The story of Whimsy Manor – and a little bit before

I know it is coming up to new year so bloggers people are probably writing posts reflecting on the year gone by but I’ve already done one of those so I thought it would be nice to talk about a topic dear to my heart: the story of my amazing home, the small, arty and Mr Kitty-filled place that is my lovely Whimsy Manor.

I’m going to need to go back in time a few decades to when I was a teenager living rather reluctantly with my parents. My parents owned their home with a mortgage. As a child I had always felt very secure about home. I never worried we would be forced to move out. It was a great secure basis from which to start – security and confidence are a nice starting point to life

I moved out of home at 17 and went into shared accommodation. I needed to get a job to pay rent, food and bills and somehow managed to find work in the middle of a recession at the age of seventeen and with no work experience at all. I struggled with share houses and the expectations of housemates so moved into a different share house every few months. Somewhere in this I got involved with dangerous people, spent time in prison, became homeless and then lived in supported accommodation for people with mental illness and then public housing. I was poor and living on benefits and doing a few odd jobs. My least favourite bit of poverty was the fact that I had no choice over where I lived and everywhere I lived was because there was a vacancy. Every one of these places was horrible. Neighbours tended to be drug addicts and alcoholics and I had a stalker for over four years who lived upstairs. I couldn’t escape from her because I couldn’t afford to pay for private rental. At that point I was on a very deliberate trajectory to escape poverty, which I did in February 2007, moving to Canberra to start work in the Australian Public Service.

My sense of freedom and accomplishment on moving to Canberra was huge. I moved into a shared house. It was easily the nicest house I had ever lived in with decks from an back, a green and police wood floors. My housemate was a woman who I soon learned was quite controlling and disrespectful to me. I was amazed that middle class people could be awful too! I saved a tiny deposit and went house hunting, hoping to escape form my paternalistic housemate and  her hostile quirks. Because I did not have a huge income and house prices were high I was quite limited in what home I could buy. This was compounded by the fact I don’t drive so needed to be on a good bus route in order to get to my workplace in the city. I looked at about four properties and made a offer on an apartment which was built the same month I was born. As affordable, older apartments go it was good, with a nice hallway and big balcony but the who process of buying property was a big stress and I felt strongly that my home was a compromise.

After not very long I started to feel that my apartment was the enemy as there were plumbing and other issues which were expensive and I and I didn’t have much money. My apartment had stared its life as public housing too. I felt I was working full-time with a good wage in order to live in the same kind of place I had very unhappily inhabited not that long ago.

The plumbing issues culminated in the shower leaking and needing to be replaced about one year after I moved in. The tiler and the plumber I used both made significant mistakes and blamed one another. I was highly stressed, especially when I had no shower at all – just a hole in the bathroom wall – for a week. The show did get fixed eventually but unfortunately the extreme level of anxiety I had been in for months  combined with anxiety about housing security from years of poverty and others deciding where I live turned into a very unpleasant psychosis which threatened my job and my life and was terrifying. I thought there were ghosts in my home and that this was causing my illness.  I couldn’t imagine ever making peace with my home. However, somebody came along who changed that and quite quickly. His name is Mr Kitty and I think he is the soul of my home.

Before I got the little cat who bit my toes and ran around in full cat crazy mode at 3 am, the little feline person who purred and cuddled and was waiting for me when I came home from work, before then my home was cold and lonely. I actually wanted to sleep under my desk at work but within days of my little back shadow kitty arriving then I started go  look forward to going home – Mr Kitty was there after all!

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A few weeks afterMr Kitty came and changed everything I started to wonder if my home needed more art. I did some paintings in watercolour directly onto the walls – little flowers and plants mostly. After that I started putting some of my many artworks on the walls and then finding spots for little sculptures and pots and things. The art-ing up of my home had begun. Each week I counted all the artworks. I started not feeling stressed while at home. Within months I started called my home Whimsy Manor, My dad said it was a wonderful name and it made me smile eery time I said it.

That was about five years ago. Now Whimsy Manor and Mr Kitty have a following and I am finally happy at my home. I sit and look at the artworks and things and think how fortunate I am to have this slice of heaven which is my home. Mr Kitty is at the heart of this and always has been. I love to invite people back to Whimsy Manor quite frequently and they say usually yes. Whimsy Manor has a warm feeling about it. I love to share my home with friends. I recently had a news item about my work in the autism community featured on local Canberra TV and I suggested they film here. So there is this beautiful news segment featuring me and my lovely Whimsy Manor.

My apartment has gone from being a source of anxiety and extreme misery to being my home and my favourite place to be. I often reflect on how good I have things at the moment and how I have gone form being in desperate situations and being powerless and poor to having my own very small and humble and most excellent castle.

…And there are 466 artworks, cards, sculptures, photos and objects in display at Whimsy Manor – I just counted. My finger is sore 🙂

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Getting to know yourself – Interoception and autism 

Yesterday I had an epiphany. I seem to have quite a few epiphanies lately and it was Christmas I suppose.… Epiphanies are nice because I can share them with people. The epiphany I had was I understood what being tired felt like and so I went to bed because I felt tired. In the past I would have worked myself to the point of collapse and then realised I was tired. The skill or ability needed in this case is one called interoception. It means being aware of the sensations in your body – hot or cold, hunger or satiety, illness and pain and the need to use the toilet. Autistic people are very frequently unaware of those sensations in the body.

Being aware of interoception is a very useful life skill. Many autistic people do not know if it is hot or cold out or wether they feel hot or cold. This can be very unpleasant. In my case ion one occasion this meant I wore abut four warm layers to a music festival in the middle of summer when I was a teen and probably only just escaped heatstroke!

Many autistic people are not aware of sensations like needing to go to the toilet util it is very urgent indeed! This is most likely a strong contributor to autistic children finding  potty training difficult and having ‘accidents’ even when they know about using the toilet. It can cause behavioural issues. Can you imagine sitting in a  classroom feeling very hot or very cold or being really hungry or unpin or needing the tiles ad then having t concentrate on school work at the same time? Add into the mix a rude comment from a fellow student, sensory issues or a taunt from a bully and you can understand why some autistic kids behave aggressively to others or self-harm.

I remember when I was a child no knowing what the sensation was prior to vomiting. I simply couldn’t figure it out util I was much older. Even then I confused it with the physical feeling for anxiety. My parents’ car was testament to the issue (sorry Dad!!).

I can forget to eat or drink. I never feel like I am hungry, even after not eating al day and I forget to drink water because I don’t really feel thirsty. When I do eat and drink I feel absolutely fantastic because presumably I have been hungry and dehydrated without knowing it!

Another issue for autistic people is the physical sensation of pain. For some people – like me – I have a very poor awareness of when I’m in pain. My parents say that when I was a kid I would never complain that something hurt or I felt well and if I did it was a sign that something was really wrong. Even now I find it hard to pinpoint when I am in pain. A few years ago I had a staph infection which was actually quite serious but it took me several weeks to realise anything was wrong. Imagine if you do not feel pain but have a serious injury. A friend encourages you to see the doctor and the doctor has no idea how serious the injury or illness because you don’t seem too bothered about it. Or the converse of that: your pain threshold is very low and the tiniest thing causes pain. People in this situation are often ignored when they express pain which in some instances may actually be a sign of something serious  and they are seen as apparently  ‘crying wolf’. These are both potentially various dangerous situation for the autistic person resulting i them not getting the medical help they need. Making doctors more are of interoception issues  is a very good idea.

Autistic people can be completely unaware that any of these bodily sensation are happening but interoception s a skill which can be taught, My friend, colleague and coauthor Dr Emma Goodall, who is herself autistic and is a professional in the field of pedagogy and autism, has written this excellent resource on understanding, building and supporting interoception in autistic children. http://web.seru.sa.edu.au/pdfs/Introception.pdf  It is a creative commons document so please share it around if you wish!

With Emma’s work and the work of others we are seeing the difference that an understanding of interoception is having on autistic people.

For people who are good at interoception these sorts of difficulties are probably hard to imagine. As always, we tend to see others through the lens of our own experience, but an awareness of interception and the difficulties autistic people can have with it is really important for parents of autistic kids and educators and clinicians  who work with them and obviously autistic people ourselves.

I am very proud of myself for figuring out the tiredness thing yesterday. I imagine it will have a big impact on my mental health and wellbeing. It would have been nice if someone had helped me to be aware of these sorts of things when I was a kid. Of course we can’t go back in time but hopefully a growing understanding of autism and interoception will support autistic kids and young people and help them reach their potential.

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Me feeling the sensation of purr. That one I am aware of

2017

Here is my usual reflective end of the year blog post. I’m going to start by sharing some of the things I learned this year:

  • How to spot a narcissist and to trust in your gut feelings about them more than the spin they, well spin!
  • That misery and happiness are both all-encompassing when they are happening but are also both quite fleeting
  • Other people’s view of me is often vastly different to my own view of me. It is fun discovering their views – unless they hate me, then less so!
  • If you are scared every time you see a message from somebody then chances are that person is not a friend and is probably a toxic person in your life.
  • As long as they don’t tell me about it, I honestly don’t care what negative things people think about me. I dislike some people so it makes sense that other people should have the right to dislike me.
  • I can manage my mental health so that serious illness symptoms don’t destroy me like they used to. In fact the best strategy is not to think about the implications of the symptoms. I used to think ‘oh no! I have auditory hallucinations and I think I’m dead and in purgatory. This means I am really unwell and I don’t know what to do.’ Now I think ‘Interesting, hallucinations. Hello there ghosts. So what do I need to prioritise at work right now?’
  • I think I may be the most awarded ex-prisoner in the world. If I had ay time to look into this it would be an interesting project but ‘meh! meaningful stuff to do instead!’
  • And I finally I learned I am driven almost exclusively by positive things, which makes me very happy.

2017 has been the year of me becoming very well-known in the autism and Canberra communities and actually realising it. I’m not very comfortable with having a profile and up until this year have ignored it in the vain hope it would go away. I won some nice awards this year….and nominated a bunch of people for awards, some of which they won so yay to that.

My confidence has grown this year, I still doubt myself but that doubting voice is quieter.

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I have bought a load of quirky things to wear and a lot of my friends now give me black cat-themed items for my home, the awesome Whimsy Manor.

Of course Mr Kitty is still in charge here. Love the little fella. We found each other almost five year ago and we just get closer and closer. Friends tell me they are coming to visit Jeanette and Mr Kitty because he is as much an inhabitant of the house as I am. One friend said even if she lives to ninety years old she will remember Mr Kitty. He is one popular furry person. This year he got his own Facebook page so he is very famous! Of everything I have in my life at the moment he is by far and away the most important thing of them all.

My various careers have all done their thing quite impressively this year. I moved to the HR area at my workplace on March this year and still really enjoy working there. This year was my tenth year as a public servant so I got very lovely kong service leave and I feel like I must be a grown-up  to have gone over ten years in the corporate world. My autism world work has been incredible.

As my profile has grown so has the range of things I get asked to do. I think – if my spreadsheet is right – I gave 42 presentations this year. I kept finding myself in airports and wondering where I was!! I visited Sydney, Perth, Bendigo, Ballarat, Adelaide and went to Melbourne about 15 times I think!  I joined the community council of a major project on autism and health outcomes in the USA, participated in the Autism CRC Research Academy with some amazing people, wrote two books – one already published and the other in production and both with the very awesome Dr Emma Goodall. I wrote countless blogs, several articles for Spectrum Women and other websites, created and posted around 350 memes, was on radio and TV and became a guest presenter on the Talking Disability program on local Canberra talkback station 2CC! Wow!!  I also made artworks and recorded and aired several episodes of my internet radio show, I mentored a number of autistic young women, facilitated the Canberra Autism Women’s Group and held a large number of movie nights at Whimsy Manor. I gave support and advice where requested and kept up some amazing friendships and met some new friends.

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Basically quite an amazing year. I’m looking forward to 2018 and whatever it may bring.

Parting thoughts?’

Be your wonderful unique you. Thank you for reading my blog posts and let’s do this thing: let’s make a difference, change the world and leave things better than when we found them.

Mr Kitty says purr and where is the tuna?’

Look forward to catching up wiht you in the new year.

🙂 JP

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Why I am celebrating Christmas at Whimsy Manor with Mr Kitty this year – and I’m not a grinch!

This Christmas I will be doing something I have never done: I will be spending the day alone, except for Mr kItty of course! Even the five Christmases I spent in prison were spent in the company of others (for further info and context see chapters six and eight of my autobiography ‘Finding a Different Kind of Normal if you haven’t already). My practical reason for not being with the other Purkises in the festive season is that I left it too late to book cat boarding but I also did that last year and the year before but I made sure I spent the day with a friend and their family for Christmas. There is almost a stigma about spending the holidays by oneself and I think my need to be included every previous year was based in a fear of people – and me – thinking I was sad and lonely. This has certainly kept me from going it alone in the past – worrying it would mean I was socially isolated and in need of some kind of social charity.

This year I timed cat boarding wrong again and could not take the time to visit family interstate but for once I felt no need to invite myself to a friend’s house. In actual fact I don’t care a lot about Christmas itself. It can be such an exclusionary event, for the very reasons I am discussing here. People can feel isolated if they do not have time with family, and socio-economic disadvantage is thrown into sharp relief with all the costs of the season and people feeling scared of being seen to be poor. Poverty is never a reason for shame but that doesn’t seem to be widely known. Families with autistic kids and adults can feel excluded by extended family members sometimes and may miss out on an invite, not only main Christmas unpleasant but often leading to rifts in families. If you come from a culture other than the Western Christian one there is often an expectation that you participate in festivities which may not be something you want to do. Christmas seems to be a big and often unhelpful expectation which many people feel the need to celebrate in order to avoid the judgement of others.

I know there are people (including adults) who really do love Christmas and find it a genuinely pleasurable festival but I also know many people who do not.

So this year I am making a very gentle stand and spending the day in the beautiful company of Mr Kitty. I will write and make art and reflect on the past year.  I am in a period of significant change and transition at the moment across a number of areas of my life so I think a bit of reflection will be nice. I have bought gifts for a few people because I like to give gifts but apart from that I will be having the day to myself, which when I think about it seems a very good thing to do if I am observing a festival which at its heart is about how hope and joy can come into the world and change everything. I don’t need a big lunch or bubbly alcohol or boxes full of gifts or more human company than I can manage. I am having a merry contemplative Christmas.

As I write this I realise what a liberating experience this could be for me. I am someone who spent almost all my teenage and early adult years desperate to be accepted by other people and to belong. I was a social chameleon so adept that I believed the very damaging role I was acting in my early twenties. I remember when I lived in public housing in the early 2000s. One of the neighbours would lock his door to visitors at Christmas and drink huge qualities of alcohol by himself whilst playing loud music (not carols!). I have always seen spending the holiday alone is a sad thing which nobody would choose. The choice I am taking this year seems incredible when set against the backdrop of my strong drive to be socially accepted when I was younger.  I don’t know what it will be like on Monday. I may be sad and feel isolated but I don’t think I will. If I were a TV network executive I would probably make a tacky reality show about ‘The woman who chose to be alone on Christmas’. Thankfully that isn’t the case but I do hope this piece might give support to others who feel similarly to me.

And I should say that I do not dislike any of my family members and neither am I estranged from them. I love them all very much and have sent them all gifts and cards and love but sometimes I need to have some ‘Jeanette time’. I’ll let you know how I go. Merry Christmas and Happy Holidays and purrs from Mr Kitty.   Autiscti kids sometimes

My place of safety – a base for overcoming adversity 

Emma Goodall and I just had a book published to support parents to help build resilience in their autistic kids. One of the key concepts we articulated in the book as an essential part of building resilience is that of a ‘Place of safety’

Building resilience needs to start from a solid base. A child needs to have a place they can go to – physically or through their imagination and memory – where they feel safe, supported and have some sense of control and agency. Parents can help create this kind of environment for their child and ideally, beyond that friends and relatives and the child’s school. Self-confidence and, through it resilience, often begins when the child has their own ‘place of safety’. Most people are more confident when surrounded by people who believe in them and when they have a positive sense of self and a belief in themselves as capable people. These things are a ‘place of safety’. E Goodall and J Purkis Parents’ Practical Guide to their children aged 2-10 on the autism spectrum

This is not just for autistic kids – everyone needs this space of being validated and respected as they start their life’s journey.

One of the great things about a place of safety is that it enables the young person to build their self-esteem and self-worth. It helps them to understand that they are someone who is loved and cared for. This can give them support and protection as they travel through life.

A place of safety is sometimes with people other than family members as some families are toxic. this can more more difficult to establish given society;s expectations that family is always  supportive na deposition place. I have et so many people who desperately wanted their family to be a place of safety but it wasn’t.

I want to talk about my own place of safety.

I was born in the 1970s – a very different world to now. There was no Asperger’s diagnosis, the focus was on disciplining ‘naughty’ children and the word ‘parent’ was only ever used as a noun and never a verb.

I have a family who I think it is reasonable to say are fairly quirky and neurodivergent. Home was  a supportive and happy place but there was clearly a mismatch between  parenting wisdom at the time and what was needed to support my development. From what I am told there was always someone quick to judge my parents – and especially my mum –  for ‘doing it wrong.’ However my perception was that family life was positive and supportive and validating – definitely a place of safety.

For me, the place of safety was tested and challenged relentlessly, mostly by school bullies. One of the beautiful aspects of a place of safety is that it validated\s the young person. Validation means that you are treated in a way to suggest you have value as a human being and have the right to be yourself. There is an opposite to this – invalidation. Invalidation is where a person is treated as if they don’t matter. They are treated like they are unimportant. Invalidation can take many forms – violence and abuse and for autistic kids and young people it often is delivered via the school bully or bullies. Bullying is clearly a form of invalidation.

In my childhood and teen years, all the good work of my family and the place of safety it had given was stripped away by years of bullying and violence. My confidence and self-worth had all but disappeared by the end of year 12. I was so invalidated that I wanted and actively sought out negative experiences – the company of dangerous people and criminals and all that entailed.

This resulted in a place where there waa s no safety at all – psychological or physical. I was the most vulnerable of people. I continuously sabotaged my life and deliberately made really poor choices. The pace of safety seemed to be a lost thing. but something was going on which I was unaware of but which helped me to change my life. My family simply never left, never disowned m or distanced themselves from me. Whatever terrible things I did they would still be there, filed wiht love. I was the most wretched human being who everyone expected to die – a prisoner, a drug addict, untreated mental illness persuading me to do destructive things. But every month my parents were there to visit, buying me a packet of cigarettes despite them being health conscious, putting money into my account which meant I had a radio in my cell to keep my sane as weeks turned into months and years. My grandma in England wrote me a letter each week and  always responded. I have a box of her letters in my bedroom waiting for me to be in the right place to read them.

Through their staying in touch and engagement my family were reintroducing the place of safety into my life. I didn’t really notice it at the time but what it did was keep me connected with a positive and kind world. In 2000 when I changed my attitude and with it changed my life  I was not alone. So many people I knew at that time lost their connection to family and friends but I didn’t for which I am very grateful.

Over the 18 or so years since me deciding to change my life, the place of safety has not been forgotten. If anything it has grown. My place of safety is a vibrant and changing thing and it is a great thing to cultivate. My place of safety includes family members and friends and even outputs like my TEDx talk.  The place of safety is a great thing to give children to help them on their path through life. It does help with the acquisition resilience and self worth. And it is something which a person can carry with them through their life. You can make conscious choices about who and what you want in your pace of safety. It can provide a great buffer against  invalidation.

The place of safety can be applied at different times in life. As the story I told demonstrates, the place of safety can be reintroduced later in life. I can be continuous or  it can be something in childhood which doesn’t carry on into later life. I know for me it is a really useful way of thinking about how I overcame adversity and built the life I have now, which is rewarding and meaningful  – most of the time at least!

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Anxiety: Some thoughts and strategies

‘Oh so i’s just anxiety?’ I have heard these words before and they always confuse me. There is no ‘just’ about anxiety. Anxiety is an experience which I think is common to the vast majority of autistic people and it is not always well understood.

I have generalised anxiety – which means I am stressed a lot of the time and it can be about anything and sometimes I can’t pinpoint a cause at all. In fact for me the event causing the anxiety is usually less distressing than the anxiety itself. My brain has an annoying quirk that if I am anxious for long enough the anxiety chemical in my brain turns into psychosis chemicals. So if someone dismisses my experience of anxiety I get quite upset because for me a psychotic episode could do a range of unpleasant things form me being terrified for years to not being able to do my work.

The reason I am writing about anxiety is to share some strategies which help me to address it. Different anxiety and mental health strategies are of value to different individuals and not everything works for everyone. I always see the task at hand as being to discover some strategies which work well for you and go with those. There are some strategies which tend to work better for autistic people. These strategies work well for me and hopefully they will give you some ideas if you don’t already use them.

Strategies:

  • Seek help. This could be a family member or friend or a psychologist or counsellor or other health professional.  As many autistics have alexithymia or emotion blindness and struggle to be aware of their emotions, having someone who can see you from the outside can be very helpful, not only in giving assistance to work through the anxiety but also by being able to alert you to the fact that you have anxiety in the first place.
  • If the anxiety is about a specific situation or change then learn as much as you can about the situation. Autistic people tend to benefit from a ‘road map’ for new things. The road map means learning as much as you can about the situation. Each event which is ‘ticked off’ the list of new things can lessen anxiety.
  • Meditation / mindfulness. Some people find tis incredibly helpful and others find it infuriating, The idea of mindfulness is to see your mood or anxiety as transitory and know that it will change. The idea of mindfulness is around ‘being in the moment’. The ethos of this is basically don’t dwell on the past or worry about the future but instead focus on what you can do in the here and now. This can be a great way to address anxiety. There are mindfulness exercises and many resources on this kid of thinking and approach.
  • Stimming / positive sensory expertness. I have a number of sensory things I use when I am anxious. I have a fibre optic lamp that I take to bed with me if am anxious and play with. I have fidgets for when I’m out in the world. I find these really helpful. Also physical movement like rocking is a great strategy for de-stressing.
  • Pets. Mr Kitty is the best mental health strategy I have. Cuddling him makes almost every worry go away, at least while I am cuddling him. I know I am not alone here and that may other autistics – and neurotypicals – benefit from cuddle  time with their non-human friends. Before I got Mr kItty I was vey anxious and unwell with psychosis and depression too. Within weeks of adopting his furry little self my life changed for the better thanks to the addition of my little black shadow. Pets are awesome!
  • Distraction. This one is a skill from dialectical  behaviour therapy. It basically involves focusing on something other than your anxiety. While you are focussed on the thing you are doing it is harder for anxiety to get a hold on you. You may need keep practicing distraction repeatedly although sometimes the first time you do it will banish the negative feelings. Find distractions that work well for you and that you enjoy doing,
  • A very, very simple but effective strategy is deep breathing. If you mostly experience anxiety as a physical experience then strategies which work on the physical manifestations of anxiety – like deep breathing – are likely to help. There are different deep breathing techniques. The one I use is to consciously stop thinking, then breathe in deeply and hold it for a few seconds and the breath out. You can do this as often as you like.
  • Being aware of your anxiety, out it in perspective and understand you are in control. This is a difficult one to master and may need some practice. It probably warrants an example. In 2013 I was about to give  a talk for TEDx Canberra. I was terrified. I had never been so anxious about a talk. I thought I would get on stage and to know what to say. I was going to ruin the TEDx brand and disgrace myself to a roomful of hundreds of people! The day before the TEDx conference we had a rehearsal in the venue. I was even scared at that and then I had a wonderful moment of clarity, I realised that I was in control of what I did and said. I had prepared myself and practiced my talk and I know what I was saying. I will still anxious but that sense of agency carried me through. I was the boss. If I choose not to let the anxiety win, then that would be what happened. And the talk? It went well. It remains one of he best talks I have done to date. If you look closely at the video I’m sweating but what I said was clear and helpful and my delivery was good.  Here’s a link if you want to see me being anxious but in control. https://www.youtube.com/watch?v=pqdGb4TraFk&t=7s

Anxiety is something which so many of us experience. When people invalidate our experience of anxiety if can add to the problem. Telling people to ‘stop overthinking it’ and similar statements can leave us doubting ourselves and feeling we shouldn’t discuss our anxiety. In fact anxiety is something it is important to talk about. It is not a weakness. Anxiety is something to learn to manage and people who experience it need support not blame. For autistic people being told you are worrying about nothing is incredibly unhelpful. Autistic people need to feel supported to discuss and seek help for their anxiety and other mental health issues.

And finally a shameless book plug….Dr Emma Goodall, Dr Jane Nugent and I wrote a book on autism and mental health which has more detailed information on the ideas in this post.https://www.jkp.com/aus/the-guide-to-good-mental-health-on-the-autism-spectrum-34026.html

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My most effective anxiety strategy, Mr Ronnie Kitty Purkis

Un-therapeutic therapy – Why forcing eye contact does more harm than good 

This morning  I was reading an excellent blog post by a friend about picking the best therapist for your autistic child (link: https://sidautism.blogspot.com.au)

The post has a list of positive qualities in therapists and also a list of negative ones. This is important for a number of reasons. Some therapies for autistic kids are decidedly unhelpful and very likely to do more harm than good.

One of the contentious areas when speaking about therapies and autism is the sort of therapies which aim to make autistic kids seem somehow ‘less autistic’. The premise of this seems to be something like their life will be easy if they aren’t noticeably different.

Sadly this is an approach which can leave autistic kids feeling invalidated and doubting everything they do. Some experience trauma from these kinds of therapies into adult life. Autism is integral to autistic people’s identity, experience and understanding. It is not a separate bit of the person which can be removed or otherwise ‘fixed.’  And you definitely can’t ‘fix’ autism through teaching autistic people not to stim or to make eye contact. The reason for this is that autistic people’s stimming and not making eye contact are there for a reason. Eye contact is generally very unpleasant and stimming is a vital part of managing stress, social situations and helping autistic people to focus and some other things too. So autistic kids may be able to ‘look neurotypical’ (whatever that means) but they are likely to struggle a lot more in their daily life. These therapies send an unspoken message to autistic kids that their autism – and as such them – is lacking and lesser than the ‘norm’.

I just want to focus on one element of this issue for this article: making eye contact.

Autistic people usually find eye contact very unpleasant. I have heard people say it causes physical pain, it is like lasers going in their eyes or like the other person can see right into you. For me I find I can see into the person’s very soul if I make eye contact. It is horrendous and I never do it for more then the millisecond it takes me to realise I have accidentally looked in someone’s eyes. I only learned what colour my own eyes were a couple of years ago and finding out caused me a lot of stress as I had to look in my own eyes. I was concerned I might not be able to pull away from my own gaze in the mirror.

However the neurotypical world – or the English speaking western version of it at least – seems to see eye contact as something essential to communication. Not making eye contact apparently means you aren’t listening or that you are being sneaky. In fact, eye contact as a cornerstone of respectful communication is not the standard around the world. Many cultures see eye contact between people of different social standings or ages as being highly disrespectful and aggressive. You don’t even have to go all that far to find this different view. Many Aboriginal cultures in Australia consider eye contact very rude in certain contexts.

I was a school student many years before the Asperger’s diagnosis was available. I went through school looking at my books or my feet. Teachers would  tell me to look at them when they spoke to me. Amazingly to my mind, they thought this was a prerequisite for me to be able to listen to them. I was a LOT happier and more able to take in information from a conversation while looking at the floor or another point in the room than directing my gaze at the teacher’s eyes. I was instructed to look at people so much I learned how to do it without doing it. Even now, when I remember, I will look at the general direction of a person’s face – around the nose usually – when we are conversing. Lots of people seem to find that comforting. I often find my gaze has shifted without me knowing during the conversation and the person I’m talking to gets all flustered and looks a where I was looking as if there were a swarm of bees there or something! It is tricky this business of trying to look ‘ordinary’. The only being who I know the colour of their eyes is Mr Kitty. For some reason I’m very happy making respectful eye contact in non-verbal cat communication with Mr Kitty – in fact I understand cat expressions and body language about 10000 times more than I do that of humans.

I really struggle when an autistic child is forced to make eye contact. They actually often find it much harder to listen to what is being said because making eye contact is so unpleasant and disturbing. So the autistic kids who ‘succeed’ at that sort of therapy therapy are probably actually less able to pay attention!

I think that these kinds of things which focus on making autistic children appear less different are more about the appearance to others than the actual welfare of the child.

I would so much prefer that the world we live in didn’t involve some people feeling the  need to make autistic kids look less autistic but instead promoted their qualities and strength and humanity and understood their differences. I can’t see how this is so hard to achieve but I do think that therapists and educators forcing autistic kids to make eye contact and address ‘behaviours’ which hurt nobody but just look ‘odd’ is part of the things which hold back inclusion and respect for autistic people.

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