Yenn says no to transphobia, loudly

Content warning: Violence, transphobia

On Friday morning I received this message from a (now) former friend “…I don’t know if you are autistic or not…to be honest..I don’t care. You can identify as whatever you wish…but I will not call you they or them…I will not call you she either, because she is the cats mother….Mr Kitty died of a broken heart. I know EXACTLY why he liked my bag…I’ve had wild birds do the same thing….you weren’t home…Your books are OK…not great…but pretty good…take care Jeanette. And yes…I’ll dead name you for as long as I wish.” Needless to say I was horrified and very, very sad and they were blocked two seconds after I read the message. I had known this woman for many years, we had attended each others’ birthday parties and been to each others’ homes. 

This blog post is about bigotry, and more specifically transphobic bigotry. How is my mental health after that message? Well not good although it has been not good for some time. The message just made it another degree less good. I am more angry and sad at the way this person treated me. I suspect she is one of those people who fall under the category of ‘trans excluding radical feminists’ or TERFs although to my mind they are about as far from feminism as anyone could get. They are ideological transphobic bigots hiding behind feminism to excuse their hatred. JK Rowling is a famous example of a TERF as is Germaine Greer. I consider myself a feminist but I qualify this by saying I am an intersectional feminist to avoid being associated with TERFs who are doing immense damage to the community.

Being trans and / or gender divergent seems to attract a lot of bigotry, bullying and trolling, For some trans people they are attacked by strangers in the street. For others – including me – the bigotry tends to come from people harassing me online to people assuming I am female and misgendering me and calling em a ‘lady’. I suffer more from erasure than random hatred. I had a colleague who liked my advocacy work. This was around the time I came out as non-binary. She said to me ‘Oh but you are a real girl.” I don’t think she realised how hurtful that was. I had spent so much energy and stress coming out that to have someone assume my gender was wrong was pushing me right back into that closet was very harmful.

I have had some comments which are so silly as to almost eclipse how offensive they are, Someone told me I couldn’t wear a skirt because skirts were for girls and I am non-binary. This flummoxed me a bit. Could I wear pants? Maybe I should go nude?? I had someone else tell me I shouldn’t be involved with a women’s disability organisation because I was not a woman. The fact that the CEO and previous CEO of that organisation were also non-binary seemed to have passed this person by! I often feel like I am subject to the scrutiny of the gender expression police!

Someone commented on my social media yesterday that they had seen a lot of posts from me calling out bigotry and it must be difficult being trans as there seems to be a lot of bigotry. They were right. Transphobia is rife pretty much everywhere. In movies and TV trans people are either objects of ridicule or disgust and this is rarely challenged. While this is improving slightly there are still very few trans and gender divergent characters in movies and TV and in other positions in public life. It is as if we are invisible – or accurate and respectful portrayals of us are anyway, 

Transphobia is dangerous. It can cause suicide and self harm but it also drives some bigots to acts of violence against us. When the plebiscite for equal marriage was held in Australia a few years ago several of my trans friends were physically assaulted included one by a woman holding a Bible! There is a transgender Day of Remembrance held each year to observe the murders of transgender people. And while the situation in Australia is bad enough, in some other countries things are far worse. 

I was speaking with a friend on the phone this afternoon. We were talking about society and advocacy and gender diversity in particular.  I said that we cannot assume that things will improve in a nice gentle trajectory or that the passage of time makes bigotry less of an issue. Advocates and activists need to not be complacent as things can get nasty and take a turn for the worse almost without warning. For every person advocating for positive change there is someone who wants things to go back to a world where everyone is in the closet and perpetrators of transphobic violence face no sanctions for their hatred. We are seeing some positive changes and we need for that to continue. And I want a world where the message I shared at the start of this post would never happen. Transphobic bigotry is never OK. 

All about allies

I recently finished writing a book on advocacy with my coauthor, the awesome Barb Cook. The book is all about how to advocate for neurodivergent people. One thing we covered was allies. 

What is an ally? A quick Google search came up with this definition: To be an ally is to unite oneself with another to promote a common interest. As shown by the definitions above, people who are allies are not only helpers, but also have a common interest with those they desire to help. In an alliance, both parties stand to benefit from the bond or connection they share.

So what makes an ally? A good ally has the interests of the person they are supporting at heart and recognises that they are not being an ally for their own interest but for the interests of the person they are supporting. A good ally does not make it all about themselves. A good ally listens and provides support and encouragement.

Lots of groups have allies – for example straight allies are very common in the LGBTQA+ community. In the autism advocacy space there are also a lot of allies. Often allistic parents will advocate on behalf of – or together with – their autistic kids.

Some allies and ways of being an ally are problematic. When allistic people ignore or even go against the needs and wants of the autistic person they are ‘supporting’ this is a problem. Any kind of co-advocacy or speaking on behalf of needs to put the needs and wants of the autistic person to the front and centre even if the autistic person is a child. Actually particularly if the autistic person is a child! Children often can’t advocate for themselves so they need an ally to support them in getting their needs met. This is fine but it must be inclusive or it is likely to be discriminatory and unhelpful. 

I remember posting a Yeme once which basically said allistic people should not speak on behalf of autistics. I got a lot of negative feedback on this, mostly from parents. In this instance the criticism was probably justified. There are situations where allistic people – especially parents and carers – will need to speak on behalf of an autistic person, often a child. Speaking on behalf of someone doesn’t always have to be negative but it really, really needs to be inclusive. If you are advocating for an autistic child as an ally, make sure where possible that you communicate with them as to their needs and wants prior to the advocacy. And a person does not need to have verbal speech to communicate. If you are caring for someone who does not use verbal speech then make sure you get an Alternative and Augmented Communication (AAC) device for them. There are so many ways a person can communicate that doesn’t involve spoken words. Communication is absolutely the key to advocacy and a person who is denied the ability to communicate is likely  to be very frustrated and will struggle to get their needs met.

The area of allies and representing the needs of autistic people is a challenging one. Some people who claim to be allies are in fact doing more harm than good. A ally needs to have respect, understanding and acceptance of the autistic person they are being a ally for. They need to listen and they need to ensure their allyship is genuine and based strongly in the needs of the autistic person they are supporting.

When I was a kid we had an integration aide at my school. This woman was just awful. She was repeatedly mean to me including asking if my mum cut my hair – apparently being poor is a reason to criticise someone. This woman was supposed to be a support person for kids with disabilities but she was really unpleasant and rude to at least one Disabled kid – me. This person was hired in a role where she was supposed to essentially be an ally but she was very poor at the role and was harmful and rude. Allyship is such an important thing and it needs to be done well and with a lot of respect and kindness, not judgement or selfishness. 

A good ally can make a huge difference and an unhelpful ally can do just the opposite. If you are an ally, please consider your role and think about how you can genuinely support autistic people to reach our potential and navigate the world well. Allies can be an effective support in difficult situations and for people who struggle to advocate for themselves they can be the change and difference that is required. One thing I would say to all allies is ‘remember it is not about you.’ And a big thank you genuine allies for making the world a better place for so many of us.  

All about honesty, communication and the cultural theory of Neurodiversity

My mum is autistic. When I was a kid she was a handy translator and conduit between me and the neurotypical folk whose ways completely baffled me. However one thing my mum really struggles with is honesty. My mum has been described as being ‘brutally honest.’ She will tell it how it is regardless of the consequences. My mum is an extremely devout Christian. When I was a kid I was told from the get go that there was no such thing as Santa Claus or the Easter Bunny. I don’t remember this but I imagine I made myself very unpopular with my classmates by telling them Santa Claus wasn’t real and that the presents were probably from their parents! As an autistic kid I was also very honest. I think it is a very common autistic characteristic to be straight-talking  and honest. It isn’t just about telling the truth but is a core part of our approach to life.

Autistic people are forever getting in trouble for our honesty. Kids say things like commenting that a person is really fat and get in no end of trouble. And adults might answer a question honestly when it is not expected that they should, such as if someone asks if their butt looks big when trying on a new outfit.

I should stress that autistic people are generally not trying to be hurtful with our honesty. It is one of those areas where our approach to life is very different to what is expected. An autistic kid commenting that someone is fat is probably saying it with no judgement or prejudice against fat people. They are just commenting on something that they notice.

The issue is that the neurotypical / allistic world does not operate in this manner. It is one of those things where we are misunderstood and judged for it. I have a theory about this which I might think of as the cultural theory of Neurodiversity. I like to imagine that autistic people, metaphorically, speak French and neurotypical / allistic people speak German. If you only speak French and you try to make yourself understood to someone who only speaks German, they will really struggle to understand you. But the cultural theory has a twist which is that the German speakers (neurotypicals) have no understanding that the French speakers (autistics) are speaking another language. They just think we are speaking German really, really badly. One of the key parts of making life easier to navigate for autistic folks is to make the people metaphorically speaking German aware that we are not speaking neurotypical badly but we are speaking our own language and that language is completely valid too.

It can be so hard to understand neurotypical people. I have spoken with my mum about the honesty issue and she said she simply doesn’t understand why neurotypicals have to be dishonest. I tend to agree with her but they do not think they are being dishonest, it is just the way they communicate. For autistics our honesty is not usually a choice but is how we interact in life. Often neurotypical people think I am telling jokes or being comical when I say something which I later reflect as being maybe more honest than something they might say. I have learned to accept people thinking I am a comedian just for stating my observations of the world.

I find that autistic people often operate on only one level in terms of our thinking and communication style. What you see is what you get. Neurotypicals often work on several different levels. They tend to assume that everyone is doing the same thing (see point above about cultural differences). I find this really difficult as they read things into my communication which aren’t actually there.

I think this issue is a key issue for autistics trying to make our way in a world which primarily doesn’t really understand us. Those assumptions as to our motivations for things like honesty can lead to some very challenging situations for us. So I am keen to promote the cultural theory of Neurodiversity because I think it is a key part of how we can be respected and understood.

Reflections on autism and COVID

Last year everyone was saying how awful 2020 was. In Australia we had the worst bushfires in recorded history closely followed by COVID19. The year involved successive lockdowns and restrictions on travel. It was like we were living in police state but the reason was not oppression but public health.

For me COVID was a bit different to how I imagine many people experienced it. I was in hospital pretty much continuously from October 2019 to June 2020. When COVID and the subsequent lockdown happened, we had the chief doctor telling us increasingly dire things but we were largely protected from the challenges of lockdown. It was not possible to socially distance a lot of the time. The medication room was a case in point. This room was probably five square meters if that and when you went for your meds it would be you and at least two nurses. If COVID had got into the hospital everyone – staff and patients – would have caught it. My biggest fear was not contracting the virus, although I was concerned about that. My main fear was that I didn’t want the hospital to get repurposed and for me to go home to my flat. This flat, known as whimsy manor was owned by me and caused me more stress than anything else in my life. I lived in fear that I would need to be discharged early and go to the home which had resulted in me getting really unwell with psychosis and mood issues on several occasions. Thankfully I didn’t have to go home and ended up selling Whimsy Manor later in the year after I was discharged from hospital.

I wrote this poem about my time in hospital during lockdown:

COVID – Standing on the sidelines 

From the safety of the hospital news reports of a cruise ship seemed distant, detached

Something from another place

Nothing to concern us here

Meaning finally came with the tape on the floor

Little red and white crosses outside the hospital cafe like latter day crucifixes

Tables and chairs are spirited away to somewhere elsewhere

The realisation hits home – this is real

The fear tempered by medication and the routine of hospital life 

The head psychiatrist at every morning meeting 

With her dire warnings and apologies

Psychiatrists never apologise

This must be serious

None of us know the future 

We look to the staff

Their brave faces and professionalism unconvincingly masking fear and uncertainty 

On the sidelines of the pandemic

Observing unreal reality through mania and psychosis 

Everyone else enduring lockdown but life here goes on

We should be more concerned 

A pandemic that is real yet not real

The institution’s broad arms embracing us as we move into an unknown future  

Not only was I sort of on the sidelines of the pandemic as a hospital patient, I was also on the sidelines due to living in Canberra. We have not had an active case in Canberra for several months. We don’t have to wear masks and the restrictions seem limited to having to sanitise our hands in buildings and scan QR codes when entering premises. People hug, publicly. At work we have numbers on the meeting room doors to ensure we stay socially distant but that is pretty much it. It is very odd watching news reports about places in lockdown when you have just hugged a friend and been at work in a quite full office building, 

I think a lot of autistic people are really struggling and have really struggled during COVID times. Lockdown might benefit some people who like solitude but for a lot of people – autistic and allistic alike – confinement with just yourself or family can be very stressful and upsetting. This isn’t the case for everyone. I have an amusing story of my nephew who is 10 writing to my parents ’Grandma, what do you love about lockdown? I love not having to go to school and see people.’ However I know some people who are traumatised by the lockdown and what it entails. I think another issue for many autistic people is the uncertainties involved. How long will the pandemic be an issue? Will I or someone I love and care for catch it? Will we have to go into lockdown again? Will I be able to see my family who live in hot spot areas? Another issue people encounter is when others flout the rules. Many autistic people are very strongly motivated by doing the right thing so this is really difficult to see. And pulling someone up for doing the wrong thing can result in reprisals, even if it is the right thing to do.

My biggest issue with the pandemic in recent times is the travel restrictions. My family in Australia all live in Victoria. Victoria has been in some of the strictest lockdowns in the country. I got to visit at the end of 2020 but only just managed to as restrictions changed while I was actually there.  I haven’t seen my family who live in Melbourne for so long I have forgotten how long it actually is. This is not to mention friends living in hot spot areas. I have one lovely friend in Melbourne who often mentions how she would love to see me but I have no idea when I will be able to get there. Travel restrictions seem to change every week or two. In terms of my advocacy work I haven’t been to a face to face event interstate since October 2019. I have a couple of face to face conferences booked for this year but I will not be surprised if they get cancelled or postponed.

I wonder how this period in history will be viewed in future generations. It is one of the most challenging times I have lived through and it is actually is true that ‘we are all in it together.’ I wonder how it will impact on the mental health of people and especially autistic people who tend to be more prone to mental health issues. I hope the new vaccine will be a game changer and help the world to move into the future leaving COVID behind us. I realised I haven’t mentioned the economy in any of this which is a whole other issue for autistic people given how difficult it can be for us to find suitable work. Maybe that is something for another post.

Self portrait from 2020

The problems with functioning labels and autism

When I was a young child in primary school I started going to this place on weekends called Byron House. Most of the other people there were boys and they liked to play chess, which wasn’t really my thing. I don’t remember anyone telling me why I was there. I don’t even remember what I did there although I’m fairly certain it didn’t involve playing chess with a bunch of aspiring grand masters! I found out later that Byron House was a program for gifted kids and I one of those. Apparently my IQ score in primary school was very high and my voracious appetite for books, love of writing poetry and interest in topics apparently more mature than my years put me in the gifted group.

Intellect is not a quality I care a lot about. I have enough of it that I can do all the things I need to but it is not the key part of my work. However intellect and giftedness in Autistic people – as well as others I suppose – can become a more curse than blessing at times, particularly when it joins that very problematic concept of ‘high’ or ‘low’ functioning.

I have a friend who has two children who are Autistic. The older boy is similar to me in many ways – extroverted, quick-witted, can do his school work without to much need for assistance or intervention. This young man has been given the ‘high functioning’ label. His younger brother is more introverted and doesn’t speak much. He has some more noticeably different behaviours which bring him to the attention of staff at his school. This young man has been given the ‘low functioning’ label. My friend tells me what usually happens when educators and others meet her children: The older boy has very high – often unrealistically high – expectations placed on him, while his brother’s skills and capability is almost always ignored due to the low expectations that come with the ‘low functioning’ label. The older boy gets little or no help even if he really needs it and his brother rarely gets the opportunity for stretching or taking on challenges. This is one of the many issues with the functioning labels applied to Autistic people and the expectations which often surround them.  Applying a functioning label can rob Autistic kids and adults of the opportunities and /or supports they need simply based on assumptions around intellect and ‘functioning.’

High and low functioning Autism are not even actual diagnostic criteria within the literature. They are a sort of unofficial – and subjective – addition to the Autism diagnosis. Unfortunately they carry a lot more weight in society than they should. I am often described as ‘high functioning’. This is usually a shorthand for being verbally articulate and able to mix in non-autistic society, to study and work and so forth. If you look at me and my prodigious over-achievement of recent years, I am probably extremely ‘high functioning’ for any human being, Autistic or otherwise! However lives are not static. Twenty-two years ago I can tell you exactly where I was at this time of day on this date. I was in the management  unit at what was then known as the Metropolitan Women’s Correctional Centre in Melbourne: a privately-run hell where I engaged in all manner of self destructive activities which if I were an Autistic child in  school would have almost certainly have attracted the ‘low functioning’ label. This illustrates that functioning is a matter of time and experience and environment. Also functioning can change over the course of hours or days. I was in hospital once in recent years and the nurse asked where my carer was because I was psychotic as well as in meltdown. The assumption was that I needed 24 hour care whereas in actual fact I work in a high level job and spend my spare time writing books! At that point in my life I was definitely ‘;low functioning’ but this changed. When these labels are applied they are usually seen as ‘either / or’ rather than a range fo different levels of capability. They really don’t offer anything helpful to autistic people.

I know certain people will say ‘but this person doesn’t speak. They can’t work, they are low functioning,’ The statement contains a lot of quite unhelpful, not to mention insulting, assumptions. There are a number of Autistic activists and advocates who do not speak. Their advocacy is no less valuable because their voice comes form an iPad or laptop. The notion that people who don’t speak must of necessity have nothing to say is offensive and just simply wrong. Historically the ability to speak using vocal chords and words has been used to signify intellect and selfhood. This needs to be addressed because it is incorrect and incredibly invalidating for those who use non-speech communication.

Another problem with the functioning label, aside from it being based in quite a narrow notion of ‘function,’ is that is sets out a sort of path for people to take. It predicts what will happen in a person’s life and often this is not helpful at all. I have a friend who is a professional designer and is Autistic. He attended a specialist school for most of his primary years. His parents were told he was ‘low functioning’ and would not cope in mainstream education. Preferences and arguments around types of schooling aside, this person who was given the path for ‘low functioning’ in fact went to university and proved all of those stereotypes and assumptions wrong. This makes me wonder how many other kids and their parens are given the ‘path’ which in fact will result in them not leading the fulfilled life they otherwise could? Functioning labels come with a whole load of assumptions and in my experience assumptions and Autism are a dangerous mix often resulting in people being denied rights and opportunities.

I guess these issues relate to Autistic people being held up against measures based in non-autistic experience and values. They essentially say ‘how normal are you?’ They can either throw people in the deep end minus any support because they are apparently so ‘high functioning’ or they can result in a child and their parent/s having a predominantly pessimistic view about their future. I would like Autistic individuals to be treated on their own merits and experience, Some blanket functioning label based in a limited understanding about Autism not much use for individuals. We really need to stop using these functioning labels as hey cause a lot more harm than good and are essentially meaningless.

Happy Yenniversary – Non-binary, loud and proud and 100 per cent myself

On Thursday of this week I mark two years as Yenn. On 11 February 2019 I went to work. As I typed some worky something I thought ‘Yenne’ and wrote it down. ‘No’, I thought. I then wrote down ‘Yenn’ and I knew then that it was correct. I had found the name which best reflected my me. It was a good thing indeed.

There is some background to this. In 2018 I came out as non-binary. I viewed this as a massive liberation and one of the most important things which had ever happened to me. My dead name (name prior to transition for those who don’t already know) was very suggestive of the feminine and it didn’t suit me. Not only did it not suit me as an out non-binary person, I had never liked it. It felt like a winter coat that didn’t fit properly and felt uncomfortable but it was the only coat I had so I needed to keep wearing it. When I came out my name was on my list of things that needed addressing. I tried to find a name consciously but never managed to come up with anything  that worked. A name is a pretty important part of your identity so it needed to be right. I decided to leave my name to my subconscious. Yay to my subconscious for coming up with such a good name! I LOVE Yenn. It is so me. It also gets shortened to Yennski which I love. I have a wonderful colleague at work who calls me ‘comrade Yennski’ which always makes me smile – especially as we work in Government administration! My subconscious might have come up with Yenn but my conscious mind has unpacked it, so here goes… To yen is poetic speak for yearning and I am a big fan of self reflection (just look at my blog posts!!). Yenn is also a nod to my dead name as it has an ‘e’ and two ’n’s so it is a link to my past and Yenn is not really a gendered name, at least in Australia. 

It took me a while to get used to my name. I had a book launch event the day after I changed my name. I was in conversation with the awesome Graeme Simsion to launch his book The Rosie Result. It was at a bookshop so there were staff and guests everywhere. I heard a laugh behind me. It was Graeme who thought it was highly amusing that I was so new to my name that I didn’t look around when he called me Yenn!! In fact I was the worst culprit for dead naming and misgendering myself for some months! Apparently this is common with some trans people as we have known ourself as our assigned gender at birth and our dead name longer than anyone so it can take a while to get used to our new name and pronouns. 

I have learned a few things since I came out. One thing another trans friend said to me was that I would learn who my friends were – and weren’t – when I came out. This was 100 per cent true. Some pope surprised me by their acceptance and others surprised me with their bigotry. I didn’t lose a lot of social media followers but I lost some people I would have hoped would know better, including a friend from high school who I had known since 1987. That was hurtful. I also had someone give me a hard time online and then several months later give me a genuine apology, presumably after reflection and consideration. 

I find that every time I post something about gender diversity and being non-binary I get at least one troll. This saddens me. I talk about my criminal history and nobody trolls or blames me about that even though it is shameful but when I talk about gender diversity which is not at all shameful and is in fact something to celebrate, some sad troll dishes out a bunch of nasty bigotry.

One of the nicest things about being non-binary is that I have a profile as an autistic non-binary person. I have met so many autistic and trans young people – and not so young people – who find that me being so out loud and proud in the public domain helps them on their own journeys. I remember meeting a friend’s child who is non-binary and my friend said to them ‘Yenn uses they them pronouns too’ and this kid’s face just lit up. It was wonderful.

I am very confident in my identity. I am genuinely proud. I was talking with my dad the other day. My parents are lovely but they were brought up in a conservative church so I had never really talked about my own gender identity with them in case they had some reservations. I thought that if there were any issues it would damage our relationship. They never seemed bigoted but I didn’t want to find out the hard way! So the other day I was talking about my gender identity with my dad and he was just so beautiful and respectful. He said one thing I will always remember which was that he saw me as being visibly happier since I came out and that I was more ‘me.’ So big thank you to my dad. 

People ask me ‘where does your name come from?’ And I answer that I created it. So happy 2 year Yenniversary to me. And as an amusing last note, I often wonder if in the future there will be any kids of autistic parents – or any parents for that matter – who get called Yenn. That would be extremely cool!  

My 21 years – reflecting on life from prisoner to author – and more

Content warning: criminal justice, self harm, suicide attempts

I often joke that I have made a career of oversharing! I am a person with what you might call a difficult past who has overcome that to become something of a ridiculous overachiever. I don’t often do such reflective personal posts but I figured I was due for one. Yesterday, 5 February 2021, was a signifiant and auspicious date in the Yennski calendar. It makes 21 years of me no longer being a prisoner – a pretty big milestone in anyone’s book. I don’t think many people realise how desperate and defeated I used to be. I think a lot of people’s only understanding of the criminal justice system is what they know from movies and TV. It was not like that. I was in prison on a number of occasions. The first was due to my partner at the time being a horrible criminal and me not really figuring this out until I was so caught up with him that I was afraid he would kill me if I left him. I went along with his schemes in order mostly to survive and ended up in jail as a result. I was there for six months and it was then that I received my autism diagnosis. The experience of prison was traumatic – it was like being at school only the bullies could kill you. I was afraid for my life and tried as hard as I could to fit in. After being released that time I self medicated with drugs in order to cope psychologically. This led to me having a psychotic episode and getting. A subsequent diagnosis of schizophrenia which I still have now, 26 years later. I got unwell again in 1996 and received some very poor care resulting in my returning to prison. I became institutionalised and kept going back. I was the most broken person imaginable. Self harm and suicide attempts were my constant preoccupation and I was violent at times as well. People expected me to die. I expected – and wanted – my death. It is a piece of luck that I changed my world.

I ended up in isolation in the prison for six weeks – the six weeks prior to my final release. I hated being alone in a tiny space so when I was finally released I no longer saw the institution as an option. I finally didn’t want to go back. It was a very negative experience which led to a very positive one.  I was released to the care fo a mental health residential program on 5 February 2021, some 21 years ago. It changed my life.

My attitudes changed but it was difficult. I remember writing lists of things I didn’t like about prison and things I did like about not being in prison but it was still pretty tenuous. Thankfully the program I was staying at had a full complement of lovely staff members who cared and the whole outlook of the program was strengths-based. After six months at the program I moved out to a boarding house with several women who were homeless. This was a difficult time as the house was not very nice and the women there were quite troubled. Thankfully I got a spot in another mental health program and could stay there for up to three years.

Accommodation was a big issue for me as I was poor so had very little say in where I lived. The new house was in a very nice suburb and this actually helped me on my journey from there to here. I saw all these women walking their babies in the park during the day. They were clearly the partners of people who worked at such high level jobs that they didn’t both need to work. The cafes in this suburb were lovely and I wondered if maybe I could have a good job one day and live somewhere as nice as this. I worked out that I wanted to be ‘ordinary’. By that I meant I wanted a professional job, an education, a mortgage and a suit. I didn’t tell anyone my intentions as I figured they would laugh at me. I had only been out of prison a few moths. Who did I think I was thinking these outlandish plans! 

The job situation was tricky as a dishwashing job in a restaurant in 2001 resulted in such high stress that I became psychotic.  OK, I thought. I can’t work now but I will work one day! I proved I was up to that challenge by incrementally building my confidence for work by getting a volunteer job, a small business and then a role working for a charity – what I would now call ‘controlled challenges’.

In 2005 something happened which changed my life forever. I wrote a book, my autobiography Finding a Different Kind of Normal. It was published and my confidence grew exponentially. Three months after the book came out I applied for – and got – a public service graduate job. I even gave the department a copy of my book so they could read my story and understand how I had dramatically changed since my difficult days in the 1990s. I moved to Canberra in 2007 and my world changed.

There were factors at play that helped me to change my life. One of them is the support of my parents. They stood by me every single day and undoubtedly went through some horrific and stressful times but they stayed with me. I appreciate this more than I can say. Another protective factor is my attitude and approach to life. I am a confident optimist. If I wasn’t I would have struggled to do any of the things I do. Another factor is my level of resilience. I learn strength from difficult circumstances. And I guess the final thing is that I have faith in myself. If I take a particular route I don’t doubt that I can take it to a good place. 

I am extremely unlikely. Most people with my history, well most of them sadly are dead. And those who have overcome the kind of life I had are often content to just muddle through. I have nothing against muddling through but for me ambition and accomplishment sort of come naturally. It’s like in the distant past I sought out the extremely negative and in the last 21 years I have sought out the extremely positive. Whatever the reason I love my preposterous, unusual and highly unlikely life. I am so grateful it is hard to express. My life now – with all its challenges – is infinitely better than the troubling and destructive times I had in the past. Happy 21st to the new me.

If you want to read more about Yennski in the 1990s and early 2000s, here is a link to my autobiography: https://www.amazon.com/Finding-Different-Normal-Jeanette-Purkis/dp/1843104164

A matter of trust

CW: Predatory behaviour 

This is a post about trusting people. It is a really tricky area and I definitely do not have all the solutions! I am sharing a few of my thoughts on the topic and I hope they will be helpful.

A couple of weeks ago I went to the coast with a relatively new friend. We went to a fairly secluded beach that was only accessible via about twenty minutes on a dirt road. As we navigated the potholes and corrugations a thought crossed my mind… what if my friend was taking me to a quiet place to kill me? What if they left me in the bush and drove off? Would anyone find me or would I die alone in nature? Of course my friend didn’t kill me but it got me thinking about trust. When I was going to the beach I needed to trust my friend – not only their behaviour but their driving ability, their knowledge of the area and the level of organisation they had (e.g. that they would have enough petrol in the car!). In this instance trusting my friend was a good idea – we had a lovely time at the beach, didn’t run out of petrol and there was no murder or leaving Yennski at the side of the road! However for many autistic people trust can be a bit fo a double-edged sword.

Autistic people tend to very honest. This is a sort of default setting most of the time. We do not need to work at being honest – we simply are. Neurotypical communication is different. Often they say one thing and mean another. For autistics this can be very confusing and upsetting. I have had many conversations with my autistic mum who doesn’t understand this part of neurotypical communication and thinks they are being highly dishonest – not to mention rather baffling! I don’t think most people are always being deliberately dishonest but sometimes they are and this can be a huge issue when it comes to trust. Many autistic people assume that others are as honest and trustworthy as we are. The assumption is that everyone is honest and decent because we are and that is often the lens through which we view the world. The problem with this is that some people can take advantage of our trusting nature.

When I was younger I owed some rent to a housemate. For a variety of reasons that I won’t go into here, I gave this housemate my debit card and said she should take out the money I owed and then return the card. The next thing I knew this housemate had stolen all my money – $4000 – and moved to Queensland. I was horrified – and surprised! It had not occurred to me that she would take all my money. I spent years thinking she would apologise and pay me back. Instead she gave me a rather unlikely  justification for why she had taken all my savings and I never heard from her again! 

Sadly this kind of thing is not uncommon. One of the other autistic people who joined me as part of the documentary Alone in a Crowded Room said she was up to $500,000 in money owed to her which she would never see. It is almost like predatory people can see us coming! It is also very disappointing that this happens so often. Being trusting should be a positive quality rather than a reason to be taken advantage of.

Thoughts on addressing this include:

  • There is a saying about preventing rape. The solution to preventing rape is simply don’t rape people! I think a similar approach is true for being taken advantage of in other ways. If you want to prevent people being taken advantage of then don’t take advantage of people! In other words the victim is not responsible for the predatory behaviour. This is the main solution but it requires change from others.
  • Some strategies for addressing predatory behaviour for those on the receiving end include:
    • Being aware that not everyone is trustworthy. I think a lot of autistic people do not always have this knowledge in mind and because we are generally decent then we don’t expect others to not be decent and it comes as a surprise when someone does the wrong thing.  
    • If you get a bad feeling about something someone asks you to do, take notice of this. It should be noted though that not everyone has this sort of ‘sixth sense’.
    • Be wary of people offering a relationship very soon after meeting you. Also if your partner asks / tells you to do things you feel uncomfortable about they may well be taking advantage of you 
    • If someone gives you an offer that seems too good to be true, be very wary as it probably is!
    • If someone does take advantage of you, don’t blame yourself. It is the result of their bad behaviour, not yours. 

I should note after all that cautionary information, that trust can be extremely rewarding. It is a minority of people who will take advantage of us. Having friends and partners can be an amazing thing. I am so glad I trusted my friend and went to the beach because it was a lovely day. If I hadn’t trusted them I would definitely have missed out. So I guess the message is that trust can be a good thing but be wary of predators – it is not always a good idea to trust people. As I said, tricky!

Reflecting on 14 years of employment – and autism in the workplace

This is basically a positive story about employment and how I have managed to demonstrate positive qualities in my working life. Before I start with all the positivity I will preface this with the fact that for many autistic people employment is anything but positive. For some it is unattainable, with applications and interviews tripping us up before we even get a go. For others the unwritten rules and hidden curriculum of the workplace prove too challenging, confusing and frustrating, leading to people churning through work placements and even giving up entirely. For some anxiety and perfectionism make work impossible and for others discrimination, ableism and bullying cut short their careers. I recognise this and that for some my positive experiences are not at all relatable. The workplace definitely needs to change in a major way to address this. For me I have spent many years building a career and navigating these and other challenges, mostly very successfully. I hope that some of my experiences are helpful for others.

Next month marks fourteen years of my working in a professional role in the public sector.

When I joined the workforce I had never worked in an office before. There were loads of unwritten rules and it was a culture I knew nothing about. I observed and tried to learn the ‘language’ of the office. I was reasonably successful after a while but I still ‘get it wrong’ sometimes even after almost 14 years. I work very hard and am known for my diligence and organisational skills. My work ethic is very well-developed and, like many other autistic employees, I do not generally waste time. If I am at work I am working. Managers comment on this.

One of my positive employment qualities – and a positive life quality – is that I am very grateful. Gratitude is something I practice daily. Some years ago I was very unwell with depression. The psychologist I was seeing told me to write down something I was grateful for every day. I usually wrote down that I was grateful because I have a job. At that time in my life work was really challenging due to my illness but I was still grateful to have a job. In fact I was extremely grateful because I had a rehabilitation case manager from my workplace and they were really helpful in getting me through my period of illness. I am still consciously grateful to have a job. I joined my workplace when I was living in public housing and receiving the disability pension. My job completely changed my life for the better and I will always be grateful to that because being poor was horrible and took away all my choices. 

Another quality which makes my world of work wonderful is my honesty. Autistics tend to be naturally good at honesty and it can be a big positive. In my 14 years at work I have made three mistakes with potential consequences. (I’m a perfectionist so don’t really make many mistakes.) On each occasion as soon as I noticed the error the first thing I did was go to my manager and tell them. This may look like a difficult thing to do but as I am so honest, hiding errors from my manager would be a lot more difficult! And being honest in that situation was a lot better then hiding it.

Which brings me to a very important positive that I bring to the workplace: my autism. Autism can be a huge plus in the world of work. Autistics are often very diligent, honest, hard-working and have great attention to detail. Autistic employees can be keenly aware of errors and can be particularly respectful around diversity and inclusion in their colleagues and can pick up on things which neurotypical staff may miss. There are many companies now which only hire autistic staff, being mindful of these many positives.  

I imagine some readers might think I have never had any issues in the workplace. While I have had issues on occasions my overwhelming experience of the workplace has been very positive. After a long career I am now able to talk about autism and employment at work – and to other workplaces too. I think my experience of the workplace gives me an enviable position to not only talk about autism to employers but I imagine it also makes me a role model or mentor for other neurodivergent people wanting to work in professional roles. I am immensely grateful for my job and most mornings I wake up enthusiastic to start the day.

I really wish that other autistic people can have similar positive experiences at work as me and that they can say that their world of work is wonderful too. Making the workplace more inclusive and respectful is a big job but definitely not an unattainable one.

All out of spoons – energy and overload

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

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

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

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

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

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

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