Expectations 

I was on national news recently taking about disability discrimination. For the article I shared my autism diagnosis and also my mental health one – schizophrenia. I don’t talk as much about my mental illness as I do my autism and this response is one of the reasons why. A person commented on the news item that I did not have schizophrenia because I have accomplished so much. I was pretty upset by that, mostly because those stereotypes perpetuate the oppression of people with mental illness. I get these low expectations as an autistic person too and they are not OK.

The thing about hitting me with low expectations is that it is as silly as it is ablest. I am more accomplished than most people who do not have any diagnoses. When people hit me with low expectations, on the personal level it annoys me and makes me think the person levelling the low expectations in my direction is pretty foolish. The problem is that most people are not a ridiculous over-achievers like me. They may be struggling with their own internalised low expectations. So the person thinking them incapable basically validates their self-doubt it makes it hard for them to rise above it or feel very good about themselves. 

A few years ago I was very unwell in a mental health context. I accessed a lot of services and had a hard time. But I was still Yenn so found myself having a bit of a leadership and mentoring  role in mental health residential settings. A young woman in the housing I was in looked up to me and would ask me questions about life. One day she came up to me and said ‘I have schizophrenia. Will I be able to get a job?’ I told her that her diagnosis did not preclude her from getting a job and that I shared her diagnosis and had a job. I said she was in charge of the decisions she made and not to let anyone else’s negative expectations hold her back. I hope my advice was helpful as I hate to see people’s lives impacted negatively by the assumptions of others. 

Some of the low expectations I have come up against include a nurse in the psych ward telling me to go on the disability pension when I actually had a job which was supportive and paid well. Nothing wrong with the disability pension if someone  needs it but if you have a job you enjoy and that is supportive, stay with that I say. I had a doozy around my autism in 2015. I attended a dinner at Parliament House as an advocate. I got talking to an executive from a. Major bank and we had quite an interesting conversation. The bank executive then spoke to the non-autistic researcher I was with and well within my earshot said ‘ooh she’s so articulate isn’t she!’ I don’t know what the executive expected but apparently I wasn’t it! One of the worst ones came from myself. Shortly after I accepted my autism diagnosis and at a time when I was struggling with anxiety around employment, I wanted to quit my university degree and work in supported employment. Once again, nothing to be ashamed of working in supported employment but it was not something I needed to do. I had internalised a whole load of negatives around autism and thought I would be unable to study, despite being half way through my degree when I thought that and getting lots of high distinctions!

While I think people should check their privilege as it informs our understanding of others, I think people should also check their expectations. I have a friend who is young and has an Order of Australia medal. I am highly ashamed to say I got confused when I saw the ‘AO’ after his name thinking someone so young couldn’t possibly get an award like that. That was totally ageist and driven by low expectations of young people. We do this when we have assumptions and stereotypes about people. Some of the worst stereotyping happens when people belong to oppressed groups, such as autistic people. 

Low expectations can doom a person to not achieving their potential. Given the immense skills and wisdom that autistic people can have this is a waste both for the individual and for society. Things like functioning labels compound this. Those deemed ‘low functioning’ generally have low expectations paced on them and those deemed ‘high functioning’ have unrealistically high expectations placed on them. We need to see people as they are rather than predetermining their future based on assumptions and stereotypes. Instead of assumptions around capability why don’t we view people as they are with all their strengths and challenges and support them to achieve whatever they want to?

While it si evidence that palcing too low expectations on autiisctsi people is rally unhelpful, it is no better to place too high expectations on them either.

Why RU OK Day is essentially a good initiative but has many limitations

Thursday is RU OK Day, an initiative intended to raise awareness about suicide and depression. I actually think the concept is excellent and raising knowledge and promoting discussion around mental health and suicide prevention is a really good and useful thing which can save lives. I do have a few reservations about RU OK Day though, from my twin perspectives as an autistic advocate and a person with mental illness.

I was having a conversation with a friend who is very knowledgeable in these areas and we both agreed to some reservations about RU OK Day.

Our first concern was about the almost trite nature of it. People asking ‘Hi, RU OK?’ In the same manner as they would ask after your activities on the weekend or discuss the weather. If you actually aren’t OK this can be more unhelpful than the person saying nothing at all.

Another concern is around how prepared people are to respond if someone says they are not OK. It is almost like those promoting RU OK day didn’t get that far in their thinking but it is a significant issue. If someone gives the opportunity to share difficult mental health experiences but then doesn’t know what to do the information it is unhelpful and can make things worse. 

People who have alexithymia (emotion blindness) – which includes a lot of autistic people – may struggle to know whether they are OK or not. Or if they are not OK they may not know how to articulate it, meaning that the RU OK question can do more harm than good. It is bad enough having doctors ask you how you feel when you have alexithymia, without work colleagues and fellow students (or whoever) adding to the confusion!

Another difficult element of RU OK Day is that is happens once a year. Everyone is thinking about mental health awareness and suicide prevention, which is fantastic, but at other times there is much less focus. The conversations around mental health and suicide prevention need to be happening all the time, not just one day in September.

Some people find the idea of having a frank conversation about issues like suicide quite invasive, especially when it comes from someone they don’t view in a mental health support kind of context, like their boss or teacher. It is important to be aware of people’s privacy and space and not launch into uncomfortable conversations simply because someone saw a poster or watched a video. Some people have experienced stigma for mental health issues and may be reluctant to share their story and this needs to be respected.

The day also doesn’t really go very far in addressing the broader societal issues around mental health. It can be seen as almost superficial in this respect. It does not address the deeper issues around mental health services and access which are a problem for so many of us. Of course that is OK and not every initiative has to go to addressing the deeper problems. However, some people only know about RU OK Day in terms of mental health awareness and promotion. The level of awareness of mental health issues needs to go beyond just that one thing.

Despite these challenges I have seen some great ways of marking RU OK Day which I think are really helpful. For example I was in a work team once and we had a morning tea and a very genuine conversation about experiences of suicidal thinking and depression. I was a newish member of the team and it was quite confronting but it was also really helpful and supportive and I felt it brought the team together. We shared things which were hard but it led to more cohesion and closer relationships. I think the conversations around RU OK Day really need to be genuine in that way, otherwise it can be counterproductive and largely meaningless. 

I don’t want to complain about what is essentially a good initiative but I think we need to be aware that there are some challenges related to RU OK Day and keep these in mind.

I hope that those who are not OK can access positive support and helpful assistance on Thursday and on every other day too. And in answer to whether I am OK, I am getting there. I am usually getting there actually. My mental health is rather fraught and I have a lot of anxiety, mood issues and psychotic symptoms so my life is pretty much all about managing all that and making sure I am able to keep doing all the good things I do. 

RU OK?

Staying safe – Autism and predatory behaviour

Content warning: predatory behaviour and sexual violence – general references 

On Wednesday my phone rang. I didn’t recognise the number but I had recently done some media so figured it might be a follow up call from the TV station. The person on the other end of the line appeared male. They did not say their name which was odd. They asked if I was Jeanette, I said no, I am Yenn and that I used to be Jeanette but had changed my name ‘Don’t change your name’ the person said. ‘Your name is beautiful.’ They went on to say a bunch of creepy stuff. I told them I was going to hang up and block them. They hung up  and I blocked them. I have no fdea who they were, why they had my number or where they might be located. It was a very unpleasant experience and left me quite shaken. I reflected that I was a lot more assertive now than I would have been in the past. I was glad they hung up. In the past I would have been worried about upsetting them and would have probably stayed on the line. 

I posted about the experience on social media and had a lot of people relating similar incidents. Being victimised by creepy predators is a very common experience for autistic people. When I was younger I felt like I had a sign on my head saying ‘bother me.’ Predatory men featured very heavily in my life. I didn’t know what to say to deter them and I lacked any kind of assertiveness or self protection skills. I worried I would upset them if I didn’t do what they wanted. I found myself being attacked and victimised quite a lot. This experience is far from unique to me. Many others have the same problem but I think there so a particularly difficulty or autistic people and probably more often autistic women.

Autistic people are often taught to be compliant. Some of the ‘therapies’ out there are all about teaching compliance and doing what you are told to do. Often there is no distinction between compliance which is helpful and that which is damaging in this ‘training.’ Even for autistic people not subjected to unhelpful therapies, we often want to please others. People who are bullied or ostracised often develop a strong sense of wanting to be accepted. Sometimes this acceptance is by a predator. This can be the case with domestic and family violence situations. The will for acceptance by a partner can be so much that an abuser takes advantage of this. Another difficulty in this area for autistic people is related to the fact that e are generally quite kind and trustworthy. People tend to assume that other people have similar motivations to them so if you are kind and decent you might expect others to be the same. Some people re unable to imagine that another person could be predatory. We also tend to be very trusting and open. Another issue in this space is the difficulty many of us have in understanding facial expressions, body language and other non-verbal cues. Where others might realise someone’s intentions from these cues, we often struggle to decipher this information, leading to creepy situations which others might have spotted a lot earlier and taken steps to avoid.

So what is the solution to this? I remember a few years ago I posted a meme saying autistic people need self-protection skills. I guess this is true but I’m not sure it is the key issue. There is that saying ‘how do you stop rape? Don’t rape people’ which I think is apt here. Putting all the responsibility for self-protection on the victim fails to address the actual problem which is predatory behaviour. So how do we stop predatory behaviour? I tend to think that crime is both a social problem and an individual one. There are societal issues which drive sexual violence and predatory behaviour. Things like misogyny, homophobia, transphobia, ableism etc. are influenced by society so if we can address that then it is going to help address predatory behaviour. Advocacy and promoting respect is one way of achieving this. The individual nature of crime is difficult to address but there are ways it can be achieved. If everyone (or more people least) modelled respect and inclusion it would go towards addressing this issue. It can also help for autistic people to gain some self-protection strategies and that can go on at the same time of addressing societal issues. This is not an easy problem to solve. 

It is not OK that anyone is victimised, ever. It can cause lasting trauma and mental illness. It is bad for self-worth and a person’s sense of  pride in who they are. I am glad I was assertive with the person on the phone but I would have preferred not to have the experience. I would not wish any kind of predatory behaviour on anyone.     

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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.