Anyone who corresponds with me via email, text or social media will know that I usually put a smiley face or two in my messages. Sometimes I put a frowny face, occasionally I put a heart. The reason for my pared back emoji usage is that I do not understand the meaning of almost every other emoji. I know the red circle one on Facebook is an angry face and the crying one is the sad face but beyond that I have no idea. Sometimes I look at the other facial expression emojis and wonder if I should use one but I have no clue what they mean so decide not to, just in case it is rude or disrespectful. Somebody sent me a picture of a cat lying down and eating a cookie the other day and I had to ask what it meant!

I am unsure if other people have this experience but it really does confine my emoticons to about four or five. Of course this probably isn’t much of an issue in and of itself. I can usually express meaning well through words and if people get sick of my frequent smiley faces in typed communication, well it’s a smiley face. How unpleasant or annoying can that be?? The issue goes beyond emojis though and has been with me since before the world wide web was even a digital twinkle on Tim Berners-Lee’s monitor. Like many autistic people I really struggle with communication through anything other than the words typed or said.

I can’t tell in conversation what people are feeling or wanting to express other than the words and tone of voice unless they are yelling, laughing or crying – and even then I struggle. In conversation, facial features move much too quickly for me to follow. I actually know a lot of facial expression when given context. When I was younger I watched the three Lord of the Rings movies over and over. It was  comforting. At one point I had memorised each word and each scene in the three films. I worked out a lot about facial expressions  from watching these movies. I knew the context beyond the conversations and Hollywood actors often exaggerate their facial expression to convey more meaning. I was excited at my discovery and thought I would be able to decipher communication clues in conversations with friends. However it didn’t work like at. Even after working out which facial ‘look’ corresponded with which emotion when it came to real life, real time conversations I had no idea. It moved to quickly and  couldn’t keep up and didn’t know the back story as I had when watching the movies. That was in about 2005. My understanding of facial expression has not really changed since then.

There are some challenges which arise from this. The first one is understanding how people respond to me and whether they like me or not. I am quite good at picking up the general emotion coming from people intuitively – not from what their face or body looks like but through a sort of emotional ‘aura’ coming off them. So when I talk to a happy person I feel their happiness and assume they are enjoying talking with me. But when somebody I speak with is out of sorts – having a hard day, angry about something, has had a loss or disappointment – I cannot work out if the negative emotional ‘aura’ I feel from them is related to that sort of thing or to them not liking me. I have had so many people dismissing my concerns about a person and saying ‘you are being silly, they don’t hate you’. Sadly while that is sometimes the case, in other instances my intuitive ‘feeling’ from a person does relate to them being toxic.

Another issue – and one which has contributed to a lot of incorrect interpretation of autistic experience – is the impact on perceptions of empathy when people do not understand facial expressions and body language. Autistic  people are constantly being told we don’t have empathy, which is total rubbish. Empathy is not understood in context. If I am talking to someone and do not notice their face or body language and the words they are saying do not alert me to any distress, I am unlikely to respond in a caring manner. Why would I? The information I have is that they are OK. The issue is that people can hide their struggles and moods. The person I was speaking to may have been really distressed but not showing me in any demonstrable way, When I don’t pick up on their distress and therefore not respond with support and empathy, they or someone else in the conversation might think I was callous and heartless. I am actually very caring, as are so many Autistic people. If the distressed person told me in words that they were distressed I would be very kind and thoughtful and listen to them and assist in whatever way I can. The Autistic people I have met – and that is quite a big number – are usually just as thoughtful and empathetic as I am but we need enough input to understood what is going on. Understanding that different people communicate differently is a really important consideration for everyone and especially for those who are autistic or know, love, work with or are a friends with autistic people.

These considerations around understanding facial expression and body language go to the heart of difference between Autistic and neurotypical experience. I think that they are actually best seen as cultural or linguistic  differences. This is a place where we need understanding rather than assumptions and criticism. I have almost no understanding of what facial experiences or body language mean – in real life or in emoji form  – but I have a signifiant level of emotional intelligence. A great number of other autistics are similar. Just because we do it differently doesn’t mean we do it ‘wrong’. My smiley face may be one of the few facial expressions I know but I do like to share smiles. And if you are talking to someone and they don’t seem to be reading your face the way you expect, it is actually quite easy to explain in words what you want to convey. Once again, different is not less, just different.

Me, communicating 🙂

Photo credit: David Jenkins

I just got back from a weekend doing wonderfully enjoyable and affirming things. I launched an exhibition of photography by some amazing Autistic artists in Bendigo, a lovely town in Central Victoria. The show was organised by some of my great friends – Beck and Susannah from the Bendigo Autism Advocacy and Support Service. I dressed the way I dress when I’m feeling confident and happy with who I am – lots of colour and on this occasion a space and planets theme. I imagine I looked a bit different from whatever the ‘average’ person in the town looked like but didn’t really care. At the age of 43 with my self-esteem and confidence are at all time highs. I do not expect bullying or harassment from anyone, well, not overtly at least. Sadly my weekend included three instances of rudeness from three separate sources, which prompted this post.

The first incident was at the hotel I stayed in. It was actually a very friendly place and the staff were great. But there were some primary and early secondary age girls who were attending a sports carnival. I encountered their adult supervision once or twice but mostly they were running up and down the corridors and knocking on each other’s door. No issue with that. They seemed to be having fun. However, yesterday evening when I came back to the hotel after my talk I saw three of the young girls and they ‘whispered’ things which I didn’t have to work hard to overhear. Apparently I was a ‘crazy lady’. I heard them say things suggesting they were worried I would go in their room and presumably hurt them. After I dragged myself back from the 1980s being bullied in the schoolyard, I realised how very disappointed and hurt I was at their reaction to me. I would never even think about hurting a child so having kids apparently worried about my actions and motives horrified me. I tried to think about where these attitudes came from. I definitely don’t blame the girls because they had to get those views from somewhere. The notion that people who took or act ‘different’ are dangerous and should be feared is a view across society as well as among individuals.

I thought I’d had my quota of  rudeness and invalidation for the week but sadly no. I flew home yesterday. As I went through security the fellow doing the explosives test called me over. While he was doing his job we got talking. He asked me what I ‘did’ (itself quite a troubling question). I have a choice of answers to that question so chose to pick the ‘I am an author.’ response – that one never gets old! He asked me what I wrote and I told I’m what I always tell them ‘I write books about Autism’. I could actually see the decision forming in this person’s mind that I am Autistic and then the way he treated me altered dramatically. I wondered if I had suddenly morphed into a three year old child from his manner. He then shook my hand and said something patronising which I forget exactly what it as but something like ‘Well done’. (i was pretty annoyed at that point.)

Sadly these experiences are incredibly common for so many people. They can come from a variety of sources and are supported by prejudice and a lack of understanding of or respect for ‘difference’. They certainly fit within what I would call bigotry and bias. And to the person on the receiving end they have a number of impacts. In my experience they generally make me doubt myself and feel worthless. They definitely transport me to the times in my life where bullying was an everyday occurrence. They also result in me being monumentally pissed off,

The reason I call them ‘rudeness’  – apart from the fact it is of course – is that rudeness relates to thoughtlessness. The views and emotions of the person receiving the rudeness are unimportant to the person giving it.

Bias and bigotry are all about not caring or being interested in the views of others but they move beyond simple rudeness because some other things are at play. If someone is ‘rude’ by pushing in a queue I doubt they believe that they are somehow better or more entitled to respect than the others in the queue, but bigotry and bias come from that kind of power dynamic. It is apparently OK to patronise me because the views and feelings of an Autistic person are apparently unimportant. Often that is not a conscious thought but that is where those attitudes tend to come from.

When I got to Canberra airport I want to get my luggage. I am lousy at picking facial expressions but I did see a young dad look at me and do what I believe is called a ‘double take.’ He looked at me like I was a penguin that had just walked up to him and asked him if he wanted a drink! I smiled broadly at him and said ‘Hi, I’m Jeanette!’ and he scuttled off. I felt marginally better having at least stood up to one of them!

Paternalism may seem a lesser evil than hostility. It tends to be less distressing than hostility but it is definitely harmful in that it can make us doubt ourselves and it also means the person doing the paternalism is unlikely to respect our views or see us as real people. Imagine if your doctor was like that? Or your parent? Actually in many cases those who we interact with ARE paternalistic or hostile. These biased statements from people  – especially adults – can betray deep-seated prejudices. Once again, when it is some school girls in a hotel and a ‘once off’ event, it is not so bad but what if that person who makes assumptions and attacks you for being  yourself is someone you see and interact with all the time and cannot distance yourself? Someone like a person’s manager at work or even their partner. This is happening all the time. It is not OK. I don’t think ignorance in adults is much of an excuse. This stuff runs pretty deeply and is fed by attitudes in society which are sort of legacy attitudes, hanging around way too long. This weekend I am sorry to say that I did not respond with a lot of confidence or leadership. This is tricky stuff and I don’t have any particularly useful things to say about what to do. I guess as individuals we can challenge it where we can and as a ‘culture’ of Autistics we can work together to challenge these views wherever they occur and support each other to do this. It is easier to challenge bigotry when you know someone is ‘in your corner.

There is a big trigger warning in this one around mental illness and suicide so if those are not things you want to encounter on your foray into blogland, maybe give this one a miss

I will also note that the strategies in this post are ones I have found helpful. They will not work for everyone and I am not a psychiatrist or mental health professional, so please do not take them as clinical advice.

Picture this scenario:

An employee in a corporate workplace who is Autistic and has schizophrenia comes into work and isn’t feeling great. At lunchtime she has an exchange on social media which exacerbates her difficult time. She wants to stay at work but knows she needs to leave. She tells her supervisor she is having a hard time and the supervisor recommends she goes home  and asks if she will be OK to go home by herself. That evening the supervisor sends the employee a text message checking if she is OK. The employee calls her supervisor, knowing there will be no judgement. They discuss whether she should return to work the next day and they agree it may be a good idea to take the next day off. When the employee returns, her colleagues and managers are happy to see her and ask how she is. There is no judgement, blame or awkwardness – just concern for a colleague with a health issue.

That sounds made up doesn’t it? I can assure you it isn’t. This happened to me a couple of weeks ago. If there was a manual about how to support people with mental illness in the workplace I am sure there would be a big picture of my team. Sadly in many workplaces this is not the norm. In fact in most places mental illness is still viewed with deep unease. People are often afraid to say anything for fear of judgement. Yesterday was R U OK day in Australia – and possibly elsewhere. The point being to ask people if they are OK and help address difficulties with mental illness and support people to stay safe form suicide. There are no doubt a good many blogs and articles about this. But what about the experiences which Autistic people have around these things?

Autistic people are at a considerably higher risk of suicide than neurotypical people (although of course ‘neurotypical’ is a group encompassing other groups with a high risk of suicide so this isn’t a very accurate grouping but suffice to say Autistic people have huge issues in this area). Autistic people also experience mental illness conditions which can be missed entirely or we may be misdiagnosed with an inappropriate mental illness ‘label’ which makes matters worse.

Services for Autistic people with mental illness are sadly deficient in a lot of areas. Many mental health clinicians have a limited or very poor understanding of Autism, especially in adults. Accusing ‘help’ can be very unhelpful. While it is a good general principle to seek help for health issues, many Autistics are reluctant to do so after a history of mental health support which in fact is not at all supportive.

Many Autistic people have alexithymia, also known as emotion blindness. This does not mean we lack emotions but the we struggle to articulate or connect with our emotions, In terms on mental illness, alexithymia is a big risk factor for a variety of reasons. The first is that we may be unaware we are experiencing anxiety, depression or other mental illness symptoms. The point at which we are aware of these is when they are severe and entrenched. Alexithymia also makes it hard to gain helpful treatment for mental health issues. Clinicians often ask ‘how do you feel?’ This can be extremely counterproductive to those with alexithymia who either answer ‘good’ as that is what they were taught to say or just be completely baffled – both of which are responses unlikely to result in assistance.

Autistic people have often had frequent experiences of hostility, bullying, discrimination and exclusion by people they come across in life. We may have few or no friends and / or be estranged from family members. It is hard to remain connected and positive if you feel completely alone. We may feel misunderstood and disconnected from the human race.

This has got quite dark and frightening. I certainly don’t want to suggest we can do nothing about this because actually we can. There are some ‘Are you OK?’ strategies which Autistic people can put in place to help us address these risk factors and challenges. These include:

• Despite feeling disconnected and isolated, many of us are in fact do not have to be alone. There are many forums for Autistic people to connect with others, through things like online or in-person social groups. I  know some people are isolated but there are ways to connect. For me the online world is my main social outlet. I love typed communication and not having to look at people when I talk to them.
• Usually the riskiest time for suicide coincides with a mental health crisis. Mental health crises are a little like meltdowns. As with meltdowns there is a time limit. Usually – and I have this on authority from a number of sources – the risk period for a mental health crisis is between twenty minutes to an hour at the most. When I am in crisis I am definitely at a much higher risk of making regrettable decisions, however these days I tell myself, during a crisis, that it will pass and things will change one way or another. This is a skills it has taken me some time to learn but is a very useful one. Keeping a general awareness of the timeframe is often helpful even if you can’t consciously articulate that during a crisis.
• Very simple one which is actually often ver difficult to do: If you are feeling suicidal, tell someone.
• A lot of people are terrified of going to the psychiatric ward. I understand this – I have been there many times in several difference States and Territories and have no intention to return. However if you need to be there it is better than the alternative of taking your life. A lot of the issue is shame and stigma but in fact you are seeking help which is a very positive step and in my life has meant the difference between me being here and not.
• If you are frightened for your safety in the ‘heat of the moment’ a helpful strategy is spending time with a friend (and if you do this, if you can, explain the reasons for wanting to see them – not only will this hopefully make them more likely to come over but also means you can be honest and talk through issues if you need to). Some people do not have this kind of support so related strategies include contacting a helpline service such as Lifeline – which also has an online typed chat option, intentionally distracting yourself with an activity (this actually works quite well for many people despite sounding simple) and being around people or pets. It is much harder to take your life is you are around people or creatures that you love. In fact being around strangers has been shown to be a protective factor as well so if you have no available friends or pets going somewhere there are people can be helpful.
• And I will leave you with another little me story. In the late 1990s my mental health was appalling. There are a good many times that I should not have been around. At the time I hated myself and my life. I even asked a psych nurse once if they still did lobotomies because I felt that would be better than the hell I experienced. I was homeless, long term unemployed and utterly miserable. My notion of the future was pretty much the coming Thursday. I could not see any value or point to my life. Regular readers of this blog will know that I actually somehow ended up with a lot of reasons to live. Not only that but I now have this amazing and somewhat enviable life, I am happy and engaged and I have a most amazing cat and house full or art. I could not think of anyone;s life I would rather have than mine. It’s just  wonderful. And I came so close on many occasions to throwing it away. Whatever happen your life will change on one way or another, I am very grateful I didn’t;t throw away my tomorrow due to the misery in my today, You really do not know what is in the future unless you stick around to see it.

I really hope you weren’t triggered by this blog, If you do need to talk to a counsellor, Lifeline has either online chat at https://www.lifeline.org.au/get-help/online-services/crisis-chat

or a phone service on 131 114 which is 24 hours, 7 days

This service is in Australia only. There are sinker services in many otier countries.

 

In 2014 my second book was published. It is an activity-based book for Autistic teens to prepare them for employment and build their knowledge and confidence to join the workforce when the time comes. I am very proud of this book and was quite excited when it was published. The book coincided with an increase in demand for me as a speaker and consultant on all things Autism. It was a time when my Autistic  identity flourished and I delighted in talking inclusion and respect and Autistic pride.

Shortly after my workbook was released I was talking to an acquaintance who I didn’t know well but who had always been friendly. I told her about my book and how I was an Autistic advocate and speaker. She looked excited and then went on to tell me in great detail about how when she was a teacher she had taught ‘lots of students with Autism’. She recounted the tale of one eleven year old boy. The woman said that he didn’t make eye contact so she would put her finger on his chin and push his face up so he was looking at her. I was utterly horrified at this. As a teacher this woman had physically manhandled an Autistic boy under her care for the ‘poor behaviour’ of not looking at her. I somehow managed to refrain from pushing her chin up unexpectedly to see how she enjoyed it. Instead I told her about eye contact an Autism and why Autistic people can find eye contact invasive and threatening and a host of other unpleasant things. Needless to say I didn’t seek out the company of this ex-teacher again!

So what is the deal with eye contact? Many educators and clinicians and people working with Autistic people – and especially children – will tell you it is a cornerstone of communication and that it is impossible to convey attention or meaning without doing this. That is actually not true. The ’standard’ of eye contact as communication is only true in some countries and cultures. It is not universally used. For example in some Aboriginal cultures in Australia eye contact is viewed as rude and aggressive, especially between people of different ages.

Forcing eye contact for Autistic  people is based in the concept that Autistic experience is deficient or wrong or ‘weird.’

Autistic  people who ‘do’ eye contact – and I speak form personal experience here – do not usually ‘do’ it at all. I look in the general direction of the face or the bridge of the nose when speaking with non-autistic  folks as it keeps them happy and seems easier. This is not the ‘right’ way to approach the issue, but it is one I use and a lot of other Autistic  people use. Attitudes around eye contact is part of what I see as a cultural difference between Autistic and neurotypical people. Cultural differences are not right or wrong, they are simply different. Non-autistic people in Western English-speaking countries tend to look at one another’s eyes on and off when in conversation. Autistic people usually don’t.

So why is eye contact difficult for Autistics? Each Autistic  person I have spoken to on this matter has a subtly different, but almost universally unpleasant, experience of eye contact. For me, if my gaze accidentally meets the eyes of the person I am talking to, I feel like I can see into their very soul. It is horrific – too much information on a grand scale! Others feel the eyes of other people burning into their own. One friend described eye contact as being like prongs from the other person’s eyes spearing her own eyes. Kind of makes sense that we avoid eye contact!

There are a number of real problems with forcing eye contact in Autistic people – be they children or adults. Not making eye contact is not ‘wrong’. I very rarely make eye contact and if then only by accident yet I work in areas requiring significant sensitivity and emotional intelligence – both of which are things I have in spades – without having any intentional eye contact ever. The ‘need’ for eye contact I suspect relates to neurotypical people needing to feel they are being listened to, but there are ways of listening – and demonstrating you are listening – without making eye contact. The main issue I see here is the notion that non-autistic experience of communication is somehow the only legitimate experience. Diversity is about listening and respecting other views but when we are told we do it ‘wrong’ it only serves to exacerbate issues of power imbalance and discrimination.

And the obvious issue with forcing eye contact is the suffering the Autistic  person will experience through being made to do it. This will add to stress and overload and most likely contribute significantly to behavioural issues for kids – and adults! Plus it is rude and punitive about something which isn’t in fact necessary. Many Autistic  people I know – including me – have worked out some way of appearing to make eye contact without actually doing so just so that we avoid the judgement of others.

We need to stop forcing people to make eye contact and focussing on it being ‘poor communication’ not to do so. I actively listen to others, I can have my complete attention focussed on a person by listening just to the words. For me the words said – and a little bit of tonal modulation in the voice – convey all the meaning I am going to get from face-to-face communication and I have managed pretty well with that  over my forty-three years. I do not know the colour of anybody’s eyes I have ever met except my own and even that is a bit hit and miss. Please don’t force children or adults to make eye contact when it has no particular benefit for the Autistic person and is stressful, invasive and actually makes it considerably harder to listen attentively when you are trying to manage the onslaught of input form the eye contact!

This week I am attending a major Autism conference in Sydney. I call these kind of events a ‘Jeanette holiday’ because they are the highlight of my experience at the moment. I get to meet up with friends I rarely see, have incredible conversations and meet new people and learn knew things. (And I admit I tend to buy a wighted toy from the ‘Nanna’s Weighted Blankets’ stall – this year I got a white kitty toy who I cuddled in the afternoon sessions  – not quite Mr Kitty but still kitty-ish enough to be comforting).

I was happy and proud to be me and all that means. In my mind everyone has the right to feel comfortable and happy to be them (unless they are a serial killer or something of course!). Sadly being proud and happy to be ourselves is often incredibly hard or impossible to achieve. For those of use who belong to one or more ‘intersectional’ groups – groups of people who face disadvantage – self respect, love and pride can be a very hard ask. I had to fight hard for my own Autistic identity and often the enemy seemed to come from within.

When I discovered I was Autistic I actually refused to accept it. I stopped myself from entertaining the very idea I was Autistic or different or Disabled or anything else. My denial of my Autism was a conscious thing, I could have changed at any time and deep down I knew I was Autistic but consciously I saw it as validation of what the bullies told me all through school. My limited understanding of Autism combined with my self-hatred and shame meant there was no way I could accept it. I kept thinking back to a music concert I attended a few years prior to my diagnosis where these girls were about to bully me and then one of them suggested I had some kind of intellectual disability and they left me alone. It was bad enough being bullied but then receiving pity from the bullies? I felt like I was too strange to even be bullied! It was just too much, I already hated myself. I didn’t need a diagnosis which confirmed that!

How did I get from self-loathing to self-respect? I would love to tell a tale of a light bulb moment where I realised I was OK as me and then I found some Autistic friends and life did some fairytale thing and everyone was happy and throw in a couple of rainbows and kittens playing and schmaltzy music. Of course life doesn’t really work like that and in fact it took me many years to value and respect myself. Even when I started to apply ‘Autism’ to myself, I did not do it very enthusiastically. It was like a guilty secret. I found it easier to discuss some genuinely shameful things I had done in the past than my diagnosis. I only told a select few – those who I thought wouldn’t bully me or ridicule me. Even when I spoke of my Autism it was in hushed tones, as if I were afraid someone else might hear. I know, not much of an advocate!!

The change, like so many changes, was supported by a friend and mentor.  Somehow I ended up doing a course for Autistic adults to enable us to do a public speaking job in schools. A woman was at that course who I was instantly drawn to. She said she was Donna and told me about her many books. She was energetic and dynamic and evidently owned and valued her Autistic identity. We became friends – and had the most amazing mentoring relationship. I learned my Autistic identity in her house, in conversations with her and other Autistic women she knew. Donna (who preferred Polly but was Donna when I knew her) supported me to write my story. When that was published I got thrown in the deep end of public speaking and media interviews and a public as well as personal identity as an Autistic woman. It was very challenging but ultimately a great things.

My transformation from ashamed to advocacy was not complete at that point but it looked a lot healthier. I have written of this many times before but Polly’s mentorship and friendship changed my life, and changed my ‘me’ on a fundamental level. I think that to support people to became proud of themselves and accept and understand their identity better is a precious gift. I will certainly always be grateful. As an aside, mentoring which produces more mentors and / or leaders is amazing.

A number of my friends who I don’t often see had dinner together tonight. I wore my red curly wig and my gold sequin shoes. My friends and I had one of those discussions where you feel like you might have changed the world a little by having it. We reflected that things are changing, mostly for the better, at these sorts of events and hopefully flowing on from that into support services and other important things. The world is different. My world is different. I don;t think these events happened within the same timeframe but I do know I am incredibly proud of my Autistic identity and of the great friends I know. I actually have a culture where I belong and am so grateful to have this and be accepted. To have positive identity and connections with others in your culture is a great gift and a wonderful thing, I want to see a world where this is the norm.  Everyone needs their culture, their  ‘tribe’, their identity.