Tomorrow marks the tenth anniversary of me moving to my home Whimsy Manor. I know, yay!! The home I share with Mr Kitty, the mini art gallery of Canberra, the place where movie night and impromptu meetings of awesome autistic people happen and kids ask to visit. That place. Nice One Jeanette!

…However, like most good outcomes the story of my journey to Whimsy Manor is actually quite a difficult one. If we go back in time to 2000, I was a homeless recent ex-prisoner  living in crisis housing. I moved from one unpleasant place to another over the next six years. Wherever there was a spot I would go, with no choice in the matter whatsoever! In 2003, having been in receipt of the disability pension for almost 10 years, I moved into what was expected to be my final address. Housing for life – public housing, social housing whatever you call it. I was meant to be there to stay. The problem was that my ‘permanent’ home was awful. I didn’t have It was in a huge development of over 100 flats. The building itself was horrible. The fixtures didn’t always work and there was constant damp running down the walls. Almost everything I owned was ruined by it. There was a hopeless air to the place. And that was just the physical environment. My neighbours were divided into migrants – who worked hard and usually left after a few years – and the alcoholics. 

I am an extroverted social kind of person who befriended the alcoholics in order to have some company. In order to keep that company I needed to be drunk most of the time! One neighbour was a stalker and would glare at all my female visitors – including my mum! She had worked out the sound my toilet made flushing and would knock on my door five minutes after my first morning visit, knowing I was awake! As a reformed – and keen to stay that way –  criminal, I was constantly among petty crime and violence. I was desperate to leave. In order to do so I studied at university so I could hopefully find a graduate job, which was actually what happened. Yes, I had to answer a lot of additional questions about my dubious past and also my mental illness but it was all OK. I just might have been the happiest ex-tenant the flats have ever had!

I moved to Canberra in January 2007 to start my new graduate role. I shared a house. At first I loved this. I had not had a rental contract for a very long time and the house was very nice. I felt like what I thought of at the time as a ’real’ person!   There was just one housemate, a middle-aged woman who was very keen on vegetarianism and wine. The bullies and stalkers I had known were all poor and lacked social niceties so I thought middle class people who knew about all the wine regions in Australia and had cool designer jewellery must all be polite and lovely.  This was not a good assessment of my housing situation and friends advised me that my middle class housemate was something of a bully. I lacked assertiveness so felt afraid to tell my housemate that I wanted to move to a different property. I figured the only way I could move out without being judged and potentially argued at was if I bought my own home. Enter Whimsy Manor. 

It wasn’t called Whimsy Manor then. If anything it was called ‘the flat’ or ‘my compromise’. I hadn’t saved a big deposit and bought the most affordable home I could – a one bedroom flat in Canberra’s south which was built the year I was born. I didn’t like my home very much at all. As time went by things started going wrong. The flat upstairs had a leaking tap that dripped down my walls. Then I discovered my shower was leaking and had a nightmare experience with tradies making errors and blaming each other ands there being a big hole in my bathroom and no shower facilities for some time. I became extremely anxious, looking at every corner of my apartment and expecting something to be broken or leaking. The extreme anxiety – and my not being aware of the severity of it for a very long time – ushered in psychotic episode that essentially lasted two years. I accessed every mental health program there was in Canberra I think! I loved the residential ones because I could be away form the intense anxiety I felt being in my own home. Hom ownership seems dot have been a really bad choice., I cursed my inability to have difficult conversations with unpleasant housemates! 

I regretted buying my flat and wished that someone would turn up unexpectedly and give me $1million so I could buy a new house that wasn’t falling apart!

So what happened? In a word, a cat happened, the amazing and singular Mr Kitty. I was friends with a cat rescue person who kept pestering me to get a  cat. I made excuses but eventually gave in and said ‘bring me a cat.‘ She did one better than that and brought over four carriers of cats – three with cute fluffy kittens in them and one with a big grouchy adult cat. He came out of the carrier and I did something all my experience  as a cat person had told me not to do: I picked him up and held him close. He snuggled in, purred and I suppose the rest is Kitty-Jeanetteski history! 

Shortly after the advent of the furry persons I started to put up artworks and take an interest in the decor of my home. A while later and it had gained  a name – Whimsy manor – which stuck. My Dad particularly likes the name. That was in 2013. I am much more comfortable in my home now but I still get highly anxious when maintenance issues happen. Despite this it is now home and other people really love it too. I get photos form people who have similarly decorated homes and people often give me things to display.

I regretted buying my home for so many years. I used to genuinely want to sleep under my desk at work to avoid going home but now I am very happy here. Whimsy Manor has its own character and style. Ten years is by far the longest i have lived at one address in my life and certainly in my adult life. I am so grateful I got to buy it and that I didn’t lose it in that terrible time of being unwell and taking lots of leave from work. I love that my home and I have gone through dramas together but learned to love one another despite this, So happy tenth Whimsy-verasry I guess! And ‘purr’ of course.

I sometimes talk about my ‘Jeanette universe’. This is the world I want to live in. It often exists within my mind and also in physical space at my home, the wonderful Whimsy Manor. I want to share my world with you because it is an affirming place. This is also a bit activist-y, in my own rather gentle way, because my universe and the actual world are very different.

So, in my universe:

• There is no bullying or abuse. No sexual or family or other kinds of violence, no discrimination on the basis of any characteristic and no prejudice
• Autism isn’t ever seen as needing to be ‘cured’. In fact neurodiversity is the accepted way of being
• Nobody needs to ‘mask’ – people are valued for being their own unique them 
• People are respected for their skills and experience regardless of background, ability or any other characteristic 
• Buildings and transportation and are all accessible to people who need to use them 
• Nobody has to go through mental health crisis alone 
• Sparkly stuff, shiny things and bright colours are everywhere for those who love them 
• There are no poker machines
• Everyone has a stable home
• Assumptions and stereotypes do not exist. Everyone is seen as an individual
• Stimming is actively encouraged for those who want and need to stim 
• There is knowledge that sensory experience is not universal 
• Children are never dissuaded from following their passions 
• Technology is utilised to facilitate learning, engagement, communication and fun
• Verbal speech is but one of many accepted ways of communicating 
• People cosplay their favourite characters …. at work! 
• If people need to access health care services,  they are able to and those services are supportive, respectful and effective 
• Nobody is isolated our lonely (unless it is their choice to be) 
• Nobody feels they need to prove they are ‘right’ 
• Reality television has never existed 
• There is art, literature, poetry, music, dance and theatre everywhere and creativity is viewed as extremely important 
• The natural environment is valued and protected and people delight in nature 
• Difference and diversity – of gender, ability, culture, sexuality and every other thing – is seen as a big positive and embraced. In fact there is no real need for advocacy around diversity as genuine respect and inclusion are the norm
• There is no tokenism. Nobody is the ‘colour and light’ at a conference 
• There are no ‘therapies’ which use rewards and punishment to ‘train‘ kids to seem less autistic. In fact people wouldn’t even consider something like that as it makes no sense in this world
• There are free trampolines liberally dotted around public spaces 
• Everyone who needs one gets a pet or assistance  animal and rental properties are all dog and cat-friendly 
• Nobody judges children in supermarkets – or their parents either 
• Stories are viewed as being incredibly important
• There are no ‘Mr, Mrs, Ms, Miss’ titles. Everyone just has their name 
• There are few or no prisons. Behaviour outside of the social contract rarely occurs and when it does, it is treated at the root cause and not simply punished
• Candidates for jobs do not have to do an interview but instead get to demonstrate their prowess in a less pressured environment 
• People are motivated by kindness and the wish too make the world a better place 
• People’s skills and merits are validated without the need for competition with others. Awards are not necessary 
• People are proud to be their beautiful, amazing self
• And sorry, I cannot help this….the Dr Who universe is real! 🙂

My preferred world is obviously not going to be for everyone but I think if some of the more ‘serious’ things were happening then life would be considerably improved for those of us who belong to different diverse groups. Some of the points are doable and others are not. I would love for the actual world to be more like my internal world where all these things are true. 

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In my actual ‘Jeanette world’ – with Mr kItty at Whimsy Manor

I recently had a bad experience with an Uber (ride share company) driver. My mental health had been misbehaving so I was stressed and a bit confused and I was in a different city. The driver didn’t turn up. He called me and I told him where I was and then still didn’t turn up. Rather than cancelling the ride I just got in a nearby cab – it was all very stressful and I forgot the sequence of how this stuff is meant to work. Cue irate Uber driver no doubt giving me a very poor rating. I imagine that I am far form the first autistic person – or just stressed and slightly confused person – to fall afoul of the ratings system on Uber!

This experience got me to thinking about new technologies and autism more broadly.

I’ll start with the positives. In my own experience social media is mostly a very positive thing. I meet so many like-minded people and have made genuine friends all over the world. There are several autistic-run groups which I spend a lot of my time in and many members of my online family are good friends. I look forward to spending time in social media land. 

Almost all my advocacy work is done online –  my daily meme and blog posts and promoting events. I know that I am far form alone in this as many other autistic people have similar online experiences. And I must add that cat videos are the best de-stress tools ever short of actually cuddling Mr Kitty. So when somebody sends me a video of a cat doing something adorable and funny it makes me feel amazing. 

Short of connecting online with others, the technology currently available for writing and making art – and daily memes – is amazing.  I was using video software in the early 2000s and the difference is off the chart. This means people can get their message out without too much fuss and stress from the tech! 

Another plus of current technology is the amount of fandoms people can get involved in and the depth of information about the worlds of those fandoms – just look at Pottermore….and Harry Potter fanfic for that matter. If your passionate interest is Harry Potter – or many other fandoms – there is almost endless information out there. And I know how joyful it is engaging with passionate interests.

So that is a selection of lovely positive things. There are some things which are more problematic, including trolling and predatory behaviour. Some issues around tech can be contentious. Screen time and kids is definitely a contentious issue. I have spoken to many parents of autistic kids who swear by devices for a range of things. I have also met kids who have a bona fide screen addiction that is stopping them from going to school or even sleeping. 

People often think the screen time itself is the problem but I take  a different view. A device offers kids a lot of things – some good some potentially damaging. Screen time is immersive, immensely enjoyable and mostly predictable. The experience of using a device for gaming or design or other things tends it be something really enjoyable and not inherently damaging at all. Many kids are quite OK using the screen without it being an issue and others aren’t. Why? I think the key word in ‘screen addiction’ is the second word – ‘addiction.’ ‘

I used to be an alcoholic many years ago. I needed to have alcohol in the house and I couldn’t go for long without having a drink…and then many more. Alcohol was part of almost all my socialising. These days I often have one cider or one glass of wine with dinner. It is rare indeed for me to have more than two glasses in one day. I don’t mind if I have a night without any alcohol at all – or a week for that matter. So was the alcohol the problem the I was younger? No. 

The alcohol was the vehicle for the problem. Addiction is something which people who are having a tough time use to get through it. It is not a very helpful way of addressing the issue but – while the addict has their substance of choice – be that drugs, wine or an iPad  – the ‘hole’ which results in addiction is temporarily filled. The problem with addiction is as much the reason the person has an addiction as the ‘substance’ involved. This is why not everyone who drinks wine has an issue with it and why not every kid who picks up a device has an issue with it either. Screen addition – like other addictions – can be in response to things which have nothing to do with Minecraft of Fortnite. Addressing addiction in my experience needs to be as much about addressing  the causes – the need for whatever substance – as the addictive behaviour. Happy, well-adjusted people do not generally become addicts. 

I do struggle a bit when people assume something new or recent is bad seemingly simply because it exists. When I was a kid in the early 1980s people were complaining about the damage videos were doing on young people! Technology can be met with mistrust by some but I don’t see it like that. I think for autistic people technologies can be liberating and extremely positive and open up new worlds. However, as there is potential for kids and young people to fill the ‘hole’ in their life (if they have one) with excessive screen time, I think it definitely needs to be closely monitored by parents. As I imagine most people know, there are also predators and trolls in the online universe who can take advantage of autistic people – kids and adults – so care is required. Cyber-safety and self-protection online are important things for everyone to be aware of.

I will finish with a story. I love a good story! I was visiting a friend who has three young autistic kids. The littlest one came and sat next to me and asked me if I wanted to see the cats he had designed on Minecraft. I said yes – how wonderful! I hadn’t really seen anyone using Minecraft in real time before, only the end results. This very small child sat there and designed from nothing in 3D space these incredible cats. Each one took him about three minutes to construct. The command of the technology was exceptional and I could see all sorts of transferable uses for the skills he was demonstrating. This kid actually changed my view that something I had rarely heard described positively by adults – Minecraft – could be such an educative thing. I guess another case of ‘don’t assume – ask!’

There were a number of areas where autistic people interpret or experience  things differently to neurotypical people and where we often get told we are doing something ‘wrong’. Our lack of proficiency at something like non-verbal communication indicates to some that we are in need of some sort of ‘fix.’ I would suggest that no ‘fixing’ is required, just more understanding of and respect for the validity of different perspectives.

This post examines four areas where this issue occurs. These are sensory sensitivities, eye contact, body language and facial expressions and unwritten rules. 

Sensory sensitivities

Autistic people often have something called sensory processing disorder. While this is not exclusive to autistic people, it is very common for us. Sensory processing disorder means our senses are significantly heightened. Things can be too loud, too glare-y, too smelly and so forth. The impacts can be extreme. Earlier this year I had breakfast why some community leadership folks and someone ordered an omelette with black truffles. I really don’t like eating  mushrooms or fungus. The smell fo the truffle was so overwhelming and horrific that I had to move several tables down until the offending stinks things were consumed! Sensory issues have resulted in people selling their home or leaving their job.

There its an additional issue with sensory issues: many people are unaware they exist which makes it hard to get any accommodations or understanding. Your senses are your reality, your truth,. People understand the world through their senses. So when someone comes along and says their senses are extreme and unpleasant, this can get ignored or misunderstood. This can lead to someone and their sensory experiences being dismissed.

What is the solution? Well I think this one involves people who do not experience sensory issues understanding that others might experience in this area and adjusting their response accordingly., It requires a shift in thinning too understand sensory input can be different for each person.

Eye contact

Autistic people generally don’t willingly make eye contact. For many of us eye contact is extremely invasive and unpleasant. Some people feel physical pain when making eye contact. 

In many societies eye contact is seen as essential to good communication. This can result in autistic people being forced to make eye contact so as to supposedly ‘improve’ our communication. This is cruel and coercive. In fact eye contact isn’t the universal pinnacle of communication anyway. In some societies it is considered disrespectful to make eye contact but try telling that to some ABA* therapist harassing children to do something which goes against everything they know and causes them distress and pain.

The other issue with forcing eye contact is that it simply doesn’t ‘work’ in terms of building effective communication. I tend to looking the general vicinity of someone forehead, simply because eat is easier than having people assume I’m being somehow rude because I’m not looking at them. Very occasionally I accidentally stray into looking in their eyes. It is like they can see into my soul and I can see into their soul – not pleasant! And actually not very useful in terms of communication. If I make eye contact my entire attention will be filled with the unpleasant sensation and I won’t be able to take in what is bing communicated.

Eye contact is an area where neurotypical experience is privileged a lot of  the time. Autistics are seen to be ‘doing it wrong’. Rather than assuming we need to do eye contact to communicate it would be much better if autistic experience was understood and respected and people learned that for some of us, not looking does not equal not listening and that this is OK.

Facial expressions and body language 

Autistic people often struggle to understand facial expressions and body language and also things like tone of voice. This does not apply to all of us but it is very common. This is another area where many neurotypical people often seem to assume that everyone understands these things. This means when we miss something – such as someone being sad – that we are viewed as thoughtless and callous. I understand that this may be something which feeds into the myth that autistic people lack empathy.

The meaning of facial expressions and body language can be learned but it is a tricky thing. For example I understand facial expressions in films that I have watched many times over but this doesn’t translate into conversations because it happens too quickly and most people don’t like me staring at them as if they were a movie! 

Once again, some ‘therapies’ teach this to autistic children-  or at least they try to. I was in a conversation with a former ABA therapist (and yes, it was a very interesting conversation!) who told me how they would ‘teach’ autistic kids facial expressions using emojis but for some reason it wasn’t effective! I explained that the reason not wasn’t effective was probably related to the fact that a cartoon or emoji is very different form an actual human face. Despite that, many autistics don’t really understand emojis. I am one of those people. The five or so emojis that Facebook has for responding  to posts are OK and i get the vomit one and the laughing one but aside for that I have no idea what they are meant to represent! Once again this misconception that autistic children can be ‘taught these things using strategies that might be effective for neurotypical children but which demonstrate a total lack of understanding of autistic experience is just not right. These attitudes also feed right into the idea that autistic people are broken, in need of ‘fixing’. unreachable and remote. 

Unwritten rules

In the world there are a bunch of unwritten rules, Neurotypical people often understand these instinctively. I always think it is a magic trick because it is completely  alien to me. I know that there are unwritten rules and I can learn most of them once I know they exist but the amount of social faux pas I have had related too misunderstanding unwritten rules is large! People who instinctively ‘get’ unwritten rules often fail to even realise that their ARE these rules. Even  if they do they may not realise that autistic people find them baffling. It is like the sensory issues – people tend to believe that their experience is correct and others’ experiments are either a deviation from correct of that they simply don’t exist.

Conclusion  

All of these considerations and issues seem to come down to a few things which need to happen.

• Understanding and knowledge of autism and autistic experience
• Respecting difference an knowing that some people have a different experience
• Not privileging neurotypical experience as the ‘right way’ of doing things
• Listening to autistic people.

If this happened I think these issues probably wouldn’t be an issue. #DifferentNotLess

*ABA (Applied Behaviour Analysis) is a ‘therapy’ for autistic children which focusses on rewards and punishments and has a strong focus on conditioning autistic kids to appear less autistic. ABA is implicated in post-traumatic stress disorder and goes against everything that myself and fellow autistic advocates work towards.

Like a great many people in the world – including a lot of autistic people – I have a mental illness diagnosis. In my case I have an atypical sort of schizophrenia / psychotic disorder which I have been treated for since 1995. I take daily medication and on several occasions I have been very unwell. People who see me now tend to comment on how I am very self-aware and insightful and I am very clearly in charge of my mental health and wellbeing but this was not always the case. These days I can converse with the crisis team or my psychiatrist and articulate my needs to them. However, in the past I was institutionalised and the largely at the mercy of my illness. 

While most of my advocacy is focussed on autism, a lot of my experience is tempered by my constant negotiation with my errant brain. Everything I do is viewed through the lens of ‘will I be able to keep my commitments or will I be too unwell?’ Between 2010 and 2013 I was extremely unwell and took nine months off work and and had eight hospital admissions. I was sustained by my wish to keep my job and my home. I managed to do this through a combination of the support of my managers at work and the health case managers from HR as well as the support of my parents and some great friends and my own determination. But while my struggle is internal a lot of the time there is another struggle: that of the way the world and many of the people in it view mental illness.

How many times have you heard someone – or yourself – use the term ‘insane’ or ‘crazy’ or ’mental’ to describe something bad? I know I do it quite frequently. It is ingrained and it is everywhere, yet few people notice it, even less complain that it harmful or discriminatory.  How many times is medical terminology such as ‘psychotic’ used incorrectly and out of context? Semantics might seem a bit nit-picky but in fact that is far from the case. The term ‘psychotic’ relates to a state of psychosis which is where a person believes unusual, irrational  ideas and can experience additional bits of reality – like hallucinations such as voices. However, when people say ‘psychotic’ in the media the word is almost always used to mean psychopathic or violent which are in fact totally different things. So why does this matter? Well imagine you are me with my psychotic illness and you have started in a new team at work. You don’t know your manager or colleagues well and then you notice your world getting more frightening and confusing. You try to manage it but eventually you need to take time off. So what will you say to your manager about your absence? How do you frame the nature of your illness – if you feel strong enough to tell them about it at all? I have had this dilemma many times and it is really hard working out how to explain even that one thing of the meaning or psychosis. Now while I have got you imagining things, then imagine that you are not extroverted, confident Jeanette who has been talking about autism and mental health to audiences since 2005 but that you are young and shy and self conscious and have just been diagnosed with a serious mental illness. What are you gong to tell your boss about your absence? I know quite a lot of people who just simply leave jobs rather than have that conversation, and given the stigma surrounding mental illness, that is hardly surprising.

That is one tiny fraction of what life can be like. Some other major challenges are assumptions that people with mental illness cannot work or do other activities. On of the biggest issues seems to be a public hospital system that most people I have spoken to who have been involved in – including me – have found quite unsupportive and institutional. They recount being either infantilised or demonised  a lot of the time. In fact in my own experience most of the terrible invalidation and abuse I have experienced has happened in hospitals and other settings which were supposed to be therapeutic. And autistic people with mental illness very often experience a range of other discrimination, stigma and ableism on top of the stigma in response to mental illness. Just talk to pretty much any autistic person who has been in the public psychiatric ward or who has tried to convince a doctor who misdiagnoses them that they are in fact autistic.

Mental illness is still in the closet a lot of the time and this really needs to change.

I was part of a comedy night for mental health week a few years ago. It was a great thing with some actual comedians and then me! At the end, one of the audience members came up to talk to me. She told me she was a nurse in the psych ward I was in on and off between 2010-2013. She told me how wonderful it had been having me in the hospital because I talked about rights and empowerment. She told me she hadn’t been aware of that before she met me. This person had been a nurse for 25 years! At that point I realised that there needs to be a much deeper discourse on the rights and needs of  people with mental illness. Why can’t we have pride for people with mental illness too? I think I’m up for that. Mental illness is really nothing at all to be ashamed of. If anything, I am proud at how I manage my illness and have learned so much about living well and how I share my thoughts and insights with others to help them. Surely this is something worthy of some pride? I guess that is why I talk about mental health and will continue to do so. We need change in this space.

 

And this isn’t meant to be a shameless authorial book plug, more something people might find helpful that I just happened to coauthor!  It is by me and Dr Emma Goodall, Dr Jane Nugent and I wrote this book called  The Guide to Good Mental Health on the Autism Spectrum