I have had a number of doctors over the years say this to me – ‘I’ve never seen that before’ or ‘that is unusual’. I am one of many Neurodivergent people to experience atypical medical issues. For me the main one is psychiatric illness. After 27 years of accessing services I finally have (most of) the psychiatrists and mental health workers  I encounter think I have schizophrenia and am autistic. This was not easy and it has resulted in me being terrified of accessing mental health services from new clinicians – such as when going to hospital – because in the past my diagnoses have been, well kind of fraught! My current psychiatrist, who is very lovely and respectful, knows that I am autistic and have schizophrenia but it took him a while and he now describes my schizophrenia as being ‘very atypical.’ I am currently looking to buy property and I am severely limited in my choice of homes because I don’t want to move away from the catchment of my current mental health treating team in case a new clinician misdiagnosis me and changes my medication. My main worry with this is that I will become psychotic, spend months in hospital and have to use up all my paid leave at work – and then my savings – shortly after taking on a mortgage!

The main problem I find with being atypical is that doctors can dismiss you or give you treatments and interventions which are not helpful and can at times be downright dangerous. An example in my experience is when a psychiatrist diagnosed me with ADHD and put me on the medications for ADHD – amphetamines. Now any person with schizophrenia will probably tell you that amphetamines and psychosis go hand in hand. This is exactly what happened to me. It was in October 2019 and I am still recovering from the massive episode of illness the ADHD meds caused. When talking to psychiatrists – even my current very nice one, I feel powerless and having an atypical presentation fills me with horror that if I see a new psychiatrist they will change my diagnosis and associated treatments and I will get really unwell with psychosis again.

More broadly, Neurodivergent people often have atypical health issues – Mental health and physical health. We often have autoimmune issues. Thyroid problems seem to be extremely common with autistic people, especially women / assigned female at birth people. Doctors often don’t quite know what to do with an atypical presentation of a health issue and this can result in them simply dismissing the person’s concerns. Some people will put up with physical pain or mental anguish simply because accessing healthcare when you are atypical is so difficult.

Some illnesses – including some that are common amongst Neurodivergent folks – are doubted as even existing by doctors. Things like Lyme disease, fibromyalgia and chronic fatigue. Neurodivergent people with these conditions can face immense amounts of invalidation and being dismissed by the medical profession. It is bad enough being atypical but then having an illness that some doctors doubt is ‘real’ can be extremely difficult. 

It is almost as if doctors don’t ever see anyone who is ‘atypical’ which baffles me because there are loads of us. Autistic people in particular seem prone to health care being unhelpful and invalidating. I think part of the problem is that we explain things differently to most people. Our communication is different and neurotypical doctors firstly don’t know much about atypical illnesses but also don’t understand where we are coming from and what we are communicating what is happening for us.

I find it can help to take a neurotypical ally to appointments and also to write down all the symptoms and experiences you are having related to the health issue and show the list to the doctor. I have even been able to do this while I was psychotic (although I am also atypical in the level of insight and self-awareness I have when unwell with psychosis!) The hospital doctor said he found this really helpful.  

In Canberra we have a psychiatrist who is Neurodivergent. He is so popular with Neurodivergent folks that his books are currently closed but he is absolutely wonderful. I think having more neurodivergent doctors is a really good thing as they are more likely to understand the ‘atypical’ and to communicate more effectively with their Neurodivergent patients. I also think all clinicians needs support to understand both atypical conditions but also their Neurodivergent patients and the ways in which we communicate. It is so frustrating trying to be heard by a doctor who simply doesn’t ‘get it.’ A lot of people avoid accessing health care at all because of this. That is not OK at all. 

I want a world where doctors ‘get’ atypical illnesses and presentations, one where seeing a doctor does not make Neurodivergent filks feel dismissed, disempowered and invalidated and leaving their appointments with no answers and inappropriate or non-existent treatment. I want a world where I am not afraid to go to hospital when I am unwell because of the impact it might have on my treatment and diagnosis. 

I am asexual. This means that I do not enjoy or have any interest in sex. There are different identities within the asexual ‘umbrella’. Some asexual people have a little interest in sex and others – like me – find it revolting. 

Apparently there is research to show that asexual people are the least likely of any of the LGBTQIA+ identities to be ‘out’. The stigma around asexuality is significant. Asexual people, or ‘Aces’ are often seen as being sad and pathetic. The film ‘The Forty Year old Virgin’ sums up this perspective. Not having sex is seen as a bit sad and that a person is somehow missing out. 

It took me a long time to accept and embrace my asexuality. For many years I believed I must be a lesbian. I had a sexual encounter with a man when I was 16 which wasn’t entirely consensual. I thought men were icky and women were well, slightly less icky so I figured I must be a lesbian. However as a lesbian I still found sex revolting. I had relationships because I thought that was what you were supposed to do but I didn’t enjoy any of it. 

It took me until I was in my late thirties before I realised I was asexual. Even then it took me a bit longer to embrace the identity.

As an autistic person, being asexual is a bit fraught, The stereotype around sexuality and autism is that we are all asexual and if we are sexual then we are are hreteosexual. This of course is nonsense. Autistic people are often interested in sex and are often gay, lesbian, pansexual, polyamorous or and number of other sexualities. I don’t like fitting a stereotype but I can’t help it! I suppose I am not responsible for the stereotype but it still bothers me. This view is also prevalent in the broader disability community and particularly in the intellectual disability space. 

Another issue around asexuality is people thinking I must be a prude. I am actually a long way from being a prude. In fact I am very sex positive. I think if people are enjoy sex and they are consenting adults then by ask means let them go for it! Sexual activity between consenting adults is just – or so I am told – and they should do it to their hearts’ content! I am far from prudish. 

I am also aromantic (or ‘aro’) – and as an aside, my spell checker diesels think aromantic is a word – we evidently have a way to go! I do not have any interest in having relationship. When I was younger I thought I had to have a relationship. That was what people did so I thought I should do it too but it turns out relationships are not for me. I have not had a relationship since 2003 and that is actually just fine. In fact it is much easier. I am not lonely or sad. I like my own company and it means I can do a load of interesting things which make the world a better place (well, I hope they do!) I do have what I would call aesthetic attraction to people. This is not sexual attraction and I don’t want a relationship with them. It is when I like to look at someone. My aesthetic attraction is to androgynous-looking folks and women police officers (long story…) The lovely thing about not being interested in sex or dating is that I don’t need to be in a relationship in order to be happy and fulfilled. I am absolutely OK for it to be just me at Yennski HQ with my work and my friends. I have no issues around being single. Single is absolutely fine.

One thing that I want to clarify is the difference between asexuality and incels. Incel means involuntarily celibate. This is men who cannot find a partner and are often ideologically anti-women. This is very different to asexuals / Aces. Aces are usually comfortable with not having sexual partners whereas incels are not. I view the attitude of incels as being epitomised by the concept of ‘I need to get a girlfriend’, as if a partner is a possession. I have had incels on my social media in the past and I find their approach to women very problematic. Incels are very different to Aces. 

My own Ace identity properly started a few years ago. I had known I was asexual for some time but hadn’t really identified with it publicly. I thought it was almost a negative thing, a negation. How could I have an identity based on something I didn’t do? Eventually I came around to seeing my Ace identity as part of what made me who I am and as being just as important as my other identities. I became a very out loud and proud Ace.  I now talk about my asexuality quite a lot. I think it is good to share not with the world so that other Ace people can feel proud to be themselves.  

I was diagnosed as autistic in 1994. I was twenty. However. I realised I was different to others from a much earlier age. It has taken me a long time to understand who I am and accept and respect myself. We live in a world where difference is often not understood or respected. This is especially true for the kinds of differences that autistic and other neurodivergent people experience.

I think the moment that stuck in my mind of realising my ‘difference’ from others was when I went to a birthday party for a school friend. She was turning 12 and I was 11. I wore a green check skirt and lemon yellow button up shirt to the party. I was so uncomfortable to be in a room of strangers. I didn’t know how to break into a conversation and the only person I knew was my friend. One of the others asked if I was wearing my school uniform. I was so embarrassed and I longed to be able to be like other people and not be socially anxious and to wear fashion that was similar to what my peers were wearing. That was the first time it hit home that I was not the usual sort of human. I firmly believed I was the only person like me in the world. It was horrible. 

I spent the next twenty or so years desperate to fit in and be like other people. I firmly believed that I was inferior to the rest of the people in the world and that I needed to change in order to be more like them. I think this was largely due to the bullying I experienced throughout school.

Bullies at school relentlessly pursued me. I was hated in every school I attended. I was ‘weird’ and a ‘nerd’. My apparently ambiguous gender was another reason for bullying. The messaging was consistent so I figured the bullies must be correct. This led to post traumatic stress and a strong wish to conform to what young teenagers were apparently supposed to conform to. I kept everything emotional firmly suppressed. I never had a meltdown from the age of about 10. While a meltdown may be viewed as a negative thing, not having one when you need that release valve – such as when you are terrified to go to school every day due to being abused and harassed pretty much constantly…well in that situation an occasional meltdown might in fact be helpful! Suppressing emotions is not generally a good idea and I did it for many years.

Even though I was diagnosed as autistic at the age of 20, I never saw it as a good thing. Quite the opposite in fact – I struggled to accept my autism mostly because I thought it validated what the bullies had told me. I thought autism was a diagnosis of ‘weird’ or ‘nerd’ so I kept as far away from it as possible. I was ashamed to be autistic and thought it was a dreadful thing that somehow needed ‘fixing.’

My feeling was always that my autism, my ‘difference,’ was a negative thing. Even when I accepted the diagnosis it was very tentative and reluctant. I didn’t really WANT to be autistic. I did some research and signed up with an autism employment service but I didn’t want to be in that group and saw the diagnosis as disabling and something to be ashamed of. Rather than being proud as an autistic person I was apologetic to be so ‘weird’. 

It wasn’t until my early thirties that I learned the value of being an out loud and proud autistic person. I met other autistic people, including my mentor, the late, great Polly Samuel. Polly taught me all about autistic identity and pride and I never looked back. I learned that different is not less and now I share that message around the world. Polly would have meetings at her house where autistic people would visit. Sometimes we watched movies and sometimes we talked abut writing and books. Polly was – at that time – a nine times published author. She was also an accomplished artist and we would talk about all things autism and identity, stim to our hearts’ content and paint together. I became Polly’s protege. She encouraged me to write my life story which initially I wasn’t keen to do but in the end Polly convinced me. I wrote the book with Polly’s support. When it was drafted and edited (a process which took a total of six weeks) we sent it to Polly’s publisher. They took three weeks to decide to publish it and my advocacy career – and the life I have now – was born.  The book thrust me into the autism advocacy world. Suddenly I was someone people came to for advice on autism. It was amazing – and utterly terrifying! Over the years I have learned a lot more about autism and neurodiversity more broadly. 

And yes, I do experience the world a bit differently to others. My social communication is very direct. I tell it like it is and that is OK. I love to stim and often find myself clapping my hands or flapping when I am either anxious or excited. I have immense focus and can work for long periods without a break – or even realising that a break is a possibility. I am a huge fan of words and writing. I have prodigious skills in art, public speaking, writing and strangely enough, cooking! I am thoughtful and kind and I have respect for people from diverse backgrounds. I have that amazing – and quite difficult – autistic quality of hyper-empathy. I have some sensory challenges such as toilet smells, some foods and bright lights. I also have some sensory joys – glitter, foil and shiny things generally. I have a very idiosyncratic – and extremely cool, even if I say so myself – sense of style. Like many autistic people I am gender divergent – in my case non-binary / agender and like many autistic people I have a divergent sexuality too. As an autistic person I am strongly connected to animals and nature and I am also very logical. 

I would not get rid of my autism even if I could. It is what makes me different and what makes me wonderful. It has taken me many years to get to such a strong place of respect for my difference and embracing my autism. It is true that for some of us being ‘different’ can be traumatic. Sadly a lot of autistic people are bullied and abused by people who do not respect or understand difference. This is not ever OK. Difference and diversity are beautiful and should be encouraged and supported. 

Yes, I firmly endorse the statement ‘different not less’.

I am ashamed to say that I used to really struggle with jealousy, worrying what other people thought of me and thinking I was never going to be as good as others in the autistic community. I found the success of others quite intimidating. It wasn’t that I didn’t like other, more ‘successful’ advocates or that I wanted to be somehow better than them. It was more about doubting my own value. Thankfully I have moved on from there and genuinely want others to succeed and create an audience for themselves but it was a long journey. What finally put those unpleasant thoughts to rest was actually my coming out as non-binary gender. I finally got to be the person I had always been deep down. I was my own true identity. The jealousy and self doubt just seemed to evaporate when I came out. It was wonderful.

These days I recognise that I myself am highly accomplished. I know that many people actually find me intimidating! Who knew? While I am thankfully free form jealousy I do have a pretty impressive case of imposter syndrome. I always think that I know nothing about anything before realising that I have ten published books which people tell me are quite helpful. Presumably I know something to have written a bunch of books but it still seems unlikely. It is just one of those things where I have to take others’ word for it I guess. 

A lot of these issues are bound up with intersectional disadvantage. One thing which can be a big issue for people from intersectional groups is lateral violence. How I understand lateral violence is this: Someone is oppressed by society. They may for example by Autistic. Autistic and neurodivergent people face discrimination in society. The more logical thing to do if you face disadvantage would seem to be to fight the power – address the structural barriers in society, that kind of thing. However with lateral violence, instead of fighting the power, the person fights other disadvantaged people. This happens in pretty much every intersectional group and is really not OK and not helpful. Attacking each other will not remove or address discrimination and barriers, it just upsets people.

I have been on the receiving end of lateral violence a few times and it is very hurtful. It can be tied up with jealously and feelings of being inadequate but it is not OK. It is also very hurtful when directed at me. It is understandable though. Being discriminated against and disadvantaged makes people powerless. Powerless people often want to reclaim personal power in any way they can, even if that means being horrible to people in a similar situation to themselves. When I felt jealous of others I knew it was wrong and unhelpful so I tried as hard as I could not to let it show and to support other advocates Not everyone approaches it like that though. I am lucky too have been blessed with a large amount of insight and self-awareness. Within the context of jealousy and lateral violence this meant I could (mostly) suppress the problem thinking but many people lack self awareness so just act really mean without understanding that it isn’t OK. 

I know that we achieve much more united than divided.  Also the cause of the powerlessness and disadvantage we face does not come from other people facing similar disadvantage. This means it is completely ineffectual to attack our fellows. We are much better off fighting the power so to speak and addressing injustice and discrimination than turning our anger inwards to our own community.

Also, speaking as a person who is now a bit of a ‘tall poppy’, I really struggle with a range of things. I have a major mental illness which makes living almost impossible a lot of the time. I have a history of violence, abuse and trauma and I often struggle to think of anything positive about me. Yes I wrote a bunch of books and gave a TED talk but I am fairly certain very few people would actually like to have my life. In the past had I met a person with all my current accomplishments  I would have been very jealous but I now know that for many people with accomplishments there is also trauma and sadness. Those people need support and encouragement, not hostility and jealousy. 

I think lateral violence is not at all helpful. I do understand it from both ‘ends’ but I firmly believe we are better off fighting the barriers and discrimination we all face together rather than attacking one another. 

Upbringing

I was brought up in the Christadelphian church – or ‘ecclesia’ as they call it (an ancient Greek word for, um, church!). Christadelphians have some fairly specific views on the world. They like prophecy, don’t vote or join the army and believe that Jesus is going to come back to Earth and set up a benevolent world government in Israel. Prophecy is a big deal for Christadelphians. We were always reading the book of Revelation and Daniel and firmly believing that the world was about to end. It was at once scary and exhilarating! We apparently had ‘the Truth’ (note the upper case T – no room for postmodernism in the Christadelphian universe!)

Trying to be an atheist

When I was about eleven years old I came to a realisation. To be a good christadelphian woman I figured I would need to get married to a man, have a bunch of kids and have no opinions. I really didn’t want that to be my path in life. I had recently heard about lesbians and figured that was more the path I wanted to take. For the first time in my life I had doubts – not about the existence of God but about my role in life. A few years later I had a passionate interest in politics and particularly communism. At the same time there was a split in our Christadelphian ‘meeting.’ I had always known I was correct in my faith and the elders if the ecclesia had the correct interpretation of the Bible. But now they were arguing. I don’t deal well with conflict and I was totally thrown by the split in our meeting. I could no longer trust anyone in the church so I left and joined the socialists. 

Socialists were atheists (mostly) so I needed to be an atheist too. I actually struggled with this. I had always been friends with God. I would pray every night and saw God as a very influential friend but I managed to convince myself that I was an atheist for some years.  

Trying to be a christian

Life went on and I found myself no longer being a socialist. By 2007 I was Masters graduate and published author. I had experienced things which suggested that there was a supreme being who wanted me to succeed in life and who cared for me. I moved to Canberra to take up a new – and very well-paid – job . I asked my mum if she knew of any non-judgemental churches in Canberra and she put me in touch with a home church group. I was going to try to be a Christian. Sadly I was a very deficient Christian. I missed all the meaning and metaphor that my fellow Christians could see in the Bible. I didn’t think it was possible to have any kind of absolute ‘truth’ and I thought missionary work was just another word for imperialism and disrespecting the cultures and beliefs of people in other countries. I tried as hard as I could to be a Christian but I was mournfully dreadful at it so gave up!   

What psychosis gives me in terms of religion

My Christadelphian upbringing has left me with one very difficult thing. I have schizophrenia and a lot of my delusional beliefs when I am unwell relate to religion. I become terrified that God is punishing me, that I have sold my soul to the Devil, that I have died and am in purgatory or that spirits of the dead are haunting me. These are firm beliefs when I am unwell and they are terrifying. In fact none of those beliefs are things that Christadelphian beliefs but it all sort of ties in.

Religion and the world

I just want to unpack some thoughts I have heard about religion:

• Does religion cause war? Yes but no. I think religion is often used as an excuse for war but it is not the cause in and of itself. I think causes for war tend to be a bit more complex than ‘they are Christian and we are Muslim’ (or whatever).
• Are all Christians bigots? No. I haven’t said much about gender diversity, sexuality and religion here and it is an important topic. A lot of bigots are Christians but it is not the case that  Christianity necessarily causes bigotry. My parents are very devout Christians but they are not at all transphobic or homophobic. While in Australia at least, many bigots are Christians it does not translate that all Christians are bigots.
• Why are so many terrorists religious? As with the war point, terrorists are often religious but there are probably deeper reasons to terrorism than religion alone. For example in Northern Ireland the terrorism and the ‘troubles’ seemed very closely related to religion and there was certainly a strong element of religion driving the violence but there was also a lot of history of colonialism and the UK being an occupying force.  There is a lot of terrorism happening right now which has no religious element but we simply don’t see it in our news. Religion causes war or religion causes terrorism are simplistic views to my mind. 
• How do people with faith know they are are right? This one always gets me. My mum – who I should say is one of the most kind and loving and respectful people in the world – has a very strong and specific faith. I cannot do this. I always have doubts. I can’t say ‘my beliefs are right’ because I honestly don’t know that they are. This is something about religion which confuses me. However this kind of faith can be comforting to people that have it.

What I think and why it is probably wrong

I do have a faith, just a fairly sketchy one. If my life is challenging, such as when I am unwell with psychosis or depression, I pray and turn to the Devine to deliver me. And those prayers are actually often responded so and the issues resolved. I don’t have a specific faith. I can’t tell if Islam, Christianity, Judaism, Buddhism or anything else is  correct. I have a long history of trying unsuccessfully to be a person of a specific faith. Simply It doesn’t work for me. But I do have faith and belief. I tend to think we go somewhere when we die and they there is a benevolent force in the world – and probably malevolent one too. I do think my path in life has been supported but I can’t pinpoint what or who did that. I tend to think that we are trying to find answers and we cannot have a ‘Truth’.  And I know my views are almost certainly ‘wrong’ but that is OK as they work for me.

I have research on the brain at the moment! Mostly because I attended the Autism Cooperative Research Centre (‘Autism CRC’) participant day yesterday. It was one of a very small number of autism events I have attended in person since the outbreak of COVID in 2020. Of course my favourite thing was catching up with fellow advocates and friends I haven’t seen in over three years but it was also about the research! 

The CRC has been going for a number of years and I have had involvement  with them quite a bit over the years. Yesterday I earned a reprieve from presenting so watched everyone else’s presentations without the distraction of needing prepare one of my own. It was lovely. One thing about the day was the very strong involvement of autistic people. Each panel had autistic voices and some of the events had exclusively autistic presenters. You would think that this is how such events are always done but sadly that is not the case.

Research is important. If you want to initiate a service, write a policy affecting people or simply understand the experience of a particular demographic group then you will need research evidence and data. There are different ways of collecting data, some of which are inclusive and respectful and other which, well, aren’t! I am an author and I use a lot of research evidence in my books. Research enables us to realise what needs to be done and to evaluate whether interventions and supports are actually helping. 

Involvement in research happens at a range of levels. One of these is researchers themselves – the people conducting the study and collecting the evidence. Another way of being involved in research is as a participant providing the evidence and data based in your experience. And another way of being involved in research is as a sponsor – providing funding and auspicing the study. There are a great many roles in the business of research and traditionally the people who from the demographic being studied, and especially those from disadvantaged / intersectional groups – e.g. Autistic people – are excluded from most or even all of those roles. 

I often say that not including autistic people in things which impact on us is a bit like holding an engineering conference. The organisers invite an architect, a builder, someone who lives in a house, a mortgage broker, a bricklayer and a concreter but no engineers! Excluding the key player in anything – autism or engineering – is not very helpful. It actually means that the quality and helpfulness of the research is very much limited. I often think many researchers do not realise that the outcome of their research should primarily be one of supporting autistic people. Not including autistic voices in all levels of research is just nonsensical. It comes from some legacy-type attitudes around autism, ableist views that assume incompetence and think that the only important people in the autism ‘picture’ is neurotypical parents or clinicians rather than autistic people ourselves.

In recent years this has started to change but there are still organisations and individual researchers who do not demonstrate their inclusivity and do not wish to involve autistic people at any level of the research process.  The findings of autism research which does not include autistic people are not likely to be very helpful for autistic people. 

Sometimes researchers will recruit autistic people as participants in their study. This is a good first step but we also need autistic researchers and project leaders to ensure autistic voices are included. This should not be a tokenistic approach but genuine inclusion. We are going to get far more useful data and understanding where research is based in inclusivity and conducted by autistic researchers with autistic participants. This is a critical area and inclusion of autistic voices  is absolutely essential if we want our research findings to be helpful and also if we want to be respectful and inclusive of autistic people and create policies, services and information which actually helps us to navigate life better.  

A while back I came up with an analogy for autism which I thought resonated well. The theory rested on the idea of autism being comparable to a cultural difference. It was like autistic people were from one culture and neurotypical folks were from another. I liked this idea and I use it a lot but I’m not sure if I have blogged about ti before, hence this post.

The idea has a few elements to it. The first is the concept of language. If you imagine that autistic people speak French and neurotypical people speak Spanish. The issue is not even that there are two seperate ‘languages’ –  although this is a challenge to communication in itself. The main problem that I see is that a lot of neurotypical people don’t realise that autistic people are speaking ‘French’. Instead they believe that autistic folks are speaking Spanish but very badly! Of course there is no problem with the autistic ‘French’. French is an equally valid language to Spanish but if people don’t realise you are speaking a different language it make communication very challenging! It also leads to assumptions around the competence of the person speaking the different language. We need to ensure that the neurotypical ‘Spanish’ speakers not only realise that autistic ‘French’ is a language but also to understand it is an equally valid language. It is awesome when neurotypical ‘Spanish’ speakers learn autistic ‘French’. I think I spend a lot of my time teaching people ‘French’!

The other concept around the autistic culture approach is  the concept of the Autistic expatriate. This involves autistic people feeling like we are in a different country to our native home. We have moved to a country which is strange to us. The neurotypical nation is not our home. We have learned the language and the customs but we are very much an expatriate, a foreigner. If someone from our autistic homeland comes to visit us it is a lovely thing. We speak the same language and know the customs of our homeland. This notion of being with our compatriots s something which is known as autistic space. When everyone in a place is autistic there tend to be no issues with social skills and communication. I often go to autism conferences and find that all the people in the quiet room are autistic and we get talking and it is amazing. I have been at events where everyone is autistic and it is really is like coming home to my own native land. Autistic space is my favourite thing ever! For neurotypical folks being aware that we are expatriates is a useful thing to be aware of. We may feel very uncomfortable in your ‘country’ and feel like we are not amongst our own people. 

These concepts around autistic culture make me happy. They are a way of understanding differences and the experience of autistic people. They form part of the idea of Neurodiversity – that our brains are wired differently and that is OK. The concept of ‘different not less’ also relates. Cultures are all different but all valid. Nobody’s culture is ‘wrong’ and this includes autistic culture. I’m not sure what others think but I find this approach very helpful, especially when I am talking to people who don’t have much knowledge around autism. 

I currently take eleven different medications – many of them for my mental health. I have been taking medication for my mental health since 1995 when I was first diagnosed with schizophrenia. I want to share some of my thoughts and experience around medication.

Medication is not a choice for me. If I stop taking my medication I get very unwell indeed – I know this because it has happened and I do not ever want to repeat the experience! My medication is for mood (lithium), anxiety (sertraline) and psychosis (clozapine and risperidone). One of my medications is a sort of last line of defence schizophrenia thing. Clozapine is only prescribed – and by law can only be prescribed – for treatment resistant schizophrenia. That basically means that I have tried a large number of other anti-psychotic medications and they have been ineffective. Clozapine is potentially dangerous and can affect the heart and the white blood cell count. When it first came out people would die from it but now monitoring means it is a lot safer. I have to have a regular blood test and an appointment with a clozapine nurse at the local mental health service. I actually like clozapine. It was offered  to me dozens of times before I accepted that I needed it. I thought it would turn me into a drugged out zombie and it actually does make me sleep a lot but no more than other similar medications I have had. It makes a big difference to my experience of psychosis and psychotic symptoms. Many anti-psychotic medications cause weight gain which has been an issue for me. It means I have to be extremely careful around food and watch my weight all the time. I got up to 130kg but I am down to 91kg now after a very determined effort to manage my weight. I hate when people assume that those on anti-psychotic medication are lazy or have let themselves go. The side effects of these meds are often significant and can be debilitating.

Like many with a schizophrenia diagnosis I have struggled with taking the medication. If I am well I feel like I don’t need it. I also struggle with denial of my condition so I question the need to take the meds even now. One of my nurses once told me that schizophrenia meds are like insulin for people with diabetes. If they take the insulin then effectively they are ‘cured’ but if they stop taking it they will get unwell. I like that analogy but I do still struggle with denial and question the need for the meds. Mostly I take them because if I didn’t I would be put on a court order to take the meds. I have actually been on one of those beforehand it was humiliating. I know it seems silly for an intelligent person to think this way but I do. I think it may be a part of the illness.

Sometimes people ask me what medication I take, almost like asking for advice and recommendation. One thing I know about psychiatric medications is that they impact on individuals differently. If I recommended that people take what I do it would be irresponsible and unhelpful. What works for me may or may not work for others. Psychiatric meds are something of a ‘suck it and see’ thing. You will often need to try a few different ones before you get one that works and if you are like me and your condition is treatment resistant then you may never find one – or a combination of drugs – that work 100% effectively. My medications take the edge off my mood issues, anxiety and psychosis but they definitely don’t ‘fix’ my mental health issues. 

One thing that I come across is people saying children shouldn’t be medicated. I understand this concern but for some autistic kids and other neurodivergent kids medication makes a huge and positive difference. I have one friend who is a parent and their daughter was put on medication for ADHD and the difference it made was immense. The kid’s anxiety decreased noticeably and the medication made a massive positive difference. A competent clinician will ensure children aren’t given damaging medication as well. I don’t think clinicians take the decision to medicate children lightly and even if the medication doesn’t help or causes issues then they can stop taking it.

It is important to note that medication can have harmful effects. I actually had a very dangerous medication issue myself. In 2019 my psychiatrist at the time diagnosed me with ADHD and prescribed Dex amphetamines. As a person with schizophrenia I was aware I probably shouldn’t take these meds as I knew they can cause psychosis in people with schizophrenia. However my doctor told me I should be fine. I wasn’t. Within a week of taking the medication I was acutely psychotic. I spent the next two years in and out of hospital and am still struggling with that episode of illness. I was quite angry with the psychiatrist for putting me in danger and doing something which resulted in so much suffering for me. I guess it illustrates that these medications have big risks associated with them. 

For some people psychiatric medications can change their lives dramatically and enable them to live well. That being said they are not always effective. The decision to take psychiatric medications should not be taken lightly. I hope – if you take them – that your meds work well for you and if they don’t that you find something which does. I  do know I need the medication in order to live the life I do. Without my medications I would be extremely depressed and psychotic so it is not an option not to take them. I would love a world where I didn’t need to take meds!

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.  

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!