I am enough. You are enough. We are all enough

This post is all about the idea of not being ‘enough.’ Many of us who tick a few diversity-type boxes are given the view – either from others or ourselves – that we are somehow not enough. A good example is my gender identity. I am a very out loud and proud non-binary person. I know my identity. I am strong and firm in my sense of who I am as a trans and non-binary person. However for some time I was haunted by the idea that I was ‘not trans enough.’ The clothes I wore were in some way not androgynous enough. I hadn’t had any medical intervention related to affirming my gender and people were always misgendering me and assuming my gender based on my appearance. I doubted my identity as a trans person. This feeling stayed with me until quite recently. Then I came across the wonderful realisation that I am transgender so by necessity I MUST be trans enough because I am trans! My identity is what makes me who I am, not some ignorant people’s assumptions or my own self-doubt. I am more than trans enough. I am beautifully trans. I also discovered that pretty much every trans person in the world gets misgendered. It says nothing about our identity and everything about the ignorance and assumptions that others can make. It was a lovely realisation for me to understand that my identity is valid.

There is another ‘enough’ issue though which is possibly more challenging than that borne out of self-doubt. This is the ‘not enough’ that other people project onto us. I attended a Zoom meeting of disability advocates last year. I felt a sense of hostility but dismissed it. Then one of the attendees asked if I had support workers. I said I didn’t and the sense of hostility increased. I don’t know for sure because I am not inside people’s heads but I strongly suspect I was viewed as ‘not Disabled enough’ for this group. I wasn’t asked to attend any further meetings of the group. Another person cast aspersions on the degree of severity of my mental illness because I sold a house whilst recovering from an episode of psychosis. Apparently I shouldn’t talk about my mental illness because it was evidently not very severe. 

I needed to unpack that accusation. In 2019 I became extremely  unwell with psychosis and depression. I spent eight months in hospitals and residential services. I put the property on the market less than a month after being discharged from hospital. The reason I sold the property was that anxiety around home maintenance had in part triggered the episode of illness and Mr Kitty, my beautiful black cat and the soul of my apartment, passed away while I was in hospital and I couldn’t stand being in the place. Selling the property was extremely stressful and resulted in me going into residential care for a further two months but the alternative of keeping it was far worse than the option of selling it. So yes, I sold a property but not knowing the circumstances behind the sale resulted in an unhelpful assumption that I was ‘not unwell enough.’

I think the issue with ‘not enough’ – both projected onto your own view of yourself or others’ judgement – is that it is based in assumptions. You cannot know another person’s journey. Each action has a story behind it and what one person finds challenging another finds easy and vice versa. We are ALL enough. It is not right to assume on behalf of another person and it is not OK to question yourself for that matter. Just remember that we are all enough. We take our own district path though life. One of my very early Yemes was a picture of a small child with the caption ‘you do not know what she will be. She is precious whatever her path’. And I would add to that that she is enough. We are all enough and it is not OK to judge others based on incomplete information or assumptions and stereotypes.

Misdiagnosed and undiagnosed

I speak with a lot of autistic people and neurotypical parents of autistic kids. One thing which comes up extremely frequently is the issue of misdiagnosis or being unable to access an appropriate diagnosis. I know this all too well as it happened to me. In 1994 I was diagnosed with autism. I was one of the first adults in Australia to gain the (what was then) ‘Aspergers’ diagnosis. Very few people knew what it was or what it meant. This was certainly the case with mental health clinicians. My autism diagnosis was made by the wonderful Dr Vicki Bitsika, a clinical psychologist. It was considered appropriate even then for a clinical psychologist to make the diagnosis bit sadly some psychiatrists struggled with the concept. 

I have an additional diagnosis of schizophrenia so I have spent a lot of my adult life in psychiatric hospitals under the care (and I use that term quite loosely in some cases) of psychiatrists. In 1996 when I was 22 I became very unwell with psychosis. I went to hospital and was there for a month. The doctor diagnosed me with psychotic depression and said nothing about the autism diagnosis. I was discharged form that hospital but I didn’t stay out long. A couple of weeks later I found myself in a different hospital. This time the chief psychiatrist was adamant that I was not autistic. Part of the problem was that I had been diagnosed by a psychologist and more to the point a young female psychologist. This chief psychiatrist was quite arrogant. He didn’t listen to my parents’ account of what was going on. To my knowledge the doctor’s only understanding of autism was from a young man who was also in the hospital and who was a much more ‘typical’ autistic person. I was a drug addict and ex-prisoner and according to the doctor autistics were rules-focussed studious people. I gained a misdiagnosis of borderline personality disorder and spent the next few years being discriminated against in mental health services as a result!

Accurate and timely diagnosis is so important but it is denied to so many people. Diagnosis is a key part of many autistic people’s identity and it determines what you do to manage any challenges so it is really important to get it right. While self diagnosis of autism is perfectly valid a lot of people feel better having the ‘official’ diagnosis and it enables you to access services like the National Disability Insurance Scheme in Australia. 

One issue which happens is – similarly to my experience – clinicians holding a stereotypical view of what autism is. I hear so frequently people saying that they or their child missed out on a diagnosis due to them being able to make eye contact or be social. Others miss a diagnosis because they are adept at masking. So masking – which is a survival strategy to manage being autistic in a hostile world results in people not being able to access the diagnosis which would help them access supports in order to navigate life! 

Clinicians need a lot more knowledge and understanding of autism beyond the stereotypes and ‘typical’ experience. I don’t want to talk about ‘female autism’ because I think that is also a stereotype and not particularly helpful, especially for gender divergent folks or cis gender women who do not fit the ‘women’s autism’ box but I will say that gender definitely plays a role in diagnosis.  I think clinicians need to undertake training in autism preferably run by autistics and that they need to understand that many of us do not fit the stereotype. Some people go to several different clinicians before they get a diagnosis. This can actually be viewed negatively and I have known parents to be accused of Munchausen’s by proxy because they were simply trying to get a suitable diagnosis for their autistic child. 

There are other issues around diagnosis. These include cost. In many countries an autism assessment is not funded by government so people have to pay from their own funds. For some the cost is beyond their reach. Geography is another issue. People in regional and remote areas are often less able to access an autism assessment. And some parents won’t seek a diagnosis for their child as they don’t was to ‘label’ them. I would respond to this by saying is a child actually is autistic then a label combined with appropriate support is most likely going to help them with their identity and their ability to navigate the world. If a person is autistic it is not a label it is reality! 

Diagnosis is important and misdiagnosis or a lack of diagnosis can make life a lot harder for autistic folks. 

All about anxiety – experiences and thoughts on how to address it

I am a person who checks. This morning I checked the washing machine three times as it went through its half hour cycle. I checked that the virus protection on my laptop was working -twice – and I checked that the dishwasher was still running and was not leaking anywhere. There is no reason that any of these things would not be working but in the past I have had issues with plumbing and being hacked so apparently I will be checking these kinds of things for eternity! Anxiety is my constant companion in my journey through life. I worry about lots of things. I catastrophise and see issues where there are none. Sometimes well-meaning friends and mental health workers will tell me not to worry, that everything will be OK. To that I say that if anxiety listened to logic then psychologists woful be out of a job!

For me anxiety comes with an additional little ‘gift.’ If I get extremely anxious over a period of time then the anxiety trips off the psychosis chemicals in my brain and I suffer a LOT. This has happened six times in my life and each was horrible in its own way. I am still recovering from an episode of psychosis in 2019 and I am still not really OK. So when I start to get anxious about something then I also become anxious about the potential for the anxiety to completely derail my mental health. It’s exhausting!

Autistic people often experience anxiety. I once said in a presentation that all autistic people have anxiety and got corrected by an audience member saying that not ALL of us have anxiety. I had to give them that as I don’t know all the autistic people in the world but I will note that most of the autistic people I know definitely experience anxiety, It is one of those ‘Venn diagram’ things that autistic people often experience but which are not exclusive to autistics. Similar things are sensory processing issues, dyspraxia and alexithymia. 

I use a number of strategies to address my anxiety. You might think that these strategies are ineffective as I still have major issues with anxiety. I think that if I didn’t use strategies then the anxiety would be considerably worse so I use the strategies. Some of the things I find helpful are:

  • Distraction. Distraction to my mind is the gold standard in mental health strategies. It is mine – and many others’ – go to when anxiety comes knocking. Distraction means focussing on something other than the mental health issue. My best distractions are work and TV. Sometimes the anxiety is so bad that distraction won’t work but even then it often helps a little even if it doesn’t ‘fix’ the issue. Distraction may need to be practiced repeatedly and that is OK. It can be hard to remember to do distraction. I have a list of distractions and when I am having a hard time I work down the list.
  • Breathing exercises. Anxiety is as much a physical as a mental thing. In evolutionary terms anxiety exists to prepare us for attacking or fleeing from a threat. The physical response to anxiety can be addressed through breathing exercises. When the physical response to anxiety is lowered so too is the mental response so breathing exercises can be really effective. 
  • Mindfulness. Mindfulness is a way of thinking based in Buddhist philosophy. It includes a number of elements such as a number of focussed meditation exercises. Part of the philosophy underpinning mindfulness is that thoughts and feelings are fleeting. The idea of standing in an island in steam and watching your thoughts and feelings floating past. You do not need to hold onto them and can just let them float by. Mindfulness is all about not dwelling on the past or worrying about the future as that will not change anything. Mindfulness is all about being in the moment. There are lots of helpful resources around mindfulness.
  • Try not to avoid issues. Often we become anxious about something and we put off doing it. For me the washing machine would always stress me out so I would put off running it until my laundry basket was overflowing. Putting it off actually made it harder to do. Now if I find myself avoiding doing something due to anxiety I use the Nike philosophy and ‘just do it!’ I have found this to be very helpful.
  • A mental health worker once have me an excellent strategy for anxiety which I hadn’t come across before. He said if there is something you are anxious about and is causing you distress, imagine it as someone knocking on your door. You cannot help the fact that they are there but you can decide whether or not you want to let them in. I extended this a bit and when in this situation I imagine that Donald Trump is at the door. Now there is no way I would let Trump into my house so it works well with anxiety-related thoughts!

I hope some of these tips and strategies are helpful.  If you experience anxiety remember you are not alone. It is one of the mots common mental health issues and is nothing to be ashamed of or to hide. Talking to supportive people can help manage anxiety.

Attitudes and autism

Today is International Autistic Pride Day. I don’t want to talk about pride specifically but about attitudes around life and also around autism. A positive or negative attitude can make a huge difference. The reason I am such a passionate advocate stems from this. In 2012 I met a young autistic man who was very limited in his life. When I told him I was autistic and had written at that point one book and worked in the public service he responded with ‘that is impossible. You are lying.’ Much and all as I wasn’t very happy to have my life considered a lie, I was more upset that for this person my life actually was impossible. He had been given negative messaging about being autistic and his capability all his life and shielded form doing anything remotely challenging. He is the reason I speak about resilience all the time as the negative messaging and shielding of this person had resulted in their low self confidence and their belief they were incapable of doing much at all.

Sadly an autism diagnosis for some people means they receive a bunch of negative messages about what they can do from those in their life and often influential people in their life like family members or educators. We need to be really careful about what messaging we are giving to autistic people. There is a fine line between being realistic about a person’s capability and thinking – and conveying the thought – that they are incapable. 

A strengths base is really useful, especially for autistic children but for adults as well. I see a lot of issues with attitudes around autistic people who are viewed as ‘low functioning’. And as an aside, I hate the functioning labels for autistic people. They are unhelpful and in many cases actually do damage to the person’s development. When I talk to parents of kids who are given the ‘low functioning’ label the kids are often denied the opportunity to do anything much and considered totally incompetent. This becomes a self fulfilling prophecy and that child is very likely to struggle to archive their potential.

I often give the example of driver’s education for teens. If you tell a teen that they won’t be able to drive and discourage them from doing driver ed then they are unlikely to ever learn to drive (I know this because it was me and I still don’t drive at age 46!). Conversely if a teen wants to do driver ed and teachers encourage them and say ‘you might find it a bit tricky but I believe in you and will support you to learn to drive’ then the outcome is likely our be very different. Children and young people pick up on the attitudes of others – and especially their parents – and adults can forget the level of influence they have on that child. 

The messaging we give people shapes their future and their outcomes in life. If you receive negative messaging about your capability throughout your childhood then it is likely you will struggle later in life and lack the confidence to try new things or engage in activities that you would enjoy. Negative attitudes limit autistic people. 

And I want to unpack some internal attitudes as the messaging we give ourselves is also influential in how we navigate through life.

A negative attitude around my life is ‘I have schizophrenia. I get unwell every few years and it is absolute terrifying hell.” However I could view that statement this way “I have schizophrenia. Most people who have schizophrenia are unwell constantly and cannot do any of the many things I do. While I have a scary illness I also have a reprieve from it for years at a time which allows me to write books and do other good things. I am extremely fortunate”

Both of those statements are true but if I focus on the first one I will get very stressed and upset and focus on being unwell and how scary and unpleasant it is. If I focus on the second statement it puts me in a positive frame of mind and see things differently. I will be less stressed about my illness and getting unwell and instead feel proud that I achieve all I achieve despite that diagnosis.

The idea of ‘self talk’ is not new but it is a really important thing to be aware of. A lot of autistic people are (understandably) quite negative in how we see ourselves. It is important to focus on the positives if we can. It is something which grows with practice I think. I can struggle with negativity and self doubt and I need to reframe my thinking to ensure I am focussed on the positive. It  is a bit of a work in progress but well worth doing.

So be proud for Autistic Pride Day and remind yourself— and / or your kids – that you are amazing and should be proud.

The case for autistic pride

Friday June 18 is Autistic Pride Day so I thought I would write a blog post all about autistic pride.

Sometimes people say ‘why would you be proud? You can’t help being autistic. It just is.’ I think for members of marginalised groups, like Autistics, pride is a political act and a way of asserting our worth and value. Pride is a counter to discrimination and stigma. To be outwardly out loud and proud is a way of challenging the negatives which are so prevalent.

I am proud. Pride is about validation and respect. Autistic people live in a world which:

  • Devalues us
  • Subjects us to ‘therapies’ which cause trauma
  • Gives messaging that we are incompetent, broken and that our views and experiences don’t matter
  • Denies most of us the right to work
  • Misdiagnoses us with mental health and other conditions that we don’t have 
  • Murders us
  • Drives many of us to suicide and self-harm
  • Tells us our communication is wrong
  • Denies many of us the right to access augmented and assistive communication meaning people cannot be understood
  • Misrepresents us in media 
  • Denies some of us access to gender affirming medical procedures 
  • Tells us we can’t know key parts of who we are, such as our gender 
  • Laughs at us
  • Uses ‘that’s so autistic’ as an insult or criticism
  • Bullies us. A lot 
  • Expects us to mask but when we do mask invalidates our experience as autistics as ‘you don’t look autistic’
  • Lots of other horrific and traumatising things 

Autistic pride is a counter to all these things and as such it is very much needed.

What does autistic pride look like?

Autistic pride is about promoting our needs and wants. It is about being able to be our authentic selves. It is about being outwardly proud to be who we are and to be confident to say ‘I am autistic’. Pride is about knowing we are OK just the way we are. Autistic pride is about people respecting and validating us. It is about changing the world to be more inclusive. It is about listening to autistic people. It is about recognising that autism can be viewed as a different and equally valid culture. It is about knowing that autistic people speak a different language to neurotypical people, and we are speaking fluent autistic and not speaking poor neurotypical. Autistic pride is about learning from autistics. It is about including us on boards and committees as equal participants to the other members. It is about supporting us to engage with our passions. It is about not thinking autism is a tragedy but instead is a different kind of amazing.

It is lots of other things and it means something different for each person.

The world has been changing lately in terms of autistic pride. For example representation in the media is being viewed differently. Even a few years ago nobody would have said anything if an autistic character in a movie was played by a neurotypical person but now that is (rightfully) seen as not OK. Even people not in the autistic community have some knowledge around autism that surprises me. When I started my work in advocacy in 2005 most of the parents I spoke with viewed their child’s autism as a tragedy or a curse. Thankfully this is not the case anywhere near as much and most parents I speak to now are more coming from a strengths and neurodiversity perspective.

I remember a while back talking to the local autism organisation and asking if they wanted to do anything for April and they informed me that they were doing something for Autistic Pride Day instead. I was delighted – and a little surprised! It illustrated that things are changing in a good way. However, these kind of attitudes can change back so it is important not to be complacent. There is still a long way to go ad I am constantly talking and educating others around autistic experience, rights and pride. 

I definitely have my pride on for June and every other month too. I went from not accepting I was autistic in my twenties to being very reluctant to talk about my autism to being extremely proud and visible. I am now probably one of the most visible people in the advocacy space anywhere in the world and I absolutely love it! I wish a sense of pride and positive self identity to all my fellow Autistics – and anyone who faces disadvantage for belonging to a ‘diversity’-type group. Yep, get your pride on because it is good.  

It’s not a popularity contest! – why I don’t mind that some people don’t like me

I did a quick calculation the other day and realised that I have seven people who have been friends in recent years and who now have some very negative feelings about me and would be considered ex-friends. The surprising thing about this is that it doesn’t worry me anywhere nearly as much as it would have in the past. The seven people dislike me for different reasons although they haven’t actually come out and said why but I can get a fair idea based on the things they have said. One is transphobic, another wanted me to advocate on their behalf and I couldn’t due to conflicts of interest and one was jealous of my accomplishments-  well I think so! As long as these people do not do anything terrible to me I am supremely unconcerned that they don’t like me. I figure that I am allowed to dislike some people so surely others can dislike me!

In the past I had very few friends and was very insecure. The very idea of losing friends or friends disliking me was the source of much anxiety. I would do anything to keep a friend including pretending to be someone that I wasn’t or squashing down my identity in order to please others. I was what people call a ‘people pleaser’ in a big way. When I was in prison in the late 1990s keeping my peers happy and not making enemies was a big deal as, unlike at school, the bullies in jail could kill you. I learned how to mask and fit in and please others at a very high level! In fact I was so adept at fitting in that I forgot who I was and lost my identity. I had to work out who I wanted to be when I left that lifestyle. This was actually not such a bad thing in hindsight as I think I chose quite a good personality and character for myself. Certainly better than the destructive recidivist I had been! 

As a young adult with a new character I still struggled with the people pleasing and being terrified of upsetting people. I had a stalker and I still tried to keep her happy, terrified of making an enemy. Then I moved interstate to take up the opportunity of a lifetime as a public servant. I shared a house with someone who it took me a while to figure out was a bully. She was middle class and liked art and never got drunk and threatened me like my stalker had! I lived there for a year before I realised she was controlling and disrespectful. I was still so afraid to cause offence that instead of just moving into another rental I bought a property as I knew she would see that as a valid reason to move out. I didn’t like the property I bought and it caused me major mental health issues on several occasions but it seemed a better option at the time than challenging my housemate and risking rejection! Now I would probably say ‘I’m moving out. See you later’ and not care what she thought but that was not within my capability at the time!

So what changed? The main thing that changed was that I grew in confidence and self worth. It doesn’t do any damage to my sense of who I am if someone dislikes me. I am confident and value myself so it takes quite a lot to chip away at that I also have a lot of friends and social contact now whereas in the past I didn’t. I used to have about three friends when I was in my late twenties. Had I lost one of them it would mean that I only had two whereas now I have dozens of friends. I think being bullied a lot made it harder for me to cope with disagreements or losing friends as I assumed I was always at fault. I now know that isn’t the case. I am sure I am at fault sometimes but not all the time. And if you apologise to someone and they don’t accept your genuine apology then that is probably more their issue than yours. 

Assertiveness is another element in this. I used to lack assertiveness but now I have plenty of it. The danger with assertiveness is that you can be assertive and it works and that is great but you can also be assertive and the person responds badly. This has happened a few times for me and I just have to let it go. I know assertiveness is a good thing more often than not and if it backfires well so be it I guess! The best thing about not being terrified of losing friends is that I don’t find myself in friendships which are all taking and no giving. This used to happen for me all the time and I hated it. I would avoid confrontation to save a friendship which really wasn’t working when I would probably have been better off ending the friendship. 

So yes I have at least seven enemies that I know of and that is actually OK. Life really isn’t a popularity contest. If you lose friends or excise them from your life for your own protection then that is actually not the end of the world. 

Talking about suicide

Content warning: suicide, mental health

I have been keeping a secret which I imagine regular readers of this blog will know is not at all like me. In late 2019 and on 1 January 2020 I tried to take my life. On both occasions I was extremely unwell with mental health issues including psychosis and depression. I felt trapped and desperate and like I was the only person in the world. I had a good job, a huge following and many, many accomplishments and awards but all this was irrelevant. Did I reach out for help? Not until it was already too late. I have not publicly discussed this since it happened and only a select few friends – and a bunch of health workers – were aware of what happened up until today.

Why am I talking about this? Well partly it is because I hate keeping personal things secret. I am open about my challenges and I feel I should be open about this too. But the main reason I am sharing this post is for all the people who are struggling with thoughts of suicide themselves. I want to say you are not alone, even if that is how it feels.

Suicide is a taboo in our society. We don’t talk about it and if you do raise the issue many people get quite upset. People often think if you talk about suicide it gives people ideas they otherwise would not have had and encourage them to act on those thoughts. However according to a lot of the literature this isn’t the case. Actually, talking about thoughts of suicide can help someone avoid acting on the thoughts.

It can be really hard to ask for help. I have asked for help in some instances and not others and can confirm that – for me at least – asking for help was a good thing to do. There are a lot of resources for mental health and suicide such as Lifeline (in the USA and Australia) The Samaritans in the UK and services like Q-Life and Minus 18 for LGBTQIA+ people experiencing mental health issues and suicidal thoughts.

I belong to some groups which face significantly higher rates of suicide than the general population.  I am autistic, transgender and have a mental illness. Suicide is often a major issue for people who belong to each of those groups. I remember doing a risk survey when I was in hospital  once and I ticked almost every box! Being in so many risk categories is a bit daunting but I guess I could also view it as a call to action and a reason to support others facing similar issues rather than a reason to be afraid.

One of the best things I can do when I have suicidal thoughts is connect with people and also to challenge the thoughts with some positive ones. Both of those things sound easy and straightforward but when you are in the depths of misery then they are very hard to achieve. I find sometimes it is easier to distract myself and shift my thinking than others. I would like to say I have improved at this over the years but that isn’t really the case. My level of insight around mental health has improved but when I am in the depths of despair that insight doesn’t always make a difference. 

I can have thoughts of suicide which are brutal, persuasive and insistent or thoughts which are fleeting. One thing mental health workers always ask is whether I have a plan of how to end my life. This sounds like a simple question but it isn’t. Sometimes I have fleeting thoughts which turn into a plan and then back into fleeting thoughts. Sometimes I have a clear plan and intent and in those instances it is likely I won’t tell the mental health worker because, well I actually intend to go through with it and telling them would make that harder. And sometimes I have no idea of whether it is a plan or not. I think those sorts of questions about intent and plans are particularly hard for autistic folks to answer.

Some people think suicide – and even having thoughts of suicide – is shameful. This discourages people from talking about it which is a problem. We need to do away with the idea that suicide is something to keep secret and not ‘bother’ anyone with. It is so much harder to seek help if you feel ashamed! When I attempted suicide in 2019 I didn’t tell any of my friends or family and then realised I was in hospital and Mr Kitty needed feeding. Out of necessity I told two friends. I described what I had done as ‘shameful’ and was amazed that the two friends were not judgemental or angry with me. I felt like I deserved anger and blame. Now if I think it is shameful – you know, Yennski the out loud and proud non-binary, autistic and schizophrenic person who abhors prejudice, ableism and judgement – if that person feels ashamed and worried about telling anyone, well I think that indicates that there is a significant problem in this space!

When I reflect on what happened last year I am glad I didn’t die. I now know what happened was not shameful behavior or me not being strong enough or somehow failing at the game of life. What actually happened was that I was really unwell and could see no way forward and felt that suicide was the ultimate mental health strategy and would solve every issue I had. I am glad to still be here. I do good things and my life is affirming and accomplished. Yes, I am glad to be here and I hope next time things get to the dark place I can ask for help rather than act on the negative thoughts because I deserve life as do we all.

Support services

Australia

Lifeline 

https://www.lifeline.org.au/

13 11 14

Q-Life (for LGBTQIA+ people)

https://qlife.org.au/

USA

National Suicide Prevention Lifeline

1800 273 8255

UK

The Samaritans

https://www.samaritans.org/

Emotional labour

Something I experience as an autistic advocate – and human – is emotional labour.  I only recently heard the term ‘emotional labour’ used in context. The person who mentioned it was author and activist Carly Findlay. I think it is a very important concept particularly for advocates but actually for everyone.

Amy Gaeta defines emotional labour as:

Generally defined, emotional labor is managing another person’s emotions and social expectations. It’s about keeping someone else’s emotional experiences and wellness in check, which typically results in the  labourer’s own emotional experience being disregarded and thwarted by this lack of respect and consideration. There is no salary involved or compensation and acknowledgment, and more often than not emotional labor occurs between friends, family, colleagues, or partners. Even as emotional labor may seem like just “being a good listener,” it is work.  Emotional labor is gendered, considered ‘women’s work’ and part of an ongoing history of care-taking labor where certain groups of people (e.g., women, femmes) are expected to give their energy, time, and emotional capacity to serve others. 

Disability advocates an activists often give a lot of emotional labour. It relates to intersectionality with privileged folks often having no idea that they are demanding emotional labour from someone. As a disability activist I find myself giving a lot of emotional labour, It is hard to push back against ti as well with those expectations and demands coming at me all the time,

An example of giving extreme amounts of emotional labour which was quite traumatising was the I was asked to work on a screenplay of my autobiography. I received the invitation via email in 2017 and was very excited. Imagine that, a Yennski movie! I had numerous meetings online with the screenwriter. I was asked to share a lot about my troubled personal history. It was very triggering and stressful but the screenwriter didn’t seem to be aware of that. I started to dread the meetings with the screenwriter and found the whole thing extremely draining but I felt obligated to keep meeting with him. As time went on it seemed less and less likely that the film would ever be made. I was giving significant areas of emotional labour for no reason. Early this year I pulled the plug. I was extremely relieved to not be working on the project any more. 

I think with the example a lot of the issue was a lack of empathy by the screenwriter. For me talking about my time in jail and being asked probing and triggering questions was not OK but the screenwriter could not empathise with me – he just wanted to get the film written. I am glad to have pulled out. I felt physically lighter and less overwhelmed after saying no to the screenplay.

It is interesting though because I often joke that I have made a career of oversharing and talking about trauma. Is this emotional labour? I think maybe it is but it is different to the screenplay example because it is my choice. I have control over what I say and how much I say. It is far less stressful than someone asking me probing questions about my life. I did talk about triggering and difficult things but I am in charge fo what and how much I say.

Another emotional labour consideration is educating people. Advocates and activists are often expected to educate their audience. There is an emotional labour component in this. A lot of us don’t enjoy this. I think once again it is a control thing. If we choose to educate others that is more OK than if others are demanding education from us. I often choose to educate people and I think that is fine but when people refuse to educate themselves but want me to do it for them then that is more problematic.

Emotional labour can be absolutely exhausting and can lead to – or contribute to – burnout. People need to be aware of this and avoid making people perform emotional labour. If you would find something traumatic or overwhelming then maybe don’t expect someone else to do it.  Emotional labour is hard and stressful. Emotional labour is a risk and it is important for us to be able to push back if someone is demanding it of us. It can be tricky to be aware of when we are being asked to perform emotional labour, especially for autistic people. If something feels overwhelming and brings up trauma or we are doing all the emotional giving in a relationship it may well be emotional labour. It is OK to decline activities which result in emotional labour.  

Issues around diagnosis

One thing which comes up a lot in the neurodiversity world is diagnosis. There are many issues around diagnosis and I will try to unpack some of them here. Have an appropriate diagnosis is a really useful and necessary thing for neurodivergent people.

The first is accessing an accurate and appropriate diagnosis for autistic people. There are a lot of stereotypes around autism which can impact on diagnosis, especially when clinicians think the stereotypes are correct. Things like someone being social or making eye contact can mean they miss out on a diagnosis. There has been a lot written about his issue with autistic women and girls but it happens to all genders. Clinicians making assumptions and basing their assessment on stereotypes about autism can mean people miss out on an appropriate diagnosis. You also get the issue of parents being wrongly accused of having munchausens by proxy if they take their autistic and atypically presenting child to a lot of doctors seeking a diagnosis. Once they have a munchausens by proxy diagnosis, even if it is only suggested, it can make their life and their child’s life really difficult. Another response to having an atypical autistic child missing out on a diagnosis is that parents simply give up. Most people going through an autism assessment for themselves or their child do not have a deep knowledge of autism – why would they, it’s probably a new thing to them. This means they or their child will miss out on a diagnosis.

Something else which comes up a lot is self diagnosis around autism. This can be a contentious area. I recently commented on self diagnosis online and it generated a lot of discussion. A lot of adults self diagnose because they cannot obtain a formal diagnosis. There are many reasons for this. These include the cost fo an autism assessment, geography (ie they physically cannot access an assessment in their location), issues with clinicians not thinking a person is autistic, even if they are (such as for those with atypical presentation) and some people have trauma form accessing health professionals in the past which precludes them from going through an assessment. I tend to think self diagnosis is valid for these reasons but not everyone in the autism world shares that vieew. Diagnosis is political and intersectional too with some diversity groups struggling to access a diagnosis more than others.

One issue for autistic people is misdiagnosis, usually with a mental health condition that the person doesn’t actually have. I think the most common misdiagnosis for autistic people is borderline personality disorder. There is a reason for this, other than clinicians just being ignorant! Borderline personality disorder often involves self-injurious behaviour, emotion dysregulation and identity issues. Many autistic people also engage in self injurious behaviour. Autistic people also often have alexithymia (or emotion blindness) which can look like emotional dysregulation as we seem to go from zero to one hundred emotions-wise. And autistic people often have challenges with identity which look like the sorts of issues people with borderline have. You can probably understand why clinicians get this one wrong so often! The problem with a misdiagnosis is that diagnosis drives what treatment someone gets. If you have the wrong diagnosis you will get the wrong treatment.   Diagnosis can also form a big part of our identity and sense of who we are so getting it wrong doesn’t really help anyone!

Another issue with diagnosis is that a diagnosis is a medical thing, based in an approach of  pathology. Many neurodivergent people – including me –  do not see ourselves as broken or disordered. However to access services we need to satisfy criteria which are firmly based in medical and pathological models. This can be a difficult thing to rationalise. If you go to an appointment for disability support funding you need to satisfy the medical criteria around autism but when you are navigating the world you want to base your interactions on your strengths and autistic pride. 

And just because this is a Yennski blog I will briefly share my experience of diagnoses. I was diagnosed as autistic in 1994 and with schizophrenia in 1995. Both of these diagnosis were correct (to my knowledge). I was also diagnosed with borderline personality disorder in 1996. This was not correct and led to a lot of issues. I was in denial about my autism diagnosis for seven years and my schizophrenia one for 15 years! However, I am now very much out loud and proud with both my diagnoses and delights to have an accurate description of my neurology and mental health.

Advocacy – thoughts and tips

I have described myself as an autism advocate for several years now. More recently I have added to that description gender diversity advocate and mental health advocate. But what does this mean? 

Google defines an advocate as “a person who puts a case on someone else’s behalf.” That broadly describes what I do. My approach to advocacy is to try and change the discourse around autism, mental health and gender diversity in society.  I don’t really advocate directly for individuals but more put content into the world to try and change people’s thinking and build understanding and inclusion. There are literally thousands of autism advocates and they all do their advocacy a little differently. 

I learned my advocacy in the home of the late and great Polly Samuel. Prior to meeting Polly I had been quite negative about my autism. Polly taught me autistic pride and identity and encouraged me to do some advocacy of my own by writing a book about my life story. I would spend hours at Polly’s house, making art with her and writing and just talking about our experiences of with the world. Polly was what I would describe as a very hands-on and engaged mentor. She helped me edit the manuscript of what would become my first book, Finding a Different Kind of Normal. As an advocate of some experience now I realise what a huge gift Polly gave me with her support for my book – both practical and emotional.

Years later I see parallels between Polly’s approach to advocacy and my own. However, even when my first book came out I was not a passionate advocate in the way I am today. Some years after the publication on my book I had an encounter which spurred me on the greater things in the advocacy space. Prior to this encounter I had done a few conferences and written a chapter for a book but my passion was then more related to my day job as an officer of the Commonwealth. The encounter which thrust me into a huge level of engagement for advocacy was when I met a young autistic man who had been given negative messaging his whole life. When I told him I worked for the public service, had written a book and was autistic he bluntly told me I was lying because it wasn’t possible for an autistic person to have a professional job. I was horrified that someone would be so limited by others’ negative attitudes about what they could do. Within a few weeks of this encounter I had started writing my second book, what became The Wonderful World of Work, which was a guidebook for autistic young people to help them join and succeed in the workforce. 

This was in 2012. Within a few short years I have become quite a well-known advocate. My approach to advocacy seems to involve putting a lot of content in the world and hoping it reaches people. I do a weekly blog, I have nine, soon to be eleven, published books and chapters in a further ten, I give presentations all over the world and they range from major conferences to scout groups, I have a big reach on social media and publish a new meme every day. My approach to advocacy is but one of a myriad of different ways people do it.

Some helpful thoughts around advocacy include:

  • Advocacy can be incredibly rewarding and enjoyable. It can also be very challenging 
  • Look at what other advocates are doing. Read blogs, look at videos, attend events. You can learn a lot from other advocates 
  • You don’t need qualifications or specific study to be an autism advocate. If you are an autistic person you have expertise in autism
  • Find an approach to advocacy that works for you 
  • Build a network of other advocates so you can support each other and give opportunities you cannot or prefer not to do to someone else
  • Remind yourself that it is not a competition. There are almost limitless opportunities to speak about autism or any other topic so missing out on one is not the end of the world 
  • Be patient.  “It won’t happen overnight but it will happen”
  • Challenge self doubt and impostor syndrome. If you have a friend, partner or family member they can be your objectivity and help you challenge self doubt
  • Know that you can change your approach.
  • Be aware that you are likely to upset some people. I have a number of people I have upset over the years. I am a bit of a people pleaser so struggle with this but it is how it works with humans. It is perfectly OK to block people. You need to protect yourself, especially online 
  • Burnout can be a big issue for autistic advocates. Pace yourself and take downtime when you need to. My lovely friend and coauthor Dr Emma Goodall once gave me a little buzzer that says ‘NO!’ In a range of different ways. I absolutely love this and use it frequently. While it is a bit of fun, it also helps me to remind myself to say no to things if I need to
  • Remind yourself that you are doing good things and changing the world for the better.