Content warning: Sexual violence and suicide

I have been the target of a number of scams lately so I thought it timely to post about safety online – from protecting your bank balance to your mental health.  Cyber safety covers a number of areas – trolling, predatory behaviour, dating scams, hacking and identity theft. While everyone is potentially at risk, autistic people can be particularly susceptible. This can be because we tend to be honest and up front and as such struggle to imagine others are not trustworthy. We often take people at face value. This is a great quality in some ways but when someone is trying to scam us it can be a challenge.

One of the scams I had recently was on my phone. I got a text message saying my bank account had been locked and I needed to click a link to unlock it. Normally I am pretty savvy to this kind of thing but in this instance I had just sold my property and had a lot of money in my account. The anxiety that someone had stolen my money meant I was hyper vigilant about my bank account and almost fell for the scam. Thankfully I didn’t click the link but I almost did. A lot of these scams won’t fool someone who is in a good frame of mind, has had enough sleep, isn’t anxious…. Of course many of us are in a space where we are vulnerable to scams which if we were in a perfect space we would not dream of falling for.

The scam I am most commonly attacked by is the social media dating scam. I will get a friend request from – usually – a profile of an American serviceperson complete with a photo of some ageing white man with medals. On the one occasion I added one of these I got a message in the space of about two minutes saying how I was beautiful. My response was to block them instantly because ick. Presumably most people don’t think it is real but for some people who are lonely and a bit naive they might fall for it. My understanding is that the person will end up asking for money. If anything looks too good to be true online then it probably is.

The most sophisticated scammer I ever had was someone who contacted me from a developing country and said he had kids who had disabilities. He asked me to provide him with any resources in his country that might help his kids. It actually seemed legit so I did some research and sent him details of appropriate organisations. We messaged for a while. He seemed quite nice. Then he messaged me and asked if I could buy him a computer. I responded saying that if he had Facebook presumably he had access to the internet. He got more and more persistent. I blocked him on Facebook and then he sent me an email. I blocked his email. I got emails from him in my spam folder for another three years! It certainly made me cautious of connecting with strangers online!

Predatory behavior aimed at children is particularly heinous and has the potential to do horrific damage to kids and leave them with a lifetime of trauma and misery. I can imagine how stressful it must be to be a parent trying to protect their kids from some of the horror that can await online. Some of the advice I have seen about this is to not have devices in private areas of the house so parents can be aware of what kids are viewing and if they are conversing with anyone. I remember when I was a child a man tried to grab me as I cycled past. I thought this event was mildly interesting and told my mum what had happened and understandably she had a very strong protective response. I had no inkling of what might have happened had I not stayed on my bike – why would I? I had not been told much other than ‘stranger danger’ which seemed to me to be quite an abstract concept. I don’t think it is about terrifying your kids with horror stories of what might happen to them but it is very important to ensure autistic kids are aware of what they need to do around safety online.

I want to finish with trolls. (Gee wouldn’t it be good if we could actually finish with trolls forever!!) As an – albeit quite minor – public figure I spend a lot of time online, particularly on social media and I get my fair share of trolls. Trolls are dangerous. People have taken their lives due to trolling. I really hate trolls actually. You don’t need to be well known to get them either. I get them and I do not exactly have the level of following of Taylor Swift! One thing which happens when I get trolled is that my supporters often respond in my defence. This is just lovely and i wish it would happen whenever anyone gets trolled. It is actually quite  amusing seeing trolls getting all defensive after 30 of my social media friends shoot them down in flames! When I see trolling I would hope that my response is always to come to the defence of the person being attacked. 

Our online world is such a useful thing and for autistics online is often particularly important. As with anything there are risks as well as benefits. We need to support one another online – be that protecting our kids from predatory behaviour, defending someone being trolled or sharing safety tips with friends who might be too kind to imagine others have ulterior motives.    

CW: Death

I am currently staying in a mental health residential program as I have been quite unwell lately. Part of the program here is looking at areas where I can work to improve my mental health. One area I identified was that of hope. I was struggling with the concept and felt that when The Doors lead singer Jim Morrison said ‘none of us gets out of here alive’ he was correct. I took this a bit further and thought that life was essentially pointless as we are all going to die anyway so why bother? Fairly dark stuff. I wondered why people do anything when we all end up in the same situation – dead, mere memories to these left behind who will themselves in turn die.  Really, when it comes down to it, what is the point?

I am doing a bit better now so am able to look at this concept a bit differently. Yes we are indeed all going to die. None of us will get out of this alive but we are here and we have the opportunity to change things for the better. I like to think that we should aim to leave the world a little better off when we leave it than it was when we entered it. Our life can be a conduit for change and positivity. Today I posted this on Facebook:

Sometimes I wonder why I am me, and what can I do to be a positive and helpful person. And sometimes I think I am doing everything I can to be positive and helpful and maybe it might be making a small difference. That makes me really happy.

I firmly believe I have a purpose and that is to use my experience and insight to help others and to make the world a better place for its inhabitants. I have had a lot of challenges in life – as many people do – and I can either see these challenges as overwhelming, unfair and wholly negative or I can see tham as opportunities to learn and to empathise with others going through similar things. I am autistic (with all the social model of disability issues and discrimination that go with that), have a very tricky mental illness, I have a dark past and was living in poverty and homelessness for many years. These are all attributes that present challenges and difficulties – they certainly have for me  –  but they give my a great gift of understanding others’ similar experiences as well. This can go one way or another. It can make me despair and feel overwhelmed and broken or it can inspire me to support and understand others – and sometimes it does both!

It is easier to be hopeful when in a positive frame of mind and when focussed on supporting others. People say I give a lot through my work but in fact I have received gifts from it too. The knowledge of my mortality can actually be seen as a means of hope – spurring me on to make a difference while I am here and have the opportunity to do so. I have a limited time to do what I do so I should do as much as possible to make the world a better place.

A sense of hope is an essential part of my life and my work. Hope drives what I do both as an advocate and as a human. Well all need hope. So while Jim Morrison was correct and there is only one outcome for every single one of us, it is also true that while we are here we can work to leave a positive legacy and to support and care for those we leave behind. Hope is about making change in the here and now, about working along with others to create a better future. You don’t have to do anything huge as all of us touch many, many others with our actions and words. I do have hope, even when it is challenging and it is hard to see beyond a sense of futility and fatalism. I just need to connect with that sense that we all influence the world one way or another.

I was having a conversation at the mental health residential service I am currently in. When I spoke about my advocacy work and my eight published books a staff member said ‘oh you are so important.’ I immediately responded with ‘yes but everyone is important’, which of course is true. A fellow participant said how meaningful it was that I thought like that but to me it is simple truth. People place emphasis on the value of certain qualities. I possess many of those qualities – I am a several times published author, have done some very cool presentations, including for TEDx, have won many awards, been featured in media articles… The list goes on. People think that these attributes equal something called ‘success’. However, I have issues with the concept of success for a number of reasons.

Like intelligence, success is premised on a set or polar opposites. You either are successful or you are not but it doesn’t work like that. I am considered highly successful but I also have a mental illness which most people associate with anything other than success. I also have a now quite distant personal history with a fair amount of ‘dodginess’ involved – crime, drugs and prison. Twenty-something Yenn would never have been viewed as successful while forty-forty-something Yenn is considered very successful by most who know my work. 

Also success is ascribed for some qualities but not for others. People tell me all the time how much my work has helped them, and I’m sure it has but very few people have told my mum or dad that they were very successful in raising me. I tend to think my parents’ success is more meaningful than mine as they supported me at a time when many parents would disengage. I imagine being my parents was a very difficult thing and it was a thing they did very well. My parents have never won an award or been featured in media articles but I feel like my success pales into insignificance while compared with the deep love my parents showed in sticking around and being there for me when I really needed it. 

Another issue with the notion fo success is that is excludes so many people. A lot of people do not think they are successful and blame themselves for this. But success is a pretty arbitrary and subjective concept. Take awards as an example. I was the 2016 ACT Volunteer of the Year. Yay to me I guess but does this mean that of all the volunteers in Canberra in 2016 I was the best? Of course it doesn’t. I happened to know someone who decided to nominate me and then a panel of judges liked my nomination. While it is very nice to have an award it could have gone to loads of others. Success – and particularly awards – is often more about who you know than what you do.

Success and the apparent lack of it can be a reason for discrimination and judgement. And it can become a self fulfilling prophecy. I used to live in public housing when I was younger. My neighbours – and me too come to think of it – were given consistent messaging about their lack of success – in society, in employment, in income, in education. It was like my neighbours were victims to this negative self-knowledge and to the judgements levelled against them by a world which doesn’t have a lot of time for people who have struggled to participate in the things others take for granted, like employment. My neighbours were denied access to the world of ‘success’ and evidently felt they didn’t belong there. Of all the neighbours I was friendly with – about thirty – I was the only one who went to university. I was the first to write a book and I ended up getting a full time professional job and moving interstate and buying property. During the transitional time I was pulled in both directions. At the one time I was an alcoholic and drank with my neighbours every night and on the other I was a dedicated university student who aspired to get a graduate role in the public service. I could have gone either way but in the end I was determined to not become a victim to the exclusion which poor people commonly face. My neighbours being outside of the ‘success’ model impacted their attitudes and contributed to their continued alienation. 

Autistic and neurodivergent people often come up against some specific issues around success. If we are gifted / twice exceptional we are expected to be ‘successful’. We are cast as ‘superheroes’ and it is often assumed that we don’t require any support or assistance. Whereas if we use Augmented and Alternative Communicant (AAC) the opposite often becomes the expectation and we are assumed to have limited – or no – potential for ‘success’. In both instances the assumptions are wrong as assumptions so often are! 

I think the concept of ‘success’ is more damaging than it is useful. It makes people doubt and criticise themselves and it is used as a proxy for elitism and discrimination. Success is such an arbitrary and subjective thing and this is definitely the case where people ascribe success or a lack thereof to others. I never use the term ‘successful’ to describe. a person.  When I talk about my work I say I have ‘some accomplishments’ as I feel that is less loaded. And I start from that premise that everyone is important because we are. You don’t need a high powered job, an expensive car or eight published books to justify your existence. Every single one of us matters. 

I recently published a meme about why I remove the ‘D’ and ‘ASD’ as I don’t see autism as a disorder but a different way of being. The meme generated a lot of interest and responses, mostly in agreement with my statement. However someone commented that if we didn’t have the deficits / medical approach autistic people would be unable to access services and funding.

This is a conundrum I have considered for many years and I want to unpack it here. I will start by saying that this is one of those areas of nuance / grey areas and I don’t really have a solution to it. The medical / deficits model views autism and other neurodiveregnces as a disorder and a negative thing. In order to access funding people need to provide their level of disability and convince funding bodies – such as the NDIS in Australia – that they need help. However the social / strengths / neurodiversity model states that autism and other neurodiveregnces form a different but equally valid way of being. If you are a proud autistic who needs funding this presents a challenge!

I used the Neurodiversity / strengths models as the basis of my work but this does not mean I think autistics do not need services and funding. However if I went into a meeting to determine funding I would place the emphasis on my needs and challenges. As a very honest autistic I struggle with this as I feel like I am letting down the Neurodiversity movement by placing a focus on my challenges related to my autism but at the same time I need to access services to enable me to navigate the world. 

The problem seems to be the difference in intent and objectives for the two different approaches. If I want to feel good about myself and feel positive abbot neurodiversity and difference I need to put my ‘autistic pride’ ‘hat’ on. The intent I have is based in Neurodiversity. Conversely if I need to access funding my intent is funding so I will do what I need to to access this – I will put my ‘medical model’ hat on. This is not to say one or other is right or wrong just that the objective determines the approach. The two approaches are almost impossible to reconcile to each other.

I am the coauthor of a book with Tanya Masterman for autistic kids. The book is called the Awesome Autistic Go To Guide. You may have come across it in your travels. I think this book strikes a good balance between the models. The book is premised on autistic pride and positive self-knowledge but that being said it also includes advice for kids about managing the challenges autistic kids can face. I recognise that there are difficulties which autistic people face. 

While I am a strong proponent of the strengths base and autistic pride this does not mean I think autism is free from challenges. Being autistic can pose a lot of difficulties, from overload and meltdowns to sensory issues and hyper empathy. I saw the term ‘blissfully autistic’ used once which I took to mean having such a strengths focus as to think autism was a superior state of being. I don’t think that. I think being autistic is an equally valid and reasonable state of being to being allistic. 

I think it may be possible to reconcile the strengths base and the need for the medical / supports base. I would love to see a way of doing this which enabled autistic people to feel proud of who we are and to see our very real strengths and positives while being able to access the supports that we need. But as it stands this dichotomy is something  I struggle with. I want to keep the Disorder out of AS as I think it is damaging to our sense of who we are. I think too much emphasis is currently placed on the deficits and medical model. Of course we need supports and services but we also need to recognise -a nd be recognised for – the great positives we bring to the world. 

I was on one of those online creative websites selling people’s designs searching under ‘neurodiversity’ when I saw a t-shirt which said ’Respect the stim!’ I thought that was pretty awesome and it got me thinking about stimming – how it is an activity which has a lot of meaning ascribed to it and how it relates to ideas of autistic pride and yes, respect.

So what is a ‘stim’? If you google it you will get this: “Self-stimulatory behaviour, also known as stimming and self-stimulation, is the repetition of physical movements, sounds, or words, or the repetitive movement of objects common in individuals with developmental disabilities and most prevalent in people with autism spectrum disorders.” Sounds a bit pathological doesn’t it? 

In fact, for autistic people, stimming can be a huge positive – a way of managing anxiety and stress and feeling good and also expressing feelings like joy or excitement. Stimming tends to be something enjoyable. I often find myself stimming and I am unaware of doing it .

Stimming can be seen as political. Children who subjected to Applied Behaviour Analysis and related kinds of  ‘training’ are often punished or sanctioned for stimming. Stimming is often an activity that makes us look visibly ‘different’ to the allistic folks. ‘Therapies’ (for want of a better word because they are far from therapeutic) like ABA seem to be all about making autistic people look ‘less autistic’. Apparently looking autistic causes bullying. Actually, what causes bullying is, um, bullies. The best way to address such poor behaviour as bullying people for being different is not forcing the autistic child go look more outwardly allistic but instead to make an environment – and world – for them where autistic people are respected as we are. It is not a good way of addressing bigotry to make divergent people look less divergent.

For autistic kids an adults, being forced not to stim has a load of negatives attached. One of these is that the child will probably question themselves and may well start to hate and revile who they are. Trying to look allistic when you are not is like studying for an Oscar-winning role – it is always going to be an act, no matter how proficient at it you may be and it will be hard.  Squashing down who you are is not a good idea  and leads to things like self-hatred and self-criticism. It goes against who you are. It is cruel. Far better to encourage autistic people to be proud of themselves and stim freely.

The pathologising of autism is often bound up in responses to stimming. That horrible term ‘quiet hands’ is often levelled at autistic kids when they are flapping their hands in joy or excitement. To me ‘quiet hands’ is telling kids to ‘stop being yourself. You are embarrassing me. Act normal’. These are not sentiments I even like to reflect in this blog and certainly not something autistic children should be told.

Stimming can be a great joy. I have a lot of my own stims – clicking fingers, saying some phrases in certain situations, wiggling my fingers and playing with fibre optic lights. When I do these things I feel completely free to be me. But it is a relatively recent thing for me to stim publicly and some of my stims even now happen behind closed doors at Whimsy Manor. That judgement at ‘looking different’, the years of bullying I endured because I didn’t quite look or act like the other kids: these things did some major damage to my sense of who I am and it still lingers many, many years afterwards.

I tend to think stimming should in fact be encouraged, providing it is not harmful (and a small proportion of stims can be harmful, in which case some harm minimisation techniques may help). Stimming helps express a number of things from joy and excitement to addressing stress and anxiety and soothing when encountering a new or otherwise scary situation. If others have an issue with the stim, that is not the fault of the person stimming. In this instance, teaching autism acceptance and respect and working  to address judgemental attitudes is much more useful to my mind than stopping someone from stimming.

Stimming can be a deescalation strategy for overload for some people. Imagine how frustrating and upsetting it would be to do some deescalation when getting overloaded, and then be told not to do that anymore meaning that the person has a big meltdown and then gets punished for that! I think that kind of situation happens far too often and comes from a place where autism is not well understood and autistic people – kids and adults – are not respected.

My friend, autistic artist Prue Stevenson has done some great work on stimming, including this excellent project called ‘Stim Your Heart Out.’ You can find it here: https://www.stimyourheartout.com 

So yes, respect the stim I say! Now I must go buy the t-shirt…

CW: Depression / suicidal ideation

I have schizophrenia. My psychiatrist told me that this basically trumps any other mental health nastiness I may have, at lest in clinical terms. So actually I have an anxiety disorder and a mood disorder as well but these don’t turn up on my list of diagnoses due to the fact that, well actually I don’t know. May psychosis is viewed as more interesting than anxiety? Not sure. Anyway what I am trying to say ifs that I have a mood disorder and it can be extremely unpleasant and at times life threatening.

I do not have unipolar depression. I get manic quite often too which is why I say a mood disorder rather than depression. Mania can be difficult and result in reckless spending and damage to my reputation but it is far preferable to its dismal little cousin, depression. I made a Yeme (Yenn meme) a while back saying that depression shouldn’t be called a black dog because dogs are nice. I suggested that depression is a black slug which seemed much more fitting. Slimy and gross as opposed to canine qualities like being loving and playful. My black slug comes to darken my door on reasonably frequent occasions. 

I am autistic and one of the mental health conditions autistics often have – including me – is something called alexithymia. This is also known as emotion blindness. It definitely doesn’t mean I lack emotions but that it is hard or impossible for me to articulate or notice them. I remember being in hospital once talking to the psychologist. I was extremely depressed and was crying the whole way through the consultation. She said ‘you are really depressed’ but I had no concept of it and was surprised when she said that. I still struggle to notice when I am depressed. I have to observe what is happening in my life. Am I not tidying up? Am I struggling to find motivation? Am I having intrusive thoughts about self harm or suicide? Is everything an effort? If the answer to some or all of these is yes I know I am probably depressed.

Depression is often misunderstood. Some people think you can somehow will your way out of the dark place. Like you can ‘snap out of it’. It doesn’t work that way. And each person’s depression is different so what helps me may not help anyone else.   Medications are often used to treat depression but these can be tricky and especially for autistic people who often respond to meds in an atypical way. A medication which works really well for one person may have no impact on another. Most people have to try a few different meds until they get some relief. I remember in the past trying about fifteen different antidepressants and none of them worked. This is probably because of the manic episodes I have as I am now on a mood stabiliser which is actually a lot more effective. Meds aren’t a magic bullet though and many people still get depression symptoms when on meds. The meds can help but they aren’t always 100% effective.

There are some lifestyle and psychological strategies which some people find helpful for depression. These include things like diet and exercise, mindfulness meditation and using strategies like ‘opposite action’ where you do the opposite of what your mood wants you to (e.g. getting up and having a shower when you feel like staying in bed all day). Distraction is also a strategy that lots of people find helpful. That is when you focus on something engaging – preferably something you enjoy doing – which can take your attention off feeling miserable. Different people find strategies which work for them and you can pick up new ones as you move through life. Depression is not a character flaw and it is not somehow your ‘fault’. It is a medical condition just like diabetes or heart disease and no amount of giving yourself a hard time about it will make it go away. In fact that will probably make matters worse. People with depression – and particularly autistic / Neurodiverse people with depression – need support and kindness.

Content warning – bullying 

On Thursday I wore a rainbow suit to my corporate job. Ostensibly this was to mark Wear it Purple Day (which was on Friday but I work from home on Fridays). My colleagues thought my suit was wonderful and I had a really nice day. One of my colleagues who was working from home but had seen my photo of me in the suit expressed how wonderful it was that I was so comfortable that my workplace was supportive that I felt able to wear my rainbow suit. She was 100 per cent right. As the day went on I also realised that in my high school days I did everything I could to avoid looking different but as a forty-something autistic advocate, author and public servant I was not only unafraid of being different, I was actively displaying my difference and even taking delight in it.

My most recent blog post was about autistic masking. This one sort of is too I guess but from the other perspective of being happy and proud to be just exactly your own sparkling autistic self. When I started high school I almost instantly became the least popular child there. Kids in my year level hated me and kids in every other year level hated me too. Anyone who tried to befriend me would also be bullied, leaving me pretty much friendless. This was quite different to primary school where I got along quite well with most of the kids. In high school I quickly learned that I was weird and wrong – why would I doubt this as everyone told me it? I wanted to be less different as I figured people would hate me less if I was more like them. I didn’t know what it was that made me different so my strategies to fit in were all met with failure. I cut my hair differently – still hated. I wore more fashionable clothes – nope. Still hated. I even changed how I spelled my name for some reason but sadly that also had no effect on the bullying. In the end I gave up and resigned myself to being highly unpopular. 

When I left school I still wanted to fit in and be accepted. Even when I was in my thirties I would wear nondescript clothes and try to act like the people around me. I was scarred by school bullying to the extent that I thought being visibly or noticeably different would result in my being ostracised even many years after the bullying stopped.

What changed? I think the difference in my acceptance of my difference happened when I became an autism advocate. In 2012 I met a young autistic man who sparked my passion for advocacy. He had been disabled by others’ low expectations of his capacity. I realised that many other autistic young people were probably in a similar situation so I set about doing my small part to change that. As I embraced advocacy I embraced my own autistic identity. I met autistic people who became friends and role models. I realised how much I loved colour and shiny, stimmy things and my Yennski style was born. Outwardly I expressed my individual identity. I wore a rainbow wig, I bought shoes and jewellery with lots of character and I dyed my hair blue – or some of it anyway. I learned that my quirky style made other people happy and even helped enable others to express their own individuality too. It makes me really happy to express myself the way I do.

When I was a child my difference was squashed out of me. I was bullied and threatened into hating myself but as an adult I have learned to embrace my sense of style and through it my funny, quirky Yennski self. When I was trying to fit in to placate the bullies I was miserable but when I started expressing myself the way I wanted to the opposite was true. I also realised that if you hate yourself and believe what bullies say it is quite easy for bullies to grind you down and discriminate against you. I have learned that being proud of who I am and being happy to express my individuality and sense fo self actually makes it harder for people to bully me and discriminate against me. If someone had given me a hard time for wearing my rainbow suit on Thursday I would have responded with confidence and understood that it was them with the problem, not me. But when people bullied me as a kid I would have been more likely to never wear the outfit resulting in insults again and feeling like I didn’t deserve to exist. 

I’m delighted to be proud of my difference and I am grateful to the autistic community for supporting me to express myself in a quirky and proudly different way. Different is definitely not less. Different is resplendent and beautiful.

I recently posted a meme about autistic masking which proved very popular so I thought I should unpack some of my thoughts on the topic in blog form. Masking is a very common experience for autistics. It is when we mimic the actions and mannerisms of neurotypical / allistic p[people in order to be accepted. It is not a good thing but many of us do it as a survival mechanism.

I used to mask a lot. When I was at school I was visibly and obviously different. My interests were not the same as those as my peers. While they were seeking out relationships and first kisses I was fascinated with American president Ronald Reagan and the cold war! I was top of the year every year despite never once studying for an exam. I was honest and awkward and brilliant. Needless to say I was subject to a lot of bullying. I knew I was different and that I was hated for it but I had no idea how to be like my allistic peers. I tried all sorts of strategies to appear more ‘normal’ but none of them worked. I hated school but more to the point I hated myself and my weirdness. 

I left home at 17 and moved to Melbourne. By the time I finished school I was a very passionate Trotskyist, attending protests and selling socialist newspapers every weekend. Through the socialists I met an older man who was very dangerous and scary. We started a relationship. I was naive and it took me a long time to figure out that my new partner was bad news. By the time I figured this out I was in too deep. I resigned myself to a life as his partner. This didn’t happen as we were both arrested for a crime we committed. We both went to prison and this is where I learned to mask. 

When I arrived in prison I realised it was just like high school – same dynamic only the bullies in jail would kill you rather than knock your school folder out of your hands. Remembering how different I was in school and how that caused me a lot of grief I set about learning the rules in jail. I became very adept at this and soon had everyone – and myself – convinced that I was a scary criminal and drug addict. I was successful at masking – very much so. I continued being a criminal for some years, fitting in with my peers like never before.

When I was 25 I realised that I wanted a different life. Drugs and crime was a pretty desperate life and I wanted something nicer. I had a lot of guilt and shame about the things I had done in the past few years and felt like I was a terrible person. I also realised I had lost any sense of who I was due to all my masking. What should I do? What I did was decide upon what kind of person I wanted to be and go about creating that. I observed what I thought were good qualities in others and set about learning how to do them. I had an unparalleled opportunity to be a decent person and put my dodgy past firmly behind me. I consciously stopped acting to fit in and instead tried to be my new, more positive self. I wanted to be a person who didn’t have to act in order to fit in. I wanted to stand up proudly as my true self.

I now am almost 100 per cent masking free. An autistic friend recently told me I probably don’t get burned out because I am not spending my energy on masking. She was right. Masking is exhausting! It can also be seen as the opposite and the enemy of autistic pride. When we value and like ourselves and have a sense of pride we are less likely to mask. I wish we didn’t need to mask. I wish we as autistic people were all proud to be who we are and that the world valued and respected us as is, without any masking or camouflage.

A couple of years ago there was a social media campaign called #take the mask off. This was great but a few people pointed out that it is actually very difficult to just decide to take the mask off. It isn’t really something you can just decide to do and then make it happen. We mask for real, material reasons. We mask because we live in a world that doesn’t value, like or respect us a lot of the time. Masking is not a flaw – it is a response to a hostile world. To really be able to take the mask off we need to change the world. Advocacy and activism are ways to help autistics take the mask off. It should not just be down to individual autistic people to do it! Taking the mask off requires a movement and a fair degree of changing the world. 

I am delighted that I was able to take my mask off as it has been life changing. I hope things change so we can all take the mask off as we are so beautiful and amazing as our autistic selves, just as we are, no need for masks.   

And I should note that I am not talking about the use of masks to address COVID19 – if you are able to, definitely wear one of those when you go out!

On Friday settlement went through for my former home, the somewhat amusingly titled Whimsy Manor. I owned Whimsy Manor for twelve years, most of which were filled with a sense of having compromised and being very anxious around maintenance issues. I bought Whimsy Manor in 2008 because I wasn’t assertive. I moved to Canberra in 2007 and shared a house with someone who turned out to be a horrible bully. If this happened now I would simply say ‘screw you, I’m moving out’ and go to another rental but then I was afraid of the bully’s reaction. I figured I had to buy a property to escape from her without upsetting her. At this stage I had only been working full-time for less than two years and didn’t have a lot of money for a deposit. I had two criteria for a property – it needed to be near a bus route and cheap. I only looked at four properties and realised what was to become Whimsy Manor satisfied with my strict and limited criteria. I didn’t like it and there was evidence of water damage in the bedroom and kitchen but I figured I had no choice. It was bullying and being controlled or buying a property I didn’t really want. I bought the property.

At first things went sort of OK. I didn’t like my property but it hadn’t done anything horrible yet. Then in 2009 the flat upstairs had a leak form their shower. The damp came down my kitchen wall and my anxiety went through the roof. This was not helped by the fact that the owner of the flat above was reluctant to fix it. 

Finally that issue got fixed but soon afterwards something worse happened. My shower was leaking through the wall. I saw water marks in the bedroom. I called a plumber and they said my shower would need replacing. I didn’t have a lot of savings so this was a big deal. I got quotes for showers but I didn’t know what I needed. My anxiety was off the chart. When the tiller and plumber finally did their job one of them made a mistake. They both blamed each other. I didn’t care who was responsible but I did care that there was a huge hole in my bathroom where the shower should be for some weeks. Not having many close friends that I felt comfortable asking to use their shower I washed with a bucket of warm water, soap and a flannel. I started to catastrophise that the apartment would be destroyed and I would be left with a mortgage on an uninhabitable property. The anxiety was constant. For me anxiety had an additional little quirk. If I get really anxious over a period of time I develop psychosis. This is what happened in 2010. It happened gradually so I didn’t realised that I was in trouble. Eventually I ended up in hospital. I was unwell for another three years, 

Then something happened which was a gift from the heavens – Mr Kitty came into my life. In early 2013 I asked a friend who was a cat rescue woman to find me a kitty. She did and Mr Kitty became my chief therapist and best friend. He was an indoors only kitty so when I came home from work he would be there for me with purrs and smooches. A transformation happened. I started to call my compromise apartment with the leaks and water damage Whimsy Manor. I put art up all over the walls. The apartment became a friend and a good thing. Mr Kitty was the essence of Whimsy Manor. I avoided taking time off work for mental illness for another six years.

Late last year I was talking with a levelly friend. She put an idea in my mind. It was both a good and a bad Idea. The good bit was that I could sell Whimsy Manor and buy a nicer one. The bad bit was that as Whimsy Manor was over 40 years old it would probably soon need ongoing maintenance. At that moment I decided to buy another one. I knew I needed a new kitchen as mine was original with the unit and one of the doors was missing. I researched kitchen renovations and booked a company to do it. This was very stressful but I was determined to be OK. It would have been fine but for the kitchen sink. The kitchen was a non standard shape and I needed to order a special sink. The plumber assured me it wold be there but the day they did the renovation it had not arrived. I was horrified. What is the taps somehow came on and there was no sink? It would flood the kitchen! I was very stressed. Added to this I was having trouble at work and I had just started on ADHD meds which people with schizophrenia – like me – are not recommenced to take, even if my psychiatrist thought it was OK. The outcome was that I spent the next eight months very unwell and in hospital and residential services. I didn’t work for six months.

I was still determined to sell Whimsy Manor and buy a new one. Possibly ill-advisedly, when I was about to be discharged from hospital, I contacted a real estate agent. He advised me to get the Whimsy Manor painted and carpeted and then put it on the market. He recommended living in a rental wile this was happening so that is what I did. I moved into the rental a week before I was discharged. My anxiety about Whimsy Manor decreased through my not living there. Tragically Mr Kitty passed away in February. This left a big void at Whimsy Manor. It lost all its character. I just wanted it gone. The last vestiges of homeliness had gone with the passing of its most important inhabitant.  

My experience of putting Whimsy Manor on the market was amazing. It was advertised on 26 June and settlement was on 14 August – just six weeks later. Selling a property is very stressful. The day of settlement I was filled with extreme anxiety but I’m feeling much happier now. I am relieved that it is gone. I feel like Frodo after the One Ring was thrown into Mount Doom!

I don’t know if when I buy a new house I will be so anxious. I am anxious about my rental so possibly it will be similarly challenging. It makes me realise I need to use strategies to manage anxiety rather than avoiding any stressful situations. I will be buying a more recent apartment so maintenance is likely to be less of an issue. I am actually looking forward to finding my new home. I think buying will be less stressful than selling. Selling property has lots of variables, most of which are outside the seller’s control. I have had a very stressful six weeks and am very glad Whimsy Manor is no longer mine.  And yes, autistic people with schizophrenia can buy – and sell – property. I am grateful to have my lovely job which gives me the opportunity to buy property. Not a day goes by when I’m not appreciative of that. 

I was facilitating my most excellent autism women’s group – also welcoming of non-binary, trans and intersex folk – and got in a conversation with one of the attendees. They are relatively recently diagnosed as autistic and were inspired by me selling my property. They said something similar to  ‘I never realised autistic people can buy property but seeing you selling your apartment made me think maybe I can buy somewhere too’. This conversation got me thinking about autism and what we are ‘supposed’ to do and not do. 

I am 46 and don’t drive and a lot of the reason for that is people’s negative views about my capability to drive coupled with my anxiety. Nobody encouraged me to learn to drive and lots of people said I couldn’t so I never learned. Maybe if people had more confidence in me I would now have a licence.

This is a big issue for autistic people. There is so much negativity and deficits thinking around our capability that we often just don’t do things even if we would be really good at those things or we really want to. This is not only the case for kids, it relates to adults too. 

Autism tends to be viewed as being entirely negative by society. Autistic people are told what we cannot do and as a result it often means that we don’t even try. I have tried to ignore this in my life but it is really pervasive. I am lucky in a way as I wasn’t diagnosed as autistic until I was 20. I did a lot of things that if I had a diagnosis I think I would have been discouraged from doing. I moved out of home at the age of 17 and got a job shortly afterwards. I think if I had a diagnosis I would not have been allowed to leave home and live independently. I don’t think on reflection moving out at 17 was necessarily a very wise move but it did give me a lot of confidence and skills that I have used in later life.

In addition to autism I have schizophrenia. I also have a very difficult past which includes a lot of trauma. When I was 26 I decided to make some major changes in my life. I was a recently released ex-prisoner and was living in supported accommodation. Few people had any faith in my capability to do anything much but I wasn’t listening to those attitudes. I decided to go to university with a view to finding a graduate job, moving out of public housing and buying my own property. I think a lot of people would think this life trajectory would be impossible but I achieved it, moving to Canberra for work in 2007 and buying Whimsy Manor in 2008. I achieved the supposedly impossible and I did it by not listening to the negativity – be that my own self-talk or the negative messages from others. 

I think expectations and assumptions can be so unhelpful. When disability / neurodivergence / disadvantage is thrown into the mix people can doubt their capability so don’t try anything challenging even when they really want to do it. Society needs to change and those negative expectations need to be ditched. Why shouldn’t an autistic person buy property or drive a car or go to university? One area where this deficits thinking can become extreme is around parenting. People with disability are so often discouraged from having kids and when they do have kids their parenting is called into question. This is so unhelpful. I know a load of autistic and neurodivergent parents who are fantastic at parenting. In fact having neurodivergent parents for neurodivergent kids is often a big positive. Attitudes around this need to change. I absolutely love my autistic mum and when I was growing up she was always explaining the world that I found so confusing. When I was having a hard time as a young adult she was there without judgement and with support and understanding. I wouldn’t want my mum to be any way other than being her beautiful autistic self. 

I think we need to be aware of the messages we give autistic people both as individuals and as a society. I want a world where autistic people don’t doubt our capability and avoid doing things we want to because of expectations and assumptions. I am not that remarkable a person but when I set the assumptions and expectations aside I managed to complete a masters degree, get a professional job and buy – and sell – property. If I can do challenging things that I want to, I think anyone who wants to probably can too – with the right encouragement and support. If all we are told is what we can’t do than that message will become true.

Me with my 2016 ACT Volunteer of the Year award, shattering some expectations.