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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Managing nuance – or why I speak for some organisations I disagree with

I am an autism advocate. Much of my work I do by myself – memes, blog posts, giving advice to people who have asked for it. This work is all very straightforward. I don’t have to worry about working with others, I just say what I want to and express my views. However, a lot of my advocacy work involves other people and organisations. Presentations at conferences, media interviews, that sort of thing. Many of these organisations are ethical and positive and share my views on neurodiversity and empowerment. However, some organisations say and do things that I have strong reservations about.

I find myself feeling very conflicted at times. I want to reach the audience but I don’t want to align myself with problematic organisations. Over the years I have come up with a strategy for problematic organisations. That is to view my work with them as being for the audience rater than the organisation. I imagine that if I wasn’t speaking and no other autistic speakers were there then the audience would not get a Neurodiversity perspective. They would not have the opportunity to hear autistic voices and that would be a greater negative than me feeling uncomfortable about speaking for an organisation I disagree with. As such it is a positive that I am there, even of it makes me feel icky.

There are some organisations I will not have anything to do with as I think they are entirely toxic. Organisations like Autism Speaks who I think would seriously taint my message should I be involved with them. I often find myself having to make judgement calls about organisations and weigh up which ones I need to veto and which I can reasonably work with.

Another issue is publishers. Sometimes one of other of my publishers will publish a book which is highly problematic such as one promoting Applied Behavior Analysis (ABA). If I boycotted the publisher then my books would not reach an audience and I’m fairly certain my books are very positive and empowering. Sometimes it pays to remember that organisations do not share my experience and views and to see this as an opportunity to educate them rather than a reason to avoid them altogether.

Media outlets can also be a challenge. Over the years I have done a large number of  media interviews. You never know what sort of approach they will take and it is always stressful doing interviews. But once again it is a positive to share my views and I am happy that they have asked an autistic advocate to be part of the program rather  than – or in addition to – an allistic commentator. 

It is a fine line that an advocate walks and I accept that I may get it wrong at times. My primary responsibility is to the audience and to making sure that they get a Neurodiversity perspective. I aim for my work to be driven by a message of positivity and empowerment. 

We live in a world of nuance and subtlety and the autism world is no exception to that. It would be nice to be able to always make clear cut decisions but the world doesn’t work like that. My work puts me in a place of nuance quite frequently. As an autistic, nuance is not my favourite thing and I would much prefer clear answers but it doesn’t work that way. As such I need to make judgement calls about my various involvements and hope I get it right while being aware that there is every chance I will get it wrong. This is probably why I like the things I do by myself best – give me a meme or a blog post any day!

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On being an anomaly. Or how autism saved my life

I am by anyone’s estimation something of an anomaly. An ex-prisoner who has become a career public servant, a many times published author and community leader. An autistic and schizophrenic person who owns property and has featured on a large number of media outlets around the world. I should have died dozens of times over but didn’t. I am, to put int mildly, highly unlikely.

People often see autism as only a negative but this isn’t what I see – not in the lives of others but particularly not in my own life. Autism certainly played a part in some of the challenges which threatened my life but that was often more in relation to the attitudes of others around my autistic characteristics. For example I was bullied mercilessly at school pretty much from start to finish but the bullying was the problem rather than my autism. In a world where people were treated with kindness and respect it wouldn’t have been an issue. Likewise the criminal partner who ushered me into the darkest period in my life was only able to draw me towards him due to the fact I was lonely and longed to be accepted. I was so desperate for approval and companionship that I overlooked my partner’s negative behavior. I was vulnerable and he took advantage of me. In a world where vulnerable people were supported and cared for rather than exploited I would not have had this problem and would probably have avoided five years of drugs and prison and being victimised relentlessly. 

So what about the life-saving stuff? Well one thing which helped me survive in the world of criminals and drug addicts was masking. I’m not saying masking is a particularly useful quality but in my situation it enabled me to get by and avoid violence on several occasions. It did mean that when I got away from that world of drugs and crime that I needed to work out my character and decide what attributes I wanted for myself which was actually a very positive thing. Another element related to autism which helped me survive in those dark times was my love of music. I spent most of my time in prison in the management unit which meant I was mostly by myself. Music was my company. I recorded a number of tapes from the radio (yes young people, we had cassette tapes then!!)   Music was my friend and it kept me going.

Another time when my autism saved me was in my determination when I eventually wanted to change my life. In the lead up to the millennium I decided I needed to escape the world I had been inhabiting for the previous few years. I decided that the new millennium should equal a new life for me. I was released from prison in February 2000 and I was determined to stay in the world of free people. I was sent to a therapy course and I used my focus to get as much help as I could. I remember making lists of the reasons I didn’t want to go back to prison and reasons I liked being free. At this point in my life I was an institutionalised recidivist who most people had written off as a hopeless case. I had major mental illness issues and was considered incapable of being part of society. The people thinking that evidently didn’t have any understanding of just how determined I was.

I finished the therapy course and decided to enrol in university. I had realised that I wanted to be ‘ordinary’ – to have a professional job, a mortgage, an education and a suit. I didn’t tell anyone of this intention as I realised they would doubt me but it kept me going. In fact I had all of those things within eight years of making that resolution. 

My autism gave me a number of useful attributes – motivation, determination, honesty, creative talent (I completed a bachelor, honours and masters of Fine Art). When the time came for me to apply for my ‘ordinary’ job (a graduate role in the Australian Public Service) I had quite a unique approach, I realised that the public service doesn’t usually hire people with criminal histories but I also realised that I would be a very proficient public servant and I would probably enjoy the work. I realised that if I applied and they said no then things would be exactly the same as they were before I applied. There would be nothing lost. My honesty meant that I was upfront about my activities in the late 1990s at the earliest possible stage in the process. When I was offered the job provisional on a medical and a police check I provided a document listing what happened in the past and why it would never happen again. I provided character referees and a copy of my recently-published autobiography. The department conducted a review and decided to employ me. I am fairly certain that my autistic honesty and openness secured me my job. I am still in the service thirteen years later. 

Thers days I don’t have to look too hard to find my autistic characteristics doing good things for me. Life is very different now to what it was 20 years ago. Back then everything was loaded and things could have gone wrong at any point with disastrous consequences. I am grateful to all those elements that make me who I am and have enabled me to overcome extreme challenges successfully. I see my autism as something which has the potential to help or hinder, largely dependent on others’ attitudes and behaviour. 

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My name is Yenn. I am non-binary, autistic and proud 

In 2018 I came out as non-binary. In 2019 I changed my name to Yenn, mostly due to my gender identity. When I came out a number of trans and autistic friends said I would find out who my friends really were. They were 100 per cent correct. I was surprised at some of the people who rejected me and also surprised at some of the people who were respectful and inclusive.

Coming out was a liberation for me. My trans identity is a huge part of who I am and I am happy and proud to be non-binary. However, some people were not inclusive or respectful. I got relentlessly trolled on YouTube when I posted a coming out video diary. I had people tell me my identity was a mental illness. I had some people question on identity because I wore a dress and because I was part of a women’s exhibition. There is nothing quite so invalidating as having people tell you your identity is wrong!

One thing which I – and probably all other trans people – experience is being misgendered. Misgendering is when people refer to you by the wrong pronouns. I use they / them / their pronouns and the number of people who get it wrong is immense. In fact the vast majority of people get it wrong. I never know whether to correct people or not as mostly people do it accidentally and often they apologise – although not always. There is a vast difference between intentional and accidental misgendering. Actually when I first came out the worst culprit at misgendering me was me! I had been she / her for 43 years so it took a bit of getting used to! Misgendering is not nice though. I don’t think many cis gender people quite understand the impact of misgendering. To me it feels like being called the name of someone from my past that I don’t like very much. Conversely it is such a lovely thing when people get it right. Very respectful and decent. I wish misgendering wasn’t such an issue though. 

The other thing is my name. I have been Yenn for a while now. Many people only know me as Yenn. I love my name and changing my name has been a really positive change in my life. I feel comfortable and confident with my correct name. Some people still get it wrong though, including the publisher of one of my books and Australian Amazon! Most people have been fine with my name change though, including my parents who I actually thought would really struggle with it, given that they gave me my original name! 

I struggle with some of the discourse around trans identity and autism. Recently a well-known clinician has come out with some very unhelpful thinking about autistic kids not being able to know their gender. I find this really disappointing but those attitudes are sadly prevalent throughout society. These attitudes are so damaging especially when they are levelled at trans autistic kids. I should say though that people can change their attitudes around gender diversity. I had some very negative attitudes around my gender from one autism world public figure but over time they changed their views and we are now connected online and they are very respectful.  

There are studies that show that autistic people are over seven times more likely to be trans and gender diverse than allistic people. That is a lot of trans autistic people! I am not sure why so many of us are trans. I have heard it said that autistic people are less likely to conform with societal expectations but I am not sure if that is the reason. Whatever the reason, there are a lot of us. For me coming out was a total liberation. A lot of trans people have gender dysphoria but not everyone. I don’t think I have gender dysphoria so finding and embracing my non-binary gender was just a lovely additional aspect to my identity. I am very proud of who I am. I love being non-binary. Coming out changed my life in so many ways. It is just beautiful. 

Here is a video of a webinar I was part of talking about autism and LGBTQIA+ issues for Aspect. https://vimeo.com/433812449 

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