Thoughts on the Coronavirus / COVID19 and the autistic community

I saw a post on social media yesterday  saying the COVID19 / coronavirus was a media beat up. I could understand where the poster was coming from as there has been some rather sensational reporting about the crisis but the virus is definitely not a beat-up. COVID19 is a real crisis and people are right to be concerned. I have been thinking about the impact of the virus on the autistic community and will unpack my thoughts here.

Autistic people tend to be more anxious than the general population and it is understandable that we are anxious about the virus. I have been worrying about its impact for a while. I think catastrophising is probably a more appropriate word. It is hard to know how anxious to be. Should I be buying supplies in case I am quarantined? Am I at risk of catching the virus? Are my friends and family at risk? Should I still travel interstate for speaking gigs? Will my speaking gigs be cancelled? Will the economy fail and will I lose my job as a result? I could go on for a while. I think the best advice I have – for others and myself – is to try and just worry about the issues at hand and deal with things on a day to day basis.

Another commentator suggested that COVID19 will be beneficial to autistic employees because it will result in lots of working from home which favours us. Thi is sort of correct but needs to be taken in context. Many jobs do not have capacity for remote working. And autistic people who are not employed are probably less likely to be hired in the current circumstances. As economies shrink, so too does the hiring of people from diverse backgrounds. In a smaller economy it is likely that autistic job seekers will be less likely to find work.

I have seen humorous memes about autistic people benefiting from self-isolating. This is amusing and probably true but many quarantine situations will involve being confined with other people. This could be a nightmare for autistic people. I am currently in a rehabilitation hospital and I have been running the quarantine scenario through my head a lot and I really don’t want to be confined to a building with the same people for weeks on end! 

Another thing which people have been saying is that ‘I will be OK because I am not old or sick.’ A lot of the media about the virus has also focussed on this. I find this highly problematic. It is as if older and sick people don’t matter and the virus is not a concern because young and healthy people are not victims. My parents are in their seventies and I would be devastated if they caught the virus. It is not OK that the virus kills people that ‘aren’t me’.

Talking to children about the virus is a tricky thing. I have seen a few resources out there including one through Footprint Books. You don’t want to terrify them but you do want them to know things like the importance of hand hygiene and give some context to the media discussion fo COVID19.  Autistic children may become very focussed on the crisis and be highly anxious. It is a fine balance, somewhere between feeding into their fears or at the other extreme telling them that there is nothing to worry about. It may be worth scheduling a time where the can ask parents any questions they have about the virus. 

Panic buying is something which many of us find baffling. One of the issues with it is that it drives others to panic buy even if they don’t want to. For example if all the toilet paper is gone from the supermarket, someone who otherwise wouldn’t panic buy will grab any toilet paper if they see any because they know it will be gone soon. 

I am actually very concerned about the COVID 19 crisis and struggling with my anxiety. I am worried about the hospital I am in being quarantined or repurposed leading to my early discharge, I am worried about the economy and my job being affected, especially as I have been on sick leave for the past five months. I am worried about people I love and care for contracting the virus. I am hoping a vaccine is developed soon but until then I just have to manage my worry.  This is a very scary thing with the potential to disrupt society across the globe. 

 

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Autism and emergency services 

Trigger warning: Police shootings

Most of us will come across emergency services in our lifetime – police, ambulance officers and firefighters. For autistic people these interactions can be very stressful and even dangerous. 

Emergency services personnel may not know a lot about autism meaning they misinterpret the actions of autistics. At its most extreme this can result in death. Many autistic people having meltdowns have been shot by police who mistakenly believed they were a danger to others or that they were on drugs.  If police received better training (or any training) on working with autistic people these tragedies may well be avoided. 

Autistic people may be arrested on suspicion of illegal acts based on misunderstandings of the reasons for their behaviour. I know of one autistic man who was arrested and interrogated because he was examining the foundations of a building. The man was an engineer and was concerned that there was a fault. However, as terrorism was a big issue at the time the police wrongly assumed that the man was planning to destroy the building instead of what he was actually doing which was to try and save it! I know of another autistic young man who got a criminal record for sexual assault. He was on the bus and saw a woman with shiny stockings. Thinking these a great stim he reached out and touched the stockings, which were of course attached to a woman who thought she was being groped by a pervert rather than having an autistic person appreciating her stimmy tights!

When autistic people are in police custody things can get even worse. I remember an encounter with police in my dubious youth and they did the ‘good cop bad cop’ routine which I instantly fell for. They also asked me my name and address and the lawyer I had spoken to had advised me to answer no comment to everything so I answered no comment to my name and address. This did not go down well! Some autistic people are so frightened in police custody that they will admit to a crime they did not commit just to stop the questioning and fear.

Autistic people rarely enjoy making eye contact and this can definitely be the case when we are stressed. However, many police officers believe that not making eye contact is a sign of guilt or lying. An autistic person might be being totally honest but not be believed due to them looking down or away from their interrogator.

When an autistic person is the victim of a crime they can be misbelieved and gaslighted by police and courts. This is not ever OK. The judicial system should allow access to justice for everyone. 

I think that if police had better training in autism these issues would be less prevalent. US-based author Dennis Debbaudt has written great book called Autism, Advocates and Law Enforcement which deals with these sorts of issues. Here is a link: https://www.amazon.com.au/Autism-Advocates-Law-Enforcement-Recognizing/dp/1853029807/ref=sr_1_5?keywords=debbaudt&qid=1580359327&sr=8-5 

The experience of being transported in an ambulance can also be overwhelming for autistic people as well. It is a strange and alien environment and a stranger is doing things to you like taking blood pressure and ECGs. The radio night go off unexpectedly and they might use the siren which is noisy and can be overwhelming. Ambulance officers will ask the patient lots of questions which can be overwhelming and can result in meltdown or shutdown. Add to all of this that the autistic person is in a bad space physically or mentally to be there in the first place so all these intrusions are happening on top of injury or illness.

Once again, autism training for paramedics is essential. It would also be good to have a sensory audit of ambulances and see if any changes can be made to make them less unpleasant and frightening for autistic patients. This could even involve having a small box of fidgets on board.

Accessing help from emergency services should be a positive and supportive experience but for many of us it isn’t. There is work needs doing in this space and it needs to be led by autistics. I really don’t want to ever hear of another autistic person shot by police simply because they are having a hard time.  

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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.