‘We’re all in it together’ – Reflections on COVID from quarantine

Content warning: reference to mental illness, family violence

I am writing this post from my room at a mental health residential service where I am in quarantine. I have done well to avoid the worst vagaries of COVID restrictions. Canberra had one long lockdown shortly after COVID started and has had just one other which we have been in sine August this year. On both occasions I was in hospital or residential care so did not really feel isolated or lonely, just somewhat restricted. I have only had to have one COVID test and have not – up until very recently – been in contact with anyone who has COVID. Quarantine in a house full of people – fellow residents and mental health workers – is much nicer than being in quarantine alone! But being in quarantine makes COVID very raw and real. As I have been in close contact there is a chance I may develop COVID. I am fairly certain I won’t but it is definitely possible. Since COVID hit my constant refrain in relation to the pandemic is that it is not my friend and that I hate it. This really is true. COVID is terrifying and destructive and has changed the world in some very negative ways. Despite all that talk of ‘we are all in it together’ it has actually led to a lot of isolation, fear and stress for everyone.

It is common to see people talking about the mental health impacts of COVID. These are very real. There is a range of factors which mean COVID has an effect on people’s mental health, including people who have never had a mental illness before. I almost feel like I am at an advantage having had schizophrenia since 1995 as I know what to expect when my brain behaves in an unpleasant way. Mental health issues related to COVID are probably likely to continue throughout someone’s life. The cost is horrific. 

One thing which breaks my heart is when people are in lockdown with people who do not respect or like them. I knew of a transgender person who was in lockdown with their parents and their parents were hostile and transphobic. It is hard to imagine  how awful that would be. People in situations fo domestic and family violence are also a lot more at risk in lockdown as not only is it impossible for them to leave, being in lockdown together causes additional stress and may exacerbate the difficulties in relationships and the predatory behaviour of an abusive partner.

We are all supposed to wear masks when in public. There are a few issues around masks. The first is that not everyone can wear one. For many autistic people a mask is sensory hell and it is not possible for them to wear them. But people can be extremely judgemental about masks. If you see someone without a mask, before you pass judgement remind yourself that they may be one of a large group of people who are unable to wear a mask. The judgment around masks is similar to the judgement around accessible parking spots. People think they are supporting Disabled people by getting cranky at someone for using an accessible spot who can walk but actually many people have a disability parking sticker who can walk. They don’t only give out parking stickers to wheelchair users. People go off half cocked and berate others who are in fact Disabled themselves and have the legal right to use that parking spot. I see this as a similar issue to the self-appointed mask police.

COVID comes with a lot of associated conspiracy theories. I got my second vaccination the other day and staff at the house joked that I would get great 5G! I find conspiracy theories baffling. Aside from being baffling a lot of them are dangerous. We need everyone to get a vaccination because this creates herd immunity and means the virus will be considerably less of an issue. If everyone was vaccinated there would almost certainly be no more need for lockdowns and we could get back to  the kind of life where we did not need to use statements like ‘we are all in this together.’ I am an outspoken proponent of vaccination. Please if you are not already vaccinated go out and get the jab. When I posted about getting my vaccination people on my social media said ‘thank you’ which I thought was nice. I guess that is something where ‘we are all in this together’ comes into play.

I wonder about the future. What will things look like next year or in ten years’ time. Are we doomed to work from home and communicate via Zoom for the rest of eternity? What will happen to the people who have survived COVID? Will they have lasting effects from the virus? Will business recover or will be fall into economic depression? What will the mental health landscape look like? Will I be able to access mental health support into the future or will services be so overloaded that I will have to make do myself, psychosis notwithstanding? Will my medications continue to be available? Will everyone in the world contract COVID? I have lots of questions and very few answers.

I am aware this is quite a bleak post so I will end with some hope. I was asked to contribute a poem to a book called Infectious Hope edited by Silvia Canton Rondoni. Writing the poem got me thinking about the idea of hope and how I see hope in the situation we are in. I won’t share the poem here because that would be somewhat unethical given the book isn’t published but I will say that it was a good lens through which to approach COVID. Look after yourself as much as you can in this broken world and remember that everything changes and all things come to an end. We actually are all in this together. The truth of that statement depends on how we navigate the world and how much we care for one another ad see ourselves as responsible for making the world a better place.

The importance of saying no – avoiding overload and burnout 

Like many other people I struggle with saying no. There are a number of reasons for this. One of them is my career. I started my advocacy and writing career in 2005, when my first book was accepted for publication. At that time requests for my services were quite rare. I did the occasional conference or chapter in a book but not much more. In 2012 I had an experience which catapulted me into the autism advocacy world. Advocacy became my driving passion, my very own interest. For the first time I was striving to do as much writing and public speaking as I could. I figured I had a lot to say and I wanted to say it to as many people as I could. I said yes to every single request for my services. I also had individuals contacting me with requests for advice. Almost every day involved the need to respond to someone and I pretty much always said yes. It never occurred to me to say no because why would I decline something I really wanted to do and which made a difference?

Of course I ended up getting burned out. Several times. I rarely took downtime and I felt extremely pressured. My friend and coauthor Dr Emma Goodall gave me a buzzer which says no in several different ways. While this was partially humorous it also served an important purpose – to remind me that it is OK to say no. I keep it on my desk at home and when I am asked to do something which I would prefer not to I press it! 

Saying no is really difficult for me for a few reasons. The first is that I actually would like to do everything I am asked to do. I enjoy writing and speaking and giving advice. These things are not onerous to me but if I do too much then I am in trouble. I have to remind myself of times in the past when I have been burned out. Another issue with ‘no’ is the I don’t want to disappoint anyone. If an organisation wants me to speak at their event I don’t want to decline it because I figure they will be disappointed. And another reason I struggle to say no is that I have been trying to build my profile for years. On reflection I now have quite a big profile so don’t reply need to build it any more but my mind is stuck with the idea that my profile could be bigger and that the best way to build my profile is to say yes to a bunch of requests for speaking or writing.

I now ensure I take at least two hours downtime each day. I am still terrible at saying no to speaking gigs. My talks spreadsheet for 2021 already has 37 events on it. This is more than one per week! I need to work on this. One thing I have done is make a list of speakers who I can recommend to organisations if I decline a request to speak. This means that I don’t have to do tithe talk and the organisation will not be disappointed by the lack of Yennski because they will ave a speaker recommended by Yennski who is equally awesome! Managing burnout ad being able to say no is an ongoing issue for me. I have to tell myself that it is OK to decline an event or request. I am improving but it is something which requires my close attention.   

Burnout

Burnout happens when we take on too much – or have too many demands for our time and energy. It can be caused by a range of triggers and is very challenging. Burnout can accumulate over time and we can struggle to see it happening. Often others who are close to us will see burnout coming long before we do. For this reason it is helpful to listen to others if they express concern about our workload. It is possible to head off burnout by simply stopping doing the things which are contributing to it. If you actually do get to the place of being burned out the key is to stop. I recently experienced burnout and I took a month off, not doing any talks or writing for a month. It worked well.

Assertiveness 

Saying no to someone is a form of assertiveness. Assertiveness can be tricky and can take a lot of practice. A lot of neurodivergent people struggle with assertiveness. If you have been bullied or invalidated in some other way it can be very difficult to be assertive. Assertiveness is a really useful skill and it is possible to improve our capability to be assertive through practicing declining requests. It is best to start by being assertive with someone we are comfortable with and feel safe with. Being assertive is a great way of addressing burnout and saying no. 

Importance of downtime 

Downtime is absolutely essential. Nobody – not even me – can work all the time. We need downtime from work tasks but also from emotional and social input. Being around people all the time can be overwhelming for autistic folks and things like emotional labour can contribute to burnout to a similar or greater degree than not being able to say no to request for work-type activities. It is important to protect ourselves from burnout and overload and recovering form burnout can be a difficult and unpleasant process. This can involve limiting social contact or emotional labour. Some people are more draining than others. If we are aware of this it means we can limit time with those people and decline contact with them and this will enable us to be in a better space and avoid burnout. 

Thoughts on power 

I have been in some institutional settings lately so felt the need to talk about power and in particular being disempowered. As a person with schizoaffective disorder (if you don’t know what that is, think schizophrenia with an additional mood disorder element), I spend quite a lot of my time in hospital and residential mental health services. I am even in a residential service now. In the fairly distant past I sent considerable time in prison as well. The common factor for these settings is that they are premised on a power relationship. Often, in hospital and mental health live-in services this power differential doesn’t manifest in a hostile way but it is definitely still there. If you don’t think there’s a power relationship in the psychiatric ward, tell the doctor that you don’t want to take the medication and see how far that gets you! Some power relationships I have experienced have been very destructive and unhelpful. Being in prison basically means you have no power at all. I tried to challenge the system in that setting but that meant was that my time in jail was extremely difficult and the power dynamic considerably more evident.

The experience of being disempowered is tied in with the concept of intersectionality, The Merriam-Webster dictionary defines intersectionality as “the complex, cumulative manner in which the effects of different forms of discrimination combine, overlap, or intersect”. It essentially means that discrimination doesn’t exist in a bubble – different kinds of prejudice can be amplified in different ways when combined. The word was coined by civil rights activist Kimberle Crenshaw and it is a very helpful way of viewing disadvantage. Intersectionality is closely related to disempowerment, with people belonging to equity groups very often being disempowered. Intersectionality relates to race, gender, socio-economic status, disability, sexuality, age, and many other elements. If you belong to one or more groups chances are you have experienced disempowerment.

Being disempowered can result in a number of issues. People who are extremely disempowered can respond to this in maladaptive ways. I remember attending an art class run by Somebody’s Daughter Theatre Company who work with women prisoners and young people at risk. I stayed in touch with the group long after I stopped being a prisoner and this instance occurred when I was a public servant. There was a woman in the group who was extremely hostile to me and threatened violence. I remember reflecting that the reason for that response probably related to the person being extremely disempowered and wanting to regain some power. 

Power differentials often result in institutional or structural discrimination and even violence to disempowered people. Think homelessness and how homeless people are treated, the high rates of incarceration of people from disadvantaged groups, especially Indigenous peoples, high rates of unemployment amongst certain groups, homosexuality being illegal in certain countries – and even in some Australian states until relatively recently, discrimination against trans and gender divergent folks and ‘disability business services’ (formerly called sheltered workshops) where Disabled people are paid a pittance for their work. Being disempowered is hard to overcome and the odds are often stacked against people. In fact I tend to think that being disempowered often results in further disempowerment. If you look at my experience, I was highly disempowered in 1996 as a patient in hospital. I was disempowered and mistreated by the chief psychiatrist in hospital and ended up going to jail. I was there for a further three years and was the most desperate, self-destructive, powerless person you could ever imagine. The fact that I escaped that world was definitely more by luck than judgement. Most people in the position I was would be still there or be dead. I now have a lot of personal power but I’m still not 100% sure how I managed to make such a radical change. 

Personal power is related to a person’s power position in society but it is a different sort of thing. People who are in a position of privilege in intersectionality terms (think cis men, heterosexuals, white people, wealthy people etc) often have a greater degree of personal power and self-confidence than those who are disempowered. Personal power can change over someone’s lifetime. Personal power relates to self-confidence and our ability to advocate for ourselves and stand up to people who are trying to disempower us. The I was younger I had very little structural power and very little personal power. Now my structural power is still a bit iffy due to my mental illness and related factors but my personal power is extremely strong. I can stand up to bullies – in fact I make a point of standing up to bullies. Why? Well bullying is all about power and if you try to appease a bully I find they just keep on bullying as they see you as having less power than them. Whereas if you can stand up to them in their mind you are higher up the power pyramid than them so they are a lot more likely to stop giving you a hard time. I was bullied all through school so I really wish I had known that nifty little fact then. Sadly I didn’t and I went through a lot of trauma. 

Power underpins our society. Often power is a vehicle for oppression and perpetuates discrimination. Many of us are disempowered and struggle to overcome the power dynamics we face. Understanding power helps us to understand the world and can help us to address some of the issues but it is a significant element of life and being on the wrong end of a power dynamic can make life very difficult. 

“Failing successfully”

I wrote two books on resilience for parents of autistic kids with my wonderful coauthor Dr Emma Goodall in 2017 and 2018. When we pitched the books to my publisher we gave some chapter examples including one on ‘failing successfully.’ The publisher loved this idea and we got a contract. Failing successfully is a concept I have been talking about for a while mostly because – similarly to many other autistic people – I really struggle with mistakes, setbacks and failure. 

Less than a week ago I made a mistake. This is what prompted this post as I wanted to connect with others who also struggle with worry around mistakes and failure. My mistake revolved around not adequately de-identifying some people that I said I had issues with. A friend of one of the people contacted me and explained that the examples were not adequately de-identified as she could make out who one of them was. Apparently the person themselves could work out who they were. It was an absolute disaster! Of course I took down the post and rewrote it minus the examples and hopefully nothing untoward happened after that but I was absolutely horrified. I felt guilty for being part of the problem rather than part of the solution – even though it was unintentional. I imagined how I would feel if someone posted negative comments about me and I worried that it would escalate and I would have legal issues. As a perfectionist, making a mistake is always difficult. However when I unpacked it, this incident actually had some elements of it which were quite useful. The main one being that I learned from it. If I am describing anyone in writing in unfavourable terms I will be very careful not to add any identifying features. In fact I will check everything I write that references others very carefully to ensure that I am not inadvertently criticising anyone or being disrespectful. These are good learnings and an example of what I see as successful failure. Something unpleasant had happened which was my fault but I immediately worked to rectify the issue and I have learned some useful lessons from it which will improve my work in the future and avoid the same issue happening again. So while it was very stressful and I felt extremely guilty, it can also be seen as a success. 

As autistic people we often struggle with perfectionism and fear of failure. The anxiety related to this can mean we don’t do things which we would actually enjoy or do well. Perfectionism can stop us in our tracks. I knew somebody at university who wrote an amazing essay but didn’t hand it in until it was vastly overdue because it wasn’t perfect. Had she handed it in on time I imagine she would have gained a high distinction but she had to keep working on it to make it perfect. By the time she submitted  it, it was so overdue that she barely scraped a pass despite it being a stunning piece of writing. I have similar reflections from my own life but in relation to employment. In 2001 I got a dishwashing job and was so anxious about potentially making a mistake that the anxiety triggered a psychotic episode. I was unable to work again for years and had to instigate a series of controlled challenges around employment in order to work at all. 

The worry about making a mistake can absolutely defeat us. The successful failing model is not about saying it is OK to make mistakes with consequences or that it doesn’t matter if you make a mistake. Often it DOES matter. However the successful failing model is all about using experiences of failure and setbacks to build an understanding which will help you to avoid the same issue in the future. It is also about building your confidence and resilience. It can be soul-destroying to make an error if you dwell on it and just feel guilty. Seeing errors differently and as a learning experience and seeing setbacks as an inevitable part of life at times is a far better approach.

The key is to reflect that everyone makes mistakes, that mistakes can foster learning and understanding and that you can use the learnings from a mistake to improve how you approach things in the future. Autistic people in particular tend to need this skill as we often struggle a lot with perfectionism and anxiety around errors. It is possible to instil this understanding with autistic kids as well. I wish I had the knowledge of successful failing as a kid and a young adult. 

My ex-friends – learning it is OK not to be 100% popular – revised version

Preface: I published this yesterday and included examples of toxic friendships. I thought they were nicely de-identified but apparently not as someone identified one of them from my description. I immediately took the post down based on this experience. I apologise to anyone I may have upset or offended with the original version. Even if people treated me badly in the past it is not OK for me to treat others badly myself. Thank you to the person who brought this to my attention. This revised version has no details of any individual, de-identified or otherwise.

I have a long list of people who used to be my friends but aren’t any more. There range from people who have simply dropped off the list and those who actively hate me. I have people who have excised me from their lives and people I have felt the need to excise from my own. Some of them I am very glad are gone. Removing a toxic person from your world is like being Frodo Baggins in Lord of the Rings when the ring gets destroyed. In the movie version Frodo says ‘It’s gone!’ With a huge sense of relief. That is definitely how I have felt when some people have gone from my world. 

I have learned a lot form my experience with a number of toxic friends over the years. The most useful lesson was that it is OK to excise a person from your life. You do not need friendships which cause you only stress and misery. Now I am better at spotting the signs of a toxic narcissist so hopefully can avoid entering into friendships with these sorts of people in the first place.

One thing which has always worried me is when friends distance themselves from me and don’t tell me the reason. I have had a few friends do this over the years and it always stresses me out. What did I do wrong? I wonder. Why does this person I used to be close with now not like me? I think that if a fried upsets you – and especially if they are autistic – it is best to tell them what the problem is. Not only will this avoid them being worried about what they did and ruminating on this and feeling bad about themselves, it also gives you the opportunity to work out any differences and repair the relationship. It is always best to tell someone if there is an issue but I recognise it can be difficult, especially for people who struggle with assertiveness. 

One issue with ex-friends is when you encounter them unexpectedly and there is a very difficult exchange. This has happened to me a few times, most of which were extremely stressful and upsetting. I have improved in handling these situations and on one occasion I managed to respond to the ex-friend with assertiveness which was  wonderful. Ten points to Yennski for assertiveness! It was a really difficult thing to do but I feel like it was good to communicate clearly and stand up for myself.

These days I don’t really care if I have a list of people who really dislike me but in the past this would have been a huge issue for me. I was bullied through school and had a number of traumatic experiences of abuse and violence as a young adult. I also spent time in prison where being a social outcast could result in some pretty dire situations including being attacked or killed. As a result of these things I longed for social acceptance and any friendship was a good one in my books.  The very notion of somebody not liking me or of me excising a friend from my life was unimaginable and I had a lot of very unpleasant friendships as a result. As I grew older I started to value and respect myself more. I realised that not everyone had to like me and if someone didn’t like me, well it was their loss! I am supremely unconcerned that I have enemies. As long as they don’t hurt me, troll me or attack me they can hate me as much as they like. On a related point, when I started out as an advocate I was terrified of bad press and criticism. I would be anxious every time I posted a blog in case I upset anyone. Now I can look at a one star review of my books and not be particularly bothered by it. This change in attitudes is an absolute liberation. 

I think a lot of people who have experience bullying and other abuse can struggle with these sorts of issues. This is true for a lot of autistic people. It is great to get a place where you don’t really care and you are confident and comfortable enough in yourself to let people go who are not really acting like friends and to not worry so much if someone ‘dumps’ you. 

Stand by me: a tribute to my parents

I am told I was not an easy child. My mum says that when I was little, if it was quiet that almost certainly indicated I was up to something impressively destructive. I didn’t follow rules, I fought with my brother and I was very intelligent. Intellect is not necessarily a good thing in a child like I was as it meant I was extra challenging. Despite these things I’m told I was very loveable and quirky and most adults liked me. My grandma thought I was just wonderful as I was the youngest and she loved ‘the naughty ones.’ 

As I grew older I became less challenging and more compliant but my life was really difficult due to bullies at school. My parents were not aware of this but for me family time was my favourite time. I loved being home with my family and it was the only place I felt safe. 

When I was a teen I was quite troubled and felt very isolated socially. To address this I joined a socialist group which meant I had 100 instant adult friends. I was socially accepted by people outside of my family for the first time. Unfortunately my acceptance as a socialist led to me rejecting my family, especially my dad. We argued constantly and I left home at the tender age of 17. From this I went from bad to worse. At the age of 20 I had a partner who was a dangerous criminal and as a result of this I ended up in prison. When I was released I self-medicated with drugs and ended up getting a schizophrenia diagnosis which I still have now, almost 30 years later.

This is where my parents came into their own. Apparently one of my relatives said to my mum that she would move to Peru if her child went to jail. My mum was horrified and knew that she needed to be there for me more than ever before. Peru was simply not an option! I spent five years in prison and other institutions, unwell with mental health issues and very self-destructive. Every month I was in jail my parents would come and visit me. I spoke with them on the phone and sent them letters. Their love was so evident, even if I didn’t see it at the time. I knew my parents loved me and always would. It was the one constant in the chaos that was my life.

When I was released from my final sentence my parents were front and centre. I remember them going overseas for a holiday and coming back with loads of gifts for me. I love to imagine them being optimistic about my chance to change my life and wanting to affirm the positive choices I was finally taking by giving me thoughtful presents. I have always loved gifts! My mum observed that in prison the inmates from a middle class background usually didn’t get visits from their family. Their families tended to distance themselves. She decided that was not the outcome she wanted in our lives.

I now recognise the significant act of love my parents demonstrated by standing by me. The amount of stress involved in watching someone you love more than anything continuously sabotaging themselves must have been horrific. In addition to being supportive when I was in a dire situation as a prisoner my parents also have some other great qualities. As an autism advocate of 16 years tenure I have seen a lot of different parental attitudes around their children’s autism. Many of these attitudes have been quite damaging and unhelpful. Autistic children have been viewed as a burden, autism as a ‘curse’ and children being in need of ‘fixing.’ I remember very early in my advocacy career having a parent ask me, in front of her adult daughter, ‘how can my daughter get friends? She doesn’t have any friends and she annoys everyone.’ I wasn’t quite sure how to respond but wanted to suggest the mum may have been part of the issue! These negative views about autism and autistic kids are very unhelpful. Thankfully I can say two positive things about this, the first being that I have seen these attitudes changing over time and problem parents are less common. The other thing is that my parents have never been guilty of this sort of thing. The only issues were some stereotypes in the 1990s after I was diagnosed but to give my parents credit this was a time when there was very little information on autism available and the information that was available was often not very accurate anyway.

I often say that I owe my life and my advocacy career to my parents. When I left prison I threw out my address book as all my contacts were druggies and criminals and I wanted to escape that world. For about two years I had four people in my address book – my parents, my brother and one friend I had met in a mental health residential program. My parents love and support not only changed my life but it allowed my to live and to thrive. Our relationship has not always been easy but we have all worked on it and created a very close bond. I call them most days and they are my favourite people in the world. If you are a parent I think my parents are one good example of how to do it well. I hope none of your kids ever have to go through the drama and misery that I did but if they do experience hardships then being there for them regardless is a good thing to do. 

In denial – coming to terms with diagnoses and embracing who you are

I was first diagnosed as autistic in 1994 and with schizophrenia in 1995. It took me seven years to accept my autism and between 15 and 26 years to accept my schizophrenia, depending on how you define acceptance! 

I was 20 when I was diagnosed as autistic. At the time I was in prison (see me autobiography, Finding a Different Kind of Normal, for detail!). I was masking and was so good at it I believed myself to be a big tough criminal and drug user (rather than the scared autistic  kid trying desperately to be accepted by my peers that I actually was!). When I was given the diagnosis I thought a number of things. The first was that it was my middle class p[parents  trying to make excuses for my criminal behaviour. I also thought it was a diagnosis of ‘nerd’ and that it justified what the bullies told me at school. Needless to say I really didn’t want my autism diagnosis! 

Over the next few years any mention of autism would stress me out. The reason for this I think was that deep down I knew the diagnosis was correct but I had such a negative view of myself that anything deeply meaningful about my character was disturbing to me. I remember one time when I was in psychiatric hospital there was an autistic kid – probably about 16 years old. I absolutely hated this kid and I remember being aware that what disturbed me most about him was the similarities I saw between him and me. Now if I meet someone who reminds me of me I am delighted because I actually like myself.

Even when I finally accepted I was autistic in 2001 I didn’t particularly like the idea. I was more anxious telling people I was autistic than telling them I had been in jail. I saw it as a shameful fact about me. It took me another four years to start embracing my neurodiversity and that was only because I wrote an autobiography focussing on my autism which was published, thrusting me into the world of advocacy somewhat reluctantly.

After my first book came out and through knowing my mentor and friend Polly Samuel I finally owned my autistic identity and felt proud to be autistic but it was a long journey.

The path to accepting my schizophrenia was an even longer one than that for my autism. I had my first psychotic episode in 1995 after a long period fo heavy substance abuse. I was given the diagnosis by a hospital doctor but I dismissed it. I had met people with schizophrenia and they were not like me. Every competent psychiatrist I have ever seen has confirmed the schizophrenia diagnosis but I still failed to accept it on multiple occasions. I have been prescribed anti-psychotic medication for 26 years and I now know that doctors do not prescribe these meds unless they are pretty certain that you have a psychotic illness but I still doubted and denied that diagnosis.

I came to accept it in 2010. I had moved to Canberra from Melbourne to take up a job as a public servant in 2007.  While I had lived in Melbourne I always had a psychiatrist to prescribe my meds but when I moved to Canberra I did not see one and only had a GP who prescribed my meds. The reason for this was I had been well for a long time and figured I didn’t need a psychiatrist. I also thought public servants don’t have a psychotic illness! Sadly this view is pretty prevalent amongst other people too despite being totally wrong – as I am living proof of. I have been a public servant continuously for almost 15 years and love my job.

In 2010 I became unwell with psychosis but it took me a long time to get help. Not having a psychiatrist turned out to be very problematic. I had no support for my mental health other than calling Lifeline. After a lot of misery and scariness I ended up in hospital. The hospital psychiatrist confirmed my diagnosis and for once I accepted it. Once again it took me a further few years to accept it properly and embrace it but I made that first step.

I now know I have schizophrenia and that I need the meds – I Definitely need the meds!! I am glad I accept the diagnosis as it makes it a lot easier to manage and helps me to understand myself better.

I come across a lot of autistic people in my work as an advocate who struggle to accept their diagnosis and for whom autistic pride is not really a ‘thing.’ Sometimes these people are apologetic about this as if there is a ‘correct’ way to approach your diagnosis. There is no ‘correct’ way. Of course I am all for people embracing it and feeling proud to be autistic but it is not a failing not to! I am a very visible autistic advocate  and I couldn’t even watch a documentary on autism for many years without feeling filled with self-loathing. Thankfully I moved on from there to where I am now – an extremely out loud and proud autistic person who likes and values myself just as I am. Life is full of journeys and how you feel about your diagnosis can often be a difficult journey. We live in a world which has a lot of ableism and stigma around differences and mental health and neurotypes. It is totally understandable that people will not immediately see their neurodiversity or mental illness in a positive or accepting light. The solution to this is not to hector people into accepting their differences before they are ready to but to create a world which respects difference and supports people to be proud of who they are and accept themselves.  

Autism – challenging assumptions and functioning labels

In my life outside fo the autism and mental health and gender diversity advocacy space I am a career public servant. Shortly after I commenced my employment I responded to my boss that I ‘assumed this was the case.’ My boss responded by asking if I knew or I assumed as they were different things! That lesson stayed with me up until the present day. An assumption is not a fact – and quite often it is anything but a fact! However assumptions are very common and we all make them.

Assumptions are a natural part of being human. Apparently when we meet a new person we make an assessment – or a number of assessments – about their various elements. It takes but a few seconds to make a decision about a range of their characteristics. Our assumptions are based on things like their physical appearance, ethnic background, how they speak, if they seem educated or not,  how they dress, what we think their gender is… the list goes on. So before we even converse with a person we have made a range of assessments about them which will impact on our interactions with them and how we view them.

It is not the case that assumptions are ‘wrong’ but we need to be aware that we make them. 

When it comes to neurodiversity assumptions play a huge role and not just those snap judgements we have when we meet a person. Give someone a diagnosis of autism, ADHD, PDA, dyslexia and so forth and the assumptions will fly about the place and influence interactions with that person and expectations of their capacity. Assumptions of incompetence and a lack or capability are rife in this space. Add to this the functioning labels and levels for autism and it can make life very challenging. For example a person who is non-speaking and have the ‘low functioning’ label will almost certainly be assumed to lack competence and not be able to navigate life well or do things that others can, despite the fact that this is not necessarily the case. And take someone given the ‘high functioning’ label. They may have gained the label as a result of masking and may in fact find life extremely challenging. But that high functioning label will most likely result in them being denied access to supports that they in fact need. Assumptions plus functioning labels is a dangerous mix indeed!

Communication often relates to assumptions especially communication across neurotypes. The neurotypical / allistic majority tend to believe that their way of communicating is the only valid one and autistic / neurodivergent communication is somehow wrong. In reality both neurodivergent and neurotypical means of communication are perfectly valid – they are just different. That notion of ‘different not less’ comes into play here. I view autistic and allistic communication as being like two separate languages. It is as it autistic people speak French and allistic people speak German. French and German are both perfectly valid languages. However it is not just that autistics are speaking a different language. Int is more that allistic people do not know that autistic ‘French’ exists. So they just assume autistic people are speaking German very poorly!  I find this cultural sort of theory quite helpful in understanding the challenges in communication across neurotypes.

People are always going to make assumptions. Similarly people are always going to have biases. The issue is not so much the assumptions, rather it is people not realising their assumptions exist or challenging them. I think a lot of the assumptions around neurodivergence are really damaging and we need to challenge those assumptions with the questions ‘is that fact or assumption?’ And ‘Is this going to help people thrive or hold them back?’

Thoughts on neurodivergent people and physical health

When I went to school physical education was my least favourite subject. I think I have dyspraxia so was considered clumsy. My cousin had a nickname for me which was ‘unco’ (for uncoordinated). I was always picked last for sports teams and my PE teacher gave me such unhelpful advice as ‘don’t throw like a girl!’. Because of this I associated physical activity with misery and as soon as I no longer had to do any PE subjects I stopped doing any organised physical activity at all.

Weight was never a problem for me as a kid. I could eat lollies and chocolate as much as I liked and didn’t put on a pound. If anything I was underweight. When I was 21 I had a big issue with illicit drugs and found myself weighing 45kg! My bum was so small it hurt to sit on a couch. I had no boobs at all – which I actually liked as I am transgender and would prefer not to have boobs! I have a belt that I wore then and it doesn’t even go half way around me now! It is hard to believe I was so tiny. However being thin doesn’t always equate to being healthy and I was definitely not healthy – mentally or physically. 

I got unwell with schizophrenia at around that time and was self destructive and very troubled. I started taking anti-psychotic medication which caused major weight gain. People would look at me like I had intentionally let myself go and judge me but the reason I was overweight was actually because I was looking after my health rather than the opposite! People would be very judgmental about my weight.

I got put on a new medication in 2014 and it contributed to more weight gain. I was also quite depressed and was comfort eating, which didn’t help. My weight got as high as it ever had. I got tired just walking down the street and carrying shopping was so challenging that I started ordering my groceries online. I resigned myself to being overweight and in poor physical health for the rest of my life. I worried that I would die young as a result and felt like I couldn’t do anything to address that.

What saved me was underwear. I accidentally bought some undies which were a size too small. Because you can’t take undies back I tried them on and was amazed that they fitted. I realised that I actually could lose weight. I went to the doctor and got a referral to see a dietitian. In the past I had gone to the gym and absolutely hated it. It was anxiety-provoking being around earnest, exercising people and having to change in front of others. I really didn’t want to go back to the gym but I was willing to change my diet. 

The dietitian was really helpful. She set me up with an app for my phone which counted calories and gave me advice on what sorts of things I should eat. The first week was stressful with me constantly feeling hungry but a Yennski is not a Yennski without resolve and determination so I forced myself to change my eating habits. I lost weight steadily over the months and years. In just over two years I have lost 40kg – almost a third of Yennski at my heaviest weight! I am on a new anti-psychotic medication which has a reputation for being the worst culprit for weight gain of any of the mental health medications but that has thankfully not been my experience of it. 

Someone on my Facebook criticised me for posting about my weight loss and said weight is not a clear indicator of health and you can be overweight and healthy. While I agree with that I also know that for me I feel much healthier at a lighter weight and more energetic. Also there is a lot of research saying weight loss is generally a good thing for your physical health.  

I do some physical activity – mostly walking to the bus because I don’t drive. I could probably do more physical activity so that is something to work on. It is difficult for people who have bad experiences of poor treatment in sport classes at school. I think we need to change how we teach physical activity to kids. This change should start with banning the practice of getting kids to pick members of teams. It baffles me that this practice still happens in 2021! I think competitive team sports are not for everyone and almost always not for autistic kids. This is sad because it means we associate sport and physical activity for unpleasantness rather than enjoyment. I think alternatives to competitive team sports can be really good –  martial arts can be enjoyable as can individual activities. I wish I had a positive experience of physical activity as a kid as I think it would have made me more likely to be active as an adult. 

Diet can be a challenge for autistic kids. I think we need to remember – when thinking about kids with a limited diet – that some cultures (such as Inuit peoples) have a limited diet and they do OK. While it is probably preferable for people to eat a variety of foods it isn’t the end of the world if they don’t.

It is essential to support both physical and mental health and for us neurodivergent folks it is absolutely critical. There is a clear connection between physical and mental health so let’s hope we can promote physical health for neurodivergent people in a way which includes and engages us.

Applied denial – or what I did when my brain stopped working

On Sunday I had plans. I was going to see my friend and get my COVID jab – both very important things. I had got all my work done for the weekend and was in a good space. I put the kettle on and logged into my laptop. My vision was strange – sort of blurry. I cleaned my glasses but it made no difference. It was a bit disconnecting. I opened Facebook and tried to post my Yeme but it was like I kept hitting the wrong keys. I couldn’t make the typed words make sense. I was now quite worried and reached for my phone. Maybe my mental health was bad I thought so tried to call the crisis team. I couldn’t remember their number. This was getting rapidly weirder. I couldn’t get my brain to use my phone. I didn’t know how to dial numbers or what numbers were. I was terrified. I was all alone at Yennski HQ and couldn’t communicate to anyone that something was very wrong indeed. I eventually managed to call my parents from the recent calls list. My dad told me to call 000 which thankfully I managed to do. The ambulance got here five minutes later and took me to hospital. This was not what I had planned for my Sunday!

After being in hospital for about an hour my beautiful friend came to visit me. My dad had called her and told her what was happening. She stayed with me all day. Some friends are just gold. I waited for several hours until the doctor came back. He said my scans were clear – good news – but that it seemed that I had experienced a mini stroke or TIA. I asked if I could go home but I had to stay a bit longer. At about 7 pm the stroke nurse came and gave me a whole load of information, most of which I didn’t really take in. I had expected the doctor to tell me I had a migraine so was quite shocked at the idea of having  a stroke, even a small one. 

I am now in a position where I am more aware of the uncertainty of life than I have been before. Presumably I could now be more likely to have a similar experience or a worse one but I don’t know. I have lots of questions which don’t have answers. It is not good for my mental health that’s for sure!

I had a while of thinking I could have some kind of mid life crisis where I buy the Yennski equivalent of a phallic sports car. I actually gave this idea some airplay in my mind before I realised that I am the most responsible person I know and that I actually enjoy the life I have which was a nice realisation to come to! I don’t feel like I have spent my life doing things I don’t find fulfilling. If anything my life is extremely meaningful. 

I do feel very uncertain though. I don’t know how you are meant to feel when your physical health gives you a significant scare. Am I supposed to be all philosophical and enlightened? Am I meant to be angry and feel hard done by? Am I meant to get cranky with God? Am I just meant to be terrified or depressed? I don’t know. Maybe it is a few of those things and maybe how I feel will change with time. 

I do know ti is doing difficult things to my mental health which was already pretty tenuous before I had the mini stroke. I was at work today and I nearly had to go home because of my mental health. I feel like I am on the brink of mental health issues and want to avoid those if I can but it is really hard. 

I am practicing my strategies. I think that is all I can do. My strategies are formidable. I have a book full of them (The Guide to Good Mental Health on the Autism Spectrum). Despite my strategies I still struggle but I always figure that without them my life would be totally unmanageable. I have employed a new strategy for this situation: I call it applied denial. Applied denial basically means intentionally practicing denial about things you have no control over. In my instance it is my brain. I don’t know if I am going to have further issues with strokes. I might have one tomorrow or I might never have another one. There is nothing I can do to change this so there is no point worrying about it. Instead of worrying, I am going to tell myself that everything will be OK. I will still take the medication and do what I need to do but I will imagine there is nothing to worry about. I think this is a nifty strategy which is either going to be extremely effective or extremely ineffective but I will give it  a go.

My mum is very Christian and is constantly telling me we are mortal. Thanks mum, I already know that but it is a useful reflection in order to appreciate what we have. I may die tomorrow – everyone could – and it can be a helpful lens in terms of appreciating the good parts of life. It’s been a scary week that’s for sure. I can reflect on the good things I have and the lovely things I have done in my life. Yes, I think gratitude is the lesson here (and no mid-life crisis required!)