One grateful Yennski! Or different ways to view a difficult life

I want to start this piece by saying how immensely grateful I am to be who I am and to have the life I currently do.

I am now 51 years old. I have spent just over ten years of my life in institutions – mental health, hospital and prison. So, 20 per cent of my life I have had no autonomy or choice and my actions and experiences were mostly determined by someone in a position of authority who probably didn’t have my best interests at heart. Even nice workers are still people who spend time with you because they get paid! There is the concept of the kindness of people who are being paid to be kind. As such they might be lovely but their stake in your life is very different to a genuine friend, partner or caring family member. That idea around depending on the mercy of strangers was certainly the case in my youth.

In addition to being institutionalised in a number of mostly very unpleasant places I have schizophrenia. This means if I get really anxious over a prolonged period or use illicit drugs or be victimised that the psychosis chemicals in my brain (I believe the culprit is too much dopamine) get very excited and make my life a waking nightmare for up to a year at a time, meaning I cannot work or do anything I like to do plus it is terrifying. I have taken medication for it since 1995 and the meds are brutal and can shorten your life and have very challenging side effects.

So why would I ever be grateful? This sounds like a really crappy life and one I wouldn’t recommend but actually, at this point in time, I am happy. I am often an optimist so instead of being tied down by negativity and regret I see my life now as being incredibly blessed, fortunate, lucky – whichever way you want to view it.

Yes, I was in prison for four years where violence was a regular occurrence and I was constantly in grave fear of my safety. However, at that time I had the most amazingly supportive family and when I was released, they looked after me. My parents are still with us (very big yay to that), and we love each other to a high degree. They are so proud of me now – and often tell me so! Without my family I am fairly certain I would be dead. When I got accepted into my PhD my dad apparently told everyone! The same goes for my books – and especially the first one!

I spent some time homeless but now I own my own home – well, I am paying the mortgage anyway! I could look at my past and be upset with the terror of having no stable or appropriate accommodation but instead and I am constancy delighted at my lovely Yennski HQ. Every day I am grateful for my home and the journey I took to get to being in my current position.

I used to have a drug problem which I now do not have. This is another reason for gratitude. Not only is being clean and sober awesome – and I am much happier – but my experience also helps me to support others with a similar problem and not be full of judgement. In fact, I don’t really judge others much at all. It would seem a little hypocritical if I did!

So… Yenn’s short list of things they are grateful for:

  • My trans / non-binary identity
    • And related to that, my name
  • My home
  • My employment – I couldn’t work at all for ten years in the past and now I probably have too many jobs!!
  • My family
  • Sunflower the Kitty and all her feline predecessors – Mr Kitty, Major Tom, Sensei and others  
  • That I am financially independent
  • I like myself and I have friends who also like me
  • My motivation
  • My many ‘nice things’
  • That I am doing a PhD
  • That I am sought after for my views on stuff and things 🙂
  • My wonderful Yennski brain – complete with its foibles and idiosyncracies

I always think had I taken a different (i.e. non-prison and drugs) path in my youth that I would probably be insufferable. I might even have been some kind of corporate psychopath. So, while I do not condone criminal activity (unless it involves protesting against evil regimes / fascist dictatorships) had I not taken the path I did I suspect I would be a worse human being than I am now.  

My approach to my difficult life can be seen as centring around the concept of acceptance and commitment therapy – in fact one of my psychiatrists in the past said I am the living embodiment of acceptance and commitment therapy! I don’t have enough space here to discuss it but give it a quick Google if you are interested.

Some surprising things about autism diagnosis and the DSM

I have been diagnosed as autistic for 32 years, I have written many books on autism and am considered by many to be an expert in the field…. Turns out even experts need to learn things, as I discovered this week during a course I am actually on the teaching staff for!!

The topic in my course last week was all about the history of autism diagnoses in the DSM. If you don’t know about the DSM, it relates to five main iterations of a publication released by the American Psychiatric Association, the Diagnostic and Statistical Manual of Mental Disorders. The first DSM was published in 1952 and as you would imagine contains some pretty dated diagnoses, many of which are now quite offensive! For example, homosexuality was in there and not just in the first iteration I hate to say. In the first iteration of the DSM, autism was called ‘childhood schizophrenia’. In fact, it wasn’t until the DSM III in 1980 that autism was included as a separate thing.  In 1994 another big change was made with the addition of Asperger Syndrome and the concept of autism as a spectrum.

However, interesting though these things are, the thing which amazed me was in the DSM 5. You might remember when the DSM 5 was first published in 2013 that it did away with separate diagnostic terms for autism and introduced ‘Autism Spectrum Disorder’ and three ‘levels’.  I believed – as I suspect did a lot of others –  a few things about the levels but it turns out all of my understanding – and others’ presumably – were contrary to the intent of how the DSM with its three levels should be used.

Firstly, the DSM is not an assessment method. DSM identifies various different conditions but is not used to assess individuals. Tools like the ADOS are for applying / assessing whether a person should get an autism diagnosis. The DSM just describes what that  diagnosis looks like.

Secondly. the autism levels relate to two areas of ‘impairment’ in the DSM – that being social communication and restrictive and repetitive patterns of behaviour. The three levels relate to those two domains. You can get a level of one against one domain and a level of three against the other (or whatever).  As such, you might be a level 1 in social communication and a level 2 in restricted and repetitive patterns of behaviour. That doesn’t make you a level 1.5!

Thirdly, the autism levels are not static. They can fluctuate depending on situation and time. They can change even in the course of a day. For example, you might be a level 2 in one domain when you are at work and a level 1 in the same domain at home as these are different environments which impact on your capability and which diagnostic ‘level’ applies in a particular situation.

Finally, the level numbers are not a diagnosis. To say ‘I am a level 2’ doesn’t work. You might be a level 2 at the moment against one of the criteria but that may change related to situation and time. Someone recently said I should get re-assessed as a ‘level 2’. According to how the DSM is intended to be applied, you cannot diagnose someone as a ‘level 2.’ ‘Level 2 autism’ is not a diagnosis. The only autism diagnosis in the DSM 5 is autism spectrum disorder, and the levels are a way of understanding experience, presumably in order to know when, where and how to provide supports to enable autistic people to thrive.

I’m not sure if this blows your mind as much as it blows mine! I always thought the three levels were diagnoses in and of themselves but in fact they are not! This actually makes me feel a bit more friendly towards the DSM 5! Of course, diagnosis for neurodivergent people comes with some inherent issues and risks and a deficits-based view drawn only from a medical diagnosis and identification of only problems and impairments is a damaging thing. Diagnosis needs to be used as a tool to help to empower and promote self-determination, to access necessary supports and promote a sense of pride and self-esteem – not to further disadvantage people or make them doubt their capability. That being said, clinicians and neurodivergent people too can definitely benefit from knowing these things about how the DSM diagnostic criteria can be understood and correctly applied.

I am interested to know if I just missed a major piece of information that everyone else already knew with this or if it is new knowledge for others as well.

When the world of work is wonderful – and not

Almost two years ago I left a job I had held for some years because my new managers accused me of poor performance and had dozens of closed door meetings with me outlining how and why I was a problem.  No manager before them had ever accused me of this but being me, I assumed I was in the wrong and something had broken in my brain for some reason making me a poor performer. In fact, I actually became a poor performer because I was so stressed about my performance being criticised! My rejection sensitivity and impostor syndrome meant I didn’t question the assertions that I was the problem. I believed the problem was me – for some reason I couldn’t perform a role I had done successfully for many years.  At the point I knew the outcome would probably be the termination of my employment I left. I believed for a long time that the issue was me and I would never be able to work in any job.

Since then, things have changed. I carried trauma with me because the experiences at the job I left. I stressed about my capability to work anywhere and assumed I would just keep getting less competent until I was unable to work at all and I would need to sell Yennski HQ and life would get rapidly more unpleasant in the world of all things Yenn.

When I left that job I had no regular income other than my books and talks. Even though that is a significant amount of income it is not enough to support me, so I needed to get more jobs. This meant that I was unemployed and had no confidence around my capability to work! Thankfully since then I have had other sources of income and have been quite sought after as an advocate and professional. Given I have been networking in a pretty serious way for almost twenty years this provided me with many jobs. In fact at the moment all my income comes through people I have worked with in the past or who know my work – except my PhD scholarship which happened presumably because I am an awesome researcher and impressed the selection panel with said awesomeness!

I finally know that my performance is not an issue. I was not being incompetent in my former job – although it is likely I was being discriminated against! I love my various employers at the moment and love how I approach paid work. I have over 10 income sources which means if I lose one for whatever reason I will still have the others. Working like this after spending many years in a secure ongoing professional role takes some getting used to but I know can apply for different things and am quite likely to get at least some of the opportunities I apply for. I am highly employable so that takes away some of the stress. I have other autistic friends who change jobs frequently and it seems to work for them!

Every couple of days I get all anxious about income and think nobody will employ me but thankfully the stress goes away – mostly because it is silly. I have seen m CV and if I was someone else applying for the same job as me I would be pretty intimidated!! I actually really enjoy my work at the moment. Apart from periodic uncertainty I have things pretty good! All my work is from home so I get to listen to music and pat Sunflower the kitty on her frequent visits to my home office! And I have a lovely home office too. I never blur my background on Zoom as I actually want people to see where I work!

I am relieved to get to a point where I know the issues with my former job were most likely the result of my former managers and not me. Although I am sad that this happened because it caused me trauma and stress for some time but, as my mum says, it is all a learning curve and I am infinitely happier now so thanks former managers!!  I’m not sure if making me happy was their intent but take it where you can get it I say!

Autism and criminal justice and how to become an anomaly!

I recently saw a job advertised which I thought was a perfect job for me – running a program for women prisoners at the Canberra prison, known as the AMC. I even put together an application! Why would I want to do such a thing? Well, those who know me well will know that I myself have a criminal justice history from a long time ago. I have a lot of empathy and understanding here – both in the victim / survivor space and the offender space!

There are many issues expericned by women prisoners, including disconnection from communities, being denied access to their children and losing custody of children, the impact of drug abuse – and withdrawal when incarcerated, damage to relationships with families and partners, issues accessing employment post release, housing issues and homelessness, being victimised by criminal acquaintances, partners etc, fear of being victimised while in prison, difficulties reengaging with the community on release, facing judgement and discrimination, accessibility issues for Disabled people, racism and environments not being culturally safe, self-hatred, mental health issues, self-harm and suicide and prison being used as a justice response to a health issue, sexual and other kinds of violence, recidivism, not coping in the outside world and difficulties with self-confidence.

Some of these issues are more for women but many are experienced by prisoners of all genders. Offenders are also highly likely to be victimised themselves, especially where their peer group is made up of those engaging in criminal behaviour.

In addition to the issues others face, autistic people caught up in the justice system experience a number of other issues. Autistic people are often taken advantage of by criminals and end up in trouble for things that someone else is responsible for. They may be desperate to please a criminal partner or ‘friend’. Many autistic people retaliate to bullying or abuse and end up in trouble. This is often the case as bullies will bully in private, but their victims may respond where there are others present to witness. Autistic people may seek social acceptance from others by committing crimes. Actions can be misinterpreted. Another issue is meltdowns and police response to this. A number of autistic people have been shot by police – and some killed – due to being mid-meltdown and police having no idea how to deescalate the situation and believing the autistic person was a danger to police or others.

Autistic people in jails may struggle greatly. When I went to jail, I realised it was essentially high school, but the bullies would kill or seriously injure you rather than steal your lunch money. In true Yennski survival style I became adept at  masking very quickly! Before long I was so convincing as a prisoner and hardened criminal I believed it myself! I met other autistic prisoners over the years – diagnosed and not – and they had a really hard time from their fellow inmates. My issue was more about self-destruction and there being no supports or services which could help me. My fellow inmates were usually quite nice to me, but I was not nice to myself, and I didn’t know where to go for help. I was also a recidivist – another common issue for autistic prisoners. Prison was a predictable environment. The outside world was horrible – people stole my money, abused me and homelessness was an ongoing issue. In the world of prison, I had free accommodation and food, no responsibility, I knew what would happen every day and even though there were a lot of violent people there, they usually didn’t bother me. I felt considerably safer in jail than out, and it took a pretty significant situation to make me prefer the world outside to jail.

Another issue is what do you do when you are released. Work is out there but can be very difficult for autistic people to access, let alone ex-offender autistic people! I have been described as an anomaly and one of the reasons for this is that I am an ex-prisoner – and was in jail for almost four years on and off – and I am autistic and I have a mortgage, good savings and multiple sources of income. I recognise that this is an unlikely situation! I will say though that I have some areas of privilege which serve as a counter to my difficult history: I am white, from a middle-class background and have a supportive family. So yes, my journey wasn’t easy, but those areas of privilege almost certainly made a big difference to my ability to start a new life.

My criminal history was a very long time ago – my last conviction was in September 1999. It seems at once much longer ago and also like it was yesterday. While I obviously don’t condone crime, I recognise the challenges that offenders and ex-offenders face. I understand anger at crimes and criminals – I have a few abusers in my past who I am still pretty angry at and don’t get me started on bullies! However, people can and do change and being supportive and understanding can make life easier – and also have the impact of addressing the criminal behaviour through people changing their life.

Imagine if when I applied for university in 2000 – less than one year out of jail – and they declined my offer due to my then quite recent criminal history? Imagine if my publisher declined to publish my autobiography in 2005 – and subsequent 17 books – due to my criminal history? Imagine if the public service declined my graduate role and I stayed in Melbourne living in poverty? Firstly, my life would probably be a lot more limited but there would also be something of a cost to the world! Well, I think there would… people often tell me how much my work has helped them. So, I guess what I want to convey is that people can change, autistic people can be caught up in the justice system for reasons other than intentional poor behaviour and jail can be particularly challenging but if 25 year old Yennski can change their life so dramatically that it is unrecognisable then I reckon given the right support and encouragement anyone else can too!.

We are family – supportive families, families of choice – and visiting Yenn in jail!

Anyone who has read my autobiography will know I was a prisoner between 1994 and 2000. I do not come from a family where people routinely go to prison, so this came as a complete and very upsetting surprise to my parents. They found out I was in jail when it was on the news which must have been so hard to hear! They got in their car and drove to Melbourne to stay with my mum’s stepmother and her mum who was a very wealthy – and possibly quite judgemental – person.  This woman said to my parents ‘if that was my child I would move to Peru!’. My mum more recently told me about this and shared that the sentiment around Peru was 100 per cent genuine – she really would have done so!

Thankfully my parents didn’t move to Peru, but they did learn some things they had been blissfully unaware of around the world inhabited by prisoners and criminals! I spent the next five years in and out of institutions of varying degrees of unpleasantness. The consensus view from pretty much everyone was that I was not long for this world. People expressing this sentiment were not far off. The number of times I could have died I in that five years was well into double figures. During this time my parents were always there. Always. I imagine I must have been the most stress-inducing child a parent could ever get. I had major substance abuse issues, schizophrenia which wasn’t at all controlled regardless of what medication I took, and I was aggressive and self-destructive. Plus, I didn’t appreciate my parents. I assumed that they loved me because that was what parents are supposed to do! I had no concept of what it must have cost them to support me when I was so filled with self-destruction. So many other parents become estranged to their criminal or drug addicted children but I don’t think my parents entertained that as an option.

In 2000 I made some big changes in my life. I applied for – and subsequently attended – university. I accessed support for my mental health and my attitudes to life changed dramatically.  In 2001 I enrolled in university and in 2005 I enrolled in my Master’s and wrote my first published book. In 2007 I did something which may have been impossible by getting a job in the Australian Public Service as a graduate – there were not a lot of ex-criminals in my graduate cohort!

It is interesting to reflect on my parents’ responses to me over that sort of transitional time between 2000 and 2007. In 2000 I think they thought I would probably go back to jail. They were still anxious about my future for some time, then a couple of years later they said things like ‘you landed on your feet’. These days I get lots of parental pride. I love that, not just because parental pride is always nice but because in the past my life and actions would not have elicited pride – despair was probably a more appropriate  way for parents and others to view my life.

It is my mum’s birthday today. My mum and I have always had a complex relationship. I think these days that complexity is more about deep love than the kinds of issues we experienced in the past. My mum and I are very similar in a lot of ways. When I was younger, I hated myself so if I came across someone who was like me, I would struggle. However, these days I have a lot of positive feelings about myself, so I love it when I meet people who are like me. This is actually a very good thing as people like me tend to be autistic and I am an autism advocate and my career is pretty much all about autism!

The other thing about my parents is that they are not bigoted around gender or sexuality. As a Queer person – especially as a Queer person of my age – this is a very big deal.  Shortly after I came out as non-binary, they bought me a loaf of rainbow bread! I know so many LGBTQIA+ folks whose birth family are awful bigots and don’t accept them, so I lucked out in the inclusive parent stakes!  My parents have always been there for me, and I imagine will be there into the future. I love that I am a source of joy and pride. It is great for my self-esteem but it also makes me happy. I was expected by many – including my parents I think – to die in my twenties. Not only did I not die, but I also totally reinvented myself and turned into what I term a ‘ridiculous overachiever.’ Recently when I was offered a place for my PhD my dad told me how proud he was. It was wonderful.

If my parents could avoid moving to Peru and instead drive for five hours to visit me in jail every month for some years and love me unconditionally, that is a pretty high standard of parental awesomeness! Maybe in a similar way that some people find me intimidating with all my books and things, maybe people might find my parents intimidating in their excellent parenting. Not sure but I know I am grateful as I think I owe my life to them.

And for people who for whatever reason cannot spend time with their birth family – whether they are hateful bigots or there is conflict or any other reason – there are lots of people who can be family of choice. Family of choice is where you pick close friends – or others – to be your family. Lots of Queer folks do this because tragically it is common for family members – and especially parents of kids or young people who come out – to be bigots.  In fact, families of choice can be even better than birth families because you pick them! I have some friends who are my family of choice in addition to my birth family – hey, nobody said you could only have one or other sort of family!

My mum ad me when I was a finalist for ACT Woman of the Year in 2017

The many reasons why I like cats…

Anyone who has known me for more than about three minutes knows I like cats. I have always liked cats, ever since I knew they existed. I have had a number of cats over the years – Sensei, Tilly, Mr Kitty and Sunflower to name a few. I have a good friend who is also a disability and Queer activist who said that when he dies he wants to come back as my cat! Actually, I would too – although the paradox of me dying and being alive at the same time – even in cat form –  would probably break the space-time continuum and destroy the universe, so we won’t try that! Anyway, amusing speculative science-related reflections aside, cats are pretty awesome.

I have a list of the things I love about cats:

  • Cats never judge or hate anyone based on gender, sexuality, race, nationality, disability, socio economic status, intellect or any of the other reasons humans seem to find the need to be awful to each other about
  • No cat has ever started a war
  • Cats have never voted for any horrible right-wing, hate filled political party. Actually they don’t vote for any party! Mostly because they are cats.
  • Cats are incredibly good mental health clinicians – I have never been misdiagnosed by a cat or paternalized or told I am being intentionally difficult. However, cats often give me wonderful therapy by purring and sitting on my lap and letting me know they love me
  • I have never been evicted by a cat
  • I have never been imprisoned by a cat
  • No cat has ever called me ‘inspirational’ in a paternalistic / inspo porn sort of way    
  • I have never been trolled online by a cat
  • Cats did not bully me in high school or in any of the awful jobs I have held
  • Cats don’t spark my rejection sensitivity
  • Stranger cats never offer to pray for me because of my disability when I am out and about using my cane
  • Cats have never excluded me socially
  • I have never experienced jealousy or tall poppy syndrome from a cat
  • Cats are soft and say purr
  • You earn a cat’s trust and they love you forever
  • Cats never ask you to change the TV channel or music playlist
  • Being around a cat is usually relaxing and makes life better
  • Cats tell you what they want
  • Cat body language and eye contact communication do not baffle me!
  • Cats do not complain about me talking about my passionate interests
  • Cats don’t lie or cheat
  • When cats do some of annoying things that humans do, it is actually endearing
  • Cats are the best mental health strategy that I have! When I am smooching with Sunflower any depression and anxiety I was happening tend to vanish
  • Cats are amusing – and when they realise they are being amusing they get embarrassed which is even funnier! (sorry Sunflower )
  • If you live with a cat you are not alone
  • Basically cats rock!

Sunflower wanted to say something too

“I love my human. Before I came to live with the human known as Yenn I homeless. I had five kittens. The human adopted me and my kittens went to other homes. My human is my kitten. I have not seen them catch their food and I never see them washing themselves so evidently they are pretty helpless and need my support.  I make sure I give them gifts of spiders and flies and lick their hands and nose because they are so helpless. I love my human though and I follow them everywhere in the house because most things humans do require feline supervision… going to sleep, working, watching TV and going to the toilet. These are all activities which need a cat! I love my human. I think I did pretty well in the human stakes.”

How music saved my life and why there are no good old days

I always say that life has a soundtrack. Mine certainly does. I have loved music since I was a very small Yennski. Listening to the radio, singing in church and listening to my parents’ record collection – mostly folk music from the 1960s and ‘70s, like Joan Baez, The Seekers and Simon and Garfunkel. We always had instruments at home – a piano, guitar, clarinet and sax. My dad was the talented musician and still is! I took piano lessons from when I was about nine to adulthood and did well in music exams, Eisteddfods and concerts. I once got to play at an art gallery opening when I was 17. (Yes, teenage Yenn was also an overachiever!) I loved the piano and found that I could express my emotions through music and actually be aware of my emotions – I have alexithymia so that is often tricky!

I have music playing most of the time – even when am sleeping! I listen while I am working and often am reluctant to view a work-related video when I have to because I will need to stop listening to my playlist! (Don’t worry – I’m not irritating my colleagues with my music – I am a small business and work at home so it’s just Sunflower the Kitty who has to put up with my music!)

Music was possibly the most important protective factor for me in the 1990s and I am firmly of the view that it saved my life – or at least my ongoing sanity. Why might this be? Well, not everyone knows this, but I have what you might call a difficult past. Between 1994 and early 2000 I was a criminal and a prisoner. I spent most of my time in jail with just myself for company. I read a lot of books! Somewhere in those times I got a radio and cassette player. I listened to music all the time and did keep me going. I would sit in my cell and listen to music. I had a load of cassette tapes which I have recorded from the radio. I could remember what all the songs were on each tape. If I ran short of cassette tapes I would record over my police interview tapes!! I was pretty certain I wouldn’t want to listen to those again.

When I was in jail, I decided to not listen to my actual favourite radio station because when got out it would be ruined for me and cause reflections on past trauma! This approach worked as well. When I was released I could safely listen to JJJ radio – my favourite station – without trauma or flashbacks to my time as a prisoner. I reflected to a similarly introverted friend via messenger today that I like being alone and how having my own company is a good thing, but it has taken me a long way to get there! Spending months on end with limited company or activities made a big impression!

Music really did keep me going for those years. The radio and my tapes were my friends at a time where friendship was pretty scarce. Music made a life which was horrific more manageable.

I have been thinking about music lately because I did something lovely – and musical.  I joined the Canberra Qwire. The Qwire (think a portmanteau of the words Queer and Choir) If my new favourite thing. I never knew I could sing but I can and absolutely love it! Plus, it is so welcoming, and friendly and the music is really amazing. I haven’t performed yet and I am a bit worried I will stink up the place – you now, impostor syndrome!! Actually, I am fairly certain my tenor voice will be utterly lovely, plus it’s a big choir so if there are any bits I can’t do, I will just not sing those bits! I do love it so much. It is one of a very small number of things I do which are just for me and don’t involve an output – other than music of course! Here si the website for the Qwire if you are interested – no audition required – https://www.canberraqwire.org.au/

I think attitudes to music are possibly a generational thing. My parents rarely listen to recorded music, but my brother and I – and a lot of other Gen Xers – have music on most of the time. My parents because have no affinity with recent music. The funny thing about that is that I am well on my way to a similar place, taste-wise! While I have Spotify which suggests bands I haven’t heard of before – and which I often enjoy – I don’t know much about musical acts these days. I stopped being across popular music and movies – and popular culture more broadly – in about 2003! However, despite getting older myself, I don’t like when older people are rude to younger people about music. My grandparent’s generation struggled with the Beatles! I guess tastes change. I actually find that whole generational judgement thing is often unhelpful and rude. People have bene complaining about the young generation forever. One of the Ancient Greek philosophers (I forget which!) wrote about the poor attitudes of young people in Ancient Greece!

I think maybe when we are young everything in popular culture – and the world – is new and exciting and matters to our sense of identity, but when we age that need to keep up with the latest trends and tastes is no longer the case. We look back on things associated with our own youth as being ‘good’ and as such that of the younger people as not being good! It isn’t good or bad or anything else, just different!   The concept of ‘the good old days’ applies here but the good old days happen for every generation! In fact, reflection and nostalgia are human traits. I hope I never become the old person complaining about youth or pining for the good old days of the 1980s and 1990s!

DOOM piles, chaos and ADHD and autism

I discovered something the other day – the concept of a DOOM pile and how it relates to ADHD. This resonated strongly with me.

Google AI tells us that “DOOM” piles—short for “Didn’t Organize, Only Moved”— refers to disorganized, accumulated stacks of items, papers, or clutter that people with ADHD create when overwhelmed. They represent delayed, complex decisions, acting as visual, anxiety-inducing reminders of unfinished tasks.

DOOM piles are not the result of laziness. They relate to executive functioning challenges, often in relation to working memory.

Many people assume that someone who seems apparently that disorganised must be lazy or that they don’t care but these are most likely not the reasons. People can feel ashamed of their space and not want others to see the mess. If they are in a relationship with a partner (or partners – shout out to all those awesome polyamorous people out there!), and especially if their partner is very tidy and worried by mess and chaos, DOOM piles can potentially be damaging for relationships!

Yenn’s issues with tidiness

I am an AuDHDer and chaos is my constant companion! I remember as a child we were moving to Australia and we were working out what to pack. My brother was super neat and put everything in its appropriate box…. And my room was complete and utter chaos! My dad took a photo of me in my clutter because he thought it was amusing. I always thought my passion for anarchy around the house was a failing. My mum was always telling me to clean my room as a child, and I didn’t know where to start! When I learned about executive functioning issues and ADHD and Autism it made a lot of sense. I wasn’t being deliberately chaotic – I was just chaotic by nature!

Need for chaos

I need a fair whack of chaos in order to manage my life. If things are too orderly, I feel uncomfortable, although I do prefer a level of tidiness at home. If my house is highly chaotic for some time it is usually a sign that my mental health might need some support or that I shouldn’t have taken on job#14! There seems to be a fine line between my natural baseline of chaos and problematic chaos which indicates that I am struggling. People are always offering to tidy and clean my house!

My executive functioning and chaos go further than just Yennski HQ though. I am currently managing a massive workload and have at last count 13 separate sources of income across ten organisations and I love this arrangement. I can keep across my various tasks using strategies and I love doing little bits of work and the amazing variety it brings. As with many executive functioning situations, mine respond best to practical strategies. I have a strategy for every occasion, and it makes what would otherwise be a very difficult life into a fulfilled and enjoyable one. I use my chaos to make a life that works for me – kudos!

Strategies to organise and address executive functioning issues

A fun fact about executive functioning…. My therapist did a diagnostic survey with me on executive functioning  recently and I was found to be in the third percentile of executive functioning across the population! When I found that out I was surprised to say the least! I have very low levels of executive functioning, but I live a life requiring a lot of organisation.

Some of the strategies I have been using to ensure my chaos is the ‘helpful’ kind and avoid the chaos that results in my getting stressed and overwhelmed include:

  • Avoid procrastination! That is a really hard thing, but it is very effective. The sub-strategy I use for this is when I find there is something I don’t want to do or want to put off, I simply do the thing! It means that addressing my multiple DOOM piles falls within that category or things I tend to put off so this strategy helps with that.
  • Put things into perspective. Is anyone going to die due to my messy house? Probably not worth too much stress
  • Explain to others who may be judgy that the DOOM piles are the result of your brain working differently – particularly if you are ‘out’ as ADHD / Autistic / AuDHD
  • Love and value yourself, DOOM piles notwithstanding!
  • If your DOOM pile is more mental than physical, maybe find some strategies to help unclutter your mind. I know a lot of neurodivergent people actively dislike mindfulness and CBT but there are a bunch of other thinking strategies and methods which might support a less cluttered mind – if a less cluttered mind is what you want!
  • Be aware that your DOOM piles are not a flaw or failing, you are not being lazy or intentionally disorganised
  • Learn more about executive functioning, ADHD, Autism and related topics and share your knowledge with important folks in your life – or if you are me, with anyone who stands still long enough to listen!!
  • My all-time favourite strategy for pretty much everything, including working memory, is ‘do what works for you’ (with the caveat ‘unless it is dangerous or illegal!)

Yennski HQ – on a good tidy day!!

It’s a sign of strength to ask for help

I have struggled to ask for help for my entire life. I think I am probably not alone in this. I was brought up to be self-reliant and independent. Like many others I viewed seeking help as a sign of weakness, something not to do.

When I was younger I experienced a lot of bullying. (Let’s face it, I experience a lot of bullying as an adult too!) I rarely complained about my bullying issues at school, so nobody realised how bad things were. On the rare occasion I raised an issue with a parent or teacher I was dissatisfied by the response so simply didn’t raise an issue with them again. This meant that I experienced a lot of very poor behaviour from peers every day that I was at school which went completely unchecked. It was soul-destroying and meant that I felt completely alone and unable to change what was actually pretty traumatising over many years.

As a young adult I never sought help either. In fact, it simply didn’t occur to me that it was an option to seek help. This contributed to some very tough times. By the age of 21 I had essentially flushed my life down the metaphorical toilet – I was a recent ex-prisoner with a drug addiction issue on my way to my fist episode of psychosis/ schizophrenia. I ended up in hospital for the first time since I was born. I went from having no support or help to having lots of it. To say it was a bit of a shock was an understatement!

I still have schizophrenia 31 years later. I have taken meds for it and had lots more hospital admissions since that first episode in 1995. Despite this I still struggle to seek help unless things are really bad or some encourages me to do so.

I have learned though that seeking help is a sign of profound strength. It is a good thing to do. I often worry that I am bothering people, even those in health care settings. I like to be self-reliant.

One area that causes stress is transport. I have never held a driving license or owned a car. Most of the time I use public transport or Ubers or taxis to get around but sometimes I need to ask for a lift. I absolutely hate doing this and wish I didn’t have to. With my sensible, wise Yennski hat on I know it is OK to ask for an occasional lift from a friend, but I still don’t like it. It makes me feel like I am a burden and asking my friends for favours all the time.

I do know that seeking appropriate help is a good thing to do and not something to feel ashamed of. I think society’s expectations and assumptions around disability can contribute to issues in this space. Those who can’t do things that others do easily as seen as somehow deficient or ‘less’. This doesn’t help anyone. There are also cultural and gender-based differences in this space.

There is a saying in mental health circles which is ‘You alone can do it, but you can’t do it alone.’ I like this saying and for me at least it rings true. So, if you are concerned to ask for help, be aware that we are all interdependent as human beings. At one or other point we will all need help and that is OK. Independence is different for each person, and it often involves the need for assistance to maintain independence – and that is OK too!

Yenn, asking for kitty therapy

Why I stand with the protestors and anyone standing up against Trump

I am in Australia watching untold horrors unfold in the USA. Trump has become a dictator and comparisons with Nazi Germany in the 1930s are common – and sadly I think they are correct. I used to be a socialist and my comrades said not to call a regime fascist or Nazi unless it actually was. In the case of the USA in present times, I think the fascist epithet is well-deserved.

Seeing reports of children being arrested, people being shot for apparently no reason, ICE officers going around disappearing people, racially profiling and attacking protestors is hard to watch. The president is sending in armed forces against his own people, just because the state they are in is one with Democrats in power and he is attacking his own people.

I remember when Trump first ran for government. He was being ableist against a Disabled journalist on camera. At this point I thought he would be unsuccessful in his candidacy, due to this behaviour.  Shortly after this it transpired that Trump had repeatedly grabbed women by the crotch. He even bragged about it. Once more I expected his political career to be finished, but no. He has been taken to court on civil and criminal charges on many occasions but nothing sticks. He promoted drinking bleach to cure COVID. He held political rallies when the rest of the world was in COVID lockdown and countless Americans were dying from the disease and he encouraged attendees at his events not to wear masks. He is an anti-vaxer, he is included in the Epstein files, his policies have damaged the US economy. He wants to invade sovereign nations – and he has already invaded Venezuela. He is friends with other dictators.

I have nothing positive to say about Trump and I am known for being super nice! Trump is an evil man. My mum who is very Christan says he will face judgement when he dies. I hope she is right.

America has gone from being a place which prided itself on democracy to being a dictatorship run by essentially a reality TV star. I saw Back to the Future Two in the 1980s and there was an evil industrialist called Biff in an alternate reality. He looked a lot like Trump, and I remember thinking he was similar to Trump even then. Basically, Trump is a cartoon-like evil character, but nobody is laughing. He encouraged the violent insurrection at the Capitol Building. He is racist, transphobic, homophobic, ableist and filled with unimaginable hate.

I have always been on the side of inclusion and respect and against hate and judgement, but you don’t need to be a leftist or revolutionary to abhor what is going on in the USA at the moment. As a non-binary and trans person, I am particularly concerned about the situation in the USA as there is a lot of anti-trans sentiment which is backed up by government policy. I gravely fear for the safety of my peers. Actually I fear for the safety of everyone who is under attack.

The other disturbing thing – one out of a very large number of disturbing things – is that the US government will be building, for want of a more respectful term, asylums.  In Russia under Stalin asylums were used to house political dissidents so I am concerned that will happen in the USA. The lack of accountability is awful. The regime just do awful things and ignore any previously existing checks and balances. We are only ¼ into the second Trump term and I sincerely worry that at the end of the four years Trump with just not hold an election and keep going. I told this to a friend and they said ‘oh no he can’t do that. It is illegal’. But in the past 12 months so many illegal and unethical things have happened I fear that my take on ‘four more years’ may be correct. I really hope not.

The situation in the USA is something which is beyond my ability to fix, even in a small way. But I can let the world know that I am not OK with what is going on. The one thing that characterised the horror going on in the USA for me was that a four-year-old boy was arrested by ICE last week. I posted the article on my socials and added ‘I have no words for this’ to it. It broke my heart that there is a place which once provided itself on its democracy and yet the same nation is locking up small children just because they belong to a race being profiled. It’s a four-year-old kid for God’s sake!

Something which I am happy to see is dissent. Lots of dissent, especially recently in Minnesota. The No Kings protests and other demonstrations is fantastic. Going back to my socialist days I know the value of a good protest. Demonstrations hold governments to account, reflect that many people are against bad policies and government actions  and provide power and encouragement to other people who might feel disempowered and unable to be heard. Protest is a critical way to challenge the horrors of an administration which fuelled by hate. Everyone who challenges the regime – even me writing this blog which I suspect won’t go that far – is making a positive difference. I want to be positive and think those standing against the Trump regime will win.

Protest in Minnesota last week