I am four days in to taking medication for very recently diagnosed ADHD. The effects of the medication have been pretty much instant, significant and mostly very positive. The metaphorical distractible monkeys who used to run around inside my brain taking my attention are now sleeping peacefully and the soundtrack of my thinking is quiet and measured. And I am tidy! Anyone who knows me and the chaos which follows me everywhere I go will know how unusual a thing that is. My mum would be absolutely delighted to know that I have been making my bed each morning and putting all my clothes away. In the evening I lay out the next day’s clothes on the chair, put my meds in a pill box to take to work and ensure I have everything I need in my handbag. I keep thinking ‘who is this organised person and what have they done with Yenn!’   

I want to examine something my psychiatrist talked about in relation to ADHD. He said that the medication acts on two neurotransmitters in the brain: noradrenaline which controls focus, and dopamine which is the reward chemical. The medication gives you more of those two things, presumably to improve concentration and address impulsivity which can be involved in seeking a brain chemistry reward.  

I started thinking about the reward element of this during my second day on meds. For the past twenty years or so I have sought accomplishment and success. I thought this was because I am very ambitious and motivated and that I initially wanted to put as much distance as possible between the version of me at that time and the me who sought their mental reward from unethical and damaging means. My young adult self got their reward from dangerous and destructive behaviour.

On Tuesday – my second day on ADHD meds – I had some disappointing news. I absolutely love being in the media and would do media every day if I could. In the past I have been quite possessive of media opportunities and been very upset when something I expected to do was cancelled or, worse still, given to another person. I experienced the disappointment as a physical sensation, similar to feelings of grief. I just figured I was a nasty jealous person and resolved to try to be less of a dick. But that resolution didn’t really work. I continued to be a dick! On Tuesday I think I may have discovered why. I was asked to do a media appearance but the person organising it contacted me on Tuesday and told me that the media outlet had found someone else. In all genuineness I responded with ‘That’s OK. I am sure they will do a great job.’ Once again, who was this person? 

Being a reflective Yenn I considered my very novel and different response to this disappointment. I thought that maybe my striving for accomplishment and recognition was not because I was an egotist but because that was what my ADHD brain was doing to get its dopamine reward? Maybe the medication giving me some additional dopamine had offset my own need for a brain chemistry ‘fix.’  Maybe the reason I was able at age 25 to let go of many years of impulsivity and criminal behaviour was largely due to me swapping my reward fix from something destructive to something positive in the form of ambition and achievement? 

This idea really interests me. It makes me like myself more because I have always thought I was a jealous and mean person who wanted to gain every opportunity that I could. It also puts my school years into perspective. In primary school I started out going for negative rewards and was the class clown but when I was nine a new principal came along who noticed that I was probably gifted and nurtured my talents. Her praise was as good a reward for my brain as the laughter of my classmates when I had previously made a joke at the expense of a teacher.

The idea that being an ADHDer means I am wired to need more of a dopamine reward than others and to go to great lengths in order to get it helps me understand a lot about myself. I am relieved that it appears my poor attitude on occasion around opportunities and being competitive was not because I’m an awful person but because my brain craves a rush of dopamine every time I achieve something impressive. And this whole concept goes to my approach to my advocacy. A large part of what drives me is the need to change the way things are so that neurodivergent people and people with mental illness are accepted, valued, respected and included. But what happens when I remove the need for accomplishment and recognition in order to be motivated to do some things in the advocacy space? I hope it means that my motivation will be more closely focussed on making a difference and not adding to my book tally or doing some big presentation.

I know this is quite a reflective, introspective post but I think everyone could find it useful to consider what their rewards are. What gives you that rush, even if you don’t have ADHD? I think that what we find rewards us is where we put our efforts and direct our attention. It has certainly given me pause for thought and I look forward to possibly moving into a world where I consider what I do for rewards and reflect on where to direct that attention.

I know one thing and that is that I am really enjoying this journey of discovery I have embarked on.

About thirty minutes ago I started taking medication for ADHD for the first time. The first thing I noticed was that I was aware more of what I am typing meaning I have less typos (but still some!) It was a scary thing to do due to my mental illness which is affected by one of the neurotransmitters that the ADHD meds work on. I had an appointment with my psychiatrist today where we went through all the possible side effects and negative impacts and I decided it was worth the risk – probably. 

One of the things my psych said was to warn me about the attitudes of some people about ADHD. They think it is a made up diagnosis with no scientific basis and just an excuse for doctors to give out meds to kids. As a person who is pretty certain that they have ADHD this attitude is not helpful and does not tally with my experience, ADHD is not just about forgetting where you put your keys – although in my experience that is part of it! It seems to be quite a wide range of elements which affect day-to-day life. Things which autistic people struggle with such as executive functioning seem to be affected in ADHD as well. There is also a mood element and an anxiety element. 

As someone who took my first dose of ADHD meds 1/2 hour ago, I am not sure what to expect. There are a lot less typos than usual in this article. I usually get around one third of the words wrong and in this piece I have got about one in fifteen wrong. I feel grounded. Just before I started this piece I read a large piece of text in a small font. In the past my attention would have strayed at the end of every sentence but this time that was not the case. I read the text and remembered much of the content afterwards without needing to revisit it. I feel quiet, if that makes any sense. Like in the past there were monkeys in my brain competing to distract my attention and now the monkeys are asleep. I feel amazing actually.

I wanted to write this piece for myself as a record of going on meds and whether they made any difference. I think I can categorically say that they have. I am actually loving just being able to type more accurately. I did wonder if that would be an impact of my ADHD and I suppose it is.

I saw a meme about ADHD this morning which showed a young boy with a paper plane in class and said ‘what people think ADHD is’ and then a photo of a thirty-something woman with the caption ‘what ADHD actually is’ with a series of words underneath including things like anxiety, low self-esteem, distractibility and depression. I found it very relatable and resolved to find out more about ADHD, particularly what it means for people that are not me.

I had someone ask me about my views on element of ADHD at an autism event on the weekend. This made me realise I don’t really know a lot about it, even when it comes to myself. I am genuinely newly-diagnosed so I haven’t been giving ADHD a lot of thought until the point where I sought a diagnosis. My issue is that because I am quite a well-known autism advocate there is an expectation that I should know about all neurodiveregnces and I really do not! I think I will need to do some research, which, thanks to the meds, may be a lot easier than it was in the past! My psychiatrist told me he thought my ADHD went unnoticed because I have a keen intellect and managed to work out useful strategies to manage the challenges I face. I suspect that may be true. It is a different sort of masking I think. I am looking forward to learning some more around my new diagnosis and how it affects and shapes others who also have it.

The meds have now been doing their thing for about an hour. I think I am going to find them really helpful. I am finding myself doing one thing at a time, which is almost unheard of for me. It does worry me a bit what Yenn on meds is going to be like in terms of accomplishments. Will it affect such things because if it does, I’m already a ridiculous over-achiever so I apologise for potentially doing a bunch of high level stuff in the future! 

I am looking forward to seeing where this journey takes me. And I realised that there is no word similar to ‘Autistic’ for people with ADHD. We do not have an identity-first term. I have given this some thought and have a couple of suggestions… ‘ADHDer’, ‘ADHDby’ or even ‘I am ADHD” and just reclaim it there and then. Would love to see others’ thoughts on this. Onwards and upwards and change the world! 

Yenn    

Content warning – abuse in mental health care settings 

A few years ago I headlined a comedy night in Canberra which was part of Mental Health Week. I was selected not so much for my comedic skills (which I actually possesses a few of) but for my experience as a person with schizoaffective disorder who had a wide range of experience in mental health services, often quite negative and in some cases abusive. My set went off well and I got lots of laughs and cheers and hopefully imparted some knowledge among the laughs. At the end a woman introduced herself to me and said she had been a nurse in the ward that I had been in several times a few years previously. She said how wonderful it was to have me as a patient because I told her ‘things about patients’ rights and I never heard of that before.’ This person had been a nurse for over twenty-five years! I was horrified to be her only known experience of advocacy but not really all that surprised.

Accessing mental health services for me – and for many other autistics and neurodiverse people – has almost always been fraught and unpleasant. I have been misdiagnosed on several occasions, not because my autism was ambiguous but because clinicians dealing with me had little or no understanding of autism. How do I know that? Well every clinician I have ever met who does have a good knowledge of autism has confirmed enthusiastically that I am autistic. Ignorance is a huge issue in this space. When ignorance combines with another attribute held by (in my experience at least) many psychiatrists – arrogance – then treatment for an autistic person can become very unhelpful indeed. If a clinician doesn’t know a person is autistic then it is going to skew their understanding of that person and their needs, often to an extreme degree. When managing mental health issues, understanding of what is going on for the person is key but for autistics this is often lacking in those treating us.

I remember on one hospital admission a woman physically attacked me for no reason (well I guess the reason was that she was really unwell and had some issue causing her to be violent). I told the nurses as I was really upset and they said ‘you shouldn’t be so annoying then’ as if the violence was somehow my fault. Another issue was inconsistencies and uncertainty. Autistic people – including me – do not do well with uncertainty or inconsistencies in any setting but when we are under the care of the psychiatric ward this is heightened. The number of times I was promised something by hospital staff and then it didn’t eventuate is very large indeed. This caused me major distress. 

Other issues with mental health services are the general lack of trust workers  often have for people under their care. Big screens at the community mental health clinic keeping the receptionist ‘safe’ are just one thing which always bothered me. I mean yes, sometimes people with mental illness can be violent but so can people at the pub on a Friday night. Could you imagine if there was an oversized screen suddenly erected at the bar when you went for your after work cider? It would be on the news as the nanny state gone mad. People with mental illness accessing public health services often feel quite powerless and do not say anything about any of the injustices, mistrust or unhelpful practices.

If I go back in my history to 1996 I find an even less helpful mental health system. I had impulsivity issues (I have recently been diagnosed with ADHD which probably gives some context to that), I was very depressed and psychotic and I was in the locked ward and felt really trapped and wanted to get out. I didn’t have much capability to express any of this so did so by acting out – trying to run out the door when the nurses weren’t looking, that kind of thing. I was treated like a criminal, put in seclusion for a week, denied my antipsychotic medication (they changed that one pretty soon afterwards as it was clear I needed it!). I felt so powerless and was so confused that I thought prison was a depression cure and shoved staff members, hoping they would call the police and grant my wish to be locked up. When this didn’t happen I shoved and insulted the rather arrogant head psychiatrist who had denied my diagnoses of autism and schizophrenia and put me through what was at that point months of hell in his little kingdom. He discharged me and called the police. My parents tell me of a court hearing I didn’t attend where a horrified magistrate asked the head doctor if he realised he was sending me to homelessness or prison. Apparently the psychiatrist said he didn’t care. I did go to prison. It was very scary and unpleasant and nearly killed me in a variety of ways. You will understand I think why I struggle with mental health services after all that misery and injustice and using criminal justice pathways for mental health issues. 

I think after all these experiences the thing which shines through is the need for an attitude of respect and humility from psychiatrists and other mental health workers. The other thing which is critical is an understanding of autism – what it means generally and what out means for individual people on the spectrum that come into the care of psychiatric services. Those two things would have made my own experience so much less awful I think. To my mind, everyone has the right to access decent mental health care which is actually helpful. Autistic people historically and currently face huge barriers in accessing this but that does not mean it is impossible. I wish I could talk to every single psychiatric nurse, every psychiatrist, everyone working in delivering mental health care and tell them my experiences and why nobody should have to deal with that. I see things changing a bit but they need to change more. 

On Friday I gained an additional diagnosis: ADHD. I have strongly suspected I have that additional neurodivergence since meeting many others who are autistic and have ADHD and seeing how similar we are. My absurd levels of energy, my difficulty focussing on ‘boring’ things (ie most things that aren’t related to my passion) and my hyper-focus for non-boring things. My psychiatrist asked me a load of questions about my past and my family history and decided to prescribe me ADHD meds which require a pretty exhaustive authority script given they are drugs that lots of people who don’t have a diagnosis of ADHD would like! This approval should go through this coming week and I will have an appointment to discuss the meds and some of the issues which might occur. I have a diagnosis of atypical schizophrenia / schizoaffective disorder so there is a chance the ADHD meds will do bad things to my brain chemistry.

I am keen to try the meds as so many friends have said they have been amazing and life-changing. It is a bit scary thinking I will be taking something which could revolutionise my life but could also make me very unwell! I had better pay attention in my psychiatrist appointment I guess!

It is funny gaining an additional neurodivergence diagnosis. When I was diagnosed as autistic it was one of the most significant events in my life. Before Friday I wondered what the ADHD diagnosis would mean and it is actually nowhere near as challenging and liberating as my autism diagnosis was. I think this is probably because I already knew I had ADHD so it wasn’t really a new piece of information. I think the fact I am neurodivergent in one way probably encompasses other neurodivergences in my sense of identity. When I was diagnosed  as autistic in 1994 I had no idea wheat it meant so it was a journey to get to a point where I understood and accepted it but now I am happy in my Neurodiversity so an additional diagnosis doesn’t change much in terms of identity other than to make me feel closer to others in similar circumstances.

The psychiatrist said I probably went undiagnosed due to being able to figure things out using my intellect more than anything else. I guess I ‘passed’. Some strategies I have used include skim reading big slabs of ‘boring’ text and teasing out the essence. It is actually impossible for me to read right through an academic paper or a strategy so I look for headings and key words. That I am a Masters graduate and a level 6 in the Commonwealth public service is probably testament to the effectiveness of that strategy! I never really read anything other than novels at school. I never studied for an exam but my ability to distill essences and remember spoken or visual information has allowed me to excel academically. 

I actually don’t know much about ADHD. I am keen to find out some more and maybe join some more ADHD groups online. My knowledge of autism is broad and based on conversations with thousands of people over the years but my knowledge fo ADHD is confined to my personal reflections and the experiences of some friends. 

I like my additional neurodivergence. Like autism it seems to come with some great positives as well as challenges. I wouldn’t swap my boundless energy and ability to focus on things I am interested in for hours on end. I think it has caused me some issues over the years especially around not knowing consequences. I still struggle with consequences and have to mentally explain to myself what would happened if I did some thoughtless our impulsive action and then tell myself why that is a bad thing and I shouldn’t do it. I seem to have a range of strategies and workarounds which have enabled me to live well for many years even if my younger life was difficult.

I am looking forward to trying the meds although my advocate persona wonders if I should be medicating a neurodivergence. However, my practical brain says ‘Take the meds!!!!’ I actually wonder if my psychiatrist got it wrong and I do not have ADHD at all but am just naturally bouncy and distractible. I have had similar doubts around every other part of my divergent character (‘Am I REALLY Autistic? I’m sure I don’t actually have schizophrenia!’ And the more recent and frustrating one ‘I’m not REALLY Non-binary am I?’) It would seem that self-doubt follows me around wherever I go, as I imagine it does many others too. Realistically I am pretty sure a psychiatrist who is a specialist in ADHD would not diagnosis me with it unless I had it. 

I am looking forward to exploring this newly-identified part of who I am. I think my autism impacts on my ADHD and vice versa, making both look slightly different. I love a nice bit of self discovery and I love a nice bit of advocacy so I look forward to this new part of my journey.

 

Autistic people are often accused of things which were not ever their intention. We get told we are manipulative or sneaky, rude and disrespectful, even that we are creepy when we do not mean to be. A lot of the time this is the result of poor understanding of autistic thinking styles and communication approaches. While it may sound minor, these misunderstandings can lead to some very negative consequences for us. 

A misdiagnosis of borderline personality disorder (BPD) is a very common psychiatric response to misunderstanding autistic people. We are seen as disordered and intentionally difficult when in fact we are merely trying to make sense of the world. The reason for the misdiagnosis of BPD is often this: many Autistic people have emotion blindness/Alexithymia meaning that they may seem emotionless one minute and highly emotional the next. In BPD there is a thing called emotional dysregulation which looks similar to alexithymia but is different. Autistic people often join social groups or do activities in order to be socially accepted. These interests and connections can change, sometimes rapidly, which looks like another BPD symptom – identity issues. However it happens for a different reason in autism. One of the main elements of BPD is self-destructive behaviours – self harm etc. Autistic people can engage in these behaviours too but for different reasons. This makes autism look like BPD but if doctors understood these different reasons for similar elements then that misdiagnosis would almost certainly be a less frequent occurrence. BPD is not a good misdiagnosis to get as it involves a lot of prejudice from mental health workers and it is not helpful to have a mental health diagnosis which is inaccurate. I have met countless autistic people who have been misdiagnosed with BPD. It should  be noted that the perception that people with BPD are manipulative and the stigma surrounding them is just that – stigma. The issue with misdiagnoses is that it makes it difficult to access the right services and can confuse your sense of who you are rather than one diagnosis being somehow ‘better’ than another.

One misunderstanding can happen when autistic people look in a direction they are not ‘meant to’. When I was a teenager one of my work colleagues thought I was staring at her legs.  I probably was but not consciously. I often just find myself pointing my eyes in a direction but I am not processing any visual information, I’m just looking that way. The young woman concerned thought I was rather pervy and it was very awkward. Another ‘looking’ issue can happen when someone struggles with eye contact so doesn’t look at people’s faces. They might look down but what is under the face? Well the boobs for one thing and looking at women’s breasts is generally viewed as really pervy and misogynist. Very hard to explain that you are not doing something for the same reason which neurotypical people are convinced you are. In fact the explanations autistic people make in these situations tend to be met with total incredulity from the neurotypical person making the complaint as the ‘excuses’ are not in the knowledge of the accuser. In these instances explaining can actually do more harm than good.

A lot of this issue comes from a pack of autism knowledge and understanding. This is bad enough when a person has a diagnosis but when they don’t it can be really challenging and lead to a range of difficult situations including criminal sanctions. I heard a story of a young autistic man who was on a bus. The women in front of him was wearing shiny silver tights. The autistic man thought this was a wonderful stim and touched her leg. He was charged and had to go through a very stressful court process for doing something which, while it may have seemed very creepy to the person it was done to, was in fact not done with any violent intent. This can be quite a tricky situation as the feelings of the ‘victim’ need to be considered as well. But it would have been much easier for that man if the police had some knowledge of autism and asked him why he did it rater than pushing the line of criminal justice. 

Most of the time autistic people are keen to do the right thing., We are honest and generally very decent, thoughtful and law-abiding. There are exceptions to this of course but it makes it very difficult when we are accused of doing unethical things simply because our approach is not understood.  

These misunderstandings can leave autistic people feeling very bad about ourselves, being told we are doing something terrible when all that is really happening is a misunderstanding. Asking autistic people why they do something is a good start but the most important element of addressing this issue is to understand that autistic people communicate and express ourselves differently and that this is OK. We do not deserve blame and judgement and it can be extremely confusing for us to be judged as if we were neurotypical people. We are NOT neurotypical people and need to be seen as who we are – autistic people trying to navigate the world the best we can. 

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?

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. 

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.     

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 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.