Respecting difference: Autistic language and culture

A few years ago I was at an autism conference in the quiet room, along with many of the other autistic delegates. We were having this great conversation. I hadn’t ever had such a good conversation with a group of more than a couple of people. Usually when I am in a group of people I don’t know when or how to ‘break in’ and either interrupt or sit there waiting for a cue which I never notice. But in this discussion there was an amazing flow of ideas and sharing of thoughts, We ‘got’ one another – not just with the topics we were discussing but it seemed at a  much deeper level as well. At that point I realised that I knew  how to speak a language that I hadn’t thought of before: I was ‘speaking Autistic.’ I imagined that if a neurotypical person came into this room they would struggle to break in to the conversation, the topics might not interest them and they would feel like an outsider, as I often do in conversations with people who are neurotypical.

I realised at this very significant patin my life that Autistic people  have in a sense a culture of our own. This is why I sometimes capitalise the ‘A’ in Autistic. Neurotypical people are a culture as well, with their own language andcustims. It is like we speak Spanish and they speak Bulgarian. Neither language is better or worse than the other, they are simply different.

From this I also thought that the reason our Autistic communication has not really been defined in these sorts of equal terms until very recently has been due to not only our minority status but on how autism up until very recently was only viewed as a problem, a deficit and an ‘affliction.’ The DSM-5, the diagnostic manual  used in most English-speaking countries to inform autism diagnoses, describes Autistic communication as

Persistent deficits in social communication and interaction across multiple contexts, as manifested by all of the following (currently or by history):

Deficits in social-emotional reciprocity

Deficits in nonverbal communication behaviours used for social interaction.

If you have an autism diagnosis you have most likely been assessed against this or the predecessor of this manual, the DSM IV which, while the diagnoses are different, the deficits-focus is just as evident. The diagnostic literature is strongly based in the medical model of disability. It gives a person a ‘label’ which enables them to access support services and healthcare and things like that. If that is all it is used for then that can be very useful. Autistic people in current societies face discrimination and our experiences can be very challenging. Being able to access services can be incredibly helpful.

However, there is a catch. A diagnosis is not only the means to access support services. In the case of autism  and many other diagnoses – it is an opening to a sense of identity and with that, one’s ‘tribe’ of Autistic peers. There is a clear reason that many Autistic people use identity-first language (‘I am autistic’ rather than ‘I have autism’). Many of us understand autism to be an integral part of who we are. We do not see it as an add-on but as part of our very self. While this is not true for all Autistic people, it is for a great many.

So between the medical model on the one hand and the Autistic identity (sometimes described as ‘Neurodiversity’) model on the other, where does our communication sit? As with any culture, our Autistic ways of communication – our ‘language’ if you like – are vital to what makes us who we are. Unlike many languages though, for a very long time few people have  seen autistic communication as anything but disordered or deficient. For people who do not use verbal speech, this ‘othering’ and dismissing their language can be even more severe.

A very short while ago in the scheme of things some Autistic people started to challenge the ‘you are all broken and defective’ sort of view and declared that we are different not less. Our communication styles are also different not less. Much of the communication difficulty experienced by autistic people stems from that gap in communication between neurotypical and autistic ways of expression. One of the most challenging things for me involves explaining to people that there are different ways of communication to start with!

So to get back to my room at the conference in Autistic space. I realised that I have spent my whole forty-three years of life trying to learn to ‘speak neurotypical’: trying to work out hidden meanings in conversations when I only operate on one level, trying to suss out whether the compliment I gave my boss because I liked her dress had been misinterpreted by my colleagues as something other than was meant, trying to figure out what facial expressions mean when they change so quickly. …And I wonder what the world would be like if more people realised that Autistic is like another language which can be learned by neurotypical people too. I love that I have discovered my Autistic culture and fellow Autistic compatriots. It is a strong position to stand in after so many years of being told I was getting things ‘wrong’ when in fact I was just using a different language.

And when I think about it, the advocacy work I do with neurotypical people form different walks of life is like a lesson in Autistic language and culture. I like that.

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A ‘gentle manifesto’ – Autistic advocacy and representation

Until very recently, the prevailing view in society has been that autistic people are incapable of doing much at all and needed even the most basic decisions made on our behalf. Ideas of Autistic Pride and Neurodiversity would have seemed almost universally preposterous until quite recently.  Virtually all the discourse and thinking on autistic people was told by neurotypical  people. This is the background which still informs a lot of people’s thinking in our current world.

Along with countless autistic friends and colleagues and neurotypical allies, I stand against that view. I see that autism is more a difference than a a series of inherent deficits Many of the challenges we face are not intrinsically related to our autism but to our experiences intersecting with and trying to navigate what is often a very hostile world. We hear the stories of bullying, violence and victimisation and horribly they continue.

But this post is not about doom and gloom. It is about representation, about advocacy, about the need for us to be heard and to take our rightful place in the world. In recent years in a number of countries there have been campaigns, led by Autistic people to change the way we are viewed. An example is this blog. I am one of what is now a vast number of autistic commentators talking about autism and other things. However I do  feel that my autistic friends and colleagues, all the bloggers, vloggers, advocates and activists are still at a disconnect with the wider world. The job as I see it is to close that attitudinal gap.

It is vital to see beyond our borders to the experiences of people in other counties. What is true for Australia where I live is not in other places and vice versa. The task of autism advocacy is international.

The is my list of areas I really want to see changed:

  • One of the things we are up against as a community is what I call legacy attitudes. By that I mean the sorts of thinking of neurotypical people who have been ‘doing for’ Autistics since forever. They carry these views with them. Changing legacy attitudes can be very hard as they can be very ingrained and challenging them is like challenging the person’s core beliefs. I find some of the neurotypical people who are new to providing services to autistic people are actually way ahead in their views around Neurodiversity than some of the people who have ben involved for years who are holding on to views which are thankfully becoming discredited.
  • Organisations which provide services to autistic people – children and /or adults – need to consult with autistic people at every stage. They need to have autistic people on their board and those autistic people need to be actually have their views heard and taken on board. I have been the token autistic person in a lot of settings and it is useless in terms of making change and very frustrating and upsetting for me.
  • Attitudes around people who do not use verbal speech really need to change. The invalidation of people who use augmented and assistive communication needs to be addressed. Not having a verbal ‘voice’ should not mea the person has no voice.
  • There needs to be an understanding that autistic people are actually the most proficient experts in being autistic (I know. amazing hey?!!).
  • The information we get when participating in consultations and projects needs to be accurate and include everything we need to know to inform our decision to participate or not. A Facebook friend recounted being invited to consult on what seemed to be an excellent web design project. Then at the last minute she and her autistic colleagues were informed that the funding for the project was from an organisation known widely as being invalidating and damaging to autistic people. Information on the funding body should have been given at the outset.
  • Respect, respect, respect. I have friends from other demographic, intersectional type groups who experience similar sorts of issues that I see around Autism. Respect is the key to meaningful engagement and relationships. True respect I think comes from the point where people view me – or whoever – as having the same value as them.
  • An end to the assumptions of incompetence, infantilising and dismissing Autistic perspectives. An adult is an adult, regardless of their interests or presentation. As a speaker and author I am often on the receiving end of this. The classic is when my keynote presentation  is announced with ‘And now Jeanette is going to give her little talk…’ This paternalism might  seem innocuous but it goes to people’s basic attitudes around Autistic people.

I think  we are at a bit of a turning point now. There is more representation of autistic people in decision-making bodies, a lot of the research conferences and events have a number of autistic speakers (although it should be noted that there are some problems with representation and respect in a number of the events which need to be addressed).  Attitudes in wider society are beginning to change.  We do have a very long way to go still.  We need to address the underlying attitudes that drive the issues we face. We need to move past the ‘doing for’, the paternalism, the lack of respect for us and our experience.

I am not a revolutionary. If this is a manifesto it is a gentle one but these are my thoughts. It takes all kinds to make a difference. I am happy to do everything I can to help make our world a place where autistic people are valued and respected.

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My journey with jealousy, or why I don’t want to be the only autistic in the village

I often joke to my friends that people with tall poppy syndrome might struggle to have me as a friend because I am absurdly accomplished these days. What I don’t tell them is that if I met someone with my level of accomplishments ten years ago I would almost certainly have struggled with jealousy and avoided that accomplished person.

Now I’m getting very honest here but my own autism advocacy journey which bought me to the amazing place I now inhabit was ushered in by an amazing mentor. She was incredibly supportive but after my first book came out I started to feel threatened by her success and found it hard to maintain the friendship with all those insecurities and status anxiety going on. It was definitely not a situation where I covered myself in glory. I still feel shame and regret at my actions.

I always found my reaction of jealousy odd because as wasn’t that I didn’t want  people to succeed, just that I felt intimidated when they did. Looking at th issue I knew that I was never competitive because I thought myself better than the person I saw as a rival. In fact the opposite was true. I took this feeling with me well into adulthood. What it meant was that I became obsessed with recognition and success because i thought having those things would signal that I wasn’t inadequate. It wasn’t really much fun being inside my head at this point.

I used to think my jealousy was based in me thinking I was somehow better than other people and ‘deserved’ the success they had more than they did. The sign this wasn’t the case though was that I absolutely hated my jealousy. I hated thinking that way about my colleagues and friends. It was a thought process I would have given anything to rid myself of.

This is an issue for others as well. I have been on the receiving end of jealousy and tall poppy syndrome and it is very upsetting. I was at an event once and one of the attendees was incredibly rude to me. I had never met this person before and couldn’t work out what I was doing wrong. A friend who was also at the event told me it was due to the other person having an issue with ‘famous people’. Which is silly because I’m not a ‘famous person.’ I am well known in a small community in a country with a  small population. In the scheme of things fame-wise I’m not up there at all. I don’t even have a Wikipedia page! But it was quite hurtful.

Autistics frequently face disadvantage and discrimination. I think it is best to support one another rather than see others as rivals. I feel very bad about my years of comparing myself to my autistic colleagues and feeling intimidated because, in my mind they were somehow better than me.

I find it helps to think about timelines in this space. Twenty years ago I hadn’t written any books, ten years ago I had written a book but had a much smaller profile and now I have a bunch of books and way too much  profile for a Jeanette to manage without resorting to a lot of debriefing with friends, cursing at the laptop and repeatedly pushing my ‘NO!’ buzzer! Other people have a timeline too. You might not get an opportunity you want one year but you might the next.

Opportunities tend to be fleeting and our ambitions and aspirations  change over time. Another person’s success does not really detract from anybody else’s. There are plenty of rewarding things to do out there.  The more autistic writers, speakers and advocates the better! I really honestly don’t want to be the ‘only Aspie/ autistic in the village.’

The other thing about jealousy and rivalry is that you do not know what the person you are having difficulties with is going through. Some ‘successful’ people are really struggling but we don’t see it. I have learned that the only person you should ever compete with is yourself.

I have learned how pointless and divisive jealousy is. Success is different for each person, as is ambition. It remains a great disappointment to me that in order to get past my jealousy and insecurity I had to become what my own personal version of ‘successful’ was. However I am happy I got there because it is so much nicer to be free of this burden of insecurity. I am so happy to be abel to willingly nominate colleagues and friends for awards, to celebrate the success and achievements of others without thinking I am inadequate by comparison. Comparing yourself to others will very effectively ensure you feel miserable. Thankfully the converse of that is also true – celebrating the successes of your friends and knowing you are a individual with your own path to follow is a pretty good feeling.

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Me with Tim Sharp and Temple Grandin  – and NOT feeling intimidated!

An employment epiphany – or how I’ve had autism and employment all wrong

The other day something happened to me which I doubt many other people ever experience. I had an epiphany about employment and was very happy about it. Employment is one of the things I am asked to speak about quite a lot. In 2014 I wrote an activity-based book to help autistic teens and young adults build their confidence and knowledge around employment to help them find work when the right time comes. Supporting other autistic people to find suitable employment and build their skills around managing at work is a great motivator for my work in the autism community. I love talking about employment and have spoken to thousands of people about autism and work over the past few years. I pride myself on being quite good at talking about employment and autism. That is until the other day when I identified a significant gap in my approach.

I was asked to write a chapter on autism and employment for an excellent book by a number of autistic women authors. I thought – and probably said to some people – ‘I’ll get that done so quickly. Employment is one of my ‘things.’” So I dashed off a chapter and it came back with edits. The editor pointed out that the chapter was quite negative. It was a surprise and I always thought my approach was focussed on the strengths of autistic employees. In fact it was but the negativity was coming from somewhere else. My epiphany made me realise for the first time that strengths-based approach to autistic people finding suitable and meaningful work also needed to include more of a strengths-based attitude around the workplace and employer.

Up to now, most of my discussion of the position I suggested autistic job seekers and employees take was quite a defensive one. ‘Employers often discriminate against you in recruitment so put strategies in place tp address this’…’, ‘Bullying and harassment happen at work so keep safe and know your rights…’, ‘Think about how to ‘disclose’ your autism…’ My position seems to have been that while autistic employees can be amazing at their job and they should build their confidence, in fact the other side of the equation – their employer, manager and colleagues – were almost certainly going to cause difficulties through bigotry and inaccurate assumptions.

A couple of weeks ago I posted one of my  memes which said ‘Something awesome might happen’. I think my employment epiphany might have centred on similar thoughts. I am amazed that i have been in this mindset for so long. I imagine it stems from some of my own invalidation in various workplaces in the past. The negative implications around assuming your employer will discriminate against you include:

  • It can make the autistic employee focus on their perceived deficits and feel hey need to justify their existence as a person and an employee rather than focussing on what they do well and can bring to their role.
  • It can also make autistic employees unnecessarily concerned and hyper vigilant, causing stress and self-doubt.
  • It can mean they are less willing to discuss their needs with their manager for fear of discrimination.
  • It will most likely make forging productive relationships with mangers and colleagues a lot harder.

Of course discrimination can and does occur but having that as your starting position is probably not as helpful as approaching  the workplace with the idea that ‘something awesome might happen’.

I actually had my epiphany while revising the employment chapter. The first thing I did was change my thinking around the concept of ‘talking about your autism / disclosure’. In the past I would have talked about how telling your manager you are autistic might be a good idea for how it could enable you to be ‘out’ at work and access workplace adjustments and so forth. This time I added that the ‘disclosure’ conversation could be a great opportunity to showcase your particular skills to your managers and proactively explain how any workplace adjustments you need are low cost and easy to implement. Talking about the employee or job seeker’s autism can be a big positive and does not necessarily need to be something to ‘manage’.

It interests me that for so many years I thought I was very positive around employment and focussed on all the good things we can do. However in the first draft of my chapter almost every single element was coming from the position that employment is difficult and employers are more likely to discriminate against us than not. I feel a bit ashamed to apparently be an autistic expert looking at employment and being so negative and essentially still focussing on the difficulties around autism and work rather than the positives. I am very happy to have had my epiphany and change my view. Of course discrimination, bullying and other horrors can occur but I think I have been doing all of us a disservice to advise autistic people to come from an assumption that work is almost certainly going to be discriminatory and that they have to be on their guard the whole time. Instead maybe as autistic people we can bring our knowledge and strengths to work and start from a position that we belong in the workplace and shouldn’t have to justify our existence. And to my fellow autistics I apologise that it took me so long to come to that particular realisation. A good opportunity for me to learn from an error which I suppose is the main purpose of errors.

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Why I only use five emojis – facial expressions and communication

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.

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Photo credit: David Jenkins

Just plain rude! – Encounters with thoughtlessness, invalidation and bigotry  

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.

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Are you OK? Safety strategies for Autistics

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.

My mental illness is just one of my attributes. I don;t know why I would ever feel ashamed of it