Supporting each other through stress, whatever the cause 

At about 10:00 pm last night I called two friends – one right after the other. I was in a highly stressed state. I thought my hot water service was broken as the fuse switch had flipped twice and I had run out of hot water. Many people would find this somewhat stressful particularly on a weekend before an interstate trip. For me this anxiety was heightened many, many times. Home maintenance issues are by far the most stressful thing I experience at the moment. More stressful than Mr Kitty being unwell or issues with any of my work. I don’t fully understand why that is but I suspect it relates to fear of the security of my home. I spent many years homeless and living in supported accommodation before I moved to Canberra in 2007 and then bought Whimsy Manor in 2008. 

I love Whimsy Manor but when anything goes wrong – or appears to – I am thrust into misery and terror. This has been the case since I moved here. It has nothing to do with monetary issues or anything else remotely practical but it is very, very real. Last night I thought I smelled smoke coming out of the cupboard where the water heater was. I wasn’t sure of this but it seemed pretty convincing. Knowing how my mind works in time of stress I thought I should call a friend and confirm if there was an issue warranting immediate attention before called the fire brigade! Both of the friends I called were very supportive and understood how this issue was such a big one for me. One friend came right over and told me there was no smoke in my cupboard.  I sort of believed this but slept with the door to the kitchen – where the water heater is – closed and took Mr Kitty into the bedroom and got out his carrier in case we had to make a quick exit. I left the bathroom light on and set my alarm for 6am too! It actually seems to be the case that the water heater is OK and the fuse box had the issue as I now have hot water and am feeling a little foolish. I thought this was a great example of how to manage stress – and particularly supporting someone else to manage their stress.

Stress and anxiety are different for every single person. There are some things which almost everyone finds stressful. Common stressors are things like moving house, starting or finishing a job, having a serious illness – either your own or someone close to you, bereavement, serious illness or death of a pet, a relationship ending – those sorts of things. Most people will recognise these as stressful but for many people – and often for autistic people – our stressors can include some atypical things, such as home maintenance! One of the worst issues wth having unconventional stressors is that other people often don’t recognise on any level how serious these stressors can be. They might think ‘I don’t worry about that so when would anyone else?’

Some of the things people might find stressful that others may not really understand include:

  • Sensory issues especially if they are somewhere the person needs to spend time regularly such as home or their workplace
  • Interpersonal issues – often finding a person difficult, abusive or unpleasant but who nobody else can see an issue with 
  • New situations of any description, even ‘positive’ ones
  • Something which brings up traumatic memories which others are not aware of, e.g. an activity (sports etc) 
  • Any number of specific situations which ‘shouldn’t’ be stressful in the eyes of others but are, such as my own anxiety.

Being highly stressed about something others do not see as warranting that level of anxiety can result in a sort of invalidation, often unintentional, where the response we get is nowhere near commensurate with our stress level. An unsupportive response will most likely come across as unhelpful and dismissive. It also tends to increase the stress level even more as people feel that they can’t even get support from a friend! 

One issue that I have around this is that I have downplayed the extent of my own anxiety when speaking with others as I thought it was somehow silly to worry about hings which nobody else really worries that much about. It is actually impossible to get help if you don’t explain the magnitude of the problem or downplay what the problem is. In the last couple of years I have explained my issue and how even though it may seem to be an extreme reaction to a relatively minor problem, the stress is very real. I wish I had always done this because it makes it exponentially easier to get a suitable response form people.

Some thoughts to help support someone going through high anxiety – from any cause:

  • Even if it doesn’t seem worthy of worry to you, somebody’s anxiety is very real to them.
  • Validation is  great gift. Just saying to someone something like ‘I recognise that this is really awful for you. How can I help?’ can make a massive difference.
  • Remember that it may have been very hard for the person to share how anxious they are with you. They might feel a bit silly or ashamed to be anxious about something that they apparently ‘shouldn’t be worrying about.’ Acknowledgement of their very real anxiety can help the person a lot.
  • Be available where you can. Having friend to talk to about issues can be extremely helpful.
  • If in doubt of what the problem is, ask.
  • Asking your friend ‘What would you like me to do?’ can be helpful. Suggestions about a plan of action can also help to but be aware that your friend may decline your suggestions and that is OK. 
  • If you feel things are beyond your capacity to assist with or are worried for your friend’s safety, there are counselling services offered by Lifeline or Beyondblue in Australia and similar services in other countries. There are also mental health crisis services.  will add a caveat, particularly for autistic people, that these services can be helpful but sometimes can be a bit patchy in terms of how helpful they are. However, if you are concerned about a friend’s safety then it is advisable to contact either their doctor / health practitioner or a crisis service if it is after hours.

Your help and support can make all the difference. I know my friends’ support last night was invaluable.

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Activism, advocacy and influence (or why I keep finding myself educating people…)

This is a post about activism and advocacy and working to make the world a more inclusive and respectful place for autistic people and anyone who faces discrimination and prejudice. This is A Big Job and thankfully lots of people are doing it. Many people making a big difference are best described as activists. They call out injustice and make a public stand to make a difference. They are vitally important and I have endless respect for this means of bringing about change. However this is not really ‘me.’ I approach the issue from a different viewpoint. Anyone working in this space needs to have a form of advocacy which reflects their personal style and strengths. I am not an exception to this, and my way of trying to make the world a better place involves  being more of an “educator” than an activist.

There is something of an irony that I choose to come from the angle of ‘educator.’ “I shouldn’t have to educate people”…  is a phrase which I hear a lot from fellow autism and disability advocates and activists, referring to the perceived need to teach people lacking knowledge about our experience and address their ignorance. As a sentiment, this is absolutely right and understandable, but I find it impossible to actually implement this as a strategy in my own life. A lot of my work involves ‘preaching to the choir’ – that is talking about autism with people who share my views or have a similar view. However, quite a bit of my work is with people who, for a variety of reasons, have a very limited understanding of autism.

Today I was talking to someone I know peripherally who was talking about a friend of theirs who has an adult autistic daughter. ‘She has no empathy at all…’ the person said to my slightly horrified face. I felt in this situation – as in many, many other similar ones – that if I didn’t say something then that person would be unaware that it is very rare for autistic people to genuinely lack empathy. Putting on my ‘I’m going to be patient and explain this’ “hat” meant that I got a chance to talk about some of the misconceptions around autism and empathy with this person. It was a hard thing to do to hide my impatience and frustration but (hopefully) my bit of education was a positive thing which might change this person’s views.

I have similar conversations every week. I am told I have a reputation for being very patient in my interactions with people who don’t know much about autism and / or who hold views which are strongly contrary to my own. I am actually not patient in my thinking at all. I find ignorance extremely frustrating and at times very hurtful. Where I exercise patience is in my delivery. I am quite good at hiding how bothered I am in the interest of not ‘losing’ someone who I think actually needs the benefit of an autistic viewpoint – or several. To my mind, the people with the most influence on autistic people – such as parents, educators, clinicians or employers – need to understand the sorts of things which might be self-evident to many autistic people but not to everyone. I take the view that we are all on a different journey and we are all at different points on our respective journeys. Others do not share my views or experience so I tend to think giving them a hard time for simple ignorance is likely to be counter-productive as how can I expect them to see things from the perspective of MY journey without explaining it to them?

I have had experiences in the past where I have come in hard with some people and instead of seeing it as a helpful discussion to support them to interact and understand autistic experience better, they have actually viewed it as an attack. Not only did that mean I ‘lost’ those individuals in terms of my work but I imagine it might have put them off listening to other autistic people as well. I do seem to be very good at explaining concepts to people that they haven’t come across before. I always joke that I would make a very good politician with such a skill! I spent many years of my life living among people who were more than capable of physical violence in response to any kind of dissenting acts or views so after that, being ‘diplomatic’ usually comes fairly naturally for me. 

I think some people in the community might think I am a bit ‘soft.’ I don’t think I am. I am comfortable with my autism world ‘politics’ and feel that my work benefits other autistic people and hopefully the wider world through doing so. I am reasonably confident that my actual message is perfectly good and reflects my passion for change and the need to make a better world.  However, I am not someone you are likely to find metaphorically ‘storming the barricades.’ There is a reason for this. I have a theory about the approach of activism and the approach of influence. Both of these are essential elements of conveying a message to my mind and often the message conveyed is very similar. However, influence and activism form two complementary but very different approaches. Activism in its purest sense involves delivering a message, stating a position, usually in a way which challenges the status quo and which is about getting message out to the world that things need changing. To be clear, the world needs activists, and activism is central for meaningful change. I do a little bit of that but I also do what I see as influencing, which better reflects my personality and skill set. Influencing is more about, well, educating people, I suppose. In my experience, it involves a lot of patience and listening to viewpoints which are quite upsetting at times. It is not for everyone. I often feel like I am a lightning rod for ignorance about autism with people wanting my opinion on something which is highly problematic and which I have to address.  I have to very consciously put aside my anger and frustration while speaking to the person in order to drive a message which will hopefully result in them seeing things differently and altering their view.

Of course there is a line with this at which influencing needs to give way to activism and holding people to account. For me that line is usually where ignorance moves into hostility and / or ableism. And being aware of when it is necessary to take someone to task rather than explain things to them is always tricky. It is one of those ‘rule of thumb’ things which always get me a bit perplexed.

So I guess I sit in an odd space with this approach to advocacy. It is very stressful a lot of the time and I often wish I did things differently but I also think my approach has hopefully brought some people into a more positive and helpful view of autism. I really wish I didn’t have to educate people but I think I sort of picked that as my approach. The really lovely thing – and this occurs maybe more often than you might think – is when people come around to the sorts of views I promote and thank me – and others presumably – for putting them on a different path which results in them being more inclusive, respectful and helpful to the autistic people in their life and to all of us.

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A response to hatred

This is a very personal post on a very political topic: bigotry and hatred.

Yesterday I was on the receiving end of some horrific bigoted ignorance – a person peripheral to my life who had no idea of what autism is or indeed that I am autistic, telling me a number of things they believe about autism – ‘I am sorry people are autistic.’ ’I am OK. I am normal’ and the clincher ‘That’s like people who are criminally insane.’ I am someone who knows what they are doing all the time but at that point I honestly didn’t know what to do. The stress and horror that coursed through me in that conversation was at a very high level. I somehow managed to remain a responsible human being and told the person to go away but I think if I hadn’t done that I may have done something I regretted.

The situation was made worse by the fact that I am fairly certain the person  wasn’t being intentionally hostile, those were simply their thoughts. It had a big impact on me. I am still struggling. I am a very out loud and proud autistic person. I consider myself quite hard to bully because I am so happy with who I am. I embrace my own identity. I have a strong and deep sense of autistic pride. I like myself. But when it comes down to it, it seems I am just as susceptible to hatred as anyone else. 

I have had a few thoughts on this incident which I thought it might be helpful to unpack as they relate a bit more broadly than my own sense of affront, hurt and anger.

  • I was upset because the person was being mean to me. However, I think I was mostly upset because there is a huge power imbalance at play. When the person made those comments it disempowered me and made me feel small and insignificant. I think the main reason the comments had such a big impact was that they confirmed a whole lifetime where similar things have been said. It was an individual confirming societal oppression of autistic people and Disabled people more broadly.
  • The comments did not happen in isolation. They built on feelings I have had since I was being bullied in school and taken advantage of by creepy men in my teen and early adult years. The comments expressed the message ‘you do not matter.’
  • I started to doubt myself as soon as I could process what had happened. Was I being sensitive? Am I a ‘snowflake’? It was like I was gaslighting myself. I think many of us do this when faced with similar experiences. We may have been taught to doubt ourselves from a lifetime of people questioning our experience or playing ‘devil’s advocate’ (And I’m not sure why the devil needs an advocate. I think he is probably quite capable of being an a**hole without help from humans!)
  • While the person who harassed me presumably didn’t understand what they were doing, that is almost worse than deliberate hostility. That a person was so ignorant of something and having no concept that those words might be very hurtful and offensive … well it concerns me what they might say to other people! And the impact on me was the same – or at least similar – to if the comments had been deliberately hostile. If someone accidentally shoots you, you are still shot.
  • When the anger had subsided and the stress clicked in I sought out support from autistic friends – that sense of ‘tribe’ is especially important when we are attacked I think. 
  • I had feelings and thoughts which were very concerning – impulsive, negative, self-destructive thoughts. These were all directed at myself and not the bigot. Blaming oneself when someone else wrongs us can be a sign of a lifetime of invalidation. In the heat of the moment I was angry with the bigot but when that subsided it just enhanced a self of self-hatred I was unaware I still had.

Bigotry is far from harmless. I have had trolls online in the past say ‘Jeanette is big enough and tough enough to deal with this.’ They are wrong. These kinds of  hateful thoughts break us a little and the more they happen the more we can become broken. It makes us mistrust others, like ourselves less. Fighting bigotry, learning to love ourselves for who we are, others offering genuine support and respect can help address this but it is never ever OK to belittle and insult someone based on them being autistic – or belonging to any other group.

‘This mask doesn’t fit me’

There is a hashtag – and a movement of sorts – going around the autistic community at the moment called #TakeTheMaskOff. It is based in the knowledge that ‘masking’ for autistic people (ie being less ourselves, less noticeably ‘autistic’ in our expression, when around others and in situations like school or work or relationships with neurotypicals) is damaging to our mental health, invalidates us and eats away at our sense of who we are. I completely agree with these concerns. Masking takes a huge hit to our identity and psyche but even so, many of is do it. With all the significant negatives it entails, masking is seen by many of us as less traumatic than the judgement and prejudice we know from experience that  we will experience as autistics in the wider world – otherwise why would we do it? 

I long for a world we we can actually feel comfortable being our wonderful autistic selves without fear of bullying, discrimination, unemployment, isolation etc. A world with no perceived need to mask our autistic expression is basically the end outcome I intend for my advocacy to contribute to bringing about.

I had some interesting thoughts around my own advocacy work, identity and masking. I spent from ages 11 to about 40 masking, trying to be ‘acceptable’ to others and squash down my identity and how I wanted to express myself. It took a huge toll. It demonstrated my lack of value for myself, my fear that nobody would like such a ‘weird’ person as myself. This fear came form very real personal experience of bullying and being victimised. Thankfully I am now out loud and proud autistic, brightly coloured and big and bold. I wear lots of colourful clothes and jewellery, have several coloured wigs and other essentially ‘me’ accessories. I give keynotes in rainbow boots and cat t-shirts. I laugh a lot and am one of those extroverted types who seem a bit less common in autistic circles. I admin my cat’s Facebook page.

I worry about my expression on occasion. Sometimes I feel like everyone else is doing ‘serious’ advocacy and I’m just getting around in rainbow wigs and things and not really doing much to help anyone. I was featured in an article summing up an autism conference  that I was a speaker at a few years ago. When the journalist wrote about all the other speakers, they mentioned the topic of their presentations and some key points of their message. However, when they got to me they had a picture of me, evidently delighted to be on stage with purple hair. The information readers got about my talk was this picture and  the text ‘And Jeanette Purkis gave a very entertaining talk.’ They didn’t even say what I was speaking about. 

This is difficult. I don’t want to be known for the form not the content but my colourfulness and extroversion is not an act or gimmick. It is me being me. I discovered a few years ago that for me at least, life looks better in shiny, bright and sparkly. My Autistic Pride is bound up in my ability to outwardly express myself the way I choose. I wear rainbow and sparkly things to my public service job, I dress up at home when the only person who will see me is Mfr Kitty and I suspect he doesn’t care what I look like as long as I provide car food and cuddles. Why do I do this? Well mostly because it makes me really happy. I think that my style is the opposite of a mask. I am not covering up myself and hoping no bigoted ableists will be horrible to me. I am expressing myself with pride and celebration. It has taken me a long time to realise this. I used to think that maybe I don’t take my role as an advocate seriously but I suppose the opposite is true. The other lovely realisation I have had is that my advocacy work introduced me to a lot of other autistic people and our community. It also introduced me to a lot of new thinking and views on empowering autistic  people to be our true and so often incredibly thoughtful, kind and beautiful selves. Through this I felt that I was being supported and encouraged to be my true ‘me’. So the autistic community and my advocacy work have helped me to take the mask off and I hope that I am reciprocating that for others through my work. That is a great thing, a great strength.

And while most of the time I am not wearing the mask, I still do it on occasion, not intentionally and often not consciously but it happens. The forces at play in society and in our individual lives that drive us to mask are very real and can be very dangerous. Taking off the mask is a key part of loving and valuing ourselves and having the self-esteem and confidence to be who we are, seeing ourselves as we are – valuable, worthy, legitimate just as we are. I am glad that many autistic advocates and activists are focussing on this.  We have the right to be ourselves.

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The trouble with feedback: – Responding well to criticism

I have a Masters degree in Fine Art. This means I spent a lot of time having fellow students and lecturers telling me why they did – or didn’t – like my work. In six years of study I never got used to this. Criticism is a difficult thing for many of us to handle. It doesn’t even have to be negative criticism – even constructive feedback can result in anxiety and feelings of inadequacy. There are a number of reasons why this may be the case.

Autistic people often receive a lot of very negative, blaming criticism and judgement. Even small children can experience this. It can come from variety of places – schoolyard bullies, family and other adults focussing on our apparent failings, even when they are not failings at all but just something which looks  bit different like stimming. In fact, the undercurrent which so many people have in their thinking which views autistic people as broken or deficient can result in a lot of very unpleasant criticism as we grow up and throughout our lives. Sometimes criticism is given in front of an audience (such as in the classroom). This can compound the stress significantly! We may become incredibly keen to please others and win approval almost as if to address the pervasive criticism we may have had for years.  Any kind of negative response may mentally catapult us back to times when we received harsh criticism simply for being ourselves.

We are often criticised for being sensitive about criticism!  

We can become very anxious in situations where we know we will receive criticism – performance discussions in the workplace are a key example of this. Our sense off objectivity about our performance can be limited, especially if a manger doesn’t give much feedback. While many neurotypical employees interpret no feedback as being a good thing, autistic people may benefit from a bit more reassurance along the way. If this hasn’t happened, the performance  discussion can be terrifying. It can also be terrifying foR some people who have received positive feedback from their manager.  Being in a situation  where the entire purpose is to to provide criticism of one sort or another can pose a huge challenge for autistic people. 

Facing criticism is one of those perfect storm of anxiety situations as fast as I see it. It can bring back sometimes traumatic memories, it is anxiety-provoking and can lead to catastrophising. it is made far more stressful by things like perfectionism and fear of failure and it can heighten sensitivities around appearing ‘different’ and being judged and criticised for that. Often a huge worry around receiving criticism is  how the person receiving it will respond. Will it trigger a person  to say or do something they regret? If it is at work, how will the relationship with their manager be if the discussion goes badly? I always get transported back to art school and being up the front of a lecture theatre full of my peers and teachers and being hounded about my latest project – which I was presenting. iZ received quite harsh criticism. I was absolutely devastated. Like many others, I do not experience criticism as being about something external to me asn feel like others are attacking me. I felt like everyone in that room hated me and thought I was a complete loser. I now know that wasn’t the case but it was a pretty unpleasant experience and one which has followed me for the past 14 years since it happened!

Some things to consider around this include:

  • Constructive feedback can actually be a really useful thing. It can help you to improve your understanding or performance and to change your thinking about a topic in a positive way.
  • The moment when constructive criticism occurs tends to feel very  raw and unpleasant for everyone and particularly autistic people. But in time it often sort of mellows out to a point where it can be useful.
  • There is vast difference between constructive criticism and negative or attacking criticism. It can be difficult to tell one from the other. As a rule of thumb, constructive  feedback is not personal. It is about what you do not who you are. This is a good way of ascertaining if it is helpful or not helpful feedback. Unhelpful feedback is usually personal critical of you and your character and other attributes (e.g. appearance etc).
  • To help determine what is constructive feedback and what isn’t. I tend to go off the relationship wth the person giving the feedback. If I experience them as aggressive or a bully I will be wary of their comments but if it is someone that I have a respectful relationship with I will be more open to criticism from them. It can help to view constructive criticism as a gift, helping you to do your work (or whatever else)  better.
  • Because anxiety around receiving criticism is anxiety, things which helps address your anxiety and self-doubt are likely to help you manage receiving criticism better. As with most things I find sense of pride in who you are can help address feelings of inadequacy which can drive issues around receiving criticism.
  • The response you have to constructive criticism and to attacking, negative  criticism should be very different. Even of constructive  criticism is hard to take on board, if it comes from a place of support and wishing to engage you to do things differently, that is something to be positive about,. I often thank people who have stretched me through their constructive feedback. If someone is attacking you then you would be better off defending and protecting  yourself as much as possible and if you need to set boundaries with the person doing attacking then work to do that.
  • Many people – autistic ands allistic – have similar concerns around experiencing  criticism. You are far from alone and it is completely understandable to feel that way. 

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