D in this post is for two things – the DSM 5 and Deficits. Sadly they are closely related. If you haven’t come across it before, the DSM 5 is the diagnostic manual which includes the clinical criteria for autism – among other things. And deficits – well, in the context of autism, deficits is all about focussing only on what autistic people can’t do and limiting their inclusion through this. The DSM 5 basically lists a range of things autistic people can’t do or struggle with and has no reference to any of the positives of being autistic. It is quite a depressing read!

It is tricky. The reason it is tricky is that many autistic people actually do need supports in order to navigate the world. To access these supports you have to prove how disabled you are. Basically you have to tell the organisation providing the funding how much you can’t do in order to get supports and funding. 

Sadly this goes against everything advocates like myself think is good. While I also don’t like the idea of ‘autistic superpowers’, focussing on deficits is very harmful. You get parents telling their autistic kids how amazing they are and then they sit in a funding meeting and hear their parents say how difficult their life is and everything the kid can’t do and  what they struggle with. This is understandably very confusing! 

The thing is that while we can often do amazing things we also often need support. I don’t know how to reconcile this issue. I don’t use the ‘D’ in ASD (autism spectrum disorder) because I do not think I am disordered, but I do need to access support as well. I think the world needs to be more aware of the complexity in this space. I am autistic and the things I do change the world but I am also autistic and life can be challenging. These things can occur at the same time. I think a lot of people are not very able to keep conflicting thoughts in their mind. It is often seen as ‘either / or’ when in fact there is a complexity there.

So please don’t tell me everything I can’t do but also please don’t assume because I have prodigious skills in one area that I don’t ned help and support. Simply viewing autism through the deficits lens is not going to help anyone – and it would be nice if the DSM 5 also focussed on the positives. 

Content warning: Reference to bullying

When I was a child I got bullied. A Lot. One of the really unhelpful things the adults around me said was ‘sticks and bones will break your bones but names will never hurt you’. This was complete crap and the bullying I endured for years damaged me in a number of awful ways. 

The words we use are powerful. The words we use demonstrate very clearly how we feel about a topic, situation or person. When we talk about disability and mental health, language becomes extremely important. Ableist language is a big problem but it is everywhere. Just think of the term ‘crazy’. Its meaning relates to mental illness or psychosocial disability and it is a very negative word. However ti is used all the time to describe a range of negative things. This equates mental illness with all things negative. Even I use it from time to time – it slips out – and I think that is because it is pretty much ubiquitous. Some offensive and disrespectful language is almost universally acknowledged  as being offensive. People using those terms are aware that what they say is inappropriate, disrespectful and hurtful but they choose to use it. However, the term ‘crazy’ seems to be said with no understanding that it isn’t OK. People just say it. 

I have schizophrenia and there is a range of negative language around that – ‘’schizo’’ ‘psycho’ that kind of thing. Even the word psychotic is used incorrectly as a term for violence. Psychosis does not mean violence and when I am psychotic I am usually just totally terrified and feel like I am in a waking nightmare. I don’t need disrespectful and offensive language on top of that really!

In the autism and neurodiversity space there are also inappropriate and disrespectful words used to describe us. We need to remind people when they use this kind of language that it is not OK. It is hurtful and projects an ableist and hateful view. 

Language can be extremely hurtful. Some people seem to think I am being the political correctness police when I raise these things but I am not. The language we use is so important and we need to be aware that while sticks and stones can break our bones, offensive, hateful and judgemental language can break our brains and make us doubt and hate ourselves. It doesn’t take much to change how you speak and what language you use but it can make a big difference to how people feel about themselves and others.

You have probably heard the phrase ‘different not less’. It is often used to describe neurodivergent / autistic people ad how we experience the world in a different way to others and how our brains are wired differently and that being OK – or actually a really good thing. I subscribe to that view. Nobody’s neurology is better – or worse -= than anyone else’s. All our brains are wired differently and that is absolutely fine, OK and wonderful. If you said to me ‘Yennski. If you take this medication it will cure your autism’ I would decline, emphatically. And I know a lot of other autistic folks who would decline too. For many of us we see our autism as being a key part of our character and personality. It can define how we see the world. It means that many of us have intense passionate interests that we become experts in and which give us immense joy. We are often honest and loyal and kind. We are often creative and imaginative. There are so many famous autistic people in all areas of life, particularly in science and entertainment but everywhere really. And it isn’t just famous people. There are autistic people everywhere in the world, in every occupation and every kind of relationship, family, interest group…. Everywhere!

Of course there are challenges around autism. Lots of these relate to sensory issues, overload, burnout and facing discrimination from others which can make life hard. I was once described as being ‘blissfully autistic’. I think this was meant as a criticism. It came from one of those people who think autism is all bad and autistic people in need of somehow being fixed. I actually took the blissfully autistic label on board and made it a positive. Why shouldn’t I be blissful? Of course life can be hard and autism isn’t all fun, and excitement and fulfilment but then being neurotypical comes with its own challenges too. And in my experience the worst parts of being autistic I have experienced have been due to prejudice, bullying or people not making spaces accessible for me. That isn’t autism’s fault. It is the fault of a world that is often ableist.

Please don’t try and fix me. I don’t need fixing. And neither does any other autistic or Neurodivergent person. We need loving, understanding, kindness, respect, a listening ear and friendship. There is no room on that list for fixes or cures. Our divergent brains are valid just as they are. 

I am going to be doing a Yenn’s A-Z – a series of mini blog posts featuring things of interest and importance to me starting with each of the the letters of the alphabet. Today is A and for me, A is for advocacy.

Advocacy is something I am expected to know something about, being an advocate and what not!  Advocacy can mean a variety of things to different people. My own advocacy journey started in 2004 when I met the person who would become my mentor: Autistic author, advocate and legend Polly Samuel. Around the time I met Polly I had been encouraged to write my life story by lots of people. Why wouldn’t I? My history had prison, bullying and art! It was bound to be engaging and entertaining. I actually thought writing my life story would be just awful and I would be baring my soul to the world. Yuk! But Polly convinced me to write my life story, saying it would be for the parents of autistic young people who ended up in the criminal justice system. Of course this was my own parents so I wrote the book and never looked back!

The publication of my first book thrust me into the autism self-advocacy space. I was expected to have opinions on things related to autism. I felt like I didn’t know anything useful but did my best to answer questions and offer helpful advice. 

Over the years I have become known as an autistic advocate. It is funny because my style of advocacy reminds me of Polly’s when she was mentoring me! I feel like my advocacy is about impacting individuals and about story-telling and narrative. There are so any different kinds of advocacy and they often complement each other. In Australia was have a large number of autistic advocates now which is fantastic. My contemporaries are people mike Dr Wenn Lawson and Dr Emma Goodall and Kristy Forbes to name a few. There are many younger advocates too – Summer Farrelly, Chloe Hayden, Sam Rose, Shadia Hancock and others. And there are people doing effective advocacy with little or no ‘profile’ as well. I think when it comes to advocates, the more the merrier. My own advocacy is all about sharing things I have discovered, promoting positive self-knowledge and pride for autistic people, being there to support others and working with other advocates, allies and organisations to try to make the world a better place.  

I am very glad Poly convinced me to write my book and that this resulted in me becoming an advocate. I love my advocacy work but I am delighted that there are so many other advocates who can do similar work. I mean who knows, I might want to retire one day! 

And if you want some practical advice on self-advocacy, Barb Cook and I have this book on the topic:

Autism and Neurodiversity Self-Advocacy Handbook 

Content warning: Sexual violence

For the past few years I have identified as Asexual – or ‘Ace’. I knew for a long time that my experience of sexual relationships and sex was different to others’ but had no concept of my identity. Even as a teenager I knew that sex was not for me. I had never been presented with an option for sexuality that suited me. I thought for many years that I was Lesbian. To my mind women were less icky than men – although still icky! After a very unpleasant sexual experience with a man at the age of 16 I figured the only option for me was being Lesbian. Nobody had ever told me there was an option other than gay, straight or bi so by that understanding I must be gay.

As a twenty-something I sought a pattern, not for sex but for companionship and because society expected me to have a partner. Even in relationships I had very little sex. I was threatened by sex and found it to personal and invasive plus I was very averse to bodily fluids. Tongue kissing was something which revolted me but which others seemed to enjoy. 

Not that long ago I came across the sexuality that is Asexual. I finally knew that my sexual identity was a ‘thing’. It took me a while to see it as part of my identity but when I did it was a good thing. One thing which concerned me was that as an Autistic Ace I occupied the position of an unhelpful  stereotype. There are often assumptions that all Autistic people are Ace. While this is not true, I didn’t like being part of a stereotype and felt uncomfortable being an Autistic advocate who is Ace. More recently I have added my asexuality to my list of things I have a sense of pride for. Being Ace can be really difficult and there can be discrimination and even violence levelled at Ace people. I am now a proud Ace and very happy total about my sexuality with others. And I am far from a prude. I am actually very sex positive – I just don’t want anyone doing whatever with me!

I like to imagine that autistic communication is similar to a cultural or linguistic difference. Here’s how it goes…

Imagine you move to another country. You learn the language and the customs but it never really sits well with you. You manage OK – hold down a job, have some friends, but you never really feel at home. Then imagine a friend from your home country arrives. You speak your language with them and you know all their ‘in’ jokes. Their customs are your customs. You love spending time with your compatriot and feel 100% comfortable in their company. It is nothing like interactions from those in your adopted country.

Now imagine there are two people – one speaks German and the other speaks French. Most other people speak German and when someone speaks French they assume that they are speaking German badly rather than a totally different – and equally valid – language. This causes no end of misery and confusion for the French speaker who not only struggles to understand the German speakers but also struggles to make themselves understood!

Both of those scenarios relate to differences between Autistic and neurotypical communication. As autistics, we are like expatriates in a strange land. We are like French speakers when everyone else speaks German and has no idea that French is a seperate and equally valid language. However, autistic communication is definitely different not less, as these examples demonstrate. Neurotypical communication is not preferable or superior to autistic communication – it is simply different. We don’t need to be forced to speak neurotypical. Instead we need to be accepted and understood with our autistic communication and language.  These examples also demonstrate why so many autistic people love autistic space (where most or all people in a group are autistic). And how nice is it when neurotypical folks recognise this and try to learn the autistic language and customs!   

I posted a Yeme once which said ‘If an autistic person says something is too loud, too bright or too smelly then it is.’ I stand by this as sensory issues can be a huge challenge but one which many people have no idea are a ‘thing.’

Autistic people often have sensory sensitivities. We tend to experience sensory things to a significantly greater degree than others. For me I have both positive and negative sensory experiences. The negatives ones are related to noise (unexpected loud noises, balloons popping and things beeping are a big issue). I also struggle with certain smells. Many autistic people are sensitive to smells that other people find pleasant, like perfume. I don’t mind perfume but toilet smells, red wine and the smells of foods I have a strong aversion to are a big problem. I also struggle with the sun! I absolutely love Brain Cox’s videos but he is alway using the solar flare effect and it makes me want to throw something at the TV! It render the show almost unwatchable at times.

Anyone who follows me regularly will know about my positive sensory things… anything shiny or sparkly makes me squee with joy! I love sequins and shiny jewellery, foil and glitter, coloured lights and colourful art and anything else bright coloured and shiny. Sensory joy is a wonderful thing.

Most people who have trouble with sensory things can find themselves being invalidated and dismissed, which is never OK. Sensory issues form part of accessibility. Similarly to the need for physical accessibility, workplaces and buildings need to be accessible in terms of sensory issues. When people are designing spaces they need to talk to people with sensory issues to ensure buildings are accessible for people with sensory needs. 

While sensory processing issues are not the exclusive domain on autistic folks, they are something most of us experience, so supporting sensory inclusion and accessibility is a great way of supporting autistic people. Remember, just because it isn’t real for you does not mean it isn’t real form someone else.  

The statement ‘Oh but we are all on the spectrum somewhere’ is a big problem. I was giving a presentation yesterday and one of the organisers said this to me. I gently advised them that this is in fact was not true and that many autistic people find that attitude dismissive, unhelpful and offensive. The person apologised and told me how happy she was that I was presenting at the event and thanked me for my insight. Hopefully she won’t say it again but as micro-aggressions around Autism go it is a pretty prevalent one.

‘We are all on the spectrum somewhere’ simply isn’t true. Autism is a specific condition. You either are or are not Autistic. If everyone was on the spectrum somewhere there wouldn’t be a spectrum because we would all be Autistic. We would just call it “being human”. 

The sentiment ‘oh but we are all on the spectrum somewhere’ minimises the experience of Autistic people by essentially saying “Oh but everyone’s a bit like that…” It is a really unhelpful attitude. Would you tell a Deaf person “Oh everyone’s a little bit Deaf”? Or a trans person “Everybody is a little bit trans”? Of course you wouldn’t so stop saying it about Autism! I will always challenge people when they come out with this one. It usually stems from ignorance more than intentional ableism but still needs to be challenged. 

I recently lost almost 40kg. People keep telling me how wonderful I look and complimenting me. While this is nice it has me thinking about weight and how we tend to view body size in our society. The idea seems to be that being fat always equals being unhealthy plus there is a lot of judgement involved in relation to weight and body image. There is often an assumption that being overweight is the result of being lazy or ‘letting yourself go.’ In my experience my weight gain related to trying to be healthy rather than unhealthy as it was the result of taking medication to manage my schizophrenia. If I didn’t take the medication I would ahem been a lot less healthy than if I did! I wonder how many larger people there are who take psychiatric or other medications which make them gain weight? 

Another issue around weight and attitudes around it involves gender. Women seem to be more criticised around their weight than men, although men face can judgement too. When actor Rebel Wilson lost a lot of weight recently media outlets were more focussed on it than they were about a hostage situation Rebel was impacted by at a similar time to the weight loss. Apparently weight loss for a female celebrity was of more importance than them being victimised overseas. Why is weight loss even noteworthy? If someone in the public eye did something else to boost their health is would not be newsworthy but losing – or gaining – weight is apparently worthy of headlines. 

Larger women can also be on the receiving end of some predatory behaviour. I knew a man in the past who was in the military in another country. He told me that his comrades and he would go to a bar and try to pick up the largest woman there and take them home. At the time he told me this I myself was quite large and was horrified by what he said. He lost my respect at that point but apparently this sort of thing goes on all the time. It is not at all OK to objectify anyone like this.

The reason I lost weight was part due to style part due to health. I was never ashamed of being large but it had some health implications and I couldn’t fit into the sorts of clothes that I wanted to. I do not judge people on the basis of their weight and I did not judge myself. It makes me sad when people get caught up in thinking about weight – particularly others’ weight. For me I feel healthier, have more energy and can do things I struggled to do and I am proud to have been able to lose weight as it was difficult but I loved my large self and I also love my smaller self. 

I think that weight is something of a feminist issue and I think that thoughts and feelings around weight can be dangerous. Eating disorders are among the most dangerous medical conditions out there. I don’t think an eating disorder is just about weight on its own but I do think a lot of the societal expectations and stigma around being larger can contribute to mental health issues including eating disorders. It is not ever OK to fat shame people. Even the notion that weight and health are linked can be problematic. Larger people face a lot of discrimination and judgement related to their weight apparently being detrimental to they health but in fact being overweight does not always have an impact on health. And other activities which are bad for health like smoking or excessive alcohol use do not seem to be judged in the same way that being overweight is. And some people are more susceptible to weight gain and even of they don’t eat a lot of sugary or fatty  foods they gain weight. I am one of these people due to my medication for schizophrenia. If I ate what many thin people eat I would be very large so in order to stay the weight I want to I need to be very aware of what I eat. Most people do not  seem to be aware of this.

Being large should not be a reason for judgement or prejudice. We are all different body shapes and sizes and that is OK. Being healthy is important but weight doesn’t always mean anything in relation to health – you can be large and healthy or small and unhealthy. When I was 21 I had a major drug issue. I was tiny – 45kg. This was probably the most unhealthy – physical and mentally – than I have ever been before or since. Now I am 92kg and feel really good. Also another person’s weight is really nobody else’s business. So reserve the judgement as  it doesn’t help. I have been subject to fat shaming in the past and it was very unpleasant and mean. I will end with a typically Autistic Yennski response to a thoughtless comment… When I lived in Melbourne in my late twenties I got on a tram and a woman asked me ‘when is your baby due?’ I said ‘Oh, I’m not pregnant. I’m just fat!’ The woman didn’t know what to say and I thought it was totally hilarious! It’s true. I wasn’t pregnant, just fat and that was perfectly OK. 

I imagine anyone who reads this blog knows I am non-binary  / transgender. My gender – like most people’s gender – is a key part of what makes me who I am. I am out loud and proud and I love my gender identity. It is one for my favourite Yennski attributes. I have been out since 2018. I changed my name in 2019 and have not looked back since!

Sadly not everyone shares my enthusiasm for my gender identity. The world is full of nasty bigots who would hate and invalidate me for the crime of daring to exist. As soon as I came out I was faced with a barrage of bigotry and people judging me. I lost a number of ‘friends’ – but thankfully I gained some new – and more genuine – friends. 

Most people aren’t bigoted but many need some education. An example is my pronouns. I have they / them pronouns and have had these since about five minutes after I came out. My pronouns denote how I want people to understand me. Pronouns are very important but some people struggle with this. In fact I struggled with this at first. For about three months I misgendered myself more often than not because I had she / her pronouns for the preceding 43 years and it took some getting used to! Misgendering  falls into a few categories, There are people who always get it right. I have a friend like this and I am yet to hear her misgender me. Then there are people who try but get it wrong more often than not and then give a genuine apology. Then there are people who get it wrong and treat me like I am being difficult and then there are bigots who intentionally get it wrong and tell me that they won’t ever use my pronouns. The most common one is the one where they get it wrong then apologise. I don’t mind this at all. As I said I got it wrong myself for a long time so I understand. I will now gently remind people if they get it wrong which usually goes off well. I got so frustrated a couple of years ago that I very briefly considered changing my pronouns back. I then realised that doing this would be negating my identity and I would hate myself forever if I did this. So I am left  with reminding people not to misgender me!

One issue I get is where people assume I am female. My gender expression is slightly more feminine than masculine but I don’t think I look somehow ‘girly’. I think a lot of people have two ‘boxes’ in their mind for gender – the boy box and the girl box. Everyone apparently has to fit in one of other box, even if they don’t – like me. So people squish me into the ‘girl’ box because that is the only option available in their mind. It means I face a lot of erasure and get called ‘lady’ of ‘girl’ – which I utterly hate! I want people to understand that there are definitely not just two boxes for gender and that I am DEFINITELY not a girl / woman! I guess I should be grateful that these people don’t attack me physcially. I have a number of trans friends who face violence from strangers due to ‘looking’ trans. People make me very angry and sad sometimes.

My name is a key element of my gender identity. I changed my name in early 2019 and changed it legally a couple of months after that. When I came out in 2018 I wanted to change my name but I couldn’t come up with a suitable name. I decided to leave it up to my subconscious to find a name. Some months later and I was at work. The name ‘Yenne’ came into my mind. I wrote it down and thought it wasn’t quite right. I then wrote ‘Yenn’ and knew in that split second that this was who I was. When I unpacked it I realised that to Yen in poetry is to yearn. Not only am I a very self reflective person, I am also a published poet so thought this was fantastic. It also had a few letters that were also in my dead name so ti was a nod to the past. And it was a genderless name in Australia. I love that if I am in a doctors office and the doctor hasn’t met me that they come out and look at everyone thinking ‘who is Yenn?’ because it is not immediately obvious who I am! I really dislike my dead name. It is not me. It was never me. I am, was and always will be Yenn. I embraced my name instantly. Even my parents get it right and they gave me my dead name! People often say ‘nice name’ to me and it is a nice name.

I am a reasonably high profile transgender person in the neurodivergent community which is mostly quite lovely. Other transgender autistic people thank me for my work and tell me that things I have written have helped them, which is lovely. There are a lot of neurodivergent transgender people. I go to a trans meetup in Canberra and one time the convenor asked people to raise their hand if they were neurodivergent and most of the attendees raised their hands! We are a community and it is a community I feel proud to belong to.

My name, my pronouns, my identity, my community? These are a liberation. I am free.