‘RESPECT THE STIM!’ OR WHY I DETEST ‘QUIET HANDS’

I was on one of those online creative websites selling people’s designs searching under ‘neurodiversity’ when I saw a t-shirt which said ’Respect the stim!’ I thought that was pretty awesome and it got me thinking about stimming – how it is an activity which has a lot of meaning ascribed to it and how it relates to ideas of autistic pride and yes, respect.

So what is a ‘stim’? If you google it you will get this: “Self-stimulatory behaviour, also known as stimming and self-stimulation, is the repetition of physical movements, sounds, or words, or the repetitive movement of objects common in individuals with developmental disabilities and most prevalent in people with autism spectrum disorders.” Sounds a bit pathological doesn’t it? 

In fact, for autistic people, stimming can be a huge positive – a way of managing anxiety and stress and feeling good and also expressing feelings like joy or excitement. Stimming tends to be something enjoyable. I often find myself stimming and I am unaware of doing it .

Stimming can be seen as political. Children who subjected to Applied Behaviour Analysis and related kinds of  ‘training’ are often punished or sanctioned for stimming. Stimming is often an activity that makes us look visibly ‘different’ to the allistic folks. ‘Therapies’ (for want of a better word because they are far from therapeutic) like ABA seem to be all about making autistic people look ‘less autistic’. Apparently looking autistic causes bullying. Actually, what causes bullying is, um, bullies. The best way to address such poor behaviour as bullying people for being different is not forcing the autistic child go look more outwardly allistic but instead to make an environment – and world – for them where autistic people are respected as we are. It is not a good way of addressing bigotry to make divergent people look less divergent.

For autistic kids an adults, being forced not to stim has a load of negatives attached. One of these is that the child will probably question themselves and may well start to hate and revile who they are. Trying to look allistic when you are not is like studying for an Oscar-winning role – it is always going to be an act, no matter how proficient at it you may be and it will be hard.  Squashing down who you are is not a good idea  and leads to things like self-hatred and self-criticism. It goes against who you are. It is cruel. Far better to encourage autistic people to be proud of themselves and stim freely.

The pathologising of autism is often bound up in responses to stimming. That horrible term ‘quiet hands’ is often levelled at autistic kids when they are flapping their hands in joy or excitement. To me ‘quiet hands’ is telling kids to ‘stop being yourself. You are embarrassing me. Act normal’. These are not sentiments I even like to reflect in this blog and certainly not something autistic children should be told.

Stimming can be a great joy. I have a lot of my own stims – clicking fingers, saying some phrases in certain situations, wiggling my fingers and playing with fibre optic lights. When I do these things I feel completely free to be me. But it is a relatively recent thing for me to stim publicly and some of my stims even now happen behind closed doors at Whimsy Manor. That judgement at ‘looking different’, the years of bullying I endured because I didn’t quite look or act like the other kids: these things did some major damage to my sense of who I am and it still lingers many, many years afterwards.

I tend to think stimming should in fact be encouraged, providing it is not harmful (and a small proportion of stims can be harmful, in which case some harm minimisation techniques may help). Stimming helps express a number of things from joy and excitement to addressing stress and anxiety and soothing when encountering a new or otherwise scary situation. If others have an issue with the stim, that is not the fault of the person stimming. In this instance, teaching autism acceptance and respect and working  to address judgemental attitudes is much more useful to my mind than stopping someone from stimming.

Stimming can be a deescalation strategy for overload for some people. Imagine how frustrating and upsetting it would be to do some deescalation when getting overloaded, and then be told not to do that anymore meaning that the person has a big meltdown and then gets punished for that! I think that kind of situation happens far too often and comes from a place where autism is not well understood and autistic people – kids and adults – are not respected.

My friend, autistic artist Prue Stevenson has done some great work on stimming, including this excellent project called ‘Stim Your Heart Out.’ You can find it here: https://www.stimyourheartout.com 

So yes, respect the stim I say! Now I must go buy the t-shirt…

Managing depression

CW: Depression / suicidal ideation

I have schizophrenia. My psychiatrist told me that this basically trumps any other mental health nastiness I may have, at lest in clinical terms. So actually I have an anxiety disorder and a mood disorder as well but these don’t turn up on my list of diagnoses due to the fact that, well actually I don’t know. May psychosis is viewed as more interesting than anxiety? Not sure. Anyway what I am trying to say ifs that I have a mood disorder and it can be extremely unpleasant and at times life threatening.

I do not have unipolar depression. I get manic quite often too which is why I say a mood disorder rather than depression. Mania can be difficult and result in reckless spending and damage to my reputation but it is far preferable to its dismal little cousin, depression. I made a Yeme (Yenn meme) a while back saying that depression shouldn’t be called a black dog because dogs are nice. I suggested that depression is a black slug which seemed much more fitting. Slimy and gross as opposed to canine qualities like being loving and playful. My black slug comes to darken my door on reasonably frequent occasions. 

I am autistic and one of the mental health conditions autistics often have – including me – is something called alexithymia. This is also known as emotion blindness. It definitely doesn’t mean I lack emotions but that it is hard or impossible for me to articulate or notice them. I remember being in hospital once talking to the psychologist. I was extremely depressed and was crying the whole way through the consultation. She said ‘you are really depressed’ but I had no concept of it and was surprised when she said that. I still struggle to notice when I am depressed. I have to observe what is happening in my life. Am I not tidying up? Am I struggling to find motivation? Am I having intrusive thoughts about self harm or suicide? Is everything an effort? If the answer to some or all of these is yes I know I am probably depressed.

Depression is often misunderstood. Some people think you can somehow will your way out of the dark place. Like you can ‘snap out of it’. It doesn’t work that way. And each person’s depression is different so what helps me may not help anyone else.   Medications are often used to treat depression but these can be tricky and especially for autistic people who often respond to meds in an atypical way. A medication which works really well for one person may have no impact on another. Most people have to try a few different meds until they get some relief. I remember in the past trying about fifteen different antidepressants and none of them worked. This is probably because of the manic episodes I have as I am now on a mood stabiliser which is actually a lot more effective. Meds aren’t a magic bullet though and many people still get depression symptoms when on meds. The meds can help but they aren’t always 100% effective.

There are some lifestyle and psychological strategies which some people find helpful for depression. These include things like diet and exercise, mindfulness meditation and using strategies like ‘opposite action’ where you do the opposite of what your mood wants you to (e.g. getting up and having a shower when you feel like staying in bed all day). Distraction is also a strategy that lots of people find helpful. That is when you focus on something engaging – preferably something you enjoy doing – which can take your attention off feeling miserable. Different people find strategies which work for them and you can pick up new ones as you move through life. Depression is not a character flaw and it is not somehow your ‘fault’. It is a medical condition just like diabetes or heart disease and no amount of giving yourself a hard time about it will make it go away. In fact that will probably make matters worse. People with depression – and particularly autistic / Neurodiverse people with depression – need support and kindness.

Proud to be different 

Content warning – bullying 

On Thursday I wore a rainbow suit to my corporate job. Ostensibly this was to mark Wear it Purple Day (which was on Friday but I work from home on Fridays). My colleagues thought my suit was wonderful and I had a really nice day. One of my colleagues who was working from home but had seen my photo of me in the suit expressed how wonderful it was that I was so comfortable that my workplace was supportive that I felt able to wear my rainbow suit. She was 100 per cent right. As the day went on I also realised that in my high school days I did everything I could to avoid looking different but as a forty-something autistic advocate, author and public servant I was not only unafraid of being different, I was actively displaying my difference and even taking delight in it.

My most recent blog post was about autistic masking. This one sort of is too I guess but from the other perspective of being happy and proud to be just exactly your own sparkling autistic self. When I started high school I almost instantly became the least popular child there. Kids in my year level hated me and kids in every other year level hated me too. Anyone who tried to befriend me would also be bullied, leaving me pretty much friendless. This was quite different to primary school where I got along quite well with most of the kids. In high school I quickly learned that I was weird and wrong – why would I doubt this as everyone told me it? I wanted to be less different as I figured people would hate me less if I was more like them. I didn’t know what it was that made me different so my strategies to fit in were all met with failure. I cut my hair differently – still hated. I wore more fashionable clothes – nope. Still hated. I even changed how I spelled my name for some reason but sadly that also had no effect on the bullying. In the end I gave up and resigned myself to being highly unpopular. 

When I left school I still wanted to fit in and be accepted. Even when I was in my thirties I would wear nondescript clothes and try to act like the people around me. I was scarred by school bullying to the extent that I thought being visibly or noticeably different would result in my being ostracised even many years after the bullying stopped.

What changed? I think the difference in my acceptance of my difference happened when I became an autism advocate. In 2012 I met a young autistic man who sparked my passion for advocacy. He had been disabled by others’ low expectations of his capacity. I realised that many other autistic young people were probably in a similar situation so I set about doing my small part to change that. As I embraced advocacy I embraced my own autistic identity. I met autistic people who became friends and role models. I realised how much I loved colour and shiny, stimmy things and my Yennski style was born. Outwardly I expressed my individual identity. I wore a rainbow wig, I bought shoes and jewellery with lots of character and I dyed my hair blue – or some of it anyway. I learned that my quirky style made other people happy and even helped enable others to express their own individuality too. It makes me really happy to express myself the way I do.

When I was a child my difference was squashed out of me. I was bullied and threatened into hating myself but as an adult I have learned to embrace my sense of style and through it my funny, quirky Yennski self. When I was trying to fit in to placate the bullies I was miserable but when I started expressing myself the way I wanted to the opposite was true. I also realised that if you hate yourself and believe what bullies say it is quite easy for bullies to grind you down and discriminate against you. I have learned that being proud of who I am and being happy to express my individuality and sense fo self actually makes it harder for people to bully me and discriminate against me. If someone had given me a hard time for wearing my rainbow suit on Thursday I would have responded with confidence and understood that it was them with the problem, not me. But when people bullied me as a kid I would have been more likely to never wear the outfit resulting in insults again and feeling like I didn’t deserve to exist. 

I’m delighted to be proud of my difference and I am grateful to the autistic community for supporting me to express myself in a quirky and proudly different way. Different is definitely not less. Different is resplendent and beautiful.

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Autism and masking – why the world needs to change

I recently posted a meme about autistic masking which proved very popular so I thought I should unpack some of my thoughts on the topic in blog form. Masking is a very common experience for autistics. It is when we mimic the actions and mannerisms of neurotypical / allistic p[people in order to be accepted. It is not a good thing but many of us do it as a survival mechanism.

I used to mask a lot. When I was at school I was visibly and obviously different. My interests were not the same as those as my peers. While they were seeking out relationships and first kisses I was fascinated with American president Ronald Reagan and the cold war! I was top of the year every year despite never once studying for an exam. I was honest and awkward and brilliant. Needless to say I was subject to a lot of bullying. I knew I was different and that I was hated for it but I had no idea how to be like my allistic peers. I tried all sorts of strategies to appear more ‘normal’ but none of them worked. I hated school but more to the point I hated myself and my weirdness. 

I left home at 17 and moved to Melbourne. By the time I finished school I was a very passionate Trotskyist, attending protests and selling socialist newspapers every weekend. Through the socialists I met an older man who was very dangerous and scary. We started a relationship. I was naive and it took me a long time to figure out that my new partner was bad news. By the time I figured this out I was in too deep. I resigned myself to a life as his partner. This didn’t happen as we were both arrested for a crime we committed. We both went to prison and this is where I learned to mask. 

When I arrived in prison I realised it was just like high school – same dynamic only the bullies in jail would kill you rather than knock your school folder out of your hands. Remembering how different I was in school and how that caused me a lot of grief I set about learning the rules in jail. I became very adept at this and soon had everyone – and myself – convinced that I was a scary criminal and drug addict. I was successful at masking – very much so. I continued being a criminal for some years, fitting in with my peers like never before.

When I was 25 I realised that I wanted a different life. Drugs and crime was a pretty desperate life and I wanted something nicer. I had a lot of guilt and shame about the things I had done in the past few years and felt like I was a terrible person. I also realised I had lost any sense of who I was due to all my masking. What should I do? What I did was decide upon what kind of person I wanted to be and go about creating that. I observed what I thought were good qualities in others and set about learning how to do them. I had an unparalleled opportunity to be a decent person and put my dodgy past firmly behind me. I consciously stopped acting to fit in and instead tried to be my new, more positive self. I wanted to be a person who didn’t have to act in order to fit in. I wanted to stand up proudly as my true self.

I now am almost 100 per cent masking free. An autistic friend recently told me I probably don’t get burned out because I am not spending my energy on masking. She was right. Masking is exhausting! It can also be seen as the opposite and the enemy of autistic pride. When we value and like ourselves and have a sense of pride we are less likely to mask. I wish we didn’t need to mask. I wish we as autistic people were all proud to be who we are and that the world valued and respected us as is, without any masking or camouflage.

A couple of years ago there was a social media campaign called #take the mask off. This was great but a few people pointed out that it is actually very difficult to just decide to take the mask off. It isn’t really something you can just decide to do and then make it happen. We mask for real, material reasons. We mask because we live in a world that doesn’t value, like or respect us a lot of the time. Masking is not a flaw – it is a response to a hostile world. To really be able to take the mask off we need to change the world. Advocacy and activism are ways to help autistics take the mask off. It should not just be down to individual autistic people to do it! Taking the mask off requires a movement and a fair degree of changing the world. 

I am delighted that I was able to take my mask off as it has been life changing. I hope things change so we can all take the mask off as we are so beautiful and amazing as our autistic selves, just as we are, no need for masks.   

And I should note that I am not talking about the use of masks to address COVID19 – if you are able to, definitely wear one of those when you go out!

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Whimsy Manor – a lesson in anxiety

On Friday settlement went through for my former home, the somewhat amusingly titled Whimsy Manor. I owned Whimsy Manor for twelve years, most of which were filled with a sense of having compromised and being very anxious around maintenance issues. I bought Whimsy Manor in 2008 because I wasn’t assertive. I moved to Canberra in 2007 and shared a house with someone who turned out to be a horrible bully. If this happened now I would simply say ‘screw you, I’m moving out’ and go to another rental but then I was afraid of the bully’s reaction. I figured I had to buy a property to escape from her without upsetting her. At this stage I had only been working full-time for less than two years and didn’t have a lot of money for a deposit. I had two criteria for a property – it needed to be near a bus route and cheap. I only looked at four properties and realised what was to become Whimsy Manor satisfied with my strict and limited criteria. I didn’t like it and there was evidence of water damage in the bedroom and kitchen but I figured I had no choice. It was bullying and being controlled or buying a property I didn’t really want. I bought the property.

At first things went sort of OK. I didn’t like my property but it hadn’t done anything horrible yet. Then in 2009 the flat upstairs had a leak form their shower. The damp came down my kitchen wall and my anxiety went through the roof. This was not helped by the fact that the owner of the flat above was reluctant to fix it. 

Finally that issue got fixed but soon afterwards something worse happened. My shower was leaking through the wall. I saw water marks in the bedroom. I called a plumber and they said my shower would need replacing. I didn’t have a lot of savings so this was a big deal. I got quotes for showers but I didn’t know what I needed. My anxiety was off the chart. When the tiller and plumber finally did their job one of them made a mistake. They both blamed each other. I didn’t care who was responsible but I did care that there was a huge hole in my bathroom where the shower should be for some weeks. Not having many close friends that I felt comfortable asking to use their shower I washed with a bucket of warm water, soap and a flannel. I started to catastrophise that the apartment would be destroyed and I would be left with a mortgage on an uninhabitable property. The anxiety was constant. For me anxiety had an additional little quirk. If I get really anxious over a period of time I develop psychosis. This is what happened in 2010. It happened gradually so I didn’t realised that I was in trouble. Eventually I ended up in hospital. I was unwell for another three years, 

Then something happened which was a gift from the heavens – Mr Kitty came into my life. In early 2013 I asked a friend who was a cat rescue woman to find me a kitty. She did and Mr Kitty became my chief therapist and best friend. He was an indoors only kitty so when I came home from work he would be there for me with purrs and smooches. A transformation happened. I started to call my compromise apartment with the leaks and water damage Whimsy Manor. I put art up all over the walls. The apartment became a friend and a good thing. Mr Kitty was the essence of Whimsy Manor. I avoided taking time off work for mental illness for another six years.

Late last year I was talking with a levelly friend. She put an idea in my mind. It was both a good and a bad Idea. The good bit was that I could sell Whimsy Manor and buy a nicer one. The bad bit was that as Whimsy Manor was over 40 years old it would probably soon need ongoing maintenance. At that moment I decided to buy another one. I knew I needed a new kitchen as mine was original with the unit and one of the doors was missing. I researched kitchen renovations and booked a company to do it. This was very stressful but I was determined to be OK. It would have been fine but for the kitchen sink. The kitchen was a non standard shape and I needed to order a special sink. The plumber assured me it wold be there but the day they did the renovation it had not arrived. I was horrified. What is the taps somehow came on and there was no sink? It would flood the kitchen! I was very stressed. Added to this I was having trouble at work and I had just started on ADHD meds which people with schizophrenia – like me – are not recommenced to take, even if my psychiatrist thought it was OK. The outcome was that I spent the next eight months very unwell and in hospital and residential services. I didn’t work for six months.

I was still determined to sell Whimsy Manor and buy a new one. Possibly ill-advisedly, when I was about to be discharged from hospital, I contacted a real estate agent. He advised me to get the Whimsy Manor painted and carpeted and then put it on the market. He recommended living in a rental wile this was happening so that is what I did. I moved into the rental a week before I was discharged. My anxiety about Whimsy Manor decreased through my not living there. Tragically Mr Kitty passed away in February. This left a big void at Whimsy Manor. It lost all its character. I just wanted it gone. The last vestiges of homeliness had gone with the passing of its most important inhabitant.  

My experience of putting Whimsy Manor on the market was amazing. It was advertised on 26 June and settlement was on 14 August – just six weeks later. Selling a property is very stressful. The day of settlement I was filled with extreme anxiety but I’m feeling much happier now. I am relieved that it is gone. I feel like Frodo after the One Ring was thrown into Mount Doom!

I don’t know if when I buy a new house I will be so anxious. I am anxious about my rental so possibly it will be similarly challenging. It makes me realise I need to use strategies to manage anxiety rather than avoiding any stressful situations. I will be buying a more recent apartment so maintenance is likely to be less of an issue. I am actually looking forward to finding my new home. I think buying will be less stressful than selling. Selling property has lots of variables, most of which are outside the seller’s control. I have had a very stressful six weeks and am very glad Whimsy Manor is no longer mine.  And yes, autistic people with schizophrenia can buy – and sell – property. I am grateful to have my lovely job which gives me the opportunity to buy property. Not a day goes by when I’m not appreciative of that. 

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Ditch the expectations

I was facilitating my most excellent autism women’s group – also welcoming of non-binary, trans and intersex folk – and got in a conversation with one of the attendees. They are relatively recently diagnosed as autistic and were inspired by me selling my property. They said something similar to  ‘I never realised autistic people can buy property but seeing you selling your apartment made me think maybe I can buy somewhere too’. This conversation got me thinking about autism and what we are ‘supposed’ to do and not do. 

I am 46 and don’t drive and a lot of the reason for that is people’s negative views about my capability to drive coupled with my anxiety. Nobody encouraged me to learn to drive and lots of people said I couldn’t so I never learned. Maybe if people had more confidence in me I would now have a licence.

This is a big issue for autistic people. There is so much negativity and deficits thinking around our capability that we often just don’t do things even if we would be really good at those things or we really want to. This is not only the case for kids, it relates to adults too. 

Autism tends to be viewed as being entirely negative by society. Autistic people are told what we cannot do and as a result it often means that we don’t even try. I have tried to ignore this in my life but it is really pervasive. I am lucky in a way as I wasn’t diagnosed as autistic until I was 20. I did a lot of things that if I had a diagnosis I think I would have been discouraged from doing. I moved out of home at the age of 17 and got a job shortly afterwards. I think if I had a diagnosis I would not have been allowed to leave home and live independently. I don’t think on reflection moving out at 17 was necessarily a very wise move but it did give me a lot of confidence and skills that I have used in later life.

In addition to autism I have schizophrenia. I also have a very difficult past which includes a lot of trauma. When I was 26 I decided to make some major changes in my life. I was a recently released ex-prisoner and was living in supported accommodation. Few people had any faith in my capability to do anything much but I wasn’t listening to those attitudes. I decided to go to university with a view to finding a graduate job, moving out of public housing and buying my own property. I think a lot of people would think this life trajectory would be impossible but I achieved it, moving to Canberra for work in 2007 and buying Whimsy Manor in 2008. I achieved the supposedly impossible and I did it by not listening to the negativity – be that my own self-talk or the negative messages from others. 

I think expectations and assumptions can be so unhelpful. When disability / neurodivergence / disadvantage is thrown into the mix people can doubt their capability so don’t try anything challenging even when they really want to do it. Society needs to change and those negative expectations need to be ditched. Why shouldn’t an autistic person buy property or drive a car or go to university? One area where this deficits thinking can become extreme is around parenting. People with disability are so often discouraged from having kids and when they do have kids their parenting is called into question. This is so unhelpful. I know a load of autistic and neurodivergent parents who are fantastic at parenting. In fact having neurodivergent parents for neurodivergent kids is often a big positive. Attitudes around this need to change. I absolutely love my autistic mum and when I was growing up she was always explaining the world that I found so confusing. When I was having a hard time as a young adult she was there without judgement and with support and understanding. I wouldn’t want my mum to be any way other than being her beautiful autistic self. 

I think we need to be aware of the messages we give autistic people both as individuals and as a society. I want a world where autistic people don’t doubt our capability and avoid doing things we want to because of expectations and assumptions. I am not that remarkable a person but when I set the assumptions and expectations aside I managed to complete a masters degree, get a professional job and buy – and sell – property. If I can do challenging things that I want to, I think anyone who wants to probably can too – with the right encouragement and support. If all we are told is what we can’t do than that message will become true.

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Me with my 2016 ACT Volunteer of the Year award, shattering some expectations.

Why the concept of intelligence is problematic

Intelligence is a very loaded attribute. Intelligence is a particularly problematic concept in the autism and disability spaces. 

Firstly intelligence takes a number of forms. There is ‘IQ’ type intelligence, emotional intelligence and social intelligence. There is also resilience and wisdom gathered through experience. None of these attributes make a person any more or less but they do lead to judgement. We live in a society which largely privileges intelligence and views it as a quality which makes some people ‘better’ than others.

Intelligence is an attribute, like having blue eyes or liking the colour purple. But unlike those attributes intellect has a loaded meaning. High intellect is considered a positive quality and people judged as intelligent are considered somehow better than those with lower intellects. There are lots of insults related to intellect – ‘stupid;’ ‘dumb’ ‘idiot’ are all ableist slurs based on a low intellect. This is not OK and intelligence really is just another attribute. It could be considered that being intelligent may make it easier to navigate the world but that is not necessarily true. People with a high intellect can be bullied for it – I was – and can also worry a lot about life.

The measurement of intelligence is fraught, especially in the context of disability. IQ tests are extremely problematic. They are culturally loaded but they can also be extremely misleading for people who use communication methods which aren’t verbal speech (alternative and augmented communication, or AAC). I have a friend called Rosemary who runs a service for people who use non-speech communication. Rosemary has done a lot of work with education departments because the IQ tests used to determine whether someone goes to mainstream school or not do not accurately measure the capability of people who use AAC. Basically the tests are only accurately representative of intellect for those who use verbal speech so when they are applied to someone who uses AAC the results are misleading. When Rosemary used a different IQ test with these kids – one that more accurately measures the capability of people who do not use verbal speech – the change in results was dramatic. Children who had initially been assessed as having an IQ of under 60 points now had a revised score of average and in some cases above average IQ. So administering an inappropriate test robbed these children of the capacity to demonstrate their actual capability and meant in some cases that they were sent to the wrong school.

A lot of autistic people are ‘twice exceptional’ meaning they have a high IQ and a disability. This group can struggle with attitudes of others based in the idea that being intelligent is ‘good’ and having a high IQ should make life easier in all other domains. This in fact is far from the truth. The ‘high functioning’ label can be applied meaning they miss out on support and services they may need. Then there are autistic people who get the ‘low functioning’ label. This group are viewed as having low intellect and low capability. In my experience the people who get a ‘low functioning’ label are usually people who use AAC. Our bias as a society towards spoken communication means those who use communication methods other than speech are somehow considered lesser. This TED talk by author, advocate and AAC user Tim Chan covers off a lot of these issues: https://www.youtube.com/watch?v=Woy-XzC-UVs 

It is very easy to fall into the trap of judging people by intellect or using ablest slurs related to intellect.  I would say work to check this as it makes life harder for everyone. See intellect as an attribute and nothing more. It is such a loaded thing but it doesn’t need to be.

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Privilege and intersectionality

Viewing the world through the lens of intersectionality – a concept coined by Kimberle Crenshaw – shows us that some groups of people have privilege. The categories of those who have privilege include men, cis gender people, heterosexual people, white people, wealthy people and able-bodied people. Chances are you will belong to at least one of those groups. In contrast to privilege, there are groups which experience discrimination and disadvantage. These groups include People of Colour, Disabled people, women, trans and gender diverse people, poor people and those who have a non-heterosexual sexuality. There are other groups which face disadvantage – this is not an exhaustive list. Privilege means that you will have less – or no – barriers to succeeding in domains of life like work and education. Being privileged does not mean your life will be free from hardship. It is more a structural issue than an individual one. So a white, cis gender, able-bodied, heterosexual man will most likely be free from discrimination in employment but this does not mean he won’t have any challenges in his personal life.  

Like most of us, I belong to a few disadvantaged groups and a few privileged ones. The privileged groups I belong to are white people, middle class people and  Australian citizens. I have always hated my privilege, even at a young age I didn’t like the advantages that came with the privileged groups I belonged to. I used to feel very guilty about being white or being wealthy. Recently I learned that guilt about your privilege is actually really unhelpful. It doesn’t achieve anything in the struggle to make a more inclusive world and it commits the cardinal sin of diversity – that of making it ‘all about me’ as a privileged person.

So if guilt is unhelpful, what should we do about our privilege?

I think the first thing is to acknowledge and understand the privilege and what it means. Learn about intersectional issues, listen to the stories and experiences of people in disadvantaged groups. Become aware of your privilege. Also become aware of your biases. Often our biases are unconscious but we can still observe our attitudes and behaviour and call ourselves out if we see any biases. One way of noticing bias is looking out for if you are stereotyping and making assumptions about a particular group. 

Another thing which isn’t helpful around privilege and bias is the attitude of ‘but I’m always nice’. Nice will not save the world. I mean being nice to people is certainly not a negative thing but if we think we are saving the world by having a friend from a diversity group that we don’t ourselves belong to then we have got something wrong. Certainly be nice but that is the very first step on the journey to my mind. It also should be a given ro respect people from any group.

Don’t hate your privilege but do check it. I had a friend say they would have had housing issues if their parents hadn’t purchased a house for them! That is a situation where checking of privilege would probably have been appropriate. Checking your privilege can become a useful habit. Being aware that not everyone has the same opportunities that you do is a good place to start.     

You can actually use your privilege in a positive way as an ally. Often people in a privileged group who are not inclusive will only listen to others in their group. As an ally you can be the person they listen to and in that way you can help to change their mindset. Genuine allies are a very useful thing indeed.

I have an example of privilege which relates to the idea that people in positions of privilege don’t always have any concept of what that means. I have a friend who used to work for a company that put on events. Her manager – a white, cis gender, heterosexual, able-bodied man – gave my friend a list of speakers for a conference that he had created. My friend – a woman from a refugee background – took one look at the speaker list and said ‘you have no women here, no People of Colour…’ The manager was astounded at this perspective and asked my friend how she knew all this information on diversity.  The manager probably wasn’t being deliberately exclusionary. He simply didn’t have any experience of not being privileged. He picked speakers who were like him – a very common action from a person occupying a position of privilege.

Privilege is just part of society but it is extremely important to be aware of it and check ourselves to ensure our privilege is not causing us to be prejudiced, biased or disrespectful. I find intersectionality to be an excellent way of understanding the world, especially given that I belong to many intersectional groups and work in the diversity and inclusion space myself. However, it is a useful way of approaching life for all of us.  

Difference is a gift, diversity a treasure. Love yourself as you are - different, unique and wonderful

Managing anxiety – some strategies

Like many other autistic people I struggle with anxiety. I have struggled with anxiety for as long as I can remember. For me anxiety is mostly about worrying and ruminating. I catastrophise and imagine the worst possible outcome. My biggest fear at the moment is home maintenance, and in particular plumbing. I get so worried thinking that a minor fault will flood my house. Then when the plumber arrives I catastrophise that they won’t be able to fix it and I will never be able to use my shower again! After they leave I worry it is still faulty. I could worry about plumbing as an Olympic sport! One of the worst things about my anxiety is that I spent years being too ashamed to tell anyone that I was anxious about something that I considered shameful. This meant that I got no help for what in fact became a very dangerous situation.

For me anxiety can turn into psychosis. Apparently the brain chemistry that happens when you are anxious can trigger off the neurotransmitters that cause psychosis. This is very common for people with psychotic illnesses – like me. So when I start to get anxious I then add to the worry that it means I may get really unwell and all that entails – hospital, taking extended leave from work, lots of suffering.

I don’t just want to talk about what anxiety feels like or leads to though. I want to share some of the strategies I find effective to help address my anxiety. My strategies are drawn from a few therapy models that I have used. I think that there is value in most of the main therapy models and that people can find a range of skills useful. I know some autistic people don’t like Cognitive Behaviour Therapy (CBT) but I have found some value in CBT approaches. Therapy models really are up to the individual and what works wonderfully for one person will be totally useless for another.

The first strategy I use is a simple one – deep breathing. Anxiety is a physical, bodily sensation. It is the fight / flight / freeze / fawn response to a perceived threat and is a hang on from when we were under threat from sabre toothed tigers and the like. What happens when you are anxious is your body getting ready to cope with a threat and it is a physical thing. As such the physical act of deep breathing can help address the physiological manifestation of anxiety. There are lots fo different deep breathing techniques but they all involve consciously slowing down the breath. I find this approach very effective. I also practice deep breathing when I am not highly anxious. I find it helps with sleep and to slow me down – I am a very high energy person and am usually rushing from one thing to another.

Mindfulness. Mindfulness is a meditation technique which helps with anxiety. Mindfulness is all about being present in the moment. Not worrying about the future or dwelling on the past but experiencing what is happening now and working through that. Dr Emma Goodall has a wonderful website which focusses on mindfulness for autistic people – https://mindfulbodyawareness.com/interoception/  You can also download mindfulness apps for your phone or tablet. I recommend Smiling Mind.

Distress tolerance. This is a skill from the Dialectical Behaviour Therapy model. It comes from the premise that avoiding things which make us anxious is actually unhelpful in a lot of cases. Distress tolerance is about ‘sitting with’ difficult emotions and working through them. Avoiding things which make us anxious can be a very destructive thing as we will just stop doing a range of things that are too hard. For me I have found myself avoiding using taps which ended up being pretty restrictive! One thing you can do is gradual exposure. You start small with something you find anxiety-provoking and gradually increase your exposure until you are less anxious when you do the thing causing you worry. This is quite a challenging technique but can be very effective. It is also great for giving you a sense of mastery when you have overcome a challenge. 

Distraction. This is a skill used in many therapy models. The premise is pretty straightforward. It involves engaging in an activity to occupy your mind. When your mind is occupied it is not devoted to anxiety. I find distraction very effective but it can be hard to remember to do it when you are in the middle of fear and anxiety.

Seeking help. You do not have to go through this alone. There are counselling services like Lifeline, mental health clinics and psychologists who can help you manage your anxiety. Be aware that some clinics and psychologists could use a bit of education in the area of autism so ask around and try to find a clinician who ‘gets it’. Clinical services can do more harm than good for autistic folk sometimes! I would recommend talking to neurodivergent friends and peers to see if you can find a clinic or psychologist who is likely to be helpful.

Anxiety is a big issue for many of us, including me. The strategies I have listed don’t ‘fix’ anything but hopefully can make things a little easier to manage.

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Responding to the attacks on transgender autistic people

I am a non-binary autistic person. Non-binary identity is a kind of transgender identity. I have many other trans autistic friends and am very proud to be an out trans person. Sadly not everyone shares my sense of pride and respect for trans people. Transphobia is very, very real and many of us experience bigotry daily. Autistic trans people are often on the receiving end of bigotry and discrimination. Being autistic brings a range of additional challenges for trans people. 

There is a recent study from the USA which showed that autistic people are 7.5 times more likely to be trans and gender diverse than the general population. This statistic is borne out in my anecdotal experience too and I know many autistic people who are trans and gender diverse. Children and teens are particularly well represented in these statistics. I think this is wonderful and I am delighted that kids know their gender at younger ages. It took me 43 years to realise I was non-binary and I would have loved to know my identity at a younger age as my identity is liberating.

Sadly not everyone sees coming out as a liberation. For transphobic people gender diversity is a threat, something to be attacked and criticised. Critics of autistic trans people come from a range of quarters. I want to unpack some of the bigotry here. 

The first form of bigotry is TERFs. What is a TERF? It stands for trans excluding radical feminist and it is nasty. JK Rowling is a prominent TERF which really upsets me because I love Harry Potter and always thought the Harry Potter universe was an inclusive one but apparently not. TERFs are particularly hostile to trans women. I can never quite figure out what their issue is but I think it centres around thinking trans women are men trying to infiltrate the world of women and somehow gain rights as women. TERFs refer to trans women as men and even want to harm trans women sometimes. Basically it is a load of bigoted, harmful nonsense. TERFs make me very angry. Trans women do not have some sinister agenda. Being trans is an integral part of identity, not a conspiracy!  Trans women experience a significant amount of bigotry and discrimination. I cannot imagine anyone transitioning in order to gain perceived advantages as a woman. To my mind the TERF argument is just nasty, hostile prejudice. The fact that feminists (and it is not all feminists I should add) participate in discrimination against fellow women (who happen to be trans) is very disappointing indeed. I used to identify as a feminist in the past but now I avoid the term because I don’t want to be associated with TERFs. 

Another issue trans autistic people experience is autism world figures making harmful statements about gender identity and autism. This happened recently with a notable clinician saying autistic trans kids don’t know their own gender and are being coerced by adults with an agenda. Seriously WTF?? Autistic people spend a lot of time reflecting and questioning our identity. We are known for it. If you are singled out for being different then you are probably going to reflect on who you are. An autistic young person who is questioning their gender should be supported rather than criticised and invalidated. And it is the height of condescension to tell autistic trans people that they don’t know their gender. Instead of making these statements maybe clinicians could listen to their trans autistic clients and understand where they are coming from rather than dismissing their experience. I hate when public figures – be they fiction authors or autism clinicians – use their position of authority to spread transphobic thinking. I think these people have a responsibility to promote inclusion not division. 

The other transphobia issue is a nasty one and it involves trolling and bullying. When I was in school I was bullied for my autistic differences and also my ambiguous gender. As an adult I have been trolled for my non-binary identity. These things are extremely hurtful and can be dangerous. Many autistic and gender diverse people – in fact I would estimate possibly all of us – experience trolling and bullying and it is not OK.

I think we need to build a sense of pride and respect for trans autistic people. This involves challenging bigotry and transphobia wherever we find it. Genuine allies can help with this by calling people on poor behaviour and prejudiced or ignorant statements. Trans and gender diverse autistic people have a right to be heard and respected just like anyone else does.  

Here are some resources:

QLIfe – https://qlife.org.au 

Spectrum Intersections – https://www.spectrumintersections.org 

A Gender Agenda – https://genderrights.org.au 

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