“You don’t speak for my child.” Actually no, I don’t

One thing which autistic advocates often experience is certain parents of autistic kids saying to us that ‘You don’t speak for my child.’ There are a few meanings to this but the main one is the implication that an autistic advocate has something called ‘mild autism’ as opposed to the child’s ‘severe autism.’ Advocates – apparently – have no shared experience with ‘severely’ autistic children. As such everything we say about autism is wrong and based in some kind of privileged position of being ‘high functioning’. This is all sadly very wrong and does not help autistic people – kids, adults, advocates – any of us. 

I do need to include this caveat: I do not think that the allistic parents who tell me I don’t speak on behalf of their child are the enemy. I think we are all on a journey to knowledge and discovery and I would invite those parents to read my words and the words of other autistic people and see if parts of what we say resonate with them and help them along their own journey of autism knowledge.

I will start by saying that I actually don’t speak on behalf of anyone’s child. I don’t speak on behalf of anyone at all. I speak on behalf of Yenn Purkis in the hope that what I say will resonate with others and help them. I have no authority to speak on behalf of others and neither does anyone else. This also begs the question of who actually DOES speak on behalf of the autistic child? Presumably the allistic parent accusing me of doing this probably thinks that it is OK for them to speak on behalf of their child. To my mind the child being able to express their own wishes or learn to do so in whatever way that may entail is better than anyone speaking on their behalf.

I want to talk about functioning labels. These are things like ‘high functioning’, ‘low functioning’, ‘mild autism’ etc. Functioning labels are not part of the diagnostic literature for autism. They are an add-on and not a very helpful add-on at that. 

I attended a presentation by the wonderful autistic advocate and academic Jac Den Houting. Jac was speaking about functioning labels. They put up two slides. Each listed a set of attributes that autistic people commonly have. The first slide were things that would be captured in the idea of ‘low functioning’ and the second things which would be described as ‘high functioning’ attributes. Jac went on to say that both slides were descriptions of things which Jac themselves experienced. I thought this was a fantastic way to address the issue with functioning labels. One person could have a whole range of attributes which fluctuate and change over time. I know that I have some experiences of being non-speaking, being catatonic,  having major ‘meltdowns’ and yet I usually get the ‘high functioning’ label. Basically the functioning labels are unhelpful at best and are often damaging and traumatic. The functioning labels are essentially meaningless. 

Giving children functioning labels dooms them to either having no expectations that they will achieve much or of being denied access to assistance and support due to them being ‘too high functioning.’ Just because someone is doing well at school does not mean their mental health is going well or that they are coping. The ‘mild’ autism label needs to be confined to the dustbin of history as it means people miss out on supports and that they are expected to act like an allistic person. 

I saw a humorous meme once that talked about having spicy autism as opposed to mild autism. I really like that and my take on it is that I have spicy autism with a side order of curly fries! Seriously though, one of the issues with the functioning and ‘mild’ labels is that they suggest a deviation form a ‘norm’ of being. Autism is seen to increase in severity the further it deviates from the allistic ‘norm.’ That simply isn’t how autism works. We are not defined by how close to allistic we are. We are valid as we are, as our own beautiful Autistic selves. We are all different and we cannot be plotted on a map of how close or far from ‘normal’ we are.

Often the people telling me I don’t speak on behalf of their child have kids who do not use verbal speech. The ability to speak is bound up with significant stigma around autism. This baffles me because there are so many effective Augmented and Alternate Communication (AAC) devices which give autistic people – and others – the capacity for communication. Some people will not get an AAC device for their child because they are told it will stop the child from speaking. I would say that is really unhelpful and will almost certainly lead to a very frustrated child being denied the access to communication. Verbal speech is not the pinnacle of communication. Communication is about being understood and understanding, whatever that may look like. There are some great autistic advocates who use AAC. Now I wonder, do these advocates get told that ‘you don’t speak on behalf of my child.’

The only child I speak on behalf of… Little Yennski

‘I’m not trans enough’, ‘I’m not autistic enough’ – how I overcame this thinking to come to a place of acceptance 

A long time ago I had a manager who said to a colleague ‘Yenn shouldn’t say they are autistic, They are too mild’. The colleague passed this on to me and I felt dreadful. I also felt angry. How could this person with a very limited understanding of autism pass judgement on my experience of being autistic? In fact anger was the correct response in this situation because what the manager said was known as ‘micro-aggression’ and autistic people – among a large number of other groups – face micro-aggressions quite frequently and this is not OK. 

Despite my outrage at the comment I still felt that maybe they were right? Maybe I wasn’t very autistic, although how was such a thing calculated? How can a person tell how autistic another person is? Is there a scale for autism? Of course there isn’t! Being autistic is an individual thing and all autistic people experience their autism differently. The problem – well, one of the many problems – of saying someone ‘isn’t autistic enough’ is that it ignores a range of things that are going on. For example, many autistic people mask and camouflage in order to survive in a predominantly neurotypical world. Masking can make people seem somehow less autistic to others meaning that others don’t see what they are really experiencing. Someone might be having a very challenging time but will hide it to avoid judgement. Also autistic people have fluctuations in the degree of difficulty of navigating the world. For example, I am a highly-paid and sought after professional employee. I work in government administration and wear suits to work and things like that. People see me as incredibly ‘high functioning’ and not just as an autistic person but as a human being. I am a huge overachiever and outside of my day job I write books and give presentations. I am a TEDx speaker. I have a worldwide profile. You might think that I am ‘very mild’. However there are a few things at play here. I don’t mask any more and am 100% out loud and proud, at work as well as in the rest of my life. This means I can archive a lot as I don’t have to spend all my energy trying to seem like someone I am not. The other thing is that I can be extremely challenged in life but it’s just that most people don’t see it. I was in hospital once and I was so unwell and frazzled that the doctor was trying to find my support worker! And what happens behind closed doors at Yennski HQ looks very different to who I am at work or at conferences. 

And finally it is not up to others to pass judgement on how autistic we may or may not be. Our identity is our own and it is not up to anyone to question or challenge this. If I am autistic then I am autistic enough!

The other thing I want to look at is gender identity and ‘not being trans enough’. I cam out as non-binary and transgender in 2018. This was an absolute liberation and I was so proud to be gender divergent. I wrote widely on my experience and I actually have two books on autism and gender diversity which I wrote since coming out. I loved my trans identity so much I felt that I needed to share it with the world. However one thing which made me very stressed was worrying that I somehow ‘wasn’t trans enough.‘ This mostly centred around my gender expression. Gender expression relates to the outward expression of one’s gender identity. For example, society views someone wearing a dress as being female – well, in Australia that is, not necessarily everywhere else. My own gender expression has changed over the years. As a teen I had a shaved head and wore flannelette shirts and work boots. I was viewed as being ‘male.’ In recent years I have developed a specific Yennski stye which has some traditionally ‘masculine’ elements and some traditionally ‘feminine’ ones. I wear jewellery most days but many of my clothes come from the ‘men’s’ section. One of my key criteria for buying clothes is to avoid getting anything ‘too girly.’ 

However, while I am pretty certain that my gender is non-binary and my expression is – as one of my supporters said  – Yenn’s ‘sweet enby style’ (‘enby’ is a word for non-binary), I worried that people kept misgendering me as female. My biggest worry with this was to wonder if in fact I wasn’t ‘trans enough’. How could I address this? What if I had made a big mistake and in fact I was a cis gender woman who was confused? Maybe I wanted to be trans but I wasn’t really? Eventually I had an epiphany. (I love a good epiphany!!) I realised that I am absolutely 100% non-binary. When I came out I spent t least three months so happy that I wanted to dance down thew street. I realised one critical thing about identity: If I identify as transgender then I am transgender. I could wear a dress and high heels and makeup or a blue singlet and work boots. I would still be transgender. These things do not denote gender. I am trans enough simply because I am trans.

I think it is a lovely realisation to know that I am enough. I don’t need to satisfy anyone expectations of an autistic person or a transgender person. The key is identity. How we identify is who we are, and nobody has the right to criticise or question our identity.

I will stim if I want to – or why I don’t like ‘quiet hands’

I am an out loud and proud autistic person and I love my autistic identity but I have not always felt this way. In fact I spent many years being ashamed to be my beautiful autistic self. I saw my autistic attributes as being something to be embarrassed by and hid my autism beneath layers of masking and social camouflage. Stimming was one thing that I tried to squash down and rid myself of. I might still be thinking this way had I now met the amazing Polly Samuel, who sadly is no longer with us in this world but who was a major influence on me and my journey as an advocate. 

I met Polly at a course for autistic people which would qualify us to deliver presentations in schools. I now wonder why Polly was there given her accomplishments and experience in public speaking but I am very grateful she was there because she changed my life. When I met Polly I asked what she spent her time doing, not being aware that she was a nine times published author and world famous. Polly and I soon became friends and she also became my autism world mentor. Well my everything mentor I guess!

Polly’s approach to advocacy was quite similar to mine now – and I suspect this is not by accident! Polly would have me and other autistic people over to her home and we would be our true and authentic autistic selves. Polly told me about stimming. I hadn’t heard the expression but I knew what it was  Polly had a big jar of shiny, smooth, colourful rocks which we played with. We revelled in shiny things and sensory joy. Polly had colourful, stimmy jewellery and loads of sensory stimmy things in her home. Polly taught me that flapping and clapping was a great thing to do. I learned to embrace my stims and finally understood that autistic people have the right to flap when we want to flap!

Stimming can be such a helpful thing for autistic people. It can help relieve stress and anxiety, it can help us focus and it can be a great way of expressing happiness and excitement, Stims can be a huge range of things, from playing with a fidget to flapping hands. I have different stims for different circumstances. If I am happy I do a little clap in front of my face. If I am anxious I flap my hands and if I am trying to focus on a meeting or conference I play with a fidget toy – of which I have a large number. I have my favourites in a big bowl of fidget toys that is in my home office. Stimming comes naturally to me and I do it without self consciousness although when I was younger and wanted to fit in with neurotypical folks I used to forcefully hide my stimming. I wish no autistic person ever felt that they need to hide their stims. 

What makes me sad is that the kind of acceptance and belonging I had with Polly is for many people unattainable. Autistic people are told their stims are ‘weird’ and forced into suppressing their stims. There is a term ‘quiet hands’ which is used in educational settings and basically means autistic kids should stop their stims. This is not OK. Stimming is not hurting anyone. Instead of trying to force autistic kids to look less autistic because it is ‘weird’, maybe educators should be encourage autistic kids to express themselves in the ways they want and to normalise stimming. They could use the opportunity to promote respect and acceptance of difference rather than compounding disadvantage and ableism. I hate seeing autistic people being forced to be less of themselves because some people are so narrow-minded and judgmental about people being and appearing to be somehow ‘different’. I think we need to educate people about autistic realities and experiences rather than punishing and censuring people for doing something which makes them feel happy and relieves stress.

I attend a transgender meetup in Canberra. Many of the other attendees are neurodivergent too. The facilitator – who is not neurodivergent – always says at the start of the meeting that stimming is welcomed at the meetings. I love this and I would like to see a similar disclaimer at all settings where there are autistic and neurodivergent people.   

Neurotypical people often have their own version of stimming. They might play with their jewellery or play with their hair. I think these stims serve a similar purpose to autistic stims but they are more socially acceptable for some reason. I wish there was greater understanding about stimming. For autistic people it serves a lot of useful functions. And ‘therapies’ which try to stop autistic people stimming are not OK in my mind. If something benefits someone and is not hurting anyone then why would anyone want to stop people doing it? I think this is one of those areas where autistic people are viewed as being somehow in need of fixing. To this I say, I’m not broken, I don’t need a cure and I will stim when I want to! And I say Yay for stimming too because it is a good thing and everyone has the right to stim if they so desire 🙂

“Ooh I’ve never seen that before…” – the trouble with being medically atypical 

I have had a number of doctors over the years say this to me – ‘I’ve never seen that before’ or ‘that is unusual’. I am one of many Neurodivergent people to experience atypical medical issues. For me the main one is psychiatric illness. After 27 years of accessing services I finally have (most of) the psychiatrists and mental health workers  I encounter think I have schizophrenia and am autistic. This was not easy and it has resulted in me being terrified of accessing mental health services from new clinicians – such as when going to hospital – because in the past my diagnoses have been, well kind of fraught! My current psychiatrist, who is very lovely and respectful, knows that I am autistic and have schizophrenia but it took him a while and he now describes my schizophrenia as being ‘very atypical.’ I am currently looking to buy property and I am severely limited in my choice of homes because I don’t want to move away from the catchment of my current mental health treating team in case a new clinician misdiagnosis me and changes my medication. My main worry with this is that I will become psychotic, spend months in hospital and have to use up all my paid leave at work – and then my savings – shortly after taking on a mortgage!

The main problem I find with being atypical is that doctors can dismiss you or give you treatments and interventions which are not helpful and can at times be downright dangerous. An example in my experience is when a psychiatrist diagnosed me with ADHD and put me on the medications for ADHD – amphetamines. Now any person with schizophrenia will probably tell you that amphetamines and psychosis go hand in hand. This is exactly what happened to me. It was in October 2019 and I am still recovering from the massive episode of illness the ADHD meds caused. When talking to psychiatrists – even my current very nice one, I feel powerless and having an atypical presentation fills me with horror that if I see a new psychiatrist they will change my diagnosis and associated treatments and I will get really unwell with psychosis again.

More broadly, Neurodivergent people often have atypical health issues – Mental health and physical health. We often have autoimmune issues. Thyroid problems seem to be extremely common with autistic people, especially women / assigned female at birth people. Doctors often don’t quite know what to do with an atypical presentation of a health issue and this can result in them simply dismissing the person’s concerns. Some people will put up with physical pain or mental anguish simply because accessing healthcare when you are atypical is so difficult.

Some illnesses – including some that are common amongst Neurodivergent folks – are doubted as even existing by doctors. Things like Lyme disease, fibromyalgia and chronic fatigue. Neurodivergent people with these conditions can face immense amounts of invalidation and being dismissed by the medical profession. It is bad enough being atypical but then having an illness that some doctors doubt is ‘real’ can be extremely difficult. 

It is almost as if doctors don’t ever see anyone who is ‘atypical’ which baffles me because there are loads of us. Autistic people in particular seem prone to health care being unhelpful and invalidating. I think part of the problem is that we explain things differently to most people. Our communication is different and neurotypical doctors firstly don’t know much about atypical illnesses but also don’t understand where we are coming from and what we are communicating what is happening for us.

I find it can help to take a neurotypical ally to appointments and also to write down all the symptoms and experiences you are having related to the health issue and show the list to the doctor. I have even been able to do this while I was psychotic (although I am also atypical in the level of insight and self-awareness I have when unwell with psychosis!) The hospital doctor said he found this really helpful.  

In Canberra we have a psychiatrist who is Neurodivergent. He is so popular with Neurodivergent folks that his books are currently closed but he is absolutely wonderful. I think having more neurodivergent doctors is a really good thing as they are more likely to understand the ‘atypical’ and to communicate more effectively with their Neurodivergent patients. I also think all clinicians needs support to understand both atypical conditions but also their Neurodivergent patients and the ways in which we communicate. It is so frustrating trying to be heard by a doctor who simply doesn’t ‘get it.’ A lot of people avoid accessing health care at all because of this. That is not OK at all. 

I want a world where doctors ‘get’ atypical illnesses and presentations, one where seeing a doctor does not make Neurodivergent filks feel dismissed, disempowered and invalidated and leaving their appointments with no answers and inappropriate or non-existent treatment. I want a world where I am not afraid to go to hospital when I am unwell because of the impact it might have on my treatment and diagnosis. 

On being Asexual

I am asexual. This means that I do not enjoy or have any interest in sex. There are different identities within the asexual ‘umbrella’. Some asexual people have a little interest in sex and others – like me – find it revolting. 

Apparently there is research to show that asexual people are the least likely of any of the LGBTQIA+ identities to be ‘out’. The stigma around asexuality is significant. Asexual people, or ‘Aces’ are often seen as being sad and pathetic. The film ‘The Forty Year old Virgin’ sums up this perspective. Not having sex is seen as a bit sad and that a person is somehow missing out. 

It took me a long time to accept and embrace my asexuality. For many years I believed I must be a lesbian. I had a sexual encounter with a man when I was 16 which wasn’t entirely consensual. I thought men were icky and women were well, slightly less icky so I figured I must be a lesbian. However as a lesbian I still found sex revolting. I had relationships because I thought that was what you were supposed to do but I didn’t enjoy any of it. 

It took me until I was in my late thirties before I realised I was asexual. Even then it took me a bit longer to embrace the identity.

As an autistic person, being asexual is a bit fraught, The stereotype around sexuality and autism is that we are all asexual and if we are sexual then we are are hreteosexual. This of course is nonsense. Autistic people are often interested in sex and are often gay, lesbian, pansexual, polyamorous or and number of other sexualities. I don’t like fitting a stereotype but I can’t help it! I suppose I am not responsible for the stereotype but it still bothers me. This view is also prevalent in the broader disability community and particularly in the intellectual disability space. 

Another issue around asexuality is people thinking I must be a prude. I am actually a long way from being a prude. In fact I am very sex positive. I think if people are enjoy sex and they are consenting adults then by ask means let them go for it! Sexual activity between consenting adults is just – or so I am told – and they should do it to their hearts’ content! I am far from prudish. 

I am also aromantic (or ‘aro’) – and as an aside, my spell checker diesels think aromantic is a word – we evidently have a way to go! I do not have any interest in having relationship. When I was younger I thought I had to have a relationship. That was what people did so I thought I should do it too but it turns out relationships are not for me. I have not had a relationship since 2003 and that is actually just fine. In fact it is much easier. I am not lonely or sad. I like my own company and it means I can do a load of interesting things which make the world a better place (well, I hope they do!) I do have what I would call aesthetic attraction to people. This is not sexual attraction and I don’t want a relationship with them. It is when I like to look at someone. My aesthetic attraction is to androgynous-looking folks and women police officers (long story…) The lovely thing about not being interested in sex or dating is that I don’t need to be in a relationship in order to be happy and fulfilled. I am absolutely OK for it to be just me at Yennski HQ with my work and my friends. I have no issues around being single. Single is absolutely fine.

One thing that I want to clarify is the difference between asexuality and incels. Incel means involuntarily celibate. This is men who cannot find a partner and are often ideologically anti-women. This is very different to asexuals / Aces. Aces are usually comfortable with not having sexual partners whereas incels are not. I view the attitude of incels as being epitomised by the concept of ‘I need to get a girlfriend’, as if a partner is a possession. I have had incels on my social media in the past and I find their approach to women very problematic. Incels are very different to Aces. 

My own Ace identity properly started a few years ago. I had known I was asexual for some time but hadn’t really identified with it publicly. I thought it was almost a negative thing, a negation. How could I have an identity based on something I didn’t do? Eventually I came around to seeing my Ace identity as part of what made me who I am and as being just as important as my other identities. I became a very out loud and proud Ace.  I now talk about my asexuality quite a lot. I think it is good to share not with the world so that other Ace people can feel proud to be themselves.  

About my autism – my road to pride

I was diagnosed as autistic in 1994. I was twenty. However. I realised I was different to others from a much earlier age. It has taken me a long time to understand who I am and accept and respect myself. We live in a world where difference is often not understood or respected. This is especially true for the kinds of differences that autistic and other neurodivergent people experience.

I think the moment that stuck in my mind of realising my ‘difference’ from others was when I went to a birthday party for a school friend. She was turning 12 and I was 11. I wore a green check skirt and lemon yellow button up shirt to the party. I was so uncomfortable to be in a room of strangers. I didn’t know how to break into a conversation and the only person I knew was my friend. One of the others asked if I was wearing my school uniform. I was so embarrassed and I longed to be able to be like other people and not be socially anxious and to wear fashion that was similar to what my peers were wearing. That was the first time it hit home that I was not the usual sort of human. I firmly believed I was the only person like me in the world. It was horrible. 

I spent the next twenty or so years desperate to fit in and be like other people. I firmly believed that I was inferior to the rest of the people in the world and that I needed to change in order to be more like them. I think this was largely due to the bullying I experienced throughout school.

Bullies at school relentlessly pursued me. I was hated in every school I attended. I was ‘weird’ and a ‘nerd’. My apparently ambiguous gender was another reason for bullying. The messaging was consistent so I figured the bullies must be correct. This led to post traumatic stress and a strong wish to conform to what young teenagers were apparently supposed to conform to. I kept everything emotional firmly suppressed. I never had a meltdown from the age of about 10. While a meltdown may be viewed as a negative thing, not having one when you need that release valve – such as when you are terrified to go to school every day due to being abused and harassed pretty much constantly…well in that situation an occasional meltdown might in fact be helpful! Suppressing emotions is not generally a good idea and I did it for many years.

Even though I was diagnosed as autistic at the age of 20, I never saw it as a good thing. Quite the opposite in fact – I struggled to accept my autism mostly because I thought it validated what the bullies had told me. I thought autism was a diagnosis of ‘weird’ or ‘nerd’ so I kept as far away from it as possible. I was ashamed to be autistic and thought it was a dreadful thing that somehow needed ‘fixing.’

My feeling was always that my autism, my ‘difference,’ was a negative thing. Even when I accepted the diagnosis it was very tentative and reluctant. I didn’t really WANT to be autistic. I did some research and signed up with an autism employment service but I didn’t want to be in that group and saw the diagnosis as disabling and something to be ashamed of. Rather than being proud as an autistic person I was apologetic to be so ‘weird’. 

It wasn’t until my early thirties that I learned the value of being an out loud and proud autistic person. I met other autistic people, including my mentor, the late, great Polly Samuel. Polly taught me all about autistic identity and pride and I never looked back. I learned that different is not less and now I share that message around the world. Polly would have meetings at her house where autistic people would visit. Sometimes we watched movies and sometimes we talked abut writing and books. Polly was – at that time – a nine times published author. She was also an accomplished artist and we would talk about all things autism and identity, stim to our hearts’ content and paint together. I became Polly’s protege. She encouraged me to write my life story which initially I wasn’t keen to do but in the end Polly convinced me. I wrote the book with Polly’s support. When it was drafted and edited (a process which took a total of six weeks) we sent it to Polly’s publisher. They took three weeks to decide to publish it and my advocacy career – and the life I have now – was born.  The book thrust me into the autism advocacy world. Suddenly I was someone people came to for advice on autism. It was amazing – and utterly terrifying! Over the years I have learned a lot more about autism and neurodiversity more broadly. 

And yes, I do experience the world a bit differently to others. My social communication is very direct. I tell it like it is and that is OK. I love to stim and often find myself clapping my hands or flapping when I am either anxious or excited. I have immense focus and can work for long periods without a break – or even realising that a break is a possibility. I am a huge fan of words and writing. I have prodigious skills in art, public speaking, writing and strangely enough, cooking! I am thoughtful and kind and I have respect for people from diverse backgrounds. I have that amazing – and quite difficult – autistic quality of hyper-empathy. I have some sensory challenges such as toilet smells, some foods and bright lights. I also have some sensory joys – glitter, foil and shiny things generally. I have a very idiosyncratic – and extremely cool, even if I say so myself – sense of style. Like many autistic people I am gender divergent – in my case non-binary / agender and like many autistic people I have a divergent sexuality too. As an autistic person I am strongly connected to animals and nature and I am also very logical. 

I would not get rid of my autism even if I could. It is what makes me different and what makes me wonderful. It has taken me many years to get to such a strong place of respect for my difference and embracing my autism. It is true that for some of us being ‘different’ can be traumatic. Sadly a lot of autistic people are bullied and abused by people who do not respect or understand difference. This is not ever OK. Difference and diversity are beautiful and should be encouraged and supported. 

Yes, I firmly endorse the statement ‘different not less’.

Tackling jealousy and lateral violence – or why we need to support each other 

I am ashamed to say that I used to really struggle with jealousy, worrying what other people thought of me and thinking I was never going to be as good as others in the autistic community. I found the success of others quite intimidating. It wasn’t that I didn’t like other, more ‘successful’ advocates or that I wanted to be somehow better than them. It was more about doubting my own value. Thankfully I have moved on from there and genuinely want others to succeed and create an audience for themselves but it was a long journey. What finally put those unpleasant thoughts to rest was actually my coming out as non-binary gender. I finally got to be the person I had always been deep down. I was my own true identity. The jealousy and self doubt just seemed to evaporate when I came out. It was wonderful.

These days I recognise that I myself am highly accomplished. I know that many people actually find me intimidating! Who knew? While I am thankfully free form jealousy I do have a pretty impressive case of imposter syndrome. I always think that I know nothing about anything before realising that I have ten published books which people tell me are quite helpful. Presumably I know something to have written a bunch of books but it still seems unlikely. It is just one of those things where I have to take others’ word for it I guess. 

A lot of these issues are bound up with intersectional disadvantage. One thing which can be a big issue for people from intersectional groups is lateral violence. How I understand lateral violence is this: Someone is oppressed by society. They may for example by Autistic. Autistic and neurodivergent people face discrimination in society. The more logical thing to do if you face disadvantage would seem to be to fight the power – address the structural barriers in society, that kind of thing. However with lateral violence, instead of fighting the power, the person fights other disadvantaged people. This happens in pretty much every intersectional group and is really not OK and not helpful. Attacking each other will not remove or address discrimination and barriers, it just upsets people.

I have been on the receiving end of lateral violence a few times and it is very hurtful. It can be tied up with jealously and feelings of being inadequate but it is not OK. It is also very hurtful when directed at me. It is understandable though. Being discriminated against and disadvantaged makes people powerless. Powerless people often want to reclaim personal power in any way they can, even if that means being horrible to people in a similar situation to themselves. When I felt jealous of others I knew it was wrong and unhelpful so I tried as hard as I could not to let it show and to support other advocates Not everyone approaches it like that though. I am lucky too have been blessed with a large amount of insight and self-awareness. Within the context of jealousy and lateral violence this meant I could (mostly) suppress the problem thinking but many people lack self awareness so just act really mean without understanding that it isn’t OK. 

I know that we achieve much more united than divided.  Also the cause of the powerlessness and disadvantage we face does not come from other people facing similar disadvantage. This means it is completely ineffectual to attack our fellows. We are much better off fighting the power so to speak and addressing injustice and discrimination than turning our anger inwards to our own community.

Also, speaking as a person who is now a bit of a ‘tall poppy’, I really struggle with a range of things. I have a major mental illness which makes living almost impossible a lot of the time. I have a history of violence, abuse and trauma and I often struggle to think of anything positive about me. Yes I wrote a bunch of books and gave a TED talk but I am fairly certain very few people would actually like to have my life. In the past had I met a person with all my current accomplishments  I would have been very jealous but I now know that for many people with accomplishments there is also trauma and sadness. Those people need support and encouragement, not hostility and jealousy. 

I think lateral violence is not at all helpful. I do understand it from both ‘ends’ but I firmly believe we are better off fighting the barriers and discrimination we all face together rather than attacking one another. 

Thoughts on faith – faith in the world, what I inherited and what my schizophrenia gives me 

Upbringing

I was brought up in the Christadelphian church – or ‘ecclesia’ as they call it (an ancient Greek word for, um, church!). Christadelphians have some fairly specific views on the world. They like prophecy, don’t vote or join the army and believe that Jesus is going to come back to Earth and set up a benevolent world government in Israel. Prophecy is a big deal for Christadelphians. We were always reading the book of Revelation and Daniel and firmly believing that the world was about to end. It was at once scary and exhilarating! We apparently had ‘the Truth’ (note the upper case T – no room for postmodernism in the Christadelphian universe!)

Trying to be an atheist

When I was about eleven years old I came to a realisation. To be a good christadelphian woman I figured I would need to get married to a man, have a bunch of kids and have no opinions. I really didn’t want that to be my path in life. I had recently heard about lesbians and figured that was more the path I wanted to take. For the first time in my life I had doubts – not about the existence of God but about my role in life. A few years later I had a passionate interest in politics and particularly communism. At the same time there was a split in our Christadelphian ‘meeting.’ I had always known I was correct in my faith and the elders if the ecclesia had the correct interpretation of the Bible. But now they were arguing. I don’t deal well with conflict and I was totally thrown by the split in our meeting. I could no longer trust anyone in the church so I left and joined the socialists. 

Socialists were atheists (mostly) so I needed to be an atheist too. I actually struggled with this. I had always been friends with God. I would pray every night and saw God as a very influential friend but I managed to convince myself that I was an atheist for some years.  

Trying to be a christian

Life went on and I found myself no longer being a socialist. By 2007 I was Masters graduate and published author. I had experienced things which suggested that there was a supreme being who wanted me to succeed in life and who cared for me. I moved to Canberra to take up a new – and very well-paid – job . I asked my mum if she knew of any non-judgemental churches in Canberra and she put me in touch with a home church group. I was going to try to be a Christian. Sadly I was a very deficient Christian. I missed all the meaning and metaphor that my fellow Christians could see in the Bible. I didn’t think it was possible to have any kind of absolute ‘truth’ and I thought missionary work was just another word for imperialism and disrespecting the cultures and beliefs of people in other countries. I tried as hard as I could to be a Christian but I was mournfully dreadful at it so gave up!   

What psychosis gives me in terms of religion

My Christadelphian upbringing has left me with one very difficult thing. I have schizophrenia and a lot of my delusional beliefs when I am unwell relate to religion. I become terrified that God is punishing me, that I have sold my soul to the Devil, that I have died and am in purgatory or that spirits of the dead are haunting me. These are firm beliefs when I am unwell and they are terrifying. In fact none of those beliefs are things that Christadelphian beliefs but it all sort of ties in.

Religion and the world

I just want to unpack some thoughts I have heard about religion:

  • Does religion cause war? Yes but no. I think religion is often used as an excuse for war but it is not the cause in and of itself. I think causes for war tend to be a bit more complex than ‘they are Christian and we are Muslim’ (or whatever).
  • Are all Christians bigots? No. I haven’t said much about gender diversity, sexuality and religion here and it is an important topic. A lot of bigots are Christians but it is not the case that  Christianity necessarily causes bigotry. My parents are very devout Christians but they are not at all transphobic or homophobic. While in Australia at least, many bigots are Christians it does not translate that all Christians are bigots.
  • Why are so many terrorists religious? As with the war point, terrorists are often religious but there are probably deeper reasons to terrorism than religion alone. For example in Northern Ireland the terrorism and the ‘troubles’ seemed very closely related to religion and there was certainly a strong element of religion driving the violence but there was also a lot of history of colonialism and the UK being an occupying force.  There is a lot of terrorism happening right now which has no religious element but we simply don’t see it in our news. Religion causes war or religion causes terrorism are simplistic views to my mind. 
  • How do people with faith know they are are right? This one always gets me. My mum – who I should say is one of the most kind and loving and respectful people in the world – has a very strong and specific faith. I cannot do this. I always have doubts. I can’t say ‘my beliefs are right’ because I honestly don’t know that they are. This is something about religion which confuses me. However this kind of faith can be comforting to people that have it.

What I think and why it is probably wrong

I do have a faith, just a fairly sketchy one. If my life is challenging, such as when I am unwell with psychosis or depression, I pray and turn to the Devine to deliver me. And those prayers are actually often responded so and the issues resolved. I don’t have a specific faith. I can’t tell if Islam, Christianity, Judaism, Buddhism or anything else is  correct. I have a long history of trying unsuccessfully to be a person of a specific faith. Simply It doesn’t work for me. But I do have faith and belief. I tend to think we go somewhere when we die and they there is a benevolent force in the world – and probably malevolent one too. I do think my path in life has been supported but I can’t pinpoint what or who did that. I tend to think that we are trying to find answers and we cannot have a ‘Truth’.  And I know my views are almost certainly ‘wrong’ but that is OK as they work for me.

Nothing about us without us – Autistic involvement in research 

I have research on the brain at the moment! Mostly because I attended the Autism Cooperative Research Centre (‘Autism CRC’) participant day yesterday. It was one of a very small number of autism events I have attended in person since the outbreak of COVID in 2020. Of course my favourite thing was catching up with fellow advocates and friends I haven’t seen in over three years but it was also about the research! 

The CRC has been going for a number of years and I have had involvement  with them quite a bit over the years. Yesterday I earned a reprieve from presenting so watched everyone else’s presentations without the distraction of needing prepare one of my own. It was lovely. One thing about the day was the very strong involvement of autistic people. Each panel had autistic voices and some of the events had exclusively autistic presenters. You would think that this is how such events are always done but sadly that is not the case.

Research is important. If you want to initiate a service, write a policy affecting people or simply understand the experience of a particular demographic group then you will need research evidence and data. There are different ways of collecting data, some of which are inclusive and respectful and other which, well, aren’t! I am an author and I use a lot of research evidence in my books. Research enables us to realise what needs to be done and to evaluate whether interventions and supports are actually helping. 

Involvement in research happens at a range of levels. One of these is researchers themselves – the people conducting the study and collecting the evidence. Another way of being involved in research is as a participant providing the evidence and data based in your experience. And another way of being involved in research is as a sponsor – providing funding and auspicing the study. There are a great many roles in the business of research and traditionally the people who from the demographic being studied, and especially those from disadvantaged / intersectional groups – e.g. Autistic people – are excluded from most or even all of those roles. 

I often say that not including autistic people in things which impact on us is a bit like holding an engineering conference. The organisers invite an architect, a builder, someone who lives in a house, a mortgage broker, a bricklayer and a concreter but no engineers! Excluding the key player in anything – autism or engineering – is not very helpful. It actually means that the quality and helpfulness of the research is very much limited. I often think many researchers do not realise that the outcome of their research should primarily be one of supporting autistic people. Not including autistic voices in all levels of research is just nonsensical. It comes from some legacy-type attitudes around autism, ableist views that assume incompetence and think that the only important people in the autism ‘picture’ is neurotypical parents or clinicians rather than autistic people ourselves.

In recent years this has started to change but there are still organisations and individual researchers who do not demonstrate their inclusivity and do not wish to involve autistic people at any level of the research process.  The findings of autism research which does not include autistic people are not likely to be very helpful for autistic people. 

Sometimes researchers will recruit autistic people as participants in their study. This is a good first step but we also need autistic researchers and project leaders to ensure autistic voices are included. This should not be a tokenistic approach but genuine inclusion. We are going to get far more useful data and understanding where research is based in inclusivity and conducted by autistic researchers with autistic participants. This is a critical area and inclusion of autistic voices  is absolutely essential if we want our research findings to be helpful and also if we want to be respectful and inclusive of autistic people and create policies, services and information which actually helps us to navigate life better.  

Stranger in a strange land – The cultural theory of autism 

A while back I came up with an analogy for autism which I thought resonated well. The theory rested on the idea of autism being comparable to a cultural difference. It was like autistic people were from one culture and neurotypical folks were from another. I liked this idea and I use it a lot but I’m not sure if I have blogged about ti before, hence this post.

The idea has a few elements to it. The first is the concept of language. If you imagine that autistic people speak French and neurotypical people speak Spanish. The issue is not even that there are two seperate ‘languages’ –  although this is a challenge to communication in itself. The main problem that I see is that a lot of neurotypical people don’t realise that autistic people are speaking ‘French’. Instead they believe that autistic folks are speaking Spanish but very badly! Of course there is no problem with the autistic ‘French’. French is an equally valid language to Spanish but if people don’t realise you are speaking a different language it make communication very challenging! It also leads to assumptions around the competence of the person speaking the different language. We need to ensure that the neurotypical ‘Spanish’ speakers not only realise that autistic ‘French’ is a language but also to understand it is an equally valid language. It is awesome when neurotypical ‘Spanish’ speakers learn autistic ‘French’. I think I spend a lot of my time teaching people ‘French’!

The other concept around the autistic culture approach is  the concept of the Autistic expatriate. This involves autistic people feeling like we are in a different country to our native home. We have moved to a country which is strange to us. The neurotypical nation is not our home. We have learned the language and the customs but we are very much an expatriate, a foreigner. If someone from our autistic homeland comes to visit us it is a lovely thing. We speak the same language and know the customs of our homeland. This notion of being with our compatriots s something which is known as autistic space. When everyone in a place is autistic there tend to be no issues with social skills and communication. I often go to autism conferences and find that all the people in the quiet room are autistic and we get talking and it is amazing. I have been at events where everyone is autistic and it is really is like coming home to my own native land. Autistic space is my favourite thing ever! For neurotypical folks being aware that we are expatriates is a useful thing to be aware of. We may feel very uncomfortable in your ‘country’ and feel like we are not amongst our own people. 

These concepts around autistic culture make me happy. They are a way of understanding differences and the experience of autistic people. They form part of the idea of Neurodiversity – that our brains are wired differently and that is OK. The concept of ‘different not less’ also relates. Cultures are all different but all valid. Nobody’s culture is ‘wrong’ and this includes autistic culture. I’m not sure what others think but I find this approach very helpful, especially when I am talking to people who don’t have much knowledge around autism.