Oh no! I’m the responsible adult! Or why ten years in institutions can impact the ability to be responsible

I will need to start this post with some context from the part of my life which I term the ‘interesting past’ or alternatively ‘five lost years’. Between 1994-2000 I was a prisoner and for a farther six years I were in residential mental health care or long-term hospital stays. Put it all together and I have spent around ten years of my life with no responsibility at all! My food was bought for me, there was no rent or mortgage, I didn’t have to make any significant decisions, I was told what to do and when and how to do it, most of the time I didn’t need – or have – much money. I didn’t have to manage anyone, I had no kids or even pets. And I had almost no power or authority.

And we are not talking about the 1990s for all these periods in care of varying degrees of unpleasantness. As recently as 2021 I spent some months in a residential mental health care program called Step Up Step Down.

I suspect that when people see me – those who know me and those who just know my work, they probably think I am very responsible. In fact, amazingly, I am quite responsible, but I am usually terrified of responsibility. When my brother’s kids were little (under five) I was staying with them and my brother and siter-in-law wanted to get out for a couple of hours. They left me in charge of the kids. I was terrified that something awful would happen when I was minding the kids even for a couple of hours.

When I was a public servant and in some of my jobs since then I have been given responsibility for managing staff members. I absolutely hate managing people. I have no confidence that I know how to support them to be happy and productive or how to set boundaries!

The weird thing about such a long history of institutionalisation is that I actually do sometimes experience nostalgia for the time what I didn’t have to worry about paying the mortgage or making difficult decisions or just being in the big scary world. I am a big fan of the Borg in Star Trek. My favourite character is Seven of Nine – a former Borg drone who is rescued and becomes almost human. All the other characters are terrified of being assimilated by the Borg but Seven of Nine is more philosophical about it- presumably because that used to be her life and she was less bothered by the prospect of being assimilated into the hive mind having been there already! I think my attitudes around institutions might be similar. I think about the possibility of me becoming really unwell with schizophrenia and having to sell Yennski HQ and move into a supported housing place. For many that would be a nightmare but for me it would be something I did in the past and it wasn’t that dreadful. Although don’t worry – I do want to stay at Yennski HQ and have no plans to intentionally stop taking my meds or anything like that!

The thing which gets me is when there is a group of people and they see me as the ‘responsible adult’. I struggle with this – although outwardly people probably wouldn’t be aware of this as I can mask pretty effectively if I need to, even if I am very stressed inwardly! The stress about responsibility teams up with the impostor syndrome and they get together and have a bit of a field day. I am actually highly responsible if I need to be, it just terrifies me! I am good at lots of things so I think people might think I should be good at everything. I am really not. PLEASE don’t ask me to look after your kids!

I hope that my tally of institutional stays remains at ten years until I am no longer around. I think that ten years is more than enough for anyone! Despite the stresses of having a mortgage and people expecting things from me, I am definitely happier being responsible, mortgage-paying Yenn and not institutionalised Yenn!

Bedroom at Yennski HQ

I am not helpless – or an inspiration!

I have a bunch of disabilities and health conditions. I even have quite a well-funded NDIS plan! When I am out and about people tend to treat me like am a small child that needs help to do whatever I am doing. It is extremely irritating! I left home at 17 and got a job and went to university. I have a mortgage and I am a PhD candidate with a full scholarship. I have lived independently and worked for longer than many people have been alive. When those with the ‘Yenn is helpless’ assumption find out about what I would term my accomplishments, and an odd look comes over them. It is almost as if I can see the metaphorical cogs grinding around in their brain wondering how this helpless child can write 20 books and give keynote presentations and undertake PhD research and so forth.

The thing which gets me most about his is that many other Disabled people also are viewed as helpless and get treated like children but they don’t have a bunch of overachiever-y things so the assumption remains that they are all deficits and no positives and they should be paternalised and infantilised and have things done for them whether they want to or not! Oh, and please, please don’t get me started on ‘I will pray for you…’

I remember being at a conference once and I was in the quiet room – which for some reason was full of apparently non-Disabled conference volunteers. We were having what I thought was an interesting conversation when one of them sprung this on me… “So Yenn, do you live at home with your mummy?” I was pretty floored by this but managed to respond and say that no, I lived in an apartment where I was paying off the mortgage with wages from my middle manager role in the Australian Public Service! The assumption that I lived at home when I was 44 and presumably was unemployed, was, well, odd and I suspect had I not been Disabled / autistic they would almost certainly have not asked me this!

Those assumptions are infuriating for a large number of reasons. The other one is what the late great activist, Stella Young, termed ‘inspiration porn.’ This is where a Disabled person is called inspirational for doing things which would be unremarkable if a non-Disabled person did them. For example, I once had someone tell me how amazing I was for taking the bus to work every day!

One of my personal challenges around this issue is that some of my history and how I managed it and got to where I am now probably is genuinely inspirational which is certainly confusing! But taking the bus is clearly not one of those experiences!

The other thing I have only recently been aware of is my perception of myself as compared with that of others. Inside Yenn’s brain is a very nuanced picture of a competent person with lots of great things to offer the world. I have goals and intentions. I am motivated to make things better. I am good at being me and areas where I have deficits are areas where I can usually outsource to a person that can do those things for me. Most of the time I am not focussed on my deficits. I don’t feel helpless or in need of constant support – and particularly not from strangers and especially strangers who want to pray for me!. I need inclusion, acceptance and respect, not strangers trying to fix me! When I did a functional assessment for my NDIS plan last year it was clear from the answers to the questions that the OT doing the assessment thought I was profoundly Disabled and in need of a bunch of funding but that seemed really odd to me. There was a disconnect between my understanding of my needs and his and I don’t know which – if either – was ‘correct.’ Since then, I often notice this difference in the perception of me between my own perspective and that of others.

I think deficits thinking and assuming all Disabled people need significant interventions to navigate the world – and especially when we don’t – isn’t really very helpful. I also think tokenism and inspiration porn don’t help anyone either. I think some of the issues here are around the assumptions and stereotypes that so many people have. Instead of seeing someone and assuming they are not capable or need your support instead come from a perspective of listening and finding out what that person thinks and feels and needs prior to stepping in and doing it on their behalf – or assume they are inspirational for taking the bus! And, unless we actually are children of course, we are NOT children! If I need help and I am able to, I will ask for it.

Yenn, doing something actually impressive – launching one of their books!!

Look out for the trolls!! Never in the mood for bigotry and hate

Content warning: Brief reference to suicide

I wasn’t sure whether to write about chronic pain or internet trolls today. I think the trolls have won out!

Yesterday I posted a meme intended to challenge racism and it went somewhat viral. This prompted a LOT of comments, sadly many of which were from trolls and haters. I think the racist trolling was almost worse than the transphobic trolling that I experience regularly whenever I post about gender diversity or sexuality.

Yesterday I was not in the mood for trolls. (Actually, is anyone ever in the mood for them??) I was sick with a cold meaning I am unable to sing at the Qwire concert today that I have been looking forward to and putting in lot of rehearsal time over the past several months. I was in a whole bunch of rejection sensitivity and impostor syndrome about my PhD, and I was worried about income! I guess I should have thought that before posting something which might be (read was) contentious. I am actually a very innocent person and never anticipate hatred aimed at my work because I don’t actually ‘do’ hatred or bigotry! I guess chalk it up to experience for the future.

However, I shouldn’t have to censor my work unless it is actually harmful or offensive which my post yesterday was not.

When this kind of thing happens, I always wonder why. Some of the comments from people who presumably I have never met were so hostile and filled with hate that it amazed me. I never see something I disagree with online and then personally attack the person who posted it, even if I really strongly disagree. I might make a comment challenging whatever problematic thing they are posting on, but I never personally attack them. Some of the hateful comments yesterday were deeply personal and very upsetting – and one used more poo emojis than I have ever seen in a single post!!

I think one of the problems is – and this applies to me maybe but in a different way – that when you are on your computer or phone looking at social media, the only person there in physical actuality is you. The screen separates you from the reader and as such you lose the sense that you are potentially talking to millions of people. People who troll probably wouldn’t say or do anything unpleasant to someone who was physically in the room, but they do it online because of that sense of anonymity – even though they are actually connecting with a large number of people. In this sense it can be viewed as highly cowardly.

Trolls also tend to respond to one post and have no background on the person they are attacking. It makes online engagement quite stressful. I am always very trusting so don’t really expect it. Once I posted a sticker I have which features the trans pride and non-binary pride colours in a rainbow shape with the caption ‘trans and gender divergent people are welcome here.’ I thought nothing of this – it was a statement of support and inclusion, and I figured my online family would appreciate it. Sadly, some of my online ‘family’ also belonged to the family of bigots and asked things like ‘so are straight people not welcome in your house?’ Firstly, yes of course everyone is welcome, secondly straight is a sexuality not a gender and finally straight people do not face structural discrimination due to being straight. Trans people do, hence the need for a sticker! It is totally exhausting navigating these things!

There is a dangerous element to trolling too. It has caused suicides in the past. I can understand this as it has a massive impact and causes stress and self-doubt. The scary thing is that there isn’t a lot of accountabilities – either in the legal sense or in the banning the troll so from social media sense.

This is probably not the most encouraging of my blog posts but I did feel the need to write it after getting trolled. And the trolling yesterday was so bad that I took down the meme, partially because it had turned into a platform for racist bigots to be publicly awful and secondly because it was doing nasty things to my mental health. Safety online is a key concern. I wish everyone was accepting and respectful and didn’t; feel the need to attack people – and especially me! 0 when thye are trying to make the world a more inclusive place.

The sunflower lanyard – is it good for autistic folks?

I recently acquired a sunflower lanyard. For those who don’t know, the lanyard represents invisible disability. It allows people – usually in service roles – to know you have an invisible disability and adjust their practice to be supportive and inclusive.

Mostly I love the lanyard. It has already resulted in some helpful support. I flew to Perth the other day and when I was getting off the plane one of the other passengers asked if they could help with getting my carry-on baggage down form the locker. And when I came home, I got to board the flight first with no need to bare my soul and talk about my autism and schizophrenia in order to do so!

I have had a few somewhat ableist experiences with people behaving like I am totally incompetent which is annoying but, in all honesty, I used to get that before I got the lanyard!

It poses an interesting philosophical question around identity and disclosure. Wearing the lanyard is pretty much default disclosure or disability. Do I want to do that? Well for me it is probably not relevant as I have a public profile as an AuDHD and Queer person with schizophrenia. For me, my very existence is about talking about disability, but I imagine for others it might be a bit challenging to share that element of identity with people. I suspect that this is a consideration around choosing whether or not to use the lanyard.

One thing I particularly like about the lanyard is that it helps people to understand that I might be a bit different and atypical in how I interact with people. One of my pet peeves is neurotypical folks assuming I am neurotypical and then judging me harshly for being ‘weird’. The lanyard seems to help address this which is a big plus.

A potentially difficult thing about the lanyard is that not everyone knows what it means. So, you might be going through life assuming people you interact with know what the lanyard means but in fact they don’t!

I also wish we didn’t need to use something like the sunflower lanyard and that everyone was inclusive and understood how to be respectful of people- including those with disability. Sadly, at this point in time that isn’t really happening anywhere near as often as it should.

The lanyard does provide a great opportunity to start conversations with others, if you are a social person who likes to chat with people – like I am! Also if you see another person with the lanyard it can be quite affirming. I saw someone at Canberra airport last year who was wearing one and we got talking and it turns out he was an autistic advocate as well!

The lanyard can serve the practical purpose of alerting service providers and others that you may have needs that they can support you with.

So, is the sunflower lanyard good for the autistic folks? From my admittedly limited recent experience, I would answer yes. And my cat is called Sunflower, hence the image with this post!!

“You gotta have faith” … possibly! Or some brief thoughts on religion, faith and belief

I often remark that arguing about religion is similar to arguing about your favourite colour. You can never know who is right or wrong or if there even is a right or wrong. I also say that faith is an individual thing, and we all see it a little differently.

I was brought up very Christian. I remember as quite a young child asking my mum how we knew our religion was ‘right’. I thought I must have been pretty lucky to be born into the only ‘correct’ faith! This seemed foolish then and it still seems foolish now!

Some people say that religion causes wars. I think that may be a little simplistic. Faith is definitely used as an excuse of justification for war, but I am not sure the main issue is religion, rather it is political differences using religion to incite hated of others and drive participation in conflict. This is a bit of a nuanced view, and I guess it is probably easier to see religion as the root cause of violence, but I suspect it isn’t as easy as that!

My mum’s approach to faith aways interests me. My mum has faith which appears to be unwavering and is also very specific. She believes that the Garden of Eden, Adam and Eve, Noah’s Ark and Jonah in the whale were actual historical events. She also thinks that evolution isn’t true, although she assures me that her views in this area are ‘not simplistic’. It does baffle me somewhat that she is happy to believe some things which are completely preposterous and impossible and were written about thousands of years ago but is a bit thrown by evidence-based science! However illogical my mum’s faith might appear to be, it seems to be a huge comfort for her. I think it is how she makes sense of the world. It makes her life meaningful. And she is not a stereotypical bigoted, transphobic Christian. Not in any way at all. My mum doesn’t harshly judge others through the lens of her belief – which is something lot of Christians do and which gives them a very bad name with Queer folks like me.

I am actually a little envious of my mum’s faith. She is safe and secure within her belief. Her world makes sense to her. She appears to have little or no fear of death as in her world view when she dies, she will meet Jesus – something which I think she lives for. My mum’s faith enables her to live life in an uncertain world with certainty. I love this as it is so unusual for people to experience this kind of thing.

I myself do not really have much faith – maybe agnostic but no specific beliefs as such. I belief in being ethical and respecting others so maybe I am a humanist. Not sure. I have lots of scepticism and doubt though! I do worry about the meaning of life and where I will go – if anywhere – when I die. Sometimes I think I would love to have a faith – a belief system guiding me through life. I do have some belief in a higher power, but it is pretty nebulous. Surprisingly I am a fan of prayer. I often do it and it often helps me. Don’t worry, I am not one of those people that meets some random stranger and says ‘I will pray for you…’ even if they don’t want me to!

Some things around faith that I don’t think are OK include:

Judging people and using religion as an excuse for this
Being transphobic, homophobic, biphobic etc and using religion as an excuse or justification for this
Attacking people who don’t share your views
Using religion as an excuse for racism or prejudice
Thinking you are better than someone because you have a different religion to them
Doing ‘missionary work’ and trying to convert people to your view even if they have their own view. Historically this has been tied in with European imperialism in other countries, so it is also racist.

My usual approach is to respect people’s views around faith, as long as they are being respectful themselves. I also like that human experience is so varied and there are so many different views in this space. And I don’t want to argue about my favourite colour!

Reflections from the AIDS memorial

Last week I was part of a performance by the Canberra Qwire. The Qwire sings a wide-ranging repertoire of songs in support of the LGBTQIA+ community. I have been part of the Qwire since January this year. Here is a link if you are interested. I can attest that it is totally awesome. If you are interested, I am a tenor! https://www.canberraqwire.org.au/

Anyway, we did a performance last week as part of the Canberra AIDS candlelight memorial. It was a very moving event, and it got me thinking. Back in the day (1992—93) I was a member of an organization called ACT-UP – the AIDS coalition to unleash power. ACT-UP was an activist organisation, and our motto was ‘the AIDS crisis is not over’. We held protests and activities to raise awareness and understanding and make positive change for people living with HIV/AIDS. I remember having a protest march once and we went past Myers in Melbourne and chanted ‘we’re here we’re Queer were not going shopping!’ I often say this slogan now as a sort of verbal stim and people don’t have the context and don’t know what I am talking about!!

In 2006 I collected donations for the AIDS Trust, standing on the streets in the city of Melbourne asking folks for cash to support AIDS research and support. This involved a mix of nice affirming people giving money and horrible bigots telling me I was going to hell! Which brings me to some of the broader issues. AIDS is an illness, like cancer or heart disease. However, do people with heart disease or cancer get told their illness is God punishing them? In the 1980s when AIDS was first in the public eye, they were a perception that there were ‘innocent’ people with HIV/AIDS – those who acquired the illness through blood transfusions – and ‘guilty’ people – those who were gay men and to a lesser extent IV drug users. This is seriously not OK and it highlights homophobia and significant bigotry in this space – sadly some of which persists even now.

There was a movie made in the 1990s called And the Band Played On which is basically about the history of HIV/AIDS. One of the people in the movie was a gay man who was HIV positive and was in hospital. This man was a Catholic and his room in the hospital was number 666 – in Christianity the ‘number of the beast’. This man was filled with internalised homophobia and believed he was responsible for his own damnation just through his sexuality. Nobody visited him. Watching the film, this part broke my heart and also made me angry – why should anyone facing a life-threatening illness feel guilty and alone? And I am pretty sure if there is a loving God that they do not hate people for being gay or send illnesses to punish people for no reason! I guess it relates to that statement that ‘’man’ created God in his own image.’ And the ‘men’ doing this creating are bigots so they create a bigoted God. Bigotry, homophobia and hate have no place in health care – or anywhere else for that matter!

One of the things around AIDS is that it is an illness which has been highly politicised. It led to so much hateful panic in the 1980s. In Australia there was an awareness campaign which featured a TV ad of the grim reaper playing ten pin bowling and the pins were people who were knocked down by AIDS. It was horrible, bigoted, alarmist and not really very helpful to anyone. It demonised gay people and represented scare tactics of the highest order. I remember someone around that time had a sticker with said ‘hug someone with AIDS’ and loving this. There was at the time a belief that HIV/AIDS was transmitted by touch, or even by sitting on at toilet seat! The ignorance was immense. It wasn’t just ignorance around the illness, but ignorance driven by bigotry and homophobia. I think the hatred around HIV/AIDS probably put back the cause of LGBTQIA+ inclusion significantly and gave confidence to hateful bigots.

Things have changes since the 1980s. Treatments have meant people can live a long life. But there is still stigma and confusion and bigotry and the need for advocacy and activism. Which makes events like the candlelight memorial and similar events so important. I feel very proud to have been part of the activism around HIV/AIDS in the 1990s and then the early 2000s. It was work that needed doing and being a small part of the response and making change fills me with great pride. Yup – I guess we should all be part of the solution and be the change we want to see.

Seven years of Yenn – or what’s in a name – or names and trans pride

On 20 May 2019 I became officially Yenn – my legal name change came through. I love my name and its story relates to a bunch of things around identity, pride and being wonderfully Queer.

I came out as non-binary about six months before I got my Yenn. I spent some time trying to find a new name for myself as my dead name was very feminine gendered and I had never really liked it anyway- it didn’t suit me!

One thing which upsets me – and did imagine other trans folks who have got a new name – is when people ask me what my dead name is. It took me many years and challenges to come to my identity. The last thing I want if for people to invalidate that by thrusting me back into my past before I had come to my beautiful and liberating non-binary identity! To anyone out there, please don’t ask trans people about or former / dead names, or worse still use our dead name to describe us. Just don’t. It is highly upsetting and you don’t need to know.

I had my Yenn name for about three months before I changed it legally. This was because if I changed it right away and then decided that Yenn was not for me than that would have been an expensive exercise in bureaucracy – and the folks at Access Canberra had enough trouble with my application for a Working with Vulnerable People card and my dodgy history! (And don’t worry – I got the card. I just had to answer a bunch of extra questions. Curese my criminal history from the 1990s!!)

One of my big worries shortly after changing my name was that people wouldn’t know who I was – by which I mean people looking for me to request writing or for me to give a presentation. I needn’t have worried – the internet if pretty good with that sort of thing. I remember in 2019 I marched in the Sydney Gay and Lesbian Mardi Gras (which was AWESOME!!). I marched with the Aspect Autism LGBTIQA+ committee. One of my fellow Aspect marchers said to me ‘I heard Yenn Purkis would be here.’ Amused I told him I was Yenn!

Sadly, the world has a fair number of transphobic bigots and people who do not like or respect trans and other Queer folks. This makes me angry and profoundly sad. I love my Queer identities, my name, all my rainbow and non-binary and Asexual pride things in my house. Coming out as non-binary – and changing my name to one that is meaningful to me and reflects me more than my dead name ever did.… these are reasons for joy, not hatred. I am not trying to recruit anyone, I am not sinning, my gender is not a mental illness. I am a proud Yennski in relation to all my intersectional ‘bits’!

I have this awesome friend called Lizbet. I have mentioned her before, and she featured in my 2023 TEDx talk as a wonderful ally. I was out shopping with Lizbet once – we love to shop! I found some Y-related product and purchased it – I love Y things and have a lot of them! Lizbet – always astute – reflected that when my name started with J I never bought J things! She was absolutely right.

People ask what my name means. I wonder if they ask that to other people who have more conventional names. Probably not. I don’t mind answering this because my Yenn has multiple meanings. Firstly, in poetry to yen is to yearn. Given that I have made a career of oversharing and self-reflection then this is kind of apt. Plus I do occasionally write poetry too – I am in several anthologies and was a finalist in an international poetry competition in 2015 (I know, I am a ridiculous overachiever. I can’t help myself!!) Then there is the fact that my Yenn name has some of the same letters as my dead name, indicating that I do reflect on the past and much of my journey was when I had my dead name. Finally, in Australia at least, where I live, Yenn is not a gendered name.

People often ask me ‘where does your name come from’ – no doubt thinking I am from a country where it is a common name. I always say, ‘my brain’. I don’t mind that one so much, but I hate when people ask, ‘is that your REAL name?’ Of course it bloody is!! Why would I say it is my name if it isn’t my really name? Do they ask that for a cis gender man called Peter? Probably not. And don’t get me started on misgendering…. maybe that is a future blog post!

Put simply I love my name. A name should sum up who a person is, their character and identity. My name does all that. It is actually a big part of my brand – personal and professional. It also lends itself to lots of amusing terms and nicknames. Most people know I am called Yennski, which is like my public nickname. When I am talking to myself – which I admit happens a lot – I call myself Yennie or Yenns. There is Yeme, Yenniversaries, the Yenniverse…. I could go on, but I won’t. And as I like to reflect, “If you can be anyone be yourself – unless you can be Yennski, then be Yennski. Being Yennski is awesome.” And if you type Yenn into Google AI it comes up with a bunch of cool things about me – most of which are actually true!!

To disclose or not to disclose? Thoughts on talking about disability at work

I want to talk about something which is often called disclosure. What this means is telling others about your disability conditions, usually invisible ones, and especially in the context of employment. I don’t like the word disclosure but is the most commonly used term so I will stick with it here, despite my reservations.

I was prompted to write this by someone remarking recently that most people do not tell others they have schizophrenia, but I do. I own and am happy to share all my various conditions and differences, mostly because it doesn’t occur to me not to. I don’t see my autism, ADHD, schizophrenia or anxiety as shameful secrets, similarly that I wouldn’t keep my hair colour or eye colour a secret. My mental health conditions and neurodivergences to me are not a reason for shame and I do not believe that they need to be hidden from others.

I used to attend GROW – which is a twelve-step program for mental health recovery. It was actually very helpful and I would recommend it if you have psychosocial disability and twelve step programs are your ‘thing’. At GROW they have a little blue book with all the thoughts and sayings which underpin the GROW movement. One of these sayings is ‘those who mind don’t matter and those who matter don’t mind’. I love that saying and it is true, at least in my experience. So, if a person gives me a hard time about my mental health, they are not someone who matters to me or a person that I want in my life.

One of the reasons I choose to disclose is necessity. I have a profile as a Disabled advocate. If I apply for a job, it is likely that the employer will Google me. If you Google me there are quite a few sites and a lengthy Google AI entry about Yenn Purkis, the disability advocate. The internet thus makes the decision and discloses on my behalf!!

A lot of people struggle with knowing whether to disclose their invisible disability in the workplace. I have a few thoughts on this. Firstly, develop a strategy. This is a framework for whether or not you disclose and then some additional considerations. If you elect to disclose, consider:

Who will you disclose to? Your line manager, colleagues, your direct reports, etc
What will you say?
When (at what point) will you disclose? – When you apply for the job, at interview, when you are offered the role, when you start or after you have been there a while?

Each job and workplace will probably be different, but I find having a strategy helps to plan before I apply for roles.

I worked in the Australian Public Service for 17 years. I know, that isn’t a very Yenn job, but it paid the mortgage and the work was quite varied and interesting. One thing that used to make me sad at work was when colleagues would take me aside and whisper “I have bipolar [or insert mental health condition or autism here] but please don’t tell anyone”. This happened quite a lot.

Disclosing your disability can be viewed as an act of self-advocacy. I am a big fan of self-advocacy. It is also a good way to help get your needs met. If you disclose then management will be able to provide any workplace adjustments that you might need. It means if you have communication needs or sensory challenges that you can ask for assistance for these.

I do not think disclosure at work is a ‘right’ or ‘wrong’ thing to do – each person is different and it is a personal choice as to whether or not to do it. Similarly to not ‘outing’ people as Queer it is important to not ‘out’ your colleagues, managers or staff in relation to their invisible disability. I kept confidentiality for all those public service colleagues who confided their psychosocial disability with me and that was absolutely the right thing to do.

Some positions are specifically aimed at applicants with disability – called ‘identified positions’. For these you have to disclose! However, there aren’t a lot of these positions available.

The issues people face often relate to ableism in workplaces – and also internalised ableism. Some managers see disability at work as being related to incompetence and high costs. This is ableism – and it is also wrong! But these ableist attitudes do tend to persist in the workplace. These attitudes and other kinds of ableism contribute to people feeling reluctant to disclose their disability at work. It is not as simple as telling Disabled folks that they should disclose – the structural, individual and internalised kinds of ableism often need to be addressed in order to support people to be ‘out’ in the workplace.

For me I remain out loud and proud – partially because my profile dictates that I must but also because I want to and I find it helps to address issues at work and to be better supported by my managers.

Rejection sensitivity and employment

Yesterday one of my employers told me I was doing amazing work, and another said she was really happy with what I was doing. Of course I was delighted but one of the reasons it was so nice to hear is that I have significant rejection sensitivity and impostor syndrome. Also, I have a history of experiences of workplace bullying – the most recent of which took the form of performance management. As a person for whom work is probably the biggest part of my identity and also someone with rejection sensitivity and impostor syndrome this was probably the worst way of bullying me. Not sure if the bullies realised that but it weas pretty harmful and impacted me in a big way. The experience of bullying was some years ago now, but it still haunts me and makes me doubt my capability in the workplace.

What is rejection sensitivity? Also known a rejection sensitive dysphoria it relates to struggling with rejection – at times even constructive feedback. The experience of rejection or criticism is experienced as a trauma response and makes people doubt themselves. It is horrible! It is common with ADHDers and AuDHDers, but others also experience it. I can even experience it when anticipating positive feedback! It is closely related to anxiety and self-doubt.

For me, rejection sensitivity is significant and tends to make employment challenging – although some people experience it in other settings too, like relationships or in education. It is not a flaw or failing and is not people being overly sensitive. For me it is mostly around employment, but I also have some doubts around my capability in my PHD study – yesterday I got all stressed and thought I wouldn’t be able to finish my PhD due to me not being capable! This in the context of someone who was one of three students in the entire career of my primary supervisor to get the scholarship for their PhD!

Rejection sensitivity is related to anxiety and self-doubt – things which ADHDers and Autistic people tend to experience a lot of. Addressing it may be focused on challenging self-doubt and building a sense of pride and self-confidence – things which, while very helpful, can be hard to attain.

Wider society needs to be aware of this as an issue and support people rather than make things worse. For me, when I was in that difficult workplace situation my managers just kept adding to my stress and the more stressed I got, the worse my performance was! I don’t actually think my performance was all that horrible prior to my managers starting the process but it definitely was by the time I left due to my doubt and extreme anxiety!

Some people are unaware that they have rejection sensitivity which can make it harder to address. These days my employers – and PhD supervisors – are all very lovely and want me to succeed but I still struggle with rejection sensitivity, and I imagine I probably always will. I am aware of it but that doesn’t make it go away! However, awareness is good because it provides perspective and understanding and I know I am not doing anything ‘wrong’.

Substance abuse and autism

The title of this blog post is actually the same as the title of a book I had a contract for but withdrew – due to me only having enough content for two chapters!! This was in 2006 and would have been my second book. If you google me on Goodreads, it is still there for some reason, despite it having never existed!

The history of the Yennski publications back catalogue notwithstanding, the issue of alcohol and other drugs issues for autistic people remains an issue for many of us.

When I was diagnosed as autistic in 1994 the belief among clinicians seems to have been that autistic people were all rules-focussed and health conscious. However, I was not. I found myself in the psychiatric ward when I was 21 – due to drug-induced psychosis which turned into lifelong schizophrenia. There was a young boy in hospital who was diagnosed as autistic and he fitted most of the stereotypes around at the time. He told me off for smoking on one occasion. He did his schoolwork while in hospital. The head psychiatrist saw this boy as autistic because he fitted the stereotype, but I certainly didn’t so in his eyes at least I was a neurotypical drug addict! [In fact my diagnosis summary stated that I fulfilled ‘all the DSM IV criteria for Asperger Syndrome’ so the clinical psychologist who diagnosed me at least was pretty convinced about my autism and no other clinician has questions it in over 30 years.]

Along with having drug issues in the 1990s I also had, well, prison issues! The stereotype of autism at the time was certainly not a drug addict or a criminal. Hindsight – and greater understanding of the rich diversity of autistic experience – tells me that I was not atypical in my substance abuse issues – many other autistic people battle with addiction.

The other thing I have learned around this is that there’s a level of nuance around these topics. It isn’t really the case that drugs and alcohol are always bad or that anyone with an addiction issue needs to take the twelve-step approach and never partake again. That is true for some people but not all. I had a major alcohol issue between 2003-2007 mostly because I was drinking to be accepted by my public housing estate neighbours – many of whom had issues with aochol. When I moved away, I stopped drinking excessively. I am now quite capable of having one glass of wine and leaving it at that. I have not been drunk since 2011. However, for many, abstinence is essential in order to stay clean and sober.

Also, for some people, recreational drug use isn’t actually a problem. They do it occasionally and can take it or leave it. In addition, some autistic people use things like cannabis to help what chronic pain or other physical health issues. Some people use ketamine for pain or depression and people with ADHD often get prescribed amphetamines to help with focus and managing issues related to ADHD. Substance abuse tends to involve doing something to fill a metaphorical ‘void’ of some form or other, such as emotional pain or trauma. I wouldn’t ever say there is a blanket ‘drugs are bad m’kay’ because it is not that simple. For me I can’t go near cannabis or amphetamines because using those pretty much always results in me getting very unwell and having to stop work for six months at a time but for others these drugs can make a big positive difference.

There are some reasons why autistic people may be more likely to have an issue with drugs or alcohol. One of them is self-medication. This is what I did when I was younger, I had experienced trauma and wanted to block out all emotions, so I used drugs and alcohol excessively. Other people use drugs or alcohol because it is easier to socialise with neurotypical people if everyone is drunk or high. Others use drugs or alcohol to be included and fit in with others who have similar issues – like I did in my public housing place. Others use drugs and alcohol for the purpose of consistency. You don’t need to worry about your mood when you are drunk or high, and you know how you will feel when drinking alcohol or using drugs. Some people have passionate interests focussed on addiction and some get involved because a close friend or partner is involved in drugs and alcohol.

Strategies to help people overcome substance abuse issues need to be tailored to the individual’s needs – which is particularly the case with autistic people. As with other things, behaviour is communication. This means if you understand the reason for the behaviour, it will be that much easier to address it.

For me, I had major issues with drug and alcohol use between 1995-2007. People would tell me that I should stop and I always dismissed this. To an outsider it would have looked like I wasn’t taking their statements on board but actually I was – it is just that they and I didn’t realise that this was happening! I eventually got to the point where I could see that my substance use behaviour was not very helpful and at that point, I remembered all the words from those in my life who were concerned. Addiction is one of those things which seems to be best addressed through the passage of time and the opportunity to reflect. I think this is true for autistic people as much as others.