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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

  

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

Today is my birthday, which is nice. I have had lots of celebrations and caught up with different friends to mark the occasion. However, I have been thinking about a different anniversary lately. My autism diagnosis turns 25 later this year. I was diagnosed in 1994, the same year the diagnosis was included as part of the DSM IV. The clinical psychologist who did the assessment wrote in her notes that I ‘satisfied all the DSM IV criteria for Asperger syndrome’. 

The same pronouncement tends to make people these days delight in ‘finding their tribe’ but for me the opposite was the case. I hated the diagnosis and did everything in my power to distance myself from it. Why? You would think that having been a misfit at school and being the victim of every bully in the place would have made me happy to find an answer for my ‘difference.’ Surely knowing I was autistic would be a good thing, a time of discovery and self-reflection? Not for me. There are a few reasons for this. The first was that it was just too raw, too real for me to take on board. The bullies’ main taunts were about me being a nerd, me having an intellectual disability and my ambiguous gender expression. The Aspergers diagnosis in my mind covered the nerd bit and the intellectual disability bit which meant that the diagnosis validated what the bullies had told me about myself. To me it was not a liberation but a clinical diagnosis of ‘nerd.’ I also thought it was my parents making excuses for my poor behaviour *(I was diagnosed in prison – long story. My autobiography will tell you all about it!) I definitely thought my parents were looking for an excuse for the bad things I did and poor choices I made. Autism seemed to let me off the hook and this made me angry. I didn’t want an excuse. The other thing was that I knew deep down I was autistic so when my parents showed me programs on TV about Aspergers it was really personal and I found it very confronting. I didn’t want to be autistic. I wanted to be like all the other humans.

Quite odd that someone who thought like that would become an autism advocate. It was a long journey to that place I inhabit now where I have a lot of autism knowledge and a lot of compassion and love for my Autistic community. My journey was in gradual steps. I came to accept my diagnosis seven years after I was given it. I had been unwell with mental health issues and was getting into a lot of self-reflection. My mind turned to that Asperger’s diagnosis and I started to entertain the ida it was correct. However, I didn’t straight away embrace my autistic tribe and rush off to start a blog or anything like that. I viewed my autism as almost a shameful secret for some years. I didn’t want people to know. I felt it was something quite negative. A lot of the literature was very deficits based and I believed it, even if it didn’t quite tally with my experience. If I told someone about my autism I would say it in hushed tones and half expect them to ditch me on the spot. While I was ashamed of having been in prison I was actually less ashamed of that than being autistic.

So what changed? When I was 30 I met autistic author and advocate Polly Samuel (also called Donna Williams). Polly and I got along really well from our first meeting and she soon became my mentor. Polly introduced me to a world where autistic people could be proud of who we are. I would spend time at her quirky home and do painting with her in her studio, play with her big jar of stimmy things or just talk about her writing and music and art. It was lovely and it was my first taste of autistic pride. Polly encouraged me to write my story which I did. Polly wrote a forward for my hastily-penned memoir and sent it to her publisher, Jessica Kingsley Publishers – now my own publisher. Within three weeks I had a publishing contact on the way and a new life ahead of me.

As the years went by I grew in my sense of autistic identity and pride. I finally ‘found my tribe’ at a conference in 2009 on autistic women and girls (and I suspect quite a few gender diverse people were there too). The second day was a facilitated workshop exclusively for autistic people in attendance. I finally came home to my own community and it was a beautiful thing. This was 15 years after my diagnosis.

In 2012 my advocacy kicked into overdrive when I met a young man so disabled by others’ negative messaging that he called me a liar when I said I was an autistic public servant who wrote books. That was seven years ago now. My passion for advocacy continues. It is my passionate interest and drives everything I do. I went from being in denial to being a self-hating autistic to being quite a visible advocate. 

I used to feel almost jealous of people who were diagnosed younger than me or who instantly accepted and embraced their Autistic community. I don’t worry so much now and am just happy for those who didn’t have to go through everything I did to reach their identity. I actually like that I have had the journey I have and this is why. Sometimes a person will get in touch with me and they will feel really bad about not embracing their autistic identity. Given my history I can sincerely say to them that we all walk a different path and there is no right or wrong. I am not embarrassed that I was so negative about my autism as that was a step I needed to take on the path to where I am now. Twenty five years is a long time. I treasure my identity and my autistic ‘tribe’. Another one of those things to appreciate all the more for how hard fought and won it is.  

Selfie taken the day I gave my TEDx talk. I like how vulnerable and uncertain I look

My name is Mr Kitty and I live with my human. Their name is Funny author person or Yenn.  They are the best thing – along with cat food of course. I remember before I met my human. Life was cold and wet. There was nowhere warm to sleep. I huddled up in corners and garages and dry places when I could. I didn’t have any home and no humans cuddled me. I had to kill my food. I didn’t know if I would eat or not. My life was cold and scary. Other cats and dogs chased me so I got angry when I saw them and hissed – hoping they might run away and leave me alone.

One day I was near some houses. There was a delicious smell of fish which I went to investigate. It was in a bowl in a wire box. I ate it and then I was trapped. I was so scared but after some time, when it got light a human came and brought me inside. She scratched me behind my ears and called me ‘sweetie’. It was nice. Another human came and took me to a new house. The new human looked at me and their face was kind. Then they picked me up and held me tight to their chest. The human scratched behind my ears and talked softly to me. I snuggled in and purred. At the moment we belonged to each other. They were my human and I was their Kitty.

My human goes out every day. They give me cat food and I watch as they walk out the door. They say ‘I’m going to work furry boy. Keep being your wonderful furry self’. Then my human comes home ages later with cuddles and cat food. I used to worry that they wouldn’t come back but they always do. Sometimes the human is tired when they come home. Sometimes my human is sad – so sad I can sense it. I always give them cuddles and purrs then and it makes them  happier.

My human is a Public Speaker Advocate Writer. They spend a long time on the computer making and practicing their talks. I sit at their feet while they work. They will bend down and pat me and I smooch their hand. I think them human needs my support to do what they are doing. They always have cuddles for Kitty.  They hold me like a baby and I purr and purr. So nice to be safe and warm and with cat food every day.

People come to my human’s and my house a lot. They always want to talk to me but I don’t aways talk to them. The other humans smell like cats and dogs and guinea pigs. I like the other humans but I don’t know them as well as my human. Sometimes I smooch them or stand on their laps and they are really happy, just because I said hello to them. I think I could try to talk more to the other humans but I don’t always trust them. I like climbing inside handbag and backpacks of the people. One of the people brings knitting and I always try and help.

I am my human’s kitty and they are my best ever human. You get one of us then you have the other one too. We are closer than anything. I know they won’t bring other pets into the house and they know I will always have cuddles and purrs for them. Sometimes the human gets annoyed when I ask for cat food by biting their feet and knocking their shiny phone off the desk. They say says ‘you’re a little bugger! Good thing I love you or I’d turn you into cat meatballs!’  But I know they would never do that. It is like a game we have.

My human goes away a lot. Their friends come over with their white car and I have to go into the carrier and then in the car and we go to the cat boarding place together. I used to be scared at the cat boarding place but I like it now. The humans there love Kitty but I always make sure they know I am in charge. I is Kitty after all. When my human comes to collect me I get so excited. They pick me up and give me a big hug and I purr so much I drool. My human takes me home and given me food and more cuddles. It is magic. I don’t leave their side for days, even when they go to the bathroom.

I am always happy that my human wanted me to live with them. They say I am the most beautiful and unexpected gift. They tell me I am the best thing in their life. And I think the same. Kitty needs his human  but human needs their Kitty a lot. I have a big job looking after my human but I like doing it.

CW – Death and reference to abusive psychiatrist

I found out the other day that someone who was important in my life died in tragic circumstances. I didn’t really grieve although I felt sad for his family and friends but it didn’t mean much to me other than being the end of an era. The reason I was not sad for me was that this man was a very negative influence in my life. I had two big negative influences – the man who dragged me into the world of crime and the misery that involves and the man who died – a hospital psychiatrist whose idea of ‘care’ did not include my younger self. A person who released me to either homelessness or prison, who victimised me in an institutional manner. Someone who ignored my autism diagnosis presumably because he didn’t understand what it meant. This was a powerful man in his field with lots of responsibility and people respecting him for his position and authority. This was a man who had power over people – vulnerable people. I am indeed sad for his passing as I’m sure those who loved him saw a different side but for me it is more like knowing that man will never again have influence over my life.

I did have some lovely positive influencers in my life – my parents, the theatre directors from prison, certain friends and my first autistic mentor Donna who was also Polly. These people’s influence in my life enabled me to get to where I am now. They dealt with my self-defeating tendencies in the past to support my confidence and accomplishment.

Influence is a useful concept I think. I am sometimes called an influencer or a thought leader as if that were a rare thing but I think everyone has influence over others. When I give presentations I aim to speak to people who influence the lives of autistic people as those are the people that need the information. My main groups of influencers are parents of autistic kids, educators, employers and clinicians. These are groups that will benefit from greater knowledge of autism and autistic experience. My favourite group of influencers is parents because, at least when you talk about children and teens, parents are usually their biggest influence. The attitudes of parents are key to supporting autistic children and teens to live well and achieve their potential as far as I am concerned. The thing to know about parents is that they almost always want to do the right thing and help their kids so they tend to be quite attentive listeners to what I say. I am a long way off being the only autistic influencer so all of us working to change views and thinking is having a good effect. At this point in time, parents’ thinking is more often than not aligned with mine which is great and not just because it is easier for me but because it will be easier for their kids too.

I think a lot of people don’t realise that they are an influencer. We are not ‘supposed’ to think in those terms. People worry they might be seen as arrogant if they suggest they have influence but we all have influence somewhere. The fact of interacting with other people means we are influencing. When I think about my own role in all of this I am brought back to the psychiatrist who passed away. How do I want people to reflect about me being an influencer when I leave this world? Do I want my influence to help people or do I want power and the fearful respect of others? If you read this blog regularly I suspect you will know the answer. Power and influence  is counterproductive if it is not positive and helpful. As my advocacy career progresses I get more and more respect from people in positions of authority. Amazingly I am in similar situations to the psychiatrist who worked so hard to make my life unpleasant when I was younger but having been so powerless myself I know that everyone needs to be aware that those they influence can benefit or be harmed by that influence.

So I guess we all need to check our influence, to reflect on how we change the worlds of those around us be that of our kids, friends, family or colleagues and if we are helping or hindering them in their journey. And I hope when I die if anyone writes a blog about it they won’t have to use my life as a cautionary tale as I have done here with my former psychiatrist.  

I attended an exhibition yesterday which was called ‘Activism’. I was actually included in it as part of a photo installation caked ‘Redefining Leadership’ which featured six community leaders who are part of the Canberra Disabled community. The other exhibits were taken from a number of political campaigns in the ACT. The Aboriginal Tent Embassy was there and the protests against the arms industry expos in the late 1980s-early 1990s. There were lots of campaigns for gender equity and against war. A journalist was recording people’s stories and asked me to talk about autism advocacy. She remarked on how passionate I was and I guess I am passionate.

I know a bit about activism. In 1989, as the Berlin wall came down and people in former communist countries overthrow their Soviet oppressors, I decided to be a socialist. I was not the sort of socialist who looked to Russia. I was a Trotskyist. We figured that communism had never really happened and what was going on in Russia, China and Eastern  Europe was a sort of state sponsored capitalism with a focus on military expansion rather than selling commodities. We were pretty passionate about our views. I went to every protest you could think of. The funny thing was that I actually wasn’t a socialist – not deep down anyway. My membership of the International Socialists was based in a need for belonging and acceptance rather than any need to overthrow capitalism. I enjoyed protests because they were the only place I could articulate and express my emotions but the ideas of revolutionary socialism for me were just a means to connect with other human beings. Unlike at school where bullies hated me whatever I did and  could never ‘get it right’, the socialists accepted me if  agreed with their views. It was easy.

Because I wasn’t actually a socialist I didn’t stick around for too long and got involved in other ‘cultures’ as I got older. I thought activism was a bit silly and likely to lead to legal problems and antagonising others. I let it go for several years and didn’t really miss it.

In 2012 this changed. I met a young autistic man who was completely disabled by others’ low expectations of him. He had left school very young and never reengaged with education. When I told him I was an autistic public servant who had written (at that stage) one book, he told me I was lying. And in his world I understand that it wasn’t possible to be those things. I felt like this man had been done over by a world that assumed he would be unable to do much due to his autism. I realised there must be more than one person in this predicament and I decided I needed to do something to give autistic young people confidence and pride in themselves to counter this issue. Within a year I had written a new book aimed at autistic teens and given a TEDx talk. I became driven and engaged and wanted to make a difference.

I always called myself an advocate rather than an activist. Activism – as I saw it – was hard line and shouty and while a necessary thing, was not a thing which I did. As time want on I found that line between advocacy and activism in my work blurring. Some of the people I respect highly fit into that activist category. I have done things in recent years which are clearly activism. I am definitely not a socialist but I think there is a strong activism element to my work. 

We need advocates and we need activists. As I see it advocates influence decision makers and support change and activists highlight areas which need to change and put pressure on those in authority to make that change. These are both essential functions. I firmly believe that we need to continue with our efforts to change things for the better around autism. This stuff is not static. It is not the case that we can stand back and hope things improve. Everything is up for grabs in this space all the time. We need to continue to work to make change or those who want damaging things – the anti vaxers, proponents of ‘therapies’ that are harmful, ableists and eugenicists – will be empowered and things will get much worse for us.  

I was with a friend last night at the Activism show who is one of three generations of activists. Many of her activist ‘aunties’ were there. It was wonderful to see the exhibition through the lens of their perspectives. I wondered if that would be me in 30 years, reflecting on the difference I have made alongside my autistic advocate and activist colleagues. That would make me very happy.

I have been thinking about something  lately which I will unpack here.

There is a saying which is sometimes a bit patronising but sometimes sincere which is that autistic people have ‘superpowers.’ It is true that autistic people  tend to have skills and strengths in a number of very useful areas. We are often great pattern thinkers, able to make connections between things that others miss. We are often very good at spotting discrepancies and errors in material others thought was OK. We tend to have incredible focus and the capacity to devote years or a lifetime to looking at a particular subject. We are often curious and question things. All in all these and many other things we tend to do well add up to some very useful things in the modern world. Maybe they go beyond the school or workplace and into addressing broader issues.

The other thing we have going for us in the world-saving stakes is numbers. I am not saying that there are more autistic people now than in the past but we are identified and identifying a lot more than in the past due to a greater understanding of what autism is among clinicians and autistic people. There is not so much an autism epidemic as an autism discovery. These numbers alone might not be helpful in addressing the worries of the world but something is combined with these greater numbers and that is a sense of identity and pride.

We live in a world where the stigma and hatred we have faced seemingly forever is being challenged by autistic people and genuine allies. We are increasingly out loud and proud and if the efforts of advocates continue this will hopefully get even stronger. In the past we were seen as weird, isolated on the sidelines but this is changing.

We need only to look at the example being set by so many public figures who have recently embraced their autism, people with influence across the board. I am constantly reminded of autistic teen climate activist Greta Thunberg who is leading and inspiring a huge global movement. I don’t think it would have been possible for my teen self to even contemplate doing such a thing given I only had negative views about myself after bullying and invalidation, but Greta is far from alone in the area of teen and tween autistic advocates and activists. I know dozens of amazing autistic kids and teens who have grown up being told they matter, being validated and encouraged and the results speak for themselves. Just look at Summer with her Chickens to Love business or Cadence from I Am Cadence. This generation is I think the first where there has been a background of the neurodiversity movement influencing thinking along with autistic-run organisations encouraging and supporting kids and some shifts in thinking among many parents, educators and service providers. I see our future as being led by these empowered kids and young adults.

Put together this all seems to me to be a formidable recipe for change and growth. The world’s issues can be seen as intractable and unsolvable but I have hope that autistic people, who employers often credit for solving impossible problems in the workplace, can use our very real ‘powers’ to make the world a better place and work to solve some of the supposedly impossible issues. I don’t know if we will but I really hope that autistic people will change the world. In fact I would argue we already are and have been doing so for some time. Into the future I see this continuing and increasing. Far from us being attacked and seen as an epidemic, maybe we will in fact be a panacea for a world desperately in need of what we have to offer.

Content warning: Bullying and violence

I recently read an article about Pathological Demand Avoidance (or PDA) and autism from the perspective  of a parent who had done a lot of research to inform how they supported their child. It was a very interesting piece and I learned a new thing in it – the ‘fawn’ response. I have known about fight and flight as a response to threats for years and about the freeze response for a few less years but the fawn response was a new one on me. And it is a new piece of thinking which strongly resonated with my experience. 

I have never done the fight response when under threat and rarely the flight one. I do the freeze one on occasion but I think up until recently at least, the fawn response has been my go to response to being threatened. The fawn response basically means a person tries to be pleasing to the thing – usually a person – threatening them. I think of it as the ‘too nice’ response whereby you placate the person posing the threat in order to (hopefully) escape unharmed.

When I was younger I did it all the time. I was afraid of confrontation as well as actual threats like violence and bullying. What I did was try to make myself as appealing as possible to the person threatening me. I think my subconscious figured if they liked me they would be less likely to damage me. Sadly it didn’t work like that and just resulted in me being seen as a complete victim and yes, indeed it led to me probably being victimised more than if I had used any of the other three responses to threat.

I hated that I became too nice when threatened. I felt like I had ‘victim’ written on my forehead in large red letters. I spent a significant period of time in prisons and locked psych wards in my early twenties. I was never physically assaulted in all that time. Not because I was scary myself, quite the opposite. I just ingratiated myself to every single person who I felt threatened by (i.e. everyone in there). I was absolutely terrified every minute of every day though.  I learned how all the aggressive women liked their cuppa so they would appreciate my thoughtfulness. Most of my meagre pay went on cigarettes – not for me but for everyone else! While I may have added some years to my life from not smoking the cigarettes I bought, this approach especially came at the cost of my sense of self.

I was so keen to avoid threats by being nice that my sense of who I was was steadily eaten away. When I decided to change my life for the better when I was 25 I had no idea of who I was. The masking and being pathologically nice over the preceding years had left me with no idea of who I actually was.  I did spend many years under constant threat. In prison your life is always at risk and things can change instantaneously in terms of relationships with fellow prisoners. As an autist who was noticeably ‘different’ and struggled to read facial expressions and other non-verbal cues, it was a very frightening place indeed.

The interesting thing is that in recent years I have stopped using the fawn response as a default. I remember being at an event a few years ago and there was a woman in attendance who I had distanced myself from as I found her threatening and we had a disagreement which has revealed her unpleasant side to me. She came up to me at lunch in front of several other people and demanded to speak to me. In an award-winning performance of assertiveness and limit-setting I said to her “You are a toxic person and I do not wish to speak with you.’ She walked off and I haven’t seen or heard of her since. When I said those words I was in fight, flight, freeze, fawn mode as it was pretty stressful and there was a risk of her being verbally aggressive. I don’t know which response I did – maybe fight? Not sure but it certainly wasn’t fawning. 

I have become assertive and this impacts on how I respond when under pressure. I think my danger now is that I am possibly too assertive and set limits to strictly but I am aware of this so try to take that into consideration. For someone who felt like they had ‘victim’ written on their head for many years I can only conclude that this is a good problem to have! 

I do think a lot of other autistic people have the fawn response as their default setting. I imagine it is influenced by some of things a lot of us experience – bullying and abuse and other invalidations. It could be seen as a safer response than fight, flight or freeze but if that becomes the default setting people can end up like I did not knowing who they are and being taken advantage of and victimised. The key for me was building my self-worth and my confidence. This did take some years but it is nice to be in a situation where I know if I am threatened or in a confrontation I am more likely to be able to control the situation and respond in a way which doesn’t result in me being further taken advantage of.

I wish I didn’t need to write this post. I hate that there are some people in the world who see a vulnerable person and think of ways to attack them. I hate that I was victimised for many years and that so many of my autistic siblings are still being victimised. I would never blame the victim for the abuse and bullying. I do know from my experience it is possible to respond to threatening situations with assertiveness and confidence. I wish that understanding for everyone as I know it makes life less frightening.