All out of spoons – energy and overload

On Thursday morning my alarm clock went off at 6:30. Normally I would leap out of bed and greet the day, excited to go to work and ‘rock the casbah’ (which is Yenn-ese for doing good work and generally trying to change the world). However, on Thursday I lay in bed for as long as I possibly could, not wanting to get up. I went to work and did my thing but I wasn’t quite me. When I got home I lay in my papasan chair repeating ‘I am SO tired’ and questioning ‘Yennski Yenn, are you OK?’  These were not good signs. I identified that I was quite depressed and also quite overloaded.

Friday was marginally better and today about the same but my energy and enthusiasm is pretty much non-existent. I am forcing myself to write this post because I need something in the nature of an output to put in my weekly email which goes out on a Saturday!! 

There is a theory called spoon theory which relates to energy levels and overload. Spoon theory is a metaphor that is used to describe the amount of mental or physical energy a person has available for daily activities and tasks. The theory was developed by Christine Miserandino as a way to express how it felt to have Lupus. A lot of people in the disability and mental health space apply spoon theory to their experiences. I think it is a good metaphor and I use it frequently in my advocacy work.

Autistic people can often benefit from this way of understanding navigating the world and managing escalation around meltdowns and shutdowns. If you imagine that an autistic person has ten ‘spoons’ for the day.  They wake up and have not had enough sleep. That might have taken two or three spoons. Their cat vomits on the floor. Cleaning it up tales a spoon or two. Their child won’t get dressed for school and they have an argument about this. Another few spoons. For many of us we can be all out of spoons by before lunchtime. Then imagine that something really stressful happens – we make a mistake at work, we have to have a haircut or medical appointment. Even if we had a full complement of spoons these things would be very difficult but if you have no spoons left it is unbearable and can result in overload and meltdowns.

The good news is that spoons can be replenished. When I was overwhelmed on Thursday I replenished my spoons by talking to my mum on the phone and watching TV. While it didn’t totally fix the overload it definitely helped. Some ways of replenishing spoons can include soothing sensory experiences, engaging in passionate interests, spending time wth pets and other animals and doing something you enjoy. It can also help to have downtime. When I am getting overloaded I often tell myself to just stop and do nothing for a while.

Saying ‘no’ can be a great way of preserving spoons. Often we get overloaded because we have offered or agreed to do things which are stressful or overwhelming. It is OK to say no. My good friend and coauthor Dr Emma Goodall once gave me a little buzzer which says ‘NO!!!’ in a variety of ways when you press it. While this was meant partially as a joke it is actually really helpful. If I get asked to do too many things I just press on the buzzer and remind myself that it is OK to say no. I reflect that there are many other autism advocates who would love to do the thing which I don’t want to or don’t have the energy to.

Autistic people are particularly prone to burnout and overload. Spoon theory is a way we can understand this overload and avoid getting so overloaded we have meltdowns or burnout. And just as an amusing way to end this post, the spoons in the picture are mine and they are actually gold plated! I sometimes send people the picture and say ‘If you are low on spoons have some of mine. They are gold plated.’ And they are 🙂

‘Am I unwell enough?’ Managing life, work and mental health

Content warning: Mental ill health

I have a mental illness. This is far from a secret – I talk about it all the time. I joke that I have made a career of oversharing. Right now my mental state is pretty tenuous and I am debating whether I should call the crisis team or not. My clinical manager was off work today so when I called expecting to talk to her I was told she was on leave. This left me feeling quite alone and vulnerable.

The interesting thing about my illness – or one of them at least – Is my capacity to work full-time, write books and do all manner of things while I am quite unwell. I remember a friend saying how amazing it was that I was unwell but that I was able to sell my house last year. I never worked out if that was a criticism and admonishment for me not to complain about my illness or if it was said from a place of thinking I was impressive. Looking back I think it was impressive to renovate and sell a property when I had only been discharged from hospital a few weeks prior and that the hospital stay was eight months! I didn’t think I was doing anything unusual at the time. I needed to sell my house so I did what you do to sell it. I am quite stoic and determined which I think makes that kind of thing possible. 

I was not always able to accomplish things when unwell. I was unemployed / outside of the labour force from 1994-2003 and accessed disability payments. I remember being reviewed for my payments and worrying I would be too well to keep receiving them. My psychiatrist who filled out the form said ‘I will use the magic word: psychosis”! She was correct in thinking that part of my illness would warrant a continuation of my income support payments and it was a few more years before I started my current job. 

My illness is a tricky one. Basically what happens is that if I get very anxious over a long period – or, as happened in one instance I take ADHD medication – I lose touch with reality and go into a psychotic state which is frankly terrifying, like living in a nightmare. I also get mood issues, usually depression but sometimes mania. Life becomes hellish and I often want to check out before I am supposed to. The first time I was psychotic I had no idea that I was unwell. I thought the universe was ending and I was the only person who knew this was happening.  Very, very frightening. I call it my Alice in Wonderland experience – more the scary confusing bits that the whimsical ones though. I have taken medication for psychosis since 1995 and – unless there is a cure for schizophrenia – will probably have to do so for the rest of my life. The meds have side effects but I don’t usually consider living without them as it is likely that would end very badly.

I manage an immense workload both in my advocacy work and my day job. My managers at work and I agree that I do the work of two people. My capacity for hard work is huge. You might think that this is a negative in terms of mental health but it really isn’t. In fact work – day job or advocacy-related – is an excellent distraction when I am having a hard time. If I can focus on my work I am spending less energy devoted to worrying about my mental health. This doesn’t always work for if I am very unwell I cannot focus on my work. When this happens I take leave or downtime – depending on which sort of work I am doing. I take my work very seriously and love that I can devote myself to it.

I sometimes wonder if people think I don’t have as much drama with my mental illness as I say I do. This is because on the surface I am doing things that most people could only do if they were in a good mental state. The thing with me is that I don’t find anything I do very difficult whereas I think most people probably would. Most people would think that writing a book was a very difficult and involved process but for me writing a book is something I do most years and I really enjoy. Definitely not a big challenge for me. The same goes for my paid work. I have been at the same level at work since 2009 and know my job pretty much backwards so it isn’t really a big challenge to do my work. Sometimes even I doubt the level of my mental illness and then remember that I take major medication and every few years end up in hospital for a long time. I think comparing people’s mental health and judging what you think they should or shouldn’t be able to do is not really all that helpful.

I am proud of my accomplishments as a person with a mental illness / psychosocial disability. Life can be really challenging and frightening but I am still here. I have a 100% strike rate of keeping going and getting through the difficult bits. And I know my work around mental health has helped a lot of people. If my story and experience can help others to manage their mental health then I am doing something right!

A hard journey to love – my relationship with my family

I want to write about relationships. I am currently staying with my lovely parents in Beechworth. I am extremely close with my parents and love spending time with them. People often remark that I am lucky to have such a good relationship with them but luck isn’t really the reason.

Anyone who has read my autobiography will know that my teen and early adult years were, to put it bluntly, hellish. I was a very rebellious teen, joining the socialists at 15 and arguing constantly with my parents until I moved interstate at the very young age of 17. When I was 20 I met a very dangerous man and ended up committing crimes with him and going to prison. I spent the next five years in and out of institutions, I acquired a serious drug problem and a serious mental illness diagnosis. The upshot of this was that my family relationships were very strained.

When I was released from prison for the last time in 2000 I set about making a better life for myself. I wanted to have a professional job, an education, a mortgage and a suit. I left behind my difficult past – or I tried to at least. My relationship with family was very problematic but I wanted it to be better. My mum would talk to her friends about my past and it made me very embarrassed and quite angry but I was determined to make my relationship with my family better. I was particularly concerned that my parents would pass away before we made our peace with one another.

The improvement in our relationship was not entirely my doing but I think I shouldered a fair amount of the work. The lovely thing was that our efforts to repair family relationships has worked. It definitely didn’t happen quickly but it happened. I now reflect on how my parents supported me when many parents would have given up. I had a visit every month from them when I was a prisoner. Apparently when I first went to jail an elderly and rather conservative relative told my parents if it was her that she would move to Peru! To my parents great credit there was no thought of moving to Peru and they were determined to stick around. They reflected that the other middle class prisoners’ families stopped visiting or didn’t visit at all and they didn’t want to do that to me. When I understood the depth for their love I could forgive them any more minor issues and reflect on the power of that love. 

I have gone from thinking my parents were the enemy when I was a teen, to thinking they were the root of all my issues when I was in my twenties to being annoyed by them but loving them a lot in my thirties to where we are at now which I like to think is a place of grea love and appreciation.

My mum is like my best friend. This is what people see but beneath any strong relationship is a difficult journey. Relationships often take work and there is pain and anger and challenges a lot of the way. I am so glad to have worked on my relationship with my family. It was a difficult thing but it has yielded the most precious thing. Thank you to my family and thank you to me. I know that without thew support I had from my parents I probably would have never made it out of the world of drugs and crime. I will be grateful to this for the rest of my life.   

Thoughts on autism and gender diversity – personal and political

Yesterday was Christmas Day. I did not go to family lunch, for a variety of reasons. Instead I went to a Festivus celebration hosted by gender diversity advocacy organisation A Gender Agenda. I was a little anxious about this as the friend I had planned on going with was sick and unable to attend. In the end I braved my social anxiety at potentially being in a room full of strangers and went. I‘m very glad I did. I had some great conversations and met some wonderful people. And I felt very much at home amongst other trans and gender diverse people. Many of the people were neurodivergent too – research evidence confirms that neurodivergent and particularly autistic people are considerably more likely to be trans and gender diverse than the general population. I felt at home and accepted – as I often feel in groups of people who are neurodivergent and people who are trans.

I have been out as non-binary since 2018. It has been an amazing and liberating journey for me. This is what I posted on social media in 2018 to signal my coming out: 

I recently publicly affirmed and declared that I identify as being of non-binary gender and that I prefer being referred to as ‘them/they’ to being to as ‘she/her.’ It has been incredibly liberating and opening new possibilities to my understanding of myself and others. It makes me feel sort of young, like I am discovering more about myself than I knew was there. I am wondering why it took me so long to get to this point of identifying and understanding. There is a lot of contented happy wandering through life tempered by occasional worry and uncertainty. 

I came out to pretty much everyone in my life at the same time, which was difficult but also a bit of a relief. Given that I have a public profile it seemed easier to do it all in one go. Shortly after I came out a trans friend said that I would find but who my friends were – and who they weren’t. This was almost instantly true. Some people exited my life, either quietly or in a storm of hostility and judgement and others strengthened their support and friendship. Some people were hostile and then months later came around to a more supportive viewpoint and apologised. I discovered that people misgendering  me (using the wrong pronouns and name) was a common occurrence and one I could never work out how to appropriately address. This is still an issue now. I hate being misgendered but I struggle to correct people more than once or twice, even gently, for fear of being accused of being the person who corrects everyone. This is an ongoing issue which I am working on.

I changed my name to Yenn almost two years ago and officially changed it a few months later. I love Yenn and it felt instantly ‘right’. Many of my autism world followers only know me as Yenn now which is lovely. Changing my name was the most affirming thing I have ever done. I love it. And yes, you can call me Yennski because I love that too!

Being out is a challenge at times. Being out in the workplace is definitely a challenge but mostly a very positive thing. I have been asked to participate in some activities at my workplace for International Non-binary Persons Day which was just beautiful. I am active in the pride network at work. I am fortunate to have a very supportive workplace and I wish that this was the case for everyone. I get to give talks on gender diversity all over the world (well, via Zoom in other countries anyway). I have coauthored a book on autism and gender diversity with the wonderful Dr Wenn Lawson which is due out early next year. I have a profile as a gender diverse autistic advocate and I often talk about gender diversity and autism.

Some things have been really crappy in relation to my coming out. The first is trolling. Whenever I post about gender some sad little bully attacks me with one of a number of mean and hateful comments. I remember posting a video diary about my coming out and I got about thirty trolls leave hateful comments. It was really hurtful on a personal level and infuriating on a societal level. Another time I was asked to give a media interview in the USA and when I said I wanted to talk about gender diversity they cancelled the piece citing it as being ‘too political.’ I hate that my very deeply held personal identity is called ‘political.’ Why? Being trans and gender diverse should not be seen as being ‘political.’ Is it political to be a cis gender man? Of course not so why does my gender get seen as ‘political’? I want the day to come when gender simply is gender, not ‘political.’

I am proud of my identity and of who I am. I love being non-binary and, at age 46 I love that I have finally discovered language to describe my gender. I absolutely love seeing young people – and especially autistic young people – embracing their gender identity and discovering who they are. It is magic. I didn’t get to find language for my gender until I was relatively old so I am delighted that others will not have to go through their life not knowing their identity. 

I love being me. I had someone recently say ‘I love your sweet enby (non-binary) style.’ I love my sweet enby style too. My gender is a gift, an affirmation and a liberation. Love it. 

Post script: This will be my last blog post for 2020. Thank you to all my readers. I hope you have enjoyed the blog. I love writing it. Have a lovely 2021. 

– Yennski 🙂

Being gifted / twice exceptional: challenges and strengths

Trigger warning: bullying 

When I was a child I am told I took an IQ text. Apparently my IQ was quite high. This, coupled with my interest in reading, writing, creativity and science put me into the ‘gifted’ category. I went to a weekend program for gifted kids for a while. The kids there all played chess and I felt uncomfortable. Nobody told me why I was there and it all seemed very strange.

Not long before that I was the class clown. I hated school and the only enjoyment I had involved making my fellow students laugh. I didn’t like the teachers and spent much of my time in the principal’s office. The difference happened when a new principal started and she could see and encouraged my potential for academic and creative output rather than just juvenile stand up comedy!

I never actually realised I was supposed to be intelligent. Nobody told me so it wasn’t really part of my reality. I was top of the year in almost every class but that didn’t seem out of the ordinary. In high school bullies called me a bunch of ablest slurs based on the view that I had an intellectual disability so it took me many, many years to work out I had been a gifted child. 

Things are challenging for gifted and neurodiverse kids now too. There is a term ‘twice exceptional’ used to describe kids who have a high intellect and are also people with disability. A lot of autistic kids (and adults) are twice exceptional including – as I now know – myself. 

There are specific issues which twice exceptional people tend to experience. A big one is where people assume that because you are academically gifted then you must have no problems. People can’t imagine being prodigiously talented themselves so have no understanding of how intellect and talent do not necessarily make life easier. For me my academic prowess if anything made my life harder. This was because I stood out, I was noticeably odd and did well in schoolwork – all characteristics which drew the attention of every bully in school. Had I been more ‘average’ I imagine the bullies might have been less interested in me. In reality I was bullied every day I went to school. I hated being intelligent and remember trying to come across as more ‘ordinary’ but it never worked.

Twice exceptional people often miss out on support. People find it hard to understand that twice exceptional people can experience significant difficulties. Mental health issues are common among twice exceptional people. We can also feel distant and detached from the rest of the world. I think it is great for twice exceptional people to meet other twice exceptional people as we often have a fellow feeling and form strong friendships.

Being twice exceptional can also be wonderful. I have prodigious skills in writing and public speaking which enable me to get through to a large audience and convey information which helps others to navigate life well. I know a number of twice exceptional autistic young people and kids whose creativity, talents and passions are amazing. I imagine that these young people will change the world.

I have had people throughout my life tell me that they would love my passion and talent. This is funny because for much fo my life I would have traded my talent for the ability to be socially accepted that others seem to find so easy. Thankfully I don’t think like that now and am very proud of my talents but I feel for those who struggle with that sort of thinking. We need a world where twice exceptional and gifted people are understood and supported. It can be so lonely to be twice exceptional but it shouldn’t have to be. Listen to our twice exceptional kids and adults and build respect and understanding so that nobody wants to trade their talent for acceptance like I did. 

The power of the passion – Autistic interests

I was at a trans and gender diverse meet up today and I got talking about my books with a fellow attendee. They said ‘You found your interest. Once an autistic person finds their interest they change the world.” I tend to agree with this. It is definitely true in my experience. 

Autistic people usually have a thing or things that we absolutely love. I think that there is no equivalent level of interest in the neurotypical world. The idea of autistic joy is relevant here too. The absolute immersion in a passion it possibly unique to autistics. I know when I have a passion I pursue it wholeheartedly. When I was a kid my parents say I would take on a new interest and find out information about it instantly and inexplicably – it was like I soaked up all the information somehow as if by osmosis. It was a long time before the internet but I somehow located information sources all over.

When I was a kid I had some amazing interests. I loved fungi when I was about six and would identify many of the fungi in the forest. The lovely thing about that interest is that while I no longer have it, my mum – who is also autistic – took it up and is now an expert on fungi! Other interests from childhood were Dr Who and cats. 

An interesting thing about interests is that they can reflect how someone is feeling in their life. It is possible to have negative passionate interests. I know this because I did myself. When I was a teen I was fascinated by nuclear weapons and following that the Cold War. I was so taken with far left politics that I joined a socialist group when I was 15. My early adult life got even more difficult than my teen years and I spent time being a criminal and the most prolific drug user in my suburb. 

It is difficult when a person’s interests are negative. It is also unusual – I have only met a handful of autistic people with similar issues to my younger self. I think the interest can be a manifestation of where the person is at so to address the negative interest you should try to address the issues pushing the person towards negative interests.

Thankfully in my case everything changed and I got myself a much more positive life. When I was happier and more positive the nature of my passions changed. My current interest is autism advocacy. I suspect that this may be my interest forever. I would be happy with that. I am driven by putting as far between myself and my dodgy past as I can so my positive interest serves well at this.

One issue autistic people face with our interest is that allistic people in our lives don’t understand the value our interests have. They often criticise us for being so passionate and call our passions ‘obsessions’ as if they are unhealthy. For many autistic people our passions drive and motivate us. For many of us they are the only positive and enjoyable thing in our lives so people criticising our interests is hurtful and invalidating.  When speaking with neurotypical people about passions I often liken a passion to being in love with someone. When you are in love with someone you want to spend all your time with them. Thinking about them makes you happy and if someone said you could no longer see the object of your affection you would be horrified and think that the person keeping you apart does not like or value you and your needs. So like you would encourages friend who is in love to follow their passion, please also allow autistic people to follow our passions too!

Sometimes our passions get called ‘special interests’. I struggle with this a bit as ‘special’ in the context can be seen as a bit condescending and patronising. Why do our interests have to be ‘special’? I prefer passion, passionate interest or simply interest. Passions are such a strong and important thing for autistic people. We can get excited just by thinking about our passions. For some very lucky autistic people – including  me – our passions can become our work. I get to do autism advocacy every day and I also work in diversity and inclusion in my employer’s HR department which, while it isn’t directly related to my passion is certainly linked to the thing which drives and motivates me. 

People’s passions and interests can change over time or sometimes remain the same all their life. I wish for everyone the chance to follow and embrace your passions. It is a good way to be and is one of my favourite things about being autistic. It is a pretty amazing thing.  

Autism and the festive season

I want to talk abut Christmas – both my own experiences and thoughts and some of the considerations for fellow autistics, and particularly autistic kids.

I spent the first eleven years of my life in England. For anyone who hasn’t been to England in wintertime, it is cold. Snow, ice, frost, low dark skies. It all lends itself wonderfully to Christmas. Christmas was a magical thing for me as a child, mostly because there were lots of sparkly, shiny things, we got presents and ate magically festive food. It was also a time when my parents – who were usually quite frugal given the tough economic times – would buy my brother and I gifts. These would mostly be placed in a stocking – not one of those red and green Santa Claus ones you get now, but one half of one of my mum’s pantyhose. I’m still not sure why but every year there would be a satsuma (or mandarin for my Australian readers) right at the end of the stocking. Some years we would visit cousins and aunts and uncles, which was always chaotic and fun. I was the youngest in the family so the collected aunts, grandparents and older cousins all doted on me. There was also a lot of activities related to Christianity which mostly involved kisses from older members of our Christadelphian church and of course the Christmas story. For my autistic self, having the same carols, nativity story, food and the obligatory school play was very comforting. Little Yennski thought that Christmas was a pretty good thing.

As I grew older I liked Christmas less and less. In fact I spent Christmas in 1994, 1996, 1997, 1998 and 1999 in prison, which was pretty awful (although far worse for fellow inmates who had kids waiting for them on the outside). By the time I started to change my life for the better, I had very little affection or warmth towards that particular day on 25 December. I thought the traditions were pointless, the decorations tacky and you really wouldn’t have wanted to get me started on Carols by Candlelight! (‘has been non-celebrities, awful singing’ etc). I now have quite mixed feelings about the season. I like some elements and not others.

For other autistic people – and especially kids – Christmas can also result in mixed feelings. Often there are family traditions which autistic kids struggle with. I have seen so many parents despairing over their autistic child not wanting to be in the photo with Santa. I am with the kids on this – sitting on an adult’s lap who you don’t know and putting a smiley face on is not my idea of fun! I remember when I was a kid that I could not smile on cue – I didn’t know how to consciously arrange my face into a smile. Thankfully we didn’t have photos with Santa when I was a kid but I feel for autistic children now, especially if their parents are adamant about the need for a Santa picture. To parents I would say that if your child finds the Santa photo disturbing then just don’t do it – it is not an essential part of life and if it is causing your child major distress then is not really worth doing.

Another issue with kids and Christmas is the idea of Santa Claus. A lot of kids – and often autistic kids – work out that Santa is not real before their peers do. This can result in a range of difficult situations including the child telling this to all their classmates or them feeling they cannot trust adults as they are ‘telling lies’.  Parents can prepare a conversation around Santa Claus not being real but how kids get a lot of pleasure out of it and it can be viewed like a game or a kind of play.

Christmas can be difficult for autistic people – kids and adults – due to family dynamics. Christmas is often a time where extended family will get together. Sadly this often leads to conflicts. Where there is an autistic child or children then adults who do not usually see one another may take the opportunity to either castigate parents for their autistic kids’ ‘poor behaviour’ or worse still give the kids a hard time (such as forcing eye contact or hugs or insulting kids and their passions). Parents can prime their relatives to be respectful and understanding but sometimes this issue will happen regardless.

Christmas can also be a time of sensory overload. There is often a lot of chaos with wrapping paper and gifts and people everywhere. If kids have revulsions to food this can be an issue at Christmas, particularly as foods on the table may be different to what the child usually eats. 

There are a lot of expectations about Christmas. Kids are conditioned and primed to think it will be a fun day but sometimes it is not fun at all. Autistic kids who have a tough time on the day may worry that they have somehow ruined Christmas.

Finally there are a lot of people in the world who do not celebrate Christmas. In countries where Christian traditions are dominant this can lead to kids from other faiths feeling both left out but also feeling pressured to celebrate Christmas. These kids can be ostracised and if they are autistic this can be even more upsetting and make them question their culture, which is never OK.

Christmas can be a great time of year but it is worth being aware of the challenges autistic people can experience during the season.

“I have schizophrenia”

Content warning: Mental illness, suicide

The title of this post is a statement I find myself making quite a lot these days. I don’t mind it. It’s a diagnostic label that reasonably accurately defines elements of my life. I am comfortable saying it, even proud of my mental health survival story but this was not always the case.

The reason I have schizophrenia is simple to my mind – trauma closely followed up with drug addiction. I used the drugs which can result in psychosis (marijuana, amphetamines and LSD), not realising how dangerous it was. I was self medicating and was considered by my fellow addicts to be the most generous and prolific drug user in my suburb. I was living in a house with my dealer and a collection of assorted junkies. We decided not to pay the rent so we were all evicted. As the day came closer for the police to forcibly remove us, everyone else in the house found somewhere to go. I did not. I was anxious and constantly high. It was the catalyst for my first episode of psychosis. I ended up in hospital and was given the diagnosis there and then. I was 21. I didn’t believe it. 

At around the same time as this I was given my autism diagnosis. I believed that these diagnostic labels were for other people, not me. There was nothing ‘wrong’ with me, it was the universe that was fucked up! I spent the next few years in and out of psychiatric hospitals and jails. I still didn’t accept my schizophrenia diagnosis. In my understanding at the time schizophrenia was for middle aged men who thought they were Jesus. Sure, I believed the world was about to end and the nurse with black hair was a demon but that wasn’t delusional – it was true!

I gradually clawed my way back from the excesses of my illness, enrolling in university and ending up in Canberra in 2007 as a newly-minted public service graduate. Public servants don’t have schizophrenia – I was fairly certain of this. And if that was true then why was I seeing a psychiatrist? When I moved to Canberra I resolved to just see a GP as my days of needing care from mental health professionals was surely over? This might have worked had I not become really unwell with psychosis three years later. My poor GP had a limited understanding of mental illness. I convinced her to reduce my anti-psychotic medication which I believed – in my delusional state – was causing my illness! Things got worse and worse and it became quite dangerous. I believed that nobody could help me and I was doomed to a life of being miserable and tormented by the ghost that I saw and heard in my house. There was only one thought beyond that but thankfully I didn’t reach that place in my reasoning. If I had I doubt I would be here now. 

Thankfully my mum came to stay and got me admitted to hospital. I was in a right sate. And for those who don’t know, psychosis does not mean violent or psychopathic as it is often described in movies and TV. Psychosis is a state where reality slips away from you and things don’t make any sense. There are many kinds of psychotic experience but basically it is like living in a nightmare. Some people are in a psychotic state permanently. I can only begin to imagine ow awful that is. For me I can be acutely psychotic and need hospital, or I can be symptom free (rarely) or I can be largely OK but with some symptoms like voices, paranoia or disordered thinking.  I wouldn’t wish it on my worst enemy. It is terrifying and confusing.

Anyway back to the narrative… When I got to hospital the doctor told me I had schizophrenia. I had been told this – and not believed it – dozens of times before but this time the message sank in. It had only taken me, er 15 years to accept this diagnosis – twice as long as it took me to accept I am autistic! Why did it take me so long to arrive at the conclusion that I do in fact have schizophrenia? I had been taking medication for it since 1995 and doctors don’t just give out those kinds of medications for no reason. I think the main reason I couldn’t accept my ‘other’ diagnosis was all the stigma and assumptions around it. How many positive characters do you see in movies and TV that have schizophrenia? The only one that springs to mind is John Nash in A Beautiful Mind (and as an aside, nurses tend to compare me to him whenever I am in hospital!). Most characters who have schizophrenia are either violent, pitiful or destitute. Schizophrenia is rarely presented as anything other than something which will end your chance at a fulfilled life. When I look at this I look at myself and others I know who are doing well and think ‘but that is wrong.’

The assumptions around schizophrenia are in my experience as bad or worse than those around autism a lot of the time. I think a similar process is at work to drive both sets of assumptions. I remember going to my former chemist to pick up my meds and had them ask me how my mum was doing. Perplexed (as my mum lives five hours’ drive away and doesn’t know my chemist) I asked what they meant. They had assumed I was picking up my mum’s meds as I used to wear my work lanyard when I picked up my meds on my way home from work! Shortly afterwards the pharmacist said that ‘people who take your meds don’t usually work in the public service.’ I think she meant it as a compliment. It really wasn’t a compliment though!

Over the past few years I have done some work around accepting my ‘other’ diagnosis. It is a different kind of attitude than my feelings about my autism. There is not as big a positive schizophrenia community as there is an autism one and anyway I haven’t really tapped into it. I am quite comfortable talking about my schizophrenia and I will often talk about my work to people – paid job and advocacy – so as to help dispel misconceptions and assumptions. I do know that it is possible that one day I won’t be able to work due to my illness and I spend a lot of my life working on maintaining good mental health. I take very heavy duty medication – one of which has possible side effects of death by not one but three ways! (Don’t worry – this medication is frequently tested and monitored). I know I am at a high risk of suicide and that everything I have could one day be taken from me by my illness but I also know that thus far I have lived my life with all tis challenges very well. I have friends and family who love and respect me and I have a very helpful attitude to life. I think I’ll be OK and yes, I am happy to say ‘I have schizophrenia’.

‘Shame on you!’ Autism and assumptions

A couple of years ago I was on an interstate bus. I took a seat right up the back but it was faulty and uncomfortable. So I moved to the other side and the USB charger didn’t work. I can’t be on a bus without music! I always have music and I didn’t have enough battery left to get me anywhere near home. In desperation, I sat next to someone on the very back seat. The charger worked and the person I sat next to was lovely and I didn’t need my music because I talked to her most of the way home! I posted all of this on social media and someone said ‘those aren’t real problems. You are pathetic to complain about things like that!’ I replied that I am autistic and those things were in fact a very big deal!

More recently I posted a photo of myself out in the world wearing my purple pronouns t-shirt. The post attracted over 500 reactions and several comments. One of the comments said ‘shame on you for not wearing a mask!’ I responded that I live in Canberra where there is no directive to wear masks when out of home. We have not had active cases of COVID in a very long time here. I also pointed out that for many autistic people wearing masks is not possible due to sensory and other issues. In fact in most jurisdictions which mandate wearing masks there are exemptions and one of the exemptions is for autistic people. The author of the comment took it down pretty quickly after that but it got me thinking about assumptions and judgement.

Humans judge. Apparently there is research to demonstrate that we make up our opinion of someone within about three seconds. Add to that more blatant biases and we end up with a bunch of assumptions, judgement and stereotypes. 

There is also something I term ‘neurobias’. This is where someone from one neurotype makes judgemental decisions and observations about someone from a different neurotype based on them not understanding that there are differences in communication and expression. This plays out in a large number of ways and particularly when it comes to communication and empathy.

If you imagine an autistic person as a French speaker and a neurotypical person as a German speaker. Both languages make sense and convey meaning well. But if you only speak French then you will struggle to understand the German speaker and vice versa. But neurobias if a little different to that example. Neurobias is like the German speaker not being aware that the French language existing. So when someone speaks French the German speaker assumes they are speaking German but very poorly. They are baffled by the communication and as a result there are judgements and unhelpful assumptions. This is a very frequent occurrence for autistic people.

When it comes to empathy then neurobias becomes very apparent. The neurotypical tends to assume that the autistic is some sort of broken neurotypical rather than being a fully effective autistic communicator. Seeing the autistic through the lens of neurobias the experience of empathy is misinterpreted and so it is assumed autistics lack empathy. Of course some autistic people do lack empathy – in the same way some neurotypicals lack empathy – but generally autistics have an acute sense of empathy and are consciously thoughtful and considerate. But this often goes unnoticed. It works the other way too. Autistics often see neurotypical people as lacking empathy for us and I suspect a similar process is at play.

The best thing to address all these assumptions and judgements is to increase the understanding of autistic experience and to ditch the judgement. While we all have biases, we can unlearn these. Becoming aware of bias is the first step to addressing it. Respect for autistic people will help too as will asking and listening rather than assuming and judging. We need to build the understanding that autistic experience and communication is just as valid as any other communication and is valid as is. We are not broken neurotypical people. We are just different – different is not less.

Autism and crime – a different perspective

I need to preface this piece by saying I have possibly a rather different view on issues around criminal justice than many people do as a result of my own lived experience. Criminal justice issues are always going to be complicated and nuanced and multiply this when looking at autistic people – victims as well as perpetrators. Criminal behaviour is both an individual choice and a social issue. 

I have the perspective as an autistic person who many years ago was victimised and also was a perpetrator of criminal behaviour. I spent around three years in prison from between 1994 and 2000. I will say that my offending was definitely NOT because I am autistic although I was taken advantage of by a criminal man who was a predator and this was my initial introduction to the criminal justice system. Things sort of got worse from there.  Since 2000 I made a lot of changes in my life to be where I am now but it was a very difficult journey.

I met the late and very influential autistic author and advocate Polly Samuel in 2004. My autism diagnosis was then ten years old. It wasn’t long after I met Polly that she told me she thought that I should write my life story. Lots of other people at around that time had advised me to write down my story but I was uncomfortable and didn’t want to. The reason I stopped objecting and wrote my autobiography, called Finding a Different Kind of Normal was this: Polly told me that she spoke at parent groups and there were often parents who would sit right up the back and leave before the socialising and cup of tea at the end of the meeting. Polly told me these were the parents of autistic young people caught up in the criminal justice system and they felt ashamed and excluded and that if I wrote the book it would be for that group of parents and their kids. It took me a few moments to realise that this would include my parents too. I finished writing it in four weeks and editing it in two more. I guess I had something of an incentive!

As Polly demonstrated, criminal justice system involvement is something of a taboo with most people and seems to be even more so in the autism community. I suspect this is probably due to a very big issue which persists today – that of stereotyping and using myths about autism to justify blaming criminal behaviour on autism itself. By this implication, we are all emotionless, cruel monsters who don’t know right from wrong. The  idea of autistic people ‘not knowing right from wrong’ is pervasive in this space and is particularly damaging…and in almost every case is totally false I might add. If not knowing right from wrong was part of autism presumably we would all be in prison! Another harmful myth is around us apparently lacking empathy. This myth has done so much damage across a number of domains and is a pet hate of mine. It seems to have started from some quite flawed research but has since taken hold in wider society. In actual fact autistic people are generally very high in empathy but we tend to experience and express it differently to neurotypical people which, for people looking for things ‘wrong’ with us, presumably provides something of a justification.

In some instances autism has been presented by media outlets as an actual reason for offending behaviour, which is not only incorrect, it is also adding fuel to the fire of people who would hate and revile autistics and it adds considerably to the stigma individual autistics face in the world.

Some people in the community are so horrified by these myths around autism and criminal intent playing out that they deny that any autistic person commits criminal acts. Sadly that is not the case either. Autistic people can and do commit crimes for a range of reasons. Some of these reasons relate to us being exploited, manipulated or taken advantage of by others with genuine criminal intent. There are other similar issues – autistic people being desperate to win the approval of peers or a partner, which was what put my on my own very regrettable path in the late 1990s. In other cases autistic people can be accused and even convicted of crimes which were not committed with any intent but were misinterpreted. The movie I am Khan is an example of this – and is an excellent and very moving film too! Sometimes criminal acts are committed by autistic people who have been mercilessly and continually bullied and victimised and retaliate. Autistic people also commit crimes for the same kinds of reasons that other people do. It is a small minority of autistics who become caught up in the justice system but it does happen, as I am living proof of I suppose!

As you are reading my blog I imagine you might have some idea of the work I do in the Autism community. While these days I have influence and a lot of people respect my work, in the 1990s I was one of those people who was swept under the rug metaphorically. I was pretty much seen as lost and beyond help. I was a person with huge issues around  offending behaviour yet now I am seen as a role model and a community leader. We are responsible for each act we make. I take full responsibility for the acts I committed in the 1990s, as while society contributed to what made me do the wrong thing, I also had an individual choice. I know this because there was a point at which I stopped my aberrant behaviour and this was a clear choice – if quite challenging at the time.

Stereotyping and demonising autistic people is not going to address anything in the justice space or anywhere else for that matter – and it will not reduce offending behaviour. What it will do is generate more prejudice and stigma. It will almost certainly add to any unhelpful stereotypes held by judicial staff, corrections staff and police. This is a huge issue as many employees in the justice system could really benefit from accurate, sensible autism training and knowledge  – and disability training more generally. First responders particularly need better autism knowledge and disability knowledge more broadly as a matter of safety. And way beyond the justice system, these sorts of stigma and myths will contribute to autistic people being demonised and victimised across the board. I say no more myths and no taboos – both are damaging. Let’s just help support people and work to ensure the world is a safer and more inclusive and respectful place for everyone.