my Autistic and non- binary glory I suspect my life would have been very challenging – and probably a fair bit shorter! 

I don’t think it is as simple as saying masking is ‘bad’ and not masking is ‘good’. However I will say that I am infinitely happier for having stopped masking and it has helped me discover who I like to be.  

Hope – and what it has to do with Oscar Wilde

Content warning: self-harm, disasters, war, COVID  

If you look at the world now there does not seem to be much hope. There is a dreadful war, a pandemic that shows no signs of going away and in Australia we have had catastrophic fires and more recently horrific floods. The world seems to be coming to an end. I even posted on social media ‘Is the world ended yet’. Someone thought I was being flippant and insensitive but I wasn’t. I was deadly serious. It seems that everything is going wrong. Climate change has started to show its impact and it seems to be set to get steadily worse. There seems to be a total lack of hope in the world. Lead singer of the Doors said ‘nobody gets out of this alive’ and he was right. We are all going to die. It is easy to despair and see no hope in the world.

I want to talk about Oscar Wilde. That may seem an odd thing to say in relation to hope but in my life there is a good reason to talk about him. The picture that goes with this post is a postcard of Oscar Wilde that I have carried with me for almost thirty years. If my house caught fire I would probably take Oscar Wilde before anything else (and don’t worry – I don’t have any children or pets!!). So what is the significance of Oscar Wilde and why does he relate to hope and be so meaningful to me? 

The answer starts in prison – well the Melbourne city watch house to be precise. In 1994 I got involved with an older man who was a  criminal. We committed crimes and thankfully we got caught. (I say thankfully because had I tried to get away I am pretty certain this man would have killed me.) I had never been in prison before and was terrified. I went to the watch house and was thrust into the word of crime and drugs – a world I would remain in for another five years. When I first went to prison I was terrified. I didn’t know how to be a prisoner. I did my best to mask but deep down I was very afraid. When I was in the watch house a number of people came to drop things off for me. My parents gave me a very warm tracksuit which came in handy as it was freezing. Another friend gave me cigarettes which I could give to my fellow prisoners in order to make friends. And one of my art school friends gave me Oscar Wilde in the form of a postcard. Oscar Wilde was a prisoner too and I always felt connected to him. That act of giving me the postcard was a link to the outside world and to my time at art school – a much happier time than my time as. a prisoner. Oscar Wilde signified a more hopeful time where my life was positive and I was happier.

Oscar Wilde has come with me everywhere since my friend dropped him off to the watch house in 1994. I own about five things from before 1998 when my partner at the tome stole all my things and moved to Queensland. I am delighted that one of the five is Oscar Wilde because he carries so much meaning. Oscar Wilde has survived dozens of moves, homelessness and a further four prison sentences. 

I carried Oscar with me for encouragement and to remind myself that there was more to me than the criminal and drug addict I became. The thing is that I went from a place of having no hope to having quite a lot. In the late 1990s I was the most desperate and miserable person you could ever imagine. I engaged in quite extreme self harm and people who knew me thought there was no hope for me. I was expected to spend the rest of my life in prison and to die very young. In my own thinking the future was basically next Tuesday. I had no vision for my life and wanted suffering and death. But there was hope in my life. Things did change. I decided I wanted a better life and – through a lot of challenge and difficulty and grim determination I made that life for myself. There was hope and Oscar Wilde was there all the time reminding me that I could be someone different, Not only I am no longer a desperate and miserable prisoner, I am actually a highly accomplished and engaged person. I definitely have issues but I also have what could be considered a great life and I change the world. Not bad for a chronic recidivist and drug addict with schizophrenia! There was so little hope for me but I overcome my issues and demonstrated that there can be hope in the darkest of places.

I know my life doesn’t really equate to the wider world but I like to think that I achieved the apparently impossible in terms of hope and that if I could do that, well maybe there is some hope for the world as well. The other thing about the world is that desperate circumstances can bring out good things in humanity and encourage people to be kind. I am mostly an optimist and want things to be OK and imagine that they can be. I think there may be hope for us even if it is hard to see. If prisoner Yennski can fly away out of the prison yard into somewhere happier, if Oscar Wilde can oversee the most extreme and positive change then maybe there is hope for everyone. I don’t know but I hope this will be the case. 

I’m not talking about a river in Egypt – all about autism, mental health and denial 

Content warning – mental illness 

In 1994 I was diagnosed as Autistic. In 1995 I was given a diagnosis of schizophrenia. It took me 7 years to accept my autism and a further 4 years to embrace it – sort of. I was even more challenged with accepting my schizophrenia diagnosis – fifteen years in complete denial and a further ten of having some notion the diagnosis could possibly be true, maybe. In 2021 I finally properly accepted my schizophrenia diagnosis – after 26 years! 

This interests me. It interests me as the individual who was so very deeply in denial about key parts of myself but it also interests me as an Autism and mental health advocate. 

I want to talk about my denial for each of my main conditions and neurodivergences. When I was diagnosed as Autistic I was 20 and a prisoner – long story. (If you want to know about the whole prison business I would suggest my autobiography, Finding a different kind of normal which talks all about it.) As 20 year old prisoner Yennski I had a visitor – a clinical psychologist called Vicki who visited me a few times and asked lots of questions and showed me cartoons to decipher – which was completely impossible –  and sequences of numbers to remember – which was easy! Eventually Vicki told me I had something called Asperger Syndrome which was a kind of autism. I completely dismissed this and thought Vicki had been engaged by my parents to make excuses for my bad behaviour. I thought the whole autism thing was nonsense. It was a diagnosis of ‘nerd’ to my mind and I was not a nerd. I was a big tough criminal (well, I thought I was!) 

I spent the next few years feeling very anxious if anything about Autism came on the TV. My parents introduced me to an American Autistic woman who lived near them and while I really liked this woman I could not make a comparison between her and me. I found anything to do with Autism very triggering and unpleasant. 

When I finally came to accept my Autism I was in psychiatric hospital for my schizophrenia. The doctor asked about my diagnoses and for the first time I told him I had an autism diagnosis. After I was discharged I asked my mum to send me my autism diagnosis. I left the community mental health clinic I had been attending because the chief doctor there thought I wasn’t autistic. In fact I had some nasty history with this doctor and his habit of misdiagnosing any woman who came into his ward with borderline personality disorder. Rather than be repeatedly invalidated by this doctor I looked around for a psychiatrist who specialised in autism. I found a lovely doctor who said that if psychologist Vicki had diagnosed me as Autistic then I was definitely Autistic!

It was great to accept my diagnosis but it was quite a journey to get to actually embracing it. I remember talking about autism with my university colleagues. It was as if my autism was a shameful secret to be whispered about in dark corners. For some time I was happier talking about having been a prisoner then I was talking about my autism. It was a gradual process to acceptance. I didn’t suddenly see the light and excitedly tell everyone I knew about my Neurodiversity. What I did do was to write a book – I mentioned it earlier in this piece, my lovely autobiography. The process of writing and publishing the book and of being mentored by the awesome autistic author Polly Samual not only turned me into an advocate it also finally got me to a place of autistic pride. It was lovely.

I will now talk about my schizophrenia diagnosis. My main problem with schizophrenia was the stereotypes and also some of my failed friendships with people with the diagnosis. I always thought people with schizophrenia were drugged out zombies who were unable to hold down a job. The lead singer of  an eighties band got the diagnosis and the group they sang lead  vocals for disbanded never to be heard of again. This didn’t sound like me, especially not aspirational me from about 2001 onwards. I knew that I had a mental illness, that I took antipsychotic medication for it and that sometimes I became psychotic but in my mind I didn’t have schizophrenia.

One of the scary things about schizophrenia – other than the illness itself which can be pretty brutal – if the representation of people with schizophrenia in the media. We tend to be murderers or violent in other ways. There are few heroic or positive characters with schizophrenia in the media and popular culture. I didn’t want a diagnosis of murderer or a diagnosis of unemployable which was my understanding of schizophrenia at the time. In addition the attitudes a lot of people have around schizophrenia tend to be very stigmatising and discriminatory.

 Despite the fact that every competent psychiatrist I have ever spoken with   has confirmed my schizophrenia diagnosis and I have been prescribed anti-psychotic medication since 1995, I still struggled with the label. I became unwell with psychosis in 2010 and for the first time ever I entertained the idea the the diagnosis may be correct. As with my Autism it took many more years to properly accept it. In fact, I will share a secret with you…I still don’t 100% accept the schizophrenia diagnosis. I do most of the time but sometimes I doubt it again. The diagnosis is a hard thing to feel a sense of connection with.

I am mostly accepting and embracing of my different identities around neurodiversity and psychosocial disability, I am able to publicly talk about schizophrenia for the first time ever which is great. I think the main reason I struggled to accept my diagnoses was all the stigma and prejudice in the world and the pervasive view that people with the kids of experience I have cannot do much and a whole bunch of other deficits. In a world that valued Autistic and schizophrenic experience I think I would have embraced both a lot more quickly. I think accepting and embracing these kinds of things makes life a lot easier. I don’t blame people – including myself – for being in denial and it can take a long time to get to a place of acceptance.  

Why meltdowns are not poor behaviour and some therapies are not therapeutic

Content warning: Damaging / traumatic ‘therapies’

One thing I come across sadly quite frequently is the idea some people have that an autistic meltdown is poor behaviour or them trying to get attention or be difficult or a range of other negative things. I can attest that this is actually not the case and is harmful to autistic people and to the understanding  people have of autism. An autistic meltdown is not the result of intentional poor behaviour. In fact most autistic people do not want to have one and feel bad and self-conscious if one occurs.

So what is an autistic meltdown? Basically is it what happens when a person is overloaded. Usually the overload comes form things like too much – or unpleasant – social input, sensory overload or emotional overload (such as can be caused when someone has hyper-empathy and is around another person who is distressed. Anxiety can compound the issue too. A meltdown is like a release valve for overload. Imagine your mind is a pot of water on the stove with a lid on. As the water heats, the pressure increases. If you do not remove the lid the pressure has to release but there is no way for it to get out causing the pot to boil over. A meltdown is one of those things which can look like something that it isn’t.

Most autistic people I have met have wanted to avoid meltdowns and feel bad when they have one. It is not just children who have meltdowns. I have definitely had my fair share in adulthood. It is very difficult to explain meltdowns to people who don’t understand them. Even when I try to avoid one this can be perceived as poor behaviour. Many years ago when I was in a different workplace, I was involved in a disability inclusion group at my workplace. We had booked an event as a fund-raiser for a disability charity. I had met the CEO of this organisation previously and had difficulties with her. On the day of the event I was quite overloaded emotionally anyway. When I went to the event I did not expect the CEO to be there but they were. I had to leave because I knew if I stuck around I would have a huge meltdown and probably damage the reputation of my workplace. However my leaving was interpreted by one of the other organisers as me not wanting to do the work and when I explained what happed this person said I needed to ‘learn how to control my emotions’ which was ironic because that was exactly what I was doing! It illustrated clearly to me that greater understanding of autism is required. 

The concept of behaviour is quite fraught in the autism world. Autistic people often behave in ways which make sense to us but not to others. There is also a pervasive view that autistic perspectives and experience are of less worth than others’ – or let’s face it, often our experience is viewed as having no worth at all! 

One issue autistic folks – and often vulnerable children – come up against is therapies which aim to change our behaviour. These therapies are based on the view that the way we behave – interact, socialise, engage – is wrong and somehow needs ‘fixing’. As a neurodiversity advocate this goes against everything I promote and hold dear. These ‘Therapies’ are often based in punishments and sanctions and force autistic kids to do things which go against how we approach the world. Usually the target of these ‘therapies’ is not us doing anything bad at all, just not typical. The ‘therapies’ seem to come from the premise that if you aren’t neurotypical you need to be coerced into looking more neurotypical. They are also premised in a very narrow view of what is good behaviour. Eye contact for example is often a focus of these ‘therapies’. Making eye contact is NOT essential to communication. Many cultures do not do eye contact and view it as rude. And if eye contact was necessary for communication then nobody would be able to have a conversation using a telephone! These supposed norms which autistic people are forced to comply with are really unhelpful.

The worse thing about these harmful ‘therapies’ is that there is research evidence showing that they cause post-traumatic stress for many people subjected to them. Please don’t make our kids do things that hurt us and that invalidate our way of being. Autistic people are valuable and beautiful just as we are. If we have a meltdown support us because we will almost certainly be more upset about it than anyone else, especially kids but adults too. Help us to be our amazing selves and understand that our behaviour may be for different reasons to that which you think. Ask us – in a supportive and inclusive way – to explain what we are doing if you are wondering. Remember that we really don’t need fixing. Imagine ‘fixing’ Hannah Gadsby, Tim Burton, LadyHawke, Wenn Lawson, Alan Turing, Einstein or any of the other amazing autistic people in the world. Don’t punish a meltdown. Instead seek to understand why it happened and support the autistic person to find some deescalation strategies and ways to promote their wellbeing to avoid having a meltdown in the future. 

Being transgender and autistic – and why toilets are political 

Content warning: transphobic bigotry

Three years ago to this day I changed my name to Yenn. There were many reasons for this but the main one was my gender identity. I had previously come out as non-binary and didn’t like my previous name (or ‘dead name’ as we call it in the transgender community.) It was very gendered feminine and I had never felt it described me at all. It was like an old coat that didn’t fit and was a bit stinky but there was nothing else to wear so I (metaphorically) wore it. Becoming Yenn was one of a number of things I did to affirm my non-binary, trans gender identity. I love my Yennski name.

I am thinking a lot about gender at the moment. Yesterday I gave a presentation online to some lovely parents of autistic and transgender kids and last weekend I made – with the help of a lovely friend – a PDF document kit for parents of transgender and autistic kids. This kit has gone all over the world which makes me very happy as I think it will help a lot of parents and their kids. 

Autistic people are often trans and gender divergent. There is a bunch of research on the topic and anecdotally I am always meeting other trans autistic folks and their families. 

I am an extremely out loud and proud non-binary person. When I came out I spent about three months just wanting to dance down the street! It is lovely to feel empowered and proud to be who I am but being trans and autistic is sadly not all pride and joy. There are a lot of bigots out there who would want us to disappear. Bigotry around gender identity is pretty entrenched and bigots don’t seem to realise the damage they are causing.

Being on the receiving end of bigotry can fill us with self-loathing and strip away any confidence we might have had. A lot of bigots hide behind religion or a strange – and highly dubious –  interpretation of feminism. The people who suffer are transgender folks. It can be soul destroying to come up against bigotry – overt or covert. For me bigotry often comes when people find out I am transgender. I don’t really look like a stereotypical trans person – whatever that is. I always feel like some people have two boxes in their mind for two options of gender – boy gender and girl gender. If anyone doesn’t neatly fit into the boy or girl box then they just assign whichever they think is closest. I get this all the time. I get called ‘ma’am’, ‘lady’ and ‘she’. It is extremely frustrating and upsetting. It is like my identity is being erased or invalidated. It could be worse. I have some trans and intersex friends who have been on the receiving end of abuse and even physical violence  from strangers due to looking different. This horrifies me and makes me very angry – and I am rarely an angry person. 

Now I want to talk about toilets. Toilets are political. No really, they definitely are. My experience of toilets is this… I don’t want to use the gendered toilets because neither option offered is me. This usually means I need to use the accessible / mobility bathroom when I am out. My worry with that is that I will be on the end of judgement as a result as I don’t have a visible mobility or other medical issue (yes I know. This is an issue as well, possibly for a future blog post). What this means is that I usually go to the female gendered one as it where I am least like to attract unwanted attention. I hate going in the gendered bathroom so will often hold on. I have been told off for using the ‘wrong’ toilet before which is something I would prefer not to have repeated as it was humiliating. 

Apparently transgender people have a much higher rate of urinary and kidney issues for this very reason. Some trans people simply don’t use a bathroom outside their homes. This issues can preclude people from being able to do important things like going to work. A lot of cis gender people have never come across this issue but it is a huge problem. People have been assaulted and threatened in toilets due to bigoted people’s assumptions about gender. If an organisation puts in a gender neutral toilet it makes such a difference. Being able to go to the loo is a pretty fundamental human right but for so many people it is highly fraught at best.

I just want to finish with some points on how you can support trans and gender divergent autistic folks, particularly kids and teens.

  • Put any bigotry or assumptions you might have on hold
  • Learn about gender diversity. Read some accounts by autistic and gender divergent people like Maxfield Sparrow, Dr Wenn Lawson or even me! Education and understanding makes a huge difference
  • Use their correct name and pronouns, even if it seems odd. Our pronouns are how we want people to refer to and understand us. Pronouns are a big deal
  • Listen to the person without judgement
  • Be kind and respectful and affirm to them that they have your support and love – several times if necessary
  • Know that gender identity is not a ‘lifestyle choice’ – or any other kind of choice 
  • If needed, access supportive services (e.g. gender clinic, the organisation Spectrum Intersections, Minus 18)
  • Normalise gender diversity and coming out 

I am delighted to have been Yenn for three years. It seems longer. It IS longer. I was always Yenn really, even if I didn’t know it at the time. I is a joy to be my non-binary, autistic self most of the time. My only regret is that it took me 43 years to work out I am trans! Sending much love and strength to all the autistic and transgender people out there.

Owning my scars

Content warning: trauma, mental illness, self-harm, prison 

On this day 22 years ago my life changed significantly. I left prison for (what I sincerely hope) was the last time. I walked out the gate with all my worldly possessions in a cardboard box. On my most recent foray into the outside world my partner had stolen everything I owned and moved to Queensland so I was left with nothing but some artworks, some books and the clothes I was wearing when I went to prison some 21 months previously. It was a new start but I was haunted by my scars – physical and emotional.

If you look at me now, 22 years later, the physical scars are evident. I had a major issues with self-harm and have scars on my wrists and legs. For years I didn’t show any part of myself other than my face, hands and feet. I worried that people would ask me about the scars and I would be catapulted into the past once more. I would wear long sleeved tops and jeans in summer to hide the scars. I still don’t wear short sleeved tops at my workplace thinking that scars are somehow unprofessional. I am working on that. 

The physical scars are a reminder of the emotional scars which are significant. When I was a prisoner I was the most desperate and sad character you could imagine. I spent most of my time there in what was called the management unit. This was for people with particularly poor behaviour. I would have meltdowns and attack people, usually staff, and so I did my time very hard.  A lot of people only know about prison from books and movies which glamorise it somewhat. I can attest that there is no glamour in the place. It is traumatic and frightening. I am not proud of my actions but the response form prison authorities was pretty extreme. I spent a lot of my time in the suicide observation cell, not because I was suicidal but as a punishment for poor behvior. This involved wearing a canvas dress with no underwear, sleeping on a concrete bed, having a camera on me all the time including when I went to the toilet and the light being on all the time. I would have spent at least two months of my life in this place. I call it judicial torture. It was truly awful.

It’s funny talking about these things because they are so far removed from my life now. I am now a kinda bourgeois public servant and author. I have attended a number of events at Parliament House and the ACT Legislative Assembly and and have a bunch of awards. I am considered to be a community leader. I am even on a mural but I have this traumatic and shameful past. I also have a history of being bullied when I was a kid and teen. This all strongly informs who I am now even if it seems completely removed from the Yenniverse these days. 

I have become a very kind and forgiving person. I am adept at letting things go and forgiving people. I don’t know why this is but it makes life much easier. I understand why people hold onto anger but I don’t really do it myself. I wish the bullies had left me alone and I wish I didn’t meet a partner who introduced me to crime resulting in five years of my life being lost forever to prisons, drugs and institutions but I don’t hate any of them for it. I did my own set of dreadful things in my twenties and nobody gives me a hard time about it now so I would be a hypocrite to judge and blame others for their poor treatment of me. I hope they have learned a better way of living, like I did, but I don’t hate them

Back to the physical scars… for the past few years I have worn short-sleeved tops. This was almost impossible for many years. I hated clothes shopping because all they had was three quarter length tops or short sleeved ones. I would wear T-shirts but with a long-sleeved top underneath, even if it was hot outside. I now wear short-sleeved tops and enjoy it. It is actually a total liberation. I feel like have taken back ownership of myself. I own my scars, they do not own me. My scars are actually part of what makes me who I am. They are as much a part of me as my pink and blue hair or my love of kitties. I am a survivor and that is not something to be ashamed of. It is actually something to be very proud of. In 22 years my life has become so unimaginably different that I often forget what things were like in that horrific world that was my life in the 1990s. I carry trauma definitely but I also carry hope.   

And this is a shameless Yennski book plug but if you are interested to know about that difficult part of my life I wrote about it in my autobiography:  https://uk.jkp.com/products/finding-a-different-kind-of-normal 

Disclosure at work – pros, cons, my story and  a bunch of other (hopefully useful) information 

The term ‘disclosure’ relates to sharing a personal attribute at your workplace, usually disability and / or health conditions. The decision to disclose – especially for people with so-called ‘invisible disabilities’ – can be a challenging one. Of course all employers should be inclusive and respectful but they are not always. Neurodivergent / autistic people in my experience frequently find the disclosure issue challenging and often don’t know whether or not to talk to their workplace about their autism or other neurodivergences. 

Some pros around disclosure include:

  • You are eligible to access some workplace modifications – if you need them – such as adaptive technologies or a fragrance-free workplace etc
  • You do not need to feel like you are keeping a secret
  • You can potentially access other supports that you might need
  • If you need to take regular leave or have flexible working conditions (e.g. reduced or other non-standard hours) disclosure will make that a lot easier 
  • Managers and colleagues may be more likely to be supportive and understanding if they know you have a disability rather than making assumptions based on suppositions

Some cons around disclosure include:

  • Some people – including managers – are very ableist and may discriminate against you
  • Your capability may be questioned 
  • You may miss out on advancement and promotion opportunities 
  • You may be given work that requires a much lower skill level than you actually have.

The decision to disclose is your own. In Australia you do not need to disclose a disability or health condition unless it makes you ‘unable to perform the inherent requirements of the job.’ This means for many of us there is no legislative reason to tell anyone about our disability, making the disclosure decision a decision for us and nobody else to make. 

Yenn’s story – disclosure

I have been working in the public service since February 2007. When I applied for my graduate role I ticked the box for disability in the application so I disclosed as early as I possibly could. I decided to disclose because I had recently published a book about my life as an undiagnosed autistic person and there had been some media. I figured publicity around my book had ‘outed’ me so there was no reason to keep it from my workplace – they could discover I was autistic by googling me!

I have never regretted my disclosure. I am also out about my schizophrenia too and have not regretted that either. I have been very fortunate to have mostly very supportive managers over the years. I am a hard worker which doesn’t go unnoticed. One good thing about disclosing was that when I had two periods of extended leave due to my schizophrenia (in 2010-12 and 2019-21) I had no issue with explaining to my manager why I was taking leave because the already knew I had an illness and needed leave. I am a very honest and up front person so keeping such a big secret as not mentioning my autism or mental illness at work seems illogical and scary to me but I know not everyone feels that way.

The value of a strategy

I always recommend to people that they make a strategy for disclosure, especially when they are applying for or starting a new job. 

First of all, conduct an analysis of the pros and cons of disclosure that you identify and see whether you want to disclose or not. Then identify:

  • When to disclose. This could be when you apply, when you get an interview, when you start the job or a while after you start the job.
  • Who you tell. This would usually involve telling your immediate supervisor but could include more senior managers and / or some or all of your colleagues. 
  • What are you going to say? I would recommend writing up some prompting points and even practicing the conversation with a friend or family member. 

Positive workplace culture 

A positive workplace promotes and encourage employees to disclose. You can have some idea of how supportive a workplace by whether they celebrate disability – and / or other diversity – days of significance (such as International Day for people with Disability or RU OK Day etc). Positive workplaces promote respect amongst their staff and many provide training and resources to support respectful behaviour. Positive workplaces often  act to address bullying and harassment promptly and support their staff to take leave if they need to. Positive workplaces support flexible working arrangements for all their staff (non-standard hours, part-time arrangements etc). 

Positive workplaces may promote and champion diversity. That being said, some workplaces are a bit patchy – you might get an amazing manager in one part of the organisation and a dreadful one in another. For this reason it is important to consider your disclosure strategy for every new role you do as what might work in one team may not work in another. 

Many years ago I got head-hunted to apply for a job in the corporate world. On paper it was a dream job but I was worried about potentially jumping headfirst into a toxic work culture. I asked around with friends working in that area and they all said the CEO – who I would have been working directly to – was quite problematic. I was very grateful and declined the interview. If you know anyone who works in the area you are applying for or moving to it can help to pick their brains and ascertain if there are any issues you should know about.

Disclosure can be a challenge because you often do not know how it will be received until you do it. It is a bit of a leap of faith. In my experience it has been largely a very positive decision but others have different experiences. In my opinion it is usually better to disclose simply because it is easier but that is just my view. I really wish is wasn’t such an issue because all workplaces were genuinely respectful and inclusive.

A parents’ guide to autistic representation – co-authored with a parent 

Content warning: Abusive ‘therapies’

This blog post comes from a friend who is a non-autistic parent of an autistic child. I must give them credit for much of the blog as they wrote a lot of it but I have added my thoughts in italics.

Dear Yenn: I am a parent of an Autistic young person who really appreciates your work. Especially early on in the post-diagnosis process, I wish someone could have helped our family and our child’s school differentiate between organisations and professionals who are respectful of Autistic people and those who are not. We could have avoided a lot of unhelpful mindsets and ‘advice’. I would be so keen to get your thoughts on this!

What I Wish Someone Had Told Me:

  • Look for Autistic-led organisations and organisations that actively amplify a diverse array of Autistic voices 

There are a number of excellent autistic-led organisations. I would recommend the I CAN Network (empowering for young autistic people), Reframing Autism (advocacy and activism) ASAN (activism and advocacy) and Spectrum Intersections (Gender diversity and autism).

  • If an organisation is Autistic-led or predominantly staffed by Autistic people, you will know it from their work as they will celebrate that as a point of strength and pride. 

Absolutely. And they will tell you as well! Autistic-led organisations can make a huge difference for autistic people- kids and adults alike. Autistic people know autistic people and experience.

  • Watch out for Autism-oriented groups that have no meaningful Autistic representation in their leadership or who overstate Autistic contributions (e.g. ask one Autistic person to contribute). 

Yes. Organisations who have no autistic people on their board or who have tokenistic representation are not helpful. They might overplay the level of autistic representation or simply not include autistic people at all. 

  • Watch out for any Autism-oriented organisation or professionals whose advice or resources do not actively encourage families, teachers and others to seek out Autistic voices as part of their learning journey.

Absolutely. And organisations and individuals who ‘blow their own trumpet’ and are arrogant and self-serving. There are a lot of these organisations and people out there and they don’t help.

  • Look for organisations and professionals who use respectful language. Red flags: language that positions Autism as a disorder, defect, disease or something that can be ‘cured’ or ‘mitigated.’ More red flags: functioning labels (‘high functioning’ ‘low functioning’), people who go out of their way to avoid using the term ‘Autistic’, etc.

Absolutely. And individuals who make fun of autistic people. People and organisations who focus on autism being a ‘tragedy’ and autistic people as being a burden are also a big problem. Words are very important as they demonstrate how someone thinks and feels about a topic. Also using pathologising language like ‘they are obsessed with…’

  • Look for organisations and professionals who are willing to share the stage and promote the work of other advocates/organisations. A good sign: Organisations that provide appropriate credit when sharing the ideas of others (e.g. tag content creators in their social media, collaborate with other respectful organisations).

Conversely organisations that take credit for the work of autistic people or pay neurotypical speakers but not autistic ones are a problem. 

  • There are some great examples of parents of Autistic kids in the education/advocacy space who operate from a place of respect for their children and all Autistic people. Two examples would be Jess Wilson of Diary of A Mom and Meghan Ashburn of Not An Autism Mom. – Beware of parent-led organisations and social media pages that violate the privacy and dignity of their children, position Autism or their children as ‘burdens’ and discount or disrespect the work of Autistic advocates.

The parent space is quite fraught and there are still organisations which do more harm than good. That being said many parents are incredibly inclusive and respectful and love their autistic kids just as they are. Also parents are often on a journey from a problematic place to an inclusive one. When I speak with parents I always take that into consideration and I aim to be a positive autistic voice in their journey helping them to build their autism knowledge and understanding.

Some other Yennski thoughts on these topics are…

There are autistic people who are unhelpful as well. I won’t name them but there are a few out there who are holding back the whole movement sadly and using their autistic voice for bad instead of good. Being autistic does not guarantee that a person will have a helpful message!

It is really important to have autistic voices front and centre in the autism world. In fact if professionals and organisations do not have autistic voices front and centre they aren’t really much help to anyone. 

It has taken a while to get to where we are now with more representation but there is still a long way to go. Autistic advocates are not always respected and it can be difficult to engage with some organisations because they are disrespectful of autistic people. Those ‘warrior parents’ and clinicians that don’t respect autistic views are a big problem.

Another issue is the ‘therapies’ that are far from therapeutic. These include the kinds of things where autistic kids are punished for stimming or not making eye contact. They can traumatise autistic kids. If you are looking for support for your child please avoid these methods like the plague as they hurt children. Sadly there ‘therapies;’ are quite prevalent, especially in the USA.

Autistic vices are so important because autistic people know autistic experience. If you want to know about autism, ask an autistic person. If you have autistic children, check pout the work of other autistic people – and especially children. There are some amazing advocates that are kids, including Summer Farrelly. There are also a bunch of autistic adults who were autistic kids once and have a lot of useful things to say! The experts in autistic experience are autistic people. 

I hope you found this helpful. Thank you to my friend for sending through the material to drive this post.