For anyone following this blog, it has moved

Hi All,

In keeping with my new name of Yenn Purkis I have created a new WordPress blog site. It is this one: https://yennpurkis.home.blog 

While the content on this site will stay here, all new posts will be on the new site.

If you wish to follow my new blog please feel free to do so.

Thank you for your support over the past five years. I am looking forward to sharing blog posts from my new site.

Happy weekend to you.

🙂 Yenn

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I am Yenn: Affirming gender, affirming self

On Monday I was at work, sitting at my desk when what I can only call a flash of inspiration hit me. In less than the time it took you to read the last sentence I found my name and I knew my name was Yenn.

I think I’d better backtrack a bit. Last year I publicly affirmed that I am non-binary gender. This has been an amazing time of self discovery and reflection. My old name, Jeanette is about as gender loaded as you can get. I have had conversations with a friend called Bernadette and we both concluded our names were quite strongly suggestive of the feminine. When I came out I wondered if I should change my name. I started thinking about it but nothing worked. I concluded that I would know when I knew. And I did. The only convincing I needed when ‘Yenn’ popped into my brain on Monday was to see what it looked like written down. I tried it with an ‘e’ on the end which didn’t look right. I tried it as ‘Yenn’ and I knew I had found my name.

I considered where it had come from and realised it has a few ‘parents,’ thoughts-wise. The main thing I see is poetry. To yen in poetry means yearning, or as I see it, aspiration and personal reflection – both things I have a lot of experience of. It is also a little nod to my old, Jeanette name and it is quite individual. Written it looks strong and complete. Spoken it sounds confident and passionate. It might seem like a very quick decision but it was the culmination of a lot of reflection over the past few months.

When I knew my name I knew I also needed to tell friends. I sent a message to a bunch of close friends and emailed my parents. I said ‘I will take this gradually…’ and then realised I do not ‘do’ gradual, so on my way home from work I changed the title of my social media pages to Yenn Purkis and posted a message about why I had done this. I have experienced a lot of transphobia and trolling over the past few months so I was caught between liberation at my new me and terror that people would attack me.. Thankfully I have not had any negative responses and nobody unfriended me on social media that I am aware of, out of almost 10,000 people on Facebook and 5000 on Twitter. On Monday I spent the afternoon and evening in a state of joy. 

Yesterday I heard my name spoken for the first time, incidentally by author Graeme Simsion as I was part of a launch event for his new book. He said ‘Yenn’ and then smiled and told me I didn’t immediately look around! It takes a while I think given I am new to it as well.

I am fairly certain there will be people who will not like my new name due to its connectedness to my gender identity. There are quite a few transphobic bigots in the world, even in the autism world sadly. I have had people say ‘I thought this page was about autism, not gender’ and insist any commentary I make stays on the autism topic only. To me though, gender  diversity and autism are fairly clearly linked with so many of us being trans and gender diverse. This is not just my anecdotal evidence either, there is a lot of research evidence which demonstrates this too. I am here as an advocate for autistic and trans and gender diverse people alike and I would much rather be a visible gender diverse person if that helps others who feel they cannot come out themselves and are experiencing bigotry of self-hatred and doubt. 

I am becoming acutely aware of why it is referred to as ‘transition’ and not change. I really, really wish I could make a decision about my identity and expression and magically everything changes that needed to but it doesn’t work like that. The legacy things – writings about a gender I no longer identify with, my name changing across documents and profiles, people using my pronouns – these things really get to me. I just want it all done now. Maybe the need to wait and change things slower than I want is what my mum would call ‘good for your soul’? Not sure.

The response I have had to my new name has been overwhelmingly beautiful. People I don’t know at an event telling me what a lovely name it is, a colleague at work that I came out to giving me a card which says ‘this calls for confetti’ and has a really meaningful message that she has written, my boss telling me I have her full support and being available should I need her despite being busy, The almost 500 people who liked or reacted to my Facebook post about my new name, all the people saying ‘Hi Yenn!’ and ‘Your name is beautiful’, the organisations changing my name on their promotional material for upcoming talks.  This affirmation is so overwhelmingly lovely and was not really expected.  I keep expecting hatred and there is none, quite the opposite in fact. I really wish this was the case for everyone affirming gender.

So I am a new me. My old Jeanette name never really fitted to my mind. It feels like I was wearing a big old coat that didn’t quite fit right and was uncomfortable but it never occurred to me to take it off until I did and now I am in a metaphorical jacket that fits just right and looks good to me and others and allows me to move freely and express myself the way I want to.

I might say that these things do not come without doubts and insecurity and lots of questioning but within that there is somehow a great certainty as well.

I like my new me. This was an important week for me so I wanted to share it with you all as well. 

Yenn

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Sensory issues are accessibility issues

Last year I went  to a breakfast with some of the community leadership people in Canberra. It was at a nice cafe and two of the people at the table ordered an omelette with black truffles. The wait person cam over and shaved truffles generously on both the omelettes. I struggle with mushrooms and fungus and had never been in close proximity to truffles before. The smell emanating from the offending luxury breakfast was so overpowering I had to sit at another table some distance from everyone else. I imagine they may have thought I was quite strange but I really needed to be away from that smell. I actually had flashbacks of the smell for a few weeks. I would be doing my thing and suddenly I was back with the truffle smell! It was like it was inside of me.

That is a fairly clear example fos sensory processing disorder (SPD), something which many people – and a great many autistic people – experience. I might point out that you do not need to be autistic to have SPD and that you do not need to have SPD to be autistic. However, there is a big overlap despite SPD not being the exclusive domain of autistic people.

Sensory issues are serious. People have quit perfectly good jobs and sold their home to escape a sensory issue. One of the problems with sensory processing issues is that people believe their senses are reality, their ‘truth’. The way you interpret the world is through things like sight, smell and sound. You cannot experience a another person’s senses. Unless you have reason to think otherwise, your senses are the ‘truth.’ So when somebody needs to move to another table at a restaurant because of the smell of your delicious breakfast it can seem odd. If an employee tells their manager that they cannot work in LED lighting and could they please have an alternative form of lighting for their desk, the manager might dismiss the concern because it is not their reality.

Sensory issues can impact on a range of experiences. Sensory processing issues can contribute to overload and ‘meltdown’. They can mean people avoid a situation, such as kids going to school.  Some people are unable to articulate their sensory distress which can make it almost impossible to address the issue. This can relate to interoception (the sense of what is happening within the body). Emma Goodall’s excellent Interoception 101  resource includes strategies for building interoception which can help people to be aware of when sensory things are overwhelming, if they are not already able to do that.

Sensory issues can be dismissed by people who ‘don’t get it.’ This can be immensely frustrating and result in anxiety and feelings of disempowerment. Imagine if you spent a month plucking up courage to raise a concern with your manager at work and they simply dismiss your concern and say ‘those lights aren’t bright.’ and then don’t address the issue. 

Sometimes having sensory sensitivity can be dangerous and result in some very negative outcomes. An example of this is a person with SPD who is in a locked psychiatric ward. There is no escape from whatever sensory nasty is happening and they are like to feel particularly trapped, stressed and much more prone to overload and meltdown. They may react with aggression simply because they are so overwhelmed and feel that nothing can help them. This is particularly the case if they have raised their concern with hospital staff and nothing was done. This situation can result in some terrible outcomes and illustrates how important it is to take sensory sensitivities seriously.

Some key points about sensory processing include:

  • Everyone has different sensory experiences, There is no one experience and things which don’t seem loud or smelly to others can be overwhelming
  • Even ‘pleasant’ sensory things like perfume and music can be unpleasant and overwhelming for some people
  • If someone raises a concern around sensory issue, take notice of it and act 
  • Sensory issues can contribute to how someone acts. If a person is overloaded then they are more likely to have ‘difficult’ behaviour 
  • People in all areas of society need to understand sensory issues and their impact, especially managers, teachers and health workers
  • Sensory issues are accessibility issues. As everyone has the right to have accessibility for physical access, so too everyone deserves the right to not be subjected to a sensory onslaught when using facilities.

I am now on the International Sensory Inclusion Board along with some great people. Check out what is happening in the space on their Website 

Everyone has different experience of sensory things. If someone says something is causing them distress, it is, even if others don't share their experience.

Some reasons why we really need autism advocacy 

I watched a movie for my movie night on Friday called Please Stand By. It is about an autistic young woman living in California. I won’t give spoilers in case you watch it but it got me thinking about why advocacy is so necessary. Attitudes toward the autistic woman were very much that she had no capability to live independently and little to add to the world but as the film unfolds it becomes clear that the young woman is highly talented and resourceful. I’m not sure of the disability politics of the filmmaker but I enjoyed the film – except the disturbing bits about Applied Behaviour Analysis* which were very hard to watch. When the film  finished I said to my move night visitors ‘I need to write a blog post about this.’

In fact my blog post is a bit broader than the film. I am not a movie reviewer! The thing which struck me most about the film is that it demonstrated quite well why advocacy is so important.

The film showed this through:

  • Highlighting that many people view autistic people as incompetent and like perennial children
  • There are ‘therapies’ for autistic kids which essentially mirror training a dog. This needs to stop.
  • Autistic people often have so much to offer the world but this is not noticed or understood by many people.
  • There is still a view that autistic people have no feelings or empathy. This also has to stop.

In terms of the ‘real’ world, I have been knowingly advocating since 2005. Things have certainly changed since then but there are still things which really need attention. I – and presumably other autistic speakers – used  to only be viewed as a token or the ‘colour and light’ when I spoke at autism events but now there is a growing knowledge that autistic people are the experts in autistic experience (I know hey, who would have thought??!). There are autistic-led organisations like Yellow Ladybugs and the I CAN Network doing great work in empowering autistic young people. Autistic viewpoints are often featured in news media and not only as ‘human interest’. I see these developments as good things.

However, there are many areas where things require significant work. These areas include:

  • Employment. We are mournfully underrepresented in employment numbers and in Australia we are almost six times more likely to be unemployed than the general population. This is not usually because we are unskilled or unemployable but due to a range of factors – some structural and others related to the attitudes of individual employers and there being a load of unwritten rules at work that we do not understand or notice. This means our skills and talents may be overlooked and employment can be difficult or impossible when in fact this does not need to be the case. 
  • Education. We have far lower education attainment levels than the general population. Our children often leave school due to bullying or other issues and simply never go back. Higher education can also be a fraught place for autistics. While schools seem to be getting a bit better at inclusion there is still a long, long way to go to address these issues.
  • Some autism organisations have what I term legacy thinking, meaning that they once had a good message but now have outlived their usefulness. These are often the organisations who have no autistic representatives on their board or who promote ‘awareness’ events which are exclusionary such as ‘light it up blue.’ Organisations supporting autistic people really do need to be genuinely inclusive themselves.
  • Accessing healthcare is a nightmare for many autistic people and families. Health settings such as hospitals can be terrifying and exclusionary and medical professionals can be ignorant about autism and do more harm than good. It is so bad that many of us elect to not access treatment even when we need it. At the very least, training for medical and psychiatric staff needs to include some autism training as part of accreditation and qualifications.
  • Gender diversity and sexuality are a significant consideration for many autistic people. However, attitudes around sexuality and gender diversity can be stuck in the dark ages a lot of the time, especially for Disabled people. Some believe that we are all cis gendered and asexual or heterosexual.  This goes across all the items listed here  – in employment, education, healthcare etc. There needs to be much more advocacy and understanding in this space to ensure young people grow up safe and autistic people are seen as who we are in terms of our whole identity, whatever that may be.  
  • Wider society has a lot to learn about autism and autistic experiences. Sensationalist pieces in news media and stereotypical autistic characters on TV  do nothing to help. We need more representation of autistic experience and also autistic characters in TV dramas who are not white cis gendered heterosexual middle class men. Attitudes around disability and other differences need to be improved on a societal level too.  

That’s adds up to a lot of advocacy needed! Thankfully there are now quite a lot of us working on these things. When I started there were a handful of us in Australia and a few more overseas but at this point in time there are so many autistic advocates and activists and also some genuine allies coming from a place of respect and listening, supporting this work. 

I absolutely long for the day that I will not be needed as an advocate because we will have achieved all we need to. It is important to understand though that nothing is set in stone. This stuff is all up for grabs, making it so important to advocate and be a strong presence fighting ableism and discrimination. We don’t know the future but we can help to shape it.  

* Applied Behaviour Analysis (ABA) is a ‘therapy’ for autism that is discredited by many and has been known to result in post-traumatic stress for some of those it was used on. Based in a rewards and punishments model, it seems more concerned about making children look somehow ‘less autistic’ than actually supporting their development. Behaviour training focuses on making kids stop stimming and often forces eye contact. We definitely do not condone ABA at Whimsy Manor

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