I is for … Interoception

Many people have not come across the idea of interoception before. So what is it? Interoception is known as the eighth sense. It is the ability to feel sensations in the body. It includes things like the sensation of temperature, hunger and thirst or needing the toilet. One thing to know about interoception is that it is common for autistic people to have low interoceptive awareness.

When I was a child I had big troubles with sensing heat and cold and would wear inappropriate clothing for the weather. It took me a lot longer to toilet train than most kids. In fact it is common for autistic children to toilet train later than their neurotypical peers and when they do they can still struggle with the sensations involved in toileting. This is likely to be related to interoceptive awareness.

Another thing to know about interception is that there is an emotional element to it. The condition alexithymia – sometimes called ‘emotion blindness’ – is where a person cannot articulate or be aware of their emotions. This is common amongst autistic folks as well. I definitely hav alexithymia. It doesn’t mean I lack emotions – far from it! What it means is that an emotion needs to be pretty big for me to be aware it is happening and by the time I do it has become quite extreme.

Having low interoceptive awareness can mean different things for different people. It can impact on behaviour. If you imagine that you are really hot and thirsty and depressed and stressed and someone says or does something to upset you how much bigger your reaction would be than if you were physically comfortable and in a good mood.  People with strong interoceptive awareness in this situation may take steps to address the issues and avoid difficult situations but if you are not aware of how you are feeling then this is considerably more challenging.

I think everyone needs to know about interoception and particularly the autistic experiences around it. If you want to know more I would highly recommend reading work by my friend, advocate colleague and co-author Dr Emma Goodall who has considerable expertise in this space. Emma wrote this book on Interoception and Regulation: https://www.amazon.com.au/Interoception-Regulation-Awareness-Supporting-Connection/dp/1787757285 

H is for… coming Home to Autistic identity 

I was one of the first adults diagnosed with what was then called Asperger Syndrome in Australia. It was 1994, I was 20 years old and a prisoner. The diagnostician visited me three times to do the assessment. She said that I satisfied all the DSM IV criteria for Asperger Syndrome. I disagreed. There were reasons for this. My understanding of autism was that it validated all the awful things that school bullies had said to me. As my parents had sought the diagnosis – and arranged for the clinician to assess me – I felt that the diagnosis was my parents making excuses for my poor behaviour. I understood it to be a diagnosis of ‘nerd’ and I wasn’t a nerd. I was a big scary criminal (well, I thought I was but hindsight tells me I was masking in order to survive.) Deep down I knew I was autistic but I really struggled with it.

It was seven years after my diagnosis that I accepted I was autistic. However I didn’t exactly embrace my identity. I was happier telling people I had been in prison than I was saying I was Autistic. I very grudgingly accepted my ‘label’ but I didn’t like it one bit.

I gradually made peace with my autism diagnosis in 2004 when I met author and advocate the late Polly Samuel. Polly became my friend and mentor. She encouraged me to embrace my identity and also to write my life story. I did both of these things and it was amazing – and the book was published, thrusting me into the world of autism advocacy, whether I wanted it or not!

A couple of years after meeting Polly I truly accepted and embraced my autistic identity and never looked back. I attended and spoke at a conference in Brisbane. The theme was autistic women and girls. (This was long before I embraced my non-binary identity). The first day of the conference was open to everyone but the second was just for autistic women and girls. I finally realised I had come home. My autistic identity became very strong and I was genuinely proud to be autistic. I still am.

That experience of coming home was amazing and I have not looked back since. While many autistic people receive a diagnosis and immediately embrace their autistic identity for many others – including me – that acceptance can take longer. It can be hard to process and many people internalise ableism and this can fuel denial. I know that my experience of coming home to my identity – and autistic ‘family’ – was a liberation and an experience I would wish for any autistic person.

[And I apologise if there are typos – I have a cat sitting on me. He thinks he is helping but he really isn’t!!] 

G is for ‘Am I too girly??’ Or some thoughts on my trans identity 

After a lot of soul searching and reflection I came out as non-binary in 2018. I had always known my gender was anything but conventional but finally had the language around gender identity that worked for me. I spent about six months after coming out filled with a huge sense of liberation. I wanted to dance down the street! I knew who I was. I had my own unique identity and was taking exciting steps to understand and explore it. 

And here is a note on the difference between gender identity and gender expression. Identity is how you feel about your gender – how you identify and understand yourself. Gender expression is basically how you look. How you look and how you feel may be quite different things. You might feel masculine but wear clothes which are seen as feminine by others. Things like skirts, dresses, some jewellery and high heeled shoes are considered ‘feminine’ where I live and things like trousers, checked shirts and work boots are seen as ‘masculine’ clothes. Of course this is silly because clothes and shoes do not have a gender. They are just fabric with no sense of identity. However, the way people express their gender in the clothes and accessories they wear can mean people get their gender identity wrong and make unhelpful – and often hurtful – assumptions. 

Back to my story… When I was a teen and young adult my gender expression was usually considered masculine. I was very thin and had no visible boobs and wore ‘boy’ clothes. I often got called ‘mate’! But flash forward a few decades and my expression is more assumed feminine. That being said, I feel that my expression is very much ‘me’. While I wear jewellery, almost everything else I wear is gendered androgynous or masculine. However even for me my ‘girly’ expression got me puzzling for a while. I felt very much non-binary and agender in my identity but my expression had lots of people making the assumption that I was feminine. I started to doubt my oh so lovely identity and thought  ‘maybe I am not trans enough?’ This became a challenging thought and one which haunted me for some time. Thankfully after a while I had an epiphany – gotta love a good epiphany! I realised that if I felt trans that I was trans – simple as that. I realised that my expression was my own and people should not make assumptions about people’s gender based on simply looking at them! 

I have a lovely friend who jokingly says about my outfits things like ‘love your non-binary pants’ or ‘loving your transgender dress’. And of course they are absolutely right for if I am wearing something it is non-binary expression because I AM non-binary!

So wear whatever you like I say and people should not be assuming people’s gender identity based on how they express themselves. And I can wear a skirt or pants or anything else I want and it has no bearing on my gender.

F is for… feline friends

As of 2:30 this afternoon I have a new addition to my household. His name is Major Tom and he is a big ginger cat. I have said before that a Yenn without a cat is barely a Yenn at all and this is true. My last feline friend mr Kitty passed away in 2020 and I was devastated. It took me a long time to even consider getting a cat but now, almost three years later I am ready.

Many autistic people love spending their lives with pets and assistance animals. I am no exception to this. I have been a cat person for as long as I have known that there are cats! Being around cats makes me feel relaxed and I love feline company. I have had a number of cats now and they have all had their own different personalities. Major Tom is probably the most affectionate cat I have ever met. Within five minutes of getting here he had bonded with me. He has a lovely character and what I consider to eb almost a similar life to my own. He is kind and loving despite a brutal past – bit like this little Yennski – or at las how I like to think of myself!

Major Tom is FIV positive which means he shouldn’t be around other cats. He is missing teeth so I need to feed him wet food and soak his dry food in warm water. He is somewhere between 6 and 8 years old so is a mature gentlemen. When he was rescued apparently he was extremely thin and was  lucky to be alive. He is still thin but has plenty of energy. I am having the train him to not jump up on my lap while I am working and ‘help’. He is currently sitting under my desk as I type so he might have got the message! 

I do feel like I am properly myself again for the first time in a long time. I have Major Tom for a two week trial and is it works out I will keep him. I suspect he will be quite happy about that!

Cats are my favourite thing so having one is making me very happy.  

E is for… Empathy

There is a harmful myth that autistic people all lack empathy. This is a persistent view and even clinicians sometimes hold it. There are reasons for this myth, mostly due to ‘cultural’ type differences between the ways autistic and neurotypical / allistic folks communicate. 

Put an autistic person in a group of allistic people and they will communicate differently. This can be misinterpreted in a range of ways, including as a lack of empathy. In fact it works the other way too – an allistic person in a group of autistics is likely to be perceived by the autistics as lacking empathy due to their different communication types. Allistic people often think autistic people have no empathy for them but the other way is also true – autistic people often feel that allistic people lack empathy for us! It can be a matter of perspective. 

In reality autistic people tend to have a fair amount of empathy. Many autistics are highly empathetic. Some of us – the author of this post included – have something called hyper empathy. For me this means I pick up on the emotions of those around me as if by osmosis. If someone I am near is feeling sad or angry then I will take on that emotion. I had a colleague who was a very angry person a few years ago and I could feel her anger as she walked up the corridor to her desk. I could feel this person’s anger before I could see her! I was in the psychiatric ward a couple of years back. There was a young woman there who was really depressed. Every time I saw her having a hard time I would also feel the depression. I remember saying to my psychiatrist that I would rather feel miserable at home with Mr Kitty and without experiencing all the negative emotions of my peers in hospital! It can be very challenging having hyper empathy and it needs to be better understood. 

Some autistic people demonstrate their empathy in atypical ways. They may be extremely thoughtful and respectful. Autistic children in particular can be very kind and thoughtful and want to make sure everyone is feeing OK. This may relate to hyper empathy as well. 

One thing to note in this space is that some autistic people – and some allistics ones too – do in fact lack empathy or have low empathy. This is OK as well. The problem is not that everyone should have a similar level of empathy. The issue is that there is – to my mind – probably not a link between low or no empathy and autism – despite what the stereotypes may say and the view that we lack empathy is based in a misinterpretation of the facts rather than being a fact.

So it is OK to have empathy, hyper empathy, low or no empathy but stereotypes in this space are really unhelpful. 

D is for… DSM 5 and Deficits 

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. 

C is for ‘Crazy’ or why respectful language is so important 

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.

Yenn’s A-Z: B is for… brains! (Or why I don’t need to be ‘fixed’)

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. 

Yenn’s A-Z: A is for Advocacy 

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 

My first book

Mini-blog: On being asexual 

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!