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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‘Respect the stim!’ or why I detest ‘quiet hands’

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

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

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

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

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

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

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

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

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

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

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

i loe muy sensory-=seeking stimmy experiences. lights and sparkly things usually instantly make me happy.

 

Thoughts on ‘meltdowns’

One of my Facebook family asked me to write this and I wondered why I have never written on this topic before given it can be such a huge challenge. The issue, for want of a better word, is ‘meltdowns.’ And if people have a better and less alarmist name for it please let me know.

What is a ‘meltdown?’ My understanding  is that it is the result of an overland of information, sensory and social input and  / or emotions. A person can only experience so much overload before it takes hold and they express it in a way which can be distressing for people – and it is often most distressing for the person having the ‘meltdown’. I am yet to meet an autistic person who feels OK about meltdowns. When we have one we regret it and really don’t want to have another one. We often worry about loss of reputation because meltdowns are poorly understood, even by those who work with autistic people. Wider society has some very dark views about ‘meltdowns’.

A ‘meltdown’ is basically what happens when there is too much difficult or stressful input coming in and not enough time or opportunity to deescalate the issues before they come to a head. A meltdown is not the fault of the person having it. It is not intentional poor behaviour and it is not a ‘tantrum’ designed to get attention or force a decision. Generally autistic people are not intentionally manipulative, even if some people  believe that our behaviour is manipulation.

For me, when I have one I became very stressed and emotional, paranoid at friends I usually like and angry. It is almost impossible to control how I respond to the overload once I am in that state. Thankfully I tend to only have meltdowns when I am around people that understand me so it is easier to work through afterwards. On one occasion I had one at work which was very challenging. Even though I am an autistic advocate so am usually articulate when speaking of such things, I wound it very hard to explain what had happened and felt quite guilty.

When I was a kid I had meltdowns on occasion. This was in the early 1980s so the understanding of autism was pretty much zero. I wouldn’t gain a diagnosis until 1994. When I had a meltdown it was viewed as me being pushy or difficult. So I decided not to have them. This might sound like a positive thing but it really wasn’t. Over the six years I was in high school I squashed down my overload, so the metaphorical ‘tank’ just got more and more crammed with stress and I didn’t release it. I was bullied badly all through high school but I kept my metaphorical emotional drill sergeant on patrol  and didn’t let anything out. If any of you have read my autobiography about the hell I went through in my twenties you will get an idea of what that approach did to me. When I finally released the pressure it basically propelled me into several years of chaos. I cannot speak for others but this does make me think that if the level of overload is there, suppressing it may not be a good idea.

‘Meltdowns’ are one of those areas where autistic people can be viewed as ‘other’ and distant form the rest of the humans. I den’t think that is the case at all. I think autistics feel, see and experience things on a  very heightened level a lot of the time. Our senses are often highly tuned, our thinking is often at a heightened level, we tend to worry and ‘overthink’. Put someone experiencing that into a world where they might be mistreated, ostracised and bullied, where things don’t always make a lot of sense and where we are not respected or listened to…well it’s no wonder the overload can turn into something like ‘meltdown’.

What is the solution? I know a lot of autistic people who are terrified of having meltdowns in public or at work or school, and with good reason. Meltdown is not well understood by most people it seems. I even attended an autism event once where the wife of an autistic man gave a presentation about his meltdowns and talked about him like he was an errant child! In practical, immediate terms, learning your triggers and some deescalation strategies can really help. More broadly, if people understood the reasons for a meltdown, if people understood autistic experience better and were more understanding and respectful, I think the issue would be less challenging for us. If we lived in a genuinely ‘autism-friendly’ world, there would be more of a chance to avoid or deescalate overload before it got to the critical point. And if we knew that people would understand meltdown better and the reasons for it and not judge us then even if we had one at work or at school or in public it wouldn’t be such a mortifying moment because – as I do when I have meltdown in front of friends I trust –  people would understand and not judge so much. Yep, neurodiversity can do a  lot of good stuff. Let’s just make a more respectful world where people understand us.

a 'meltdown' is not a tantrum. it is a sort or release valve in response to overload. it is not intentional and requires support not punishment.

Unsolicited medical advice? No thank you!

I am not a fan of unsolicited, persuasive health advice from, well anyone really.  I am an autistic person who has a diagnosis of atypical schizophrenia. I have spent many years accessing health services and on more occasions than I care to count have been misdiagnosed, misrepresented and mistreated.

My mental illness is apparently unusual in presentation plus I am autistic which combines to make accessing diagnostic services from mental health clinicians very fraught and stressful. Like many other neurodiverse people my autism diagnosis is hard fought and won. It represents a major part of my identity, more so than almost anything else. My gender identity is also a pretty big factor in how I view myself. Mental health is less important when I am formulating my sense of who I am although it definitely plays a part. 

Since I accepted my autism diagnosis in 2002, I have had several admissions to the psychiatric ward for mental health issues. Each time I have been terrified that a doctor would cancel my autism diagnosis. I remember a psychiatrist during one admission flippantly saying he thought I was ’too cool to be autistic.’ This resulted in some stress and panic from me. I said to him desperately ‘But I write books about autism! you can’t take that from me.’ If that psychiatrist  had un-diagnosed me it would have had a huge impact on my sense of who I am. At quite a late age I found my autistic ‘tribe’ and started learning who I am as an autistic person. Losing that would be a grief akin to losing a person I love. I’m fairly certain it wouldn’t help my mental health all that much either. This seems to be a common way of seeing things among my neurodiverse peers. Sadly it seems to be just as common for clinicians to have little understanding of the impact of such pronouncements and comments on those they are tasked to care for. Accessing help can be a minefield of stress and confusion about diagnosis and identity as a result. In the past I have put off accessing help even though I needed it for fear of having to go through drama about my diagnoses.

Even without doctors misdiagnosing and missing people, there is a whole population of people who will happily dispense healthcare and diagnostic advice apparently from the basis of little or no knowledge of what they are passing comment on! These range from people who don’t have a lot of knowledge but make up for it with a  wealth of opinion telling autistic people and parents of autistic kids all the reasons the diagnosis is ‘wrong’. It can come from friends dishing out diagnostic and health advice from what they think is a place of care. But for someone who has fought for many years to gain the appropriate diagnostic descriptors being told by a friend that your experience is actually ‘wrong’ can be stressful and triggering.

Problematic health advice goes beyond diagnosis. Medication is another area where many people have strong opinions, and I don’t just mean the most obvious group – dangerous anti-vax charlatans. I blocked an autism world colleague a while back because he told me to stop taking the medications I take for schizophrenia and to meditate instead. Now I’m as much a fan of mindfulness as the next person but I know from experience if I stop taking my meds, all the mindfulness in the world isn’t going to help! This advice was actually dangerous. Had I followed it I would be very unwell – risking my reputation and potentially my life. Not such helpful advice regardless of whether the person giving it thought they were helping! I felt this person had quite a dangerous attitude based presumably in ignorance.

I think a lot of the issues happen where people think they are helping but don’t know much about the person or their situation.  Both health professionals and laypersons can be guilty of this. Giving out this kind of advice meeds to be done with a willingness to listen and understand and without ego. I am often asked to provide advice and the first thing I think is about the responsibility which comes with that and how whatever I say needs to be helpful to the person and respectful of their circumstances and who they are. I feel like a lot of people dishing out advice could benefit from adopting a similar approach. Flippant statements can be devastating.

Some tips:

  • People generally don’t enjoy being given unsolicited health advice. Giving unsolicited health advice doesn’t provide a lot of benefit to people.
  • It can be dangerous to give some advice to people (e.g. ‘don’t take your meds’ etc.)
  • Assertiveness is a good skill if you are on the receiving end of this kind of thing. Explain your concern, why it is an issue and give the other person the opportunity to revise their statement  / apologise 
  • Autism and other neurodivergences are frequently a strong part of a person’s identity which means statements questioning diagnosis etc can be very hurtful and unhelpful.
  • The impact of statements on things like diagnoses and treatments can be much more significant than the person making the statement thinks.

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