Standing against the attacks on trans and gender diverse people – what can we do?

This will be a short post. Many of you will know that I belong to the Trans and Gender Diverse community as a non-binary person. Many of you will also know that there are a lot of people including some in positions of influence who are attacking trans and gender diverse people. Friends have been verbally and physically attacked by bigots in recent months. I have been attacked by transphobic trolls too. This is not on any level OK. To say that I stand with my trans and gender diverse siblings is an understatement. We need to support one another and counter the hate. Hate is pernicious. People can’t see beyond their bigotry. It is not OK to attack trans and gender diverse people in any setting – be that on the street corner, in a church or in the media. 

Things have become frightening in recent months. I fear for our future.  The more people who stand up and say the hatred and violence is Never OK – both trans and gender diverse people and allies – the better.

Recent research shows that autistic people are over seven times more likely to be trans and gender diverse so this is an autism issue too. 

I have been advocating for a long time. I don’t want to see the good work that myself and others have done being rubbished and wound back by bigots. 

How can you help?

  • Get involved in campaigns to counter hatred
  • If you are in a conversation about gender diversity and things get hateful, stand up and counted. Present an inclusive view.
  • Be kind and respectful to trans and gender diverse people. Remind yourself that we might be badly affected by all the hate that is going on at the moment and need love and kindness.
  • Use people’s correct names and pronouns including when you are talking about them to someone else. This might seem a small thing but it is a demonstration of respect.
  • Be visible as an ally. 

I don’t think it is inevitable that things will get worse. I think we have the opportunity to make a difference and defend the rights we have fought for. I give presentations and write things, I’m not much if an activist but I think we all have something to bring. 

I am a proud autistcis and non-binary person. I love and value myself just as I am. In the world we live in thag is a political act all by itself. In a better world it woudln;t be. It woudl just be a description of m

I’m sorry, I have absolutely no idea who you are!

I don’t recognise people by their faces. People think this is an autism thing. It actually isn’t although a lot of autistic people share this experience. It is one of those things which I call ‘Venn diagram issues’. Sensory processing disorder is one, as well. You can have these and be autistic but they are not exclusive to autistic people. I suppose they are a part of neurodivergence. Face blindness – officially known as prosopagnosia – is something I have lived with forever and which used to cause me no end of stress.

The other day I was at work and a colleague was wearing a bubbly jumper. It had little knitted bumps on it. All day I saw the bobbly jumper person and noticed them. I reflected that tomorrow when they wore a different jumper I would have no idea who they were! I often tell people by their hair which can change. Some people are very kind and wear distinctive clothing or jewellery and I can generally work out they are who they are but most people’s appearance is a mystery.

I have worked in my current job for almost four months and I still have no idea who half the people are who work on my floor. I mean I know who they are – I know their names, what job they do, quite a lot of detail about things they have told me about their life outside of work, but their faces are a mystery. One of the issues with prosopagnosia is that many people are unaware it is a ‘thing.’ This makes it hard to explain. I usually say that in my brain the part which processes human faces is the same as the part in others’ brains which process objects. I have come across a lot of tables in my life but I can only remember the very distinctive ones!

In the past I was ashamed of my prosopagnosia. I thought it was embarrassing and meant I was somehow deficient as a person. I would try and figure out who people were from the context of what they were saying to me. This worked about 50 per cent of the time. These days I will ask where I know someone from and explain I don’t remember faces much. I don’t really care if they think I’m odd and it is better than having them think I am being deliberately rude.

As a person who has a bit of a public profile, this stuff can be challenging! A lot of people recognise me who I have never met before. If I am at a speaking event I usually ask if I have met someone before, The same goes form the women’s and gender diverse support group I facilitate. If I don’t know who someone is from looking at them I will ask if we have met before. There is one woman in an autism group I am a member of who I have known for some years but every time I see her I forget who she is!

It is an odd feeling looking at faces. I recognise probably about 20 per cent of the people I know. If I see someone a lot they will eventually stick in my mind – well most of them time anyway! Faces are mysterious to me. I don’t see much of what is on the face. I generally see hair and then notice the person’s body size and shape and what clothes they are wearing. If you asked me to tell you what colour my mum’s eyes are I honestly wouldn’t be able to. I also don’t know much about facial expressions. I can decipher them when looking at a movie but in real time in conversation I have no idea. You would have to be crying loudly for me to know you were sad. This can make me appear uncaring which is not true at all. I am unsure if prosopagnosia and issues interpreting facial expressions are linked. I prefer to not look at someone when they are speaking but I am aware allistic people like to be looked at so usually compromise.

For some reason I am significantly better at recognising other trans and gender diverse people. Cis gender people really do all look the same to me. I have absolutely no idea why this is the case but it is a noticeable difference. I’m sure a neurologist could write a paper on this if they felt the need!

I guess my changing attitudes to my prosopagnosia – from being embarrassed by it to my current position of being happy to talk about it – demonstrate changes in attitudes around Neurodiversity. Prosopagnosia is nothing to be ashamed of. It is simply a different wiring in the brain. It is a different part of human experience. If I tell people about it then they will understand better. So no, it is unlikely I have any idea who you are but that is OK. 

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Getting the best out of clinicians – Some strategies for autistic people 

 

One thing that almost very autistic person I know has trouble with is the treatment we so frequently get from mental health clinicians and also other health practitioners.

If you take the sample of one that is me, I can list a large number of negative experiences I have had while under the ‘care’ of health practitioners, all of whom knew next to nothing about autism and even less about me as an individual. There was the psychiatrist who overruled my autism diagnosis because it was made by a psychologist – and a young, female psychologist at that – so must be wrong. I was lumbered with a borderline personality disorder label instead and it stuck with me for several very unpleasant and invalidating years. There was the psychiatric nurse who responded to me being physically assaulted by a fellow patient by saying that I should be ‘less annoying’. Possibly the most puzzling was the psychiatrist who told me I couldn’t be autistic because I was ‘too cool.’ Was cool a diagnostic criterion? Who knew. Jokes aside, accessing healthcare is a problem for me and other autistics. We can be dismissed, misdiagnosed, bullied, given damaging ‘treatments’ and generally ignored. Finding clinicians who will understand us, our autism and who we are can seem impossible. 

Thankfully there are a few strategies we can use to help us manage this issue. 

  • If you have the opportunity to choose which clinician you see, do some research. One of the best strategies is to ask other autistic people who have used the clinician what their experiences have been. You can also ask people for a list of good clinicians and, possibly more importantly, clinicians with whom they have had bad experiences so you can avoid those.
  • If you are in publicly funded healthcare and do not get to choose your clinician and they turn out to be problematic, request a change, explaining why you had issues. If you are not given a new clinician you can contact a consumer advocacy organisation in your area (such as ADACAS or Advocacy for Inclusion in the Canberra region). These organisations can support people in dispute with healthcare providers and services. It is good if things don’t get to the point that you need such support but knowing what your rights are and what help you can access in terms of advocacy is a good idea.
  • One thing which I have done with psychiatrists is what I call giving them a job interview. I simply ask a prospective psychiatrist how they feel about the concept of them being my employee. I am the boss and if I want to ‘fire’ them and hire another  one I will. What to look for in response is not the answer to the question but the reaction to it. If your prospective clinician gets defensive or offended it is a good sign that they are a bit arrogant and arrogance is not a quality you want in someone looking after your health.
  • You can bring a list of questions to appointments and / or a list of what you want your clinician to do for you. 
  • You can also bring a support person with you. This can be a family member, partner, friend or member of a disability or other advocacy organisation.
  • If a therapist tells you that you have to see them and the relationship can only stop when they say so, don’t listen to this as it is incorrect. I had an experience of a psychotherapist who said this when I was younger and it turned out that he was highly inappropriate but because I was young and was getting the therapy sessions for free I thought I had to keep seeing him.
  • It is better to not see a clinician than to see one who is a bully or who makes you feel scared or invalidated when you speak with them.
  • One thing you can do is to help your clinician on their journey to greater autism knowledge. This will not only help you but also help other autistic clients they have. You can give them a list or autism resources to look at or just talk to them about what autism means for you. Remember that they may have already seen some information on autism but it may not have been very inclusive or from a strengths / Neurodiversity perspective so you can counter that with some more positive information if you like.
  • It is OK to challenge a health professional. Sometimes it is a very good thing to challenge them if their understanding of you is making things worse and not better.
  • Always remember that you have the right to respect, decent treatment and a therapeutic partnership free of negative power dynamics, bullying or cruelty.
  • There is an old-fashioned but persistent view that health professionals and especially doctors, occupy a privileged place and people should respect them simply for their professional position. Not only is that untrue it is also very unhelpful when a health professional is mistreating or neglecting someone. We all have the right to fair treatment.
  • If you find a good clinician then keep seeing them if you can. You can recommend them to other autistic people too.

Hopefully some of these strategies will help you navigate what is often a veritable minefield of finding health care which is actually helpful. I hope as time goes on this sort of post will be unnecessary but we are not at that point yet sadly. 

Accessing health services can be so traumatic for autistic people and those who love and care for us that we simply stop accessing help. This is not OK.

Thoughts on meltdowns – and on whether we call them meltdowns?

I recently read a post on social media which was a parent who was concerned about another parent sharing photos of their autistic child having a meltdown. This is an issue which comes up way too regularly. It got me thinking about meltdowns though – what are they, what causes them and what having them makes us as autistic people feel. 

There is a lot of misinformation about meltdowns. When a child has one it is often conflated with a tantrum but in fact those things are vastly different. A tantrum happens when a person – usually a small child – doesn’t get what they want or when they are angling to get something they want which they probably aren’t allowed to have. Like aggression in adults, it tends to be a method of influence borne out of powerlessness. By contrast a meltdown is not about getting needs or wants met at all. A meltdown is simply a release valve for overload. You put enough things in the pot and it will boil over. Overload is often sensory or social or emotional but other things can escalate a meltdown too – too many tasks, even an excess of positive but overwhelming experiences. Once it gets to that critical point a meltdown will happen and is usually beyond the control of the overladed person. Parents often tell me that if a child is having tantrum they will be looking at their parent to gauge their level of attention whereas when a child has a meltdown they are consumed by it and will not look at their parent as the parent’s reaction is irrelevant given the meltdown has nothing to do with gaining anything.

Autistic people do not generally want to have meltdowns. We often feel shame or regret after having one despite them being largely beyond our control. This tends to relate to how others treat a person who has a meltdown. If you are an adult or adolescent a have one you will often get the response from others that you are manipulative or that you are out of control. This is very tricky and these responses can often feed into the very stress which fuels overload in the first place. 

Sometimes people want to intervene when someone is having a meltdown. This is not helpful and can be very dangerous, particularly if armed police intervene. Someone having a meltdown just needs to get through it and out the other side. As they are already highly overloaded, people telling them to calm down – or worse still physically touching them – are not going to help and are this is likely to escalate the situation. So if someone is having a meltdown and they are not in immediate danger – and others are not in immediate danger – leave them be. When they come out of it they are likely to be emotionally overwhelmed and probably  apologetic.

The key piece of information for others to know is that meltdown is not intentional poor behaviour. It is largely beyond the control of the person experiencing  it. Don’t blame or punish the person. Reassure them and ask what they need.

One of the best things to do to address meltdowns is to work out some deescalation strategies. Many autistic adults and kids can feel when things are escalating and this provides an opportunity to build in some strategies to deescalate before the pressure increases to a critical point. These strategies often involve things like taking yourself away to a quiet space, listening to music, being away from people and doing some sensory or other stims. As we travel through life we tend to build more strategies to manage challenges and this can include meltdowns.

While meltdowns are not a good thing to have, forcing yourself to internalise them can be quite damaging too. I should know as I did so between the ages of 11 and 21. I am a very disciplined person and my family didn’t understand my meltdowns. I think they probably thought meltdowns were me being demanding. As a result of this I decided to not have any more meltdowns. The whole way through high school when I was bullied most days and in class, in the playground and on the bus. I had what I now know was high anxiety but still no meltdowns. I do not recommend this approach. It was not me consciously deescalating overload but me squashing down all the misery I was going through. When I got to my early twenties it all came out and left me in a very bad way for many years. So while my metaphorical pressure cooker didn’t go off for some years I was just adding and adding to the pressure rather than learning how to manage overload.

Autistic people do not generally want meltdowns. Some people fear them and  will avoid certain situations in case they have one. I guess I’m getting back to the start of this post where I mentioned a parent sharing pictures of their child having a meltdown. It is not OK to show us at our most vulnerable and at a time we probably don’t want shared. Being respectful and helpful involves supporting autistic kids – and adults – to learn strategies to manage overload and to understand without judgement if we do have a meltdown, not to plaster it all over social media where judging eyes can, well, judge.

And as an aside I have seen people say ‘meltdown’ is not the best word for it. They are probably right actually. Meltdown is what happens when a nuclear reactor explodes which seems a little extreme. I’ve had my fair share of meltdowns but nowhere is uninhabitable because of them! I am not sure what rename it as though – extreme overload? Not sure. If others have ideas please share. 

Autistic adults have meltdowns too. It is often due to overload. It is not poor behaviour and can be very traumatic for the person experiencing it.

What if… (Reflections on autism and disability)

I often reflect that as an autistic person most of my issues in life stem not from autism itself but from the way others treat me and the way society at the moment is geared towards the neurotypical majority. This got me to thinking about other autistic people? Is this true of others? Is it as people occasionally tell me ‘you are ‘high functioning’ so it’s different’ or ‘you don’t speak for my autistic child who has ‘severe autism’”. Do I belong to a privileged element of autistics that don’t have any inherent issues related to autism or is the whole notion of levels of autism unhelpful? Would others with different support needs to me in fact thrive in a world which understood and respected neurodiversity? Is autism the issue or is our world the issue?

I don’t actually know categorically as it is speculation but I do have some thoughts. Many of the people considered to have high support needs and who attract the ‘low functioning’ labels are people who do not communicate using spoken words. The world is definitely not set up for these people. Spoken words are considered the only valid means of communicating by most of the world. Many people who do not use spoken words to communicate are denied access to technologies and systems which would allow them to communicate. Excuses like the idea that keeping a person away from non-speech communication will somehow enable them to speak are cited. In other instances people are believed to have nothing at all to say and so denied access to vital communication methods. Imagine how frustrated and probably angry you would be in their situation, knowing you wanted to say things – often profound things – but being denied the opportunity. Imagine how this would impact on your relationships with those around you. Do you suppose it might fuel some ‘problem behaviours’? 

In fact attitudes around not speaking actually disable people. Many services including schools use IQ tests to determine a child’s needs. Many of these IQ test methodologies strongly favour the use of spoken communication meaning that children who do not communicate with spoken words are highly disadvantaged and get a false result. There are IQ tests which are better suited to non-speakers and when these have been used the children have often got scores which are very different. My friend and colleague Rosemary Crossley has been doing great work in this space for many years through the Anne MacDonald Centre and her books. This is just one area where a more understanding world would make an immense difference to autistic experience. Not speaking does not actually need to be a disability or disabling factor. With the right understanding and access to appropriate technologies people who do not communicate with spoken words can contribute and participate just like anyone else does.

Another disabling element of being autistic is around mental health issues experienced by autistics people, quite often anxiety and depression. These things are not necessarily part of autism but they can happen when a person lives in a world where they are not respected or valued and where people treat them badly for being ‘different’. Anxiety can be heightened by people dismissing concerns and telling people ‘don’t be silly. That isn’t anything to worry about.” Mental health conditions for autistic people are exacerbated by the extreme difficulties many of us experience when we try to access support for our mental health. Mental health practitioners and services are notoriously unhelpful and dismissive of autistic people. If the world was more understanding and respectful of us then it is likely we would have a lot less mental health pathologies and that if we did we would be able to access suitable help which did not involve the invalidation and misdiagnosis so many of us know now.

There are important elements of life which are clearly not ‘autism friendly’. Things like school – a place which should nurture children and foster a love of learning which in fact is often so hostile and damaging it causes mental health issues. Just think how many autistic kids are homeschooled or use other non-school options to complete their education? Look at work, another core part for life for adults. Autistic people are among the last employed and most disadvantaged people in the working age population. Finding a job which is supportive and positive is almost impossible for many on the autism spectrum. Even if people navigate through the selection processes and get offered a position, the workplace with office politics, colleagues who don’t ‘get’ autism and sensory onslaughts can be very challenging. Things are changing in this space thankfully but employment is still a big issue for many autistics. 

So what if? What if things were different? What if Neurodiversity was front and centre? What is verbal speech was not seen as the pinnacle of communication? What if mental health services were genuinely supportive for us? What if bullying didn’t exist? What if neurodiversity was seen as second nature and a valid form of human experience? If these things were true I am not sure autism would be seen as a disability in the way it is now. I want this to be where we get to, where the efforts of advocates and genuine allies result in a different world where being Autistic is OK and we don’t need to worry about representation fo advocacy any more simply because it is needed. That is my what if. 

Be proud in who you are. Love yourself. You are amazing just as you are.

Our identities are our own

Today a facebook friend commented on a picture of me wearing a shiny rainbow dress which a friend very kindly made for me. This was the comment:

“A dress? I thought you were non-binary now” followed by “Dresses are worn by those who are gendered female. Did you miss Yenn’s memo or something that they had come out as non-binary?” I responded with ‘Oh dear’ and that this was highly problematic thinking. While the comment may be seen as a lack of understanding of gender diversity and expression it is something else too: it is a person trying to tell another person how to express their identity. Being a gender diverse person means I get this quite a lot. I had someone tell me I shouldn’t attend an International Women’s Day event because I am not a woman this year. It seems that everyone has an opinion on what I should wear and which events I should attend in relation to my gender. I wonder if these people would appreciate me correcting them as to what they should wear as a cis gender person. 

There is another identity issue which many autistic people come up against and that it the one where people say ‘Don’t say you are autistic. Say you are a ‘person with autism’.’ These people are usually well-intentioned and have a background in social work or similar but what they are doing is Not OK. Telling someone from a diversity group how they are supposed to identify is insulting and patronising. A person’s identity is their own. Nobody gets to decide how another person should identify. To me this wish to ensure people are expressing themselves and identifying ‘correctly’ comes straight out of unconscious bias. Those of us who face disadvantage can surely not be trusted to understand the implications of our apparently ‘incorrect’ identity. This is definitely the case for Disabled people generally. Apparently we need well-meaning people to point out how we should define ourselves. One issue with this is that, as people facing disadvantage, we have considered our identity, probably at some length and over a long time. An identity is a key part of how a person views themselves in relation to the world. To have another person tell us we are doing it ‘wrong’ is not helpful.

In terms of gender, expression and identity do not have to be the same thing. I wear dresses one day and ‘men’s’ suits the next. My clothes come from the ‘men’s’ and the ‘women’s’ sections. But more to the point a non-binary person – or any person – should not need to justify their gender expression in order to satisfy people’s need to fit them into a particular gender ‘box.’

Autistic and gender diverse people already have enough to contend with without people doubting our identity and questioning who we are.

When people challenge or criticise our identities it takes a toll. For me I get thrust into that space of ‘I don’t think I’m trans enough’. This is not OK. People’s identities should be respected, supported and validated. We should not have our motivation questioned. If a person doesn’t understand someone’s identity rather than publicly challenging them, maybe they should ask them about it.

We have the right to our own authentic identity. How we choose to identify is our own and not up for questioning, doubting or challenging. I do not need people’s thoughtless criticisms and challenges to my identities which are hard fought and won over many struggles and many years. 

How a person chooses to identify is their identity. It is not up for discussion or disagreement. Simple as that.-2

Fighting hate with pride

Yesterday I was flying home from Brisbane. As I got on the plane I heard two men behind me talking. The flight attendant had made small talk with me, complimenting me on my earrings and then had complimented one of the two men behind me about being tall. His companion said ‘She f**king wants you’ loud enough for the flight attendant to hear. ‘Ick’ I thought and  found my seat. I took a minute or so to put my luggage in the locker and heard the same two men this time presumably talking about me. They made rude jokes about the possibility of having to sit next to me and called me a ‘troll’ – an impressive level of not understanding the term! I am almost always delightful online and respectful of people but I guess they were commenting on my physical appearance. I was very upset by this particularly as I don’t CARE what people like that think of me so their apparent belief that their opinions about me  mattered was pretty infuriating. Plus it was at the same time very sexist and quite transphobic and heterosexist two – a sort of bigotry trifecta!

This incident really got me thinking about what it is to be a non-cis male Autistic person in the world or for that matter a Disabled person. We are objectified, sexualised and at the same time desexualised despite that seeming impossible. I have had this kind of treatment my whole life. I am at the same time seen as somehow sexless and slutty. It is awful and never OK. 

Another issue which is even more worrying than hurtful banter is being the brunt of the anger of privileged people. When I say privilege I mean social privilege, based in ideas of intersectionality and disadvantage. There are many elements of disadvantage – being non-male —well, non-cisgender male, being Disabled, being a Person of Colour, being an Indigenous person, being poor, being LGBTQIA+ and a number of other experiences of disadvantage. Being privileged simply means you belong to a group which is not disadvantaged. For me I am a white middle class person – two fairly significant areas of privilege but then I belong to a number fo disadvantaged groups too. What privilege means is that a person experiencing it will not face the same structural barriers and social discrimination that others do. They do not have to work so hard to get the things which are supposed to happen almost automatically like a job or an education. Being privileged does not mean a person will necessarily have an easy life.

This understanding of privilege is a useful way ion approaching life I find. One thing I have learned is that when a privileged person feels disenfranchised instead of fighting the power they fight disadvantaged people. Just think of those white straight men’s marches. Because societal privilege is the status quo, privileged people who feel disenfranchised will not generally fight the stats quo – why would they? So instead they often turn that anger against people facing disadvantage. I have been on the receiving end of this on several frightening occasions. One time I was walking back to my hotel after a dinner at an autism event with two other autistic friends. I was wearing my most excellent rainbow wig and was quite happy from being at an autism event. I was talking a little loudly due to a couple of nice glasses of wine but I was certainly not being obnoxious. From behind us a very angry man yelled ‘I think you should f*cking shut up’. I could sense the anger and it being turned against my friends and I for daring to be different. We were very glad to get to our hotel and the man didn’t follow but I felt very vulnerable as I think my companions probably did too.

Another time I was at my friends and coauthors’ Emma and Jane’s wedding. Three of us were staying in the same hotel and we want back after the reception. Once again I had my rainbow wig and was feeling happy from all the wonderful love which had been floating around at the wedding in a beautiful way. My companions were a couple  – two women from New Zealand and the three of us were feeling pretty positive about the world. As we got in the lift an angry man started challenging us. I could feel the anger emanating from him. The couple got off at level 5. I was on level 10 and the angry man had pressed 9. In the trip from level 5 to level 9 I didn’t move. I didn’t even breathe out. My exuberance has disappeared and been replaced by terror. I was so relieved when the man got out at level 9. I got to my room as quickly as possible and locked the door with the latch.

It is definitely not OK that there is so much bigotry and hate in the world. I do not deserve hatred for simply existing. Nobody does. The number of friends I know who have been subjected to hate and violence over the years simply for expressing who they are is appalling. I saw the wonderful Hannah Gadsby doing a show where she talked about being the victim of a horrific hate crime and didn’t report it or even seek  medical attention and she is sadly not alone in that. People worry about not being believed or worse still having an even worse experience if they report the behaviour.

I don’t know what the solution is to stop this issue. Well actually I do. The answer is very simple: People who are perpetrators stop doing it. Well maybe not simple but that is the best solution and the way to make that happen is through people who face disadvantage being out loud and proud, being strong and representing to every corner of the world to see this is us. We are here and we deserve to be here. Yes, let’s do that because I have seen enough hate to last several lifetimes.

  

Yenn at the Sydney Gay and Lesbian Mardi Gras getting their pride on