Intelligence is a very loaded attribute. Intelligence is a particularly problematic concept in the autism and disability spaces. 

Firstly intelligence takes a number of forms. There is ‘IQ’ type intelligence, emotional intelligence and social intelligence. There is also resilience and wisdom gathered through experience. None of these attributes make a person any more or less but they do lead to judgement. We live in a society which largely privileges intelligence and views it as a quality which makes some people ‘better’ than others.

Intelligence is an attribute, like having blue eyes or liking the colour purple. But unlike those attributes intellect has a loaded meaning. High intellect is considered a positive quality and people judged as intelligent are considered somehow better than those with lower intellects. There are lots of insults related to intellect – ‘stupid;’ ‘dumb’ ‘idiot’ are all ableist slurs based on a low intellect. This is not OK and intelligence really is just another attribute. It could be considered that being intelligent may make it easier to navigate the world but that is not necessarily true. People with a high intellect can be bullied for it – I was – and can also worry a lot about life.

The measurement of intelligence is fraught, especially in the context of disability. IQ tests are extremely problematic. They are culturally loaded but they can also be extremely misleading for people who use communication methods which aren’t verbal speech (alternative and augmented communication, or AAC). I have a friend called Rosemary who runs a service for people who use non-speech communication. Rosemary has done a lot of work with education departments because the IQ tests used to determine whether someone goes to mainstream school or not do not accurately measure the capability of people who use AAC. Basically the tests are only accurately representative of intellect for those who use verbal speech so when they are applied to someone who uses AAC the results are misleading. When Rosemary used a different IQ test with these kids – one that more accurately measures the capability of people who do not use verbal speech – the change in results was dramatic. Children who had initially been assessed as having an IQ of under 60 points now had a revised score of average and in some cases above average IQ. So administering an inappropriate test robbed these children of the capacity to demonstrate their actual capability and meant in some cases that they were sent to the wrong school.

A lot of autistic people are ‘twice exceptional’ meaning they have a high IQ and a disability. This group can struggle with attitudes of others based in the idea that being intelligent is ‘good’ and having a high IQ should make life easier in all other domains. This in fact is far from the truth. The ‘high functioning’ label can be applied meaning they miss out on support and services they may need. Then there are autistic people who get the ‘low functioning’ label. This group are viewed as having low intellect and low capability. In my experience the people who get a ‘low functioning’ label are usually people who use AAC. Our bias as a society towards spoken communication means those who use communication methods other than speech are somehow considered lesser. This TED talk by author, advocate and AAC user Tim Chan covers off a lot of these issues: https://www.youtube.com/watch?v=Woy-XzC-UVs 

It is very easy to fall into the trap of judging people by intellect or using ablest slurs related to intellect.  I would say work to check this as it makes life harder for everyone. See intellect as an attribute and nothing more. It is such a loaded thing but it doesn’t need to be.

   

Viewing the world through the lens of intersectionality – a concept coined by Kimberle Crenshaw – shows us that some groups of people have privilege. The categories of those who have privilege include men, cis gender people, heterosexual people, white people, wealthy people and able-bodied people. Chances are you will belong to at least one of those groups. In contrast to privilege, there are groups which experience discrimination and disadvantage. These groups include People of Colour, Disabled people, women, trans and gender diverse people, poor people and those who have a non-heterosexual sexuality. There are other groups which face disadvantage – this is not an exhaustive list. Privilege means that you will have less – or no – barriers to succeeding in domains of life like work and education. Being privileged does not mean your life will be free from hardship. It is more a structural issue than an individual one. So a white, cis gender, able-bodied, heterosexual man will most likely be free from discrimination in employment but this does not mean he won’t have any challenges in his personal life.  

Like most of us, I belong to a few disadvantaged groups and a few privileged ones. The privileged groups I belong to are white people, middle class people and  Australian citizens. I have always hated my privilege, even at a young age I didn’t like the advantages that came with the privileged groups I belonged to. I used to feel very guilty about being white or being wealthy. Recently I learned that guilt about your privilege is actually really unhelpful. It doesn’t achieve anything in the struggle to make a more inclusive world and it commits the cardinal sin of diversity – that of making it ‘all about me’ as a privileged person.

So if guilt is unhelpful, what should we do about our privilege?

I think the first thing is to acknowledge and understand the privilege and what it means. Learn about intersectional issues, listen to the stories and experiences of people in disadvantaged groups. Become aware of your privilege. Also become aware of your biases. Often our biases are unconscious but we can still observe our attitudes and behaviour and call ourselves out if we see any biases. One way of noticing bias is looking out for if you are stereotyping and making assumptions about a particular group. 

Another thing which isn’t helpful around privilege and bias is the attitude of ‘but I’m always nice’. Nice will not save the world. I mean being nice to people is certainly not a negative thing but if we think we are saving the world by having a friend from a diversity group that we don’t ourselves belong to then we have got something wrong. Certainly be nice but that is the very first step on the journey to my mind. It also should be a given ro respect people from any group.

Don’t hate your privilege but do check it. I had a friend say they would have had housing issues if their parents hadn’t purchased a house for them! That is a situation where checking of privilege would probably have been appropriate. Checking your privilege can become a useful habit. Being aware that not everyone has the same opportunities that you do is a good place to start.     

You can actually use your privilege in a positive way as an ally. Often people in a privileged group who are not inclusive will only listen to others in their group. As an ally you can be the person they listen to and in that way you can help to change their mindset. Genuine allies are a very useful thing indeed.

I have an example of privilege which relates to the idea that people in positions of privilege don’t always have any concept of what that means. I have a friend who used to work for a company that put on events. Her manager – a white, cis gender, heterosexual, able-bodied man – gave my friend a list of speakers for a conference that he had created. My friend – a woman from a refugee background – took one look at the speaker list and said ‘you have no women here, no People of Colour…’ The manager was astounded at this perspective and asked my friend how she knew all this information on diversity.  The manager probably wasn’t being deliberately exclusionary. He simply didn’t have any experience of not being privileged. He picked speakers who were like him – a very common action from a person occupying a position of privilege.

Privilege is just part of society but it is extremely important to be aware of it and check ourselves to ensure our privilege is not causing us to be prejudiced, biased or disrespectful. I find intersectionality to be an excellent way of understanding the world, especially given that I belong to many intersectional groups and work in the diversity and inclusion space myself. However, it is a useful way of approaching life for all of us.  

Like many other autistic people I struggle with anxiety. I have struggled with anxiety for as long as I can remember. For me anxiety is mostly about worrying and ruminating. I catastrophise and imagine the worst possible outcome. My biggest fear at the moment is home maintenance, and in particular plumbing. I get so worried thinking that a minor fault will flood my house. Then when the plumber arrives I catastrophise that they won’t be able to fix it and I will never be able to use my shower again! After they leave I worry it is still faulty. I could worry about plumbing as an Olympic sport! One of the worst things about my anxiety is that I spent years being too ashamed to tell anyone that I was anxious about something that I considered shameful. This meant that I got no help for what in fact became a very dangerous situation.

For me anxiety can turn into psychosis. Apparently the brain chemistry that happens when you are anxious can trigger off the neurotransmitters that cause psychosis. This is very common for people with psychotic illnesses – like me. So when I start to get anxious I then add to the worry that it means I may get really unwell and all that entails – hospital, taking extended leave from work, lots of suffering.

I don’t just want to talk about what anxiety feels like or leads to though. I want to share some of the strategies I find effective to help address my anxiety. My strategies are drawn from a few therapy models that I have used. I think that there is value in most of the main therapy models and that people can find a range of skills useful. I know some autistic people don’t like Cognitive Behaviour Therapy (CBT) but I have found some value in CBT approaches. Therapy models really are up to the individual and what works wonderfully for one person will be totally useless for another.

The first strategy I use is a simple one – deep breathing. Anxiety is a physical, bodily sensation. It is the fight / flight / freeze / fawn response to a perceived threat and is a hang on from when we were under threat from sabre toothed tigers and the like. What happens when you are anxious is your body getting ready to cope with a threat and it is a physical thing. As such the physical act of deep breathing can help address the physiological manifestation of anxiety. There are lots fo different deep breathing techniques but they all involve consciously slowing down the breath. I find this approach very effective. I also practice deep breathing when I am not highly anxious. I find it helps with sleep and to slow me down – I am a very high energy person and am usually rushing from one thing to another.

Mindfulness. Mindfulness is a meditation technique which helps with anxiety. Mindfulness is all about being present in the moment. Not worrying about the future or dwelling on the past but experiencing what is happening now and working through that. Dr Emma Goodall has a wonderful website which focusses on mindfulness for autistic people – https://mindfulbodyawareness.com/interoception/  You can also download mindfulness apps for your phone or tablet. I recommend Smiling Mind.

Distress tolerance. This is a skill from the Dialectical Behaviour Therapy model. It comes from the premise that avoiding things which make us anxious is actually unhelpful in a lot of cases. Distress tolerance is about ‘sitting with’ difficult emotions and working through them. Avoiding things which make us anxious can be a very destructive thing as we will just stop doing a range of things that are too hard. For me I have found myself avoiding using taps which ended up being pretty restrictive! One thing you can do is gradual exposure. You start small with something you find anxiety-provoking and gradually increase your exposure until you are less anxious when you do the thing causing you worry. This is quite a challenging technique but can be very effective. It is also great for giving you a sense of mastery when you have overcome a challenge. 

Distraction. This is a skill used in many therapy models. The premise is pretty straightforward. It involves engaging in an activity to occupy your mind. When your mind is occupied it is not devoted to anxiety. I find distraction very effective but it can be hard to remember to do it when you are in the middle of fear and anxiety.

Seeking help. You do not have to go through this alone. There are counselling services like Lifeline, mental health clinics and psychologists who can help you manage your anxiety. Be aware that some clinics and psychologists could use a bit of education in the area of autism so ask around and try to find a clinician who ‘gets it’. Clinical services can do more harm than good for autistic folk sometimes! I would recommend talking to neurodivergent friends and peers to see if you can find a clinic or psychologist who is likely to be helpful.

Anxiety is a big issue for many of us, including me. The strategies I have listed don’t ‘fix’ anything but hopefully can make things a little easier to manage.

I am a non-binary autistic person. Non-binary identity is a kind of transgender identity. I have many other trans autistic friends and am very proud to be an out trans person. Sadly not everyone shares my sense of pride and respect for trans people. Transphobia is very, very real and many of us experience bigotry daily. Autistic trans people are often on the receiving end of bigotry and discrimination. Being autistic brings a range of additional challenges for trans people. 

There is a recent study from the USA which showed that autistic people are 7.5 times more likely to be trans and gender diverse than the general population. This statistic is borne out in my anecdotal experience too and I know many autistic people who are trans and gender diverse. Children and teens are particularly well represented in these statistics. I think this is wonderful and I am delighted that kids know their gender at younger ages. It took me 43 years to realise I was non-binary and I would have loved to know my identity at a younger age as my identity is liberating.

Sadly not everyone sees coming out as a liberation. For transphobic people gender diversity is a threat, something to be attacked and criticised. Critics of autistic trans people come from a range of quarters. I want to unpack some of the bigotry here. 

The first form of bigotry is TERFs. What is a TERF? It stands for trans excluding radical feminist and it is nasty. JK Rowling is a prominent TERF which really upsets me because I love Harry Potter and always thought the Harry Potter universe was an inclusive one but apparently not. TERFs are particularly hostile to trans women. I can never quite figure out what their issue is but I think it centres around thinking trans women are men trying to infiltrate the world of women and somehow gain rights as women. TERFs refer to trans women as men and even want to harm trans women sometimes. Basically it is a load of bigoted, harmful nonsense. TERFs make me very angry. Trans women do not have some sinister agenda. Being trans is an integral part of identity, not a conspiracy!  Trans women experience a significant amount of bigotry and discrimination. I cannot imagine anyone transitioning in order to gain perceived advantages as a woman. To my mind the TERF argument is just nasty, hostile prejudice. The fact that feminists (and it is not all feminists I should add) participate in discrimination against fellow women (who happen to be trans) is very disappointing indeed. I used to identify as a feminist in the past but now I avoid the term because I don’t want to be associated with TERFs. 

Another issue trans autistic people experience is autism world figures making harmful statements about gender identity and autism. This happened recently with a notable clinician saying autistic trans kids don’t know their own gender and are being coerced by adults with an agenda. Seriously WTF?? Autistic people spend a lot of time reflecting and questioning our identity. We are known for it. If you are singled out for being different then you are probably going to reflect on who you are. An autistic young person who is questioning their gender should be supported rather than criticised and invalidated. And it is the height of condescension to tell autistic trans people that they don’t know their gender. Instead of making these statements maybe clinicians could listen to their trans autistic clients and understand where they are coming from rather than dismissing their experience. I hate when public figures – be they fiction authors or autism clinicians – use their position of authority to spread transphobic thinking. I think these people have a responsibility to promote inclusion not division. 

The other transphobia issue is a nasty one and it involves trolling and bullying. When I was in school I was bullied for my autistic differences and also my ambiguous gender. As an adult I have been trolled for my non-binary identity. These things are extremely hurtful and can be dangerous. Many autistic and gender diverse people – in fact I would estimate possibly all of us – experience trolling and bullying and it is not OK.

I think we need to build a sense of pride and respect for trans autistic people. This involves challenging bigotry and transphobia wherever we find it. Genuine allies can help with this by calling people on poor behaviour and prejudiced or ignorant statements. Trans and gender diverse autistic people have a right to be heard and respected just like anyone else does.  

Here are some resources:

QLIfe – https://qlife.org.au 

Spectrum Intersections – https://www.spectrumintersections.org 

A Gender Agenda – https://genderrights.org.au 

I am an autism advocate. Much of my work I do by myself – memes, blog posts, giving advice to people who have asked for it. This work is all very straightforward. I don’t have to worry about working with others, I just say what I want to and express my views. However, a lot of my advocacy work involves other people and organisations. Presentations at conferences, media interviews, that sort of thing. Many of these organisations are ethical and positive and share my views on neurodiversity and empowerment. However, some organisations say and do things that I have strong reservations about.

I find myself feeling very conflicted at times. I want to reach the audience but I don’t want to align myself with problematic organisations. Over the years I have come up with a strategy for problematic organisations. That is to view my work with them as being for the audience rater than the organisation. I imagine that if I wasn’t speaking and no other autistic speakers were there then the audience would not get a Neurodiversity perspective. They would not have the opportunity to hear autistic voices and that would be a greater negative than me feeling uncomfortable about speaking for an organisation I disagree with. As such it is a positive that I am there, even of it makes me feel icky.

There are some organisations I will not have anything to do with as I think they are entirely toxic. Organisations like Autism Speaks who I think would seriously taint my message should I be involved with them. I often find myself having to make judgement calls about organisations and weigh up which ones I need to veto and which I can reasonably work with.

Another issue is publishers. Sometimes one of other of my publishers will publish a book which is highly problematic such as one promoting Applied Behavior Analysis (ABA). If I boycotted the publisher then my books would not reach an audience and I’m fairly certain my books are very positive and empowering. Sometimes it pays to remember that organisations do not share my experience and views and to see this as an opportunity to educate them rather than a reason to avoid them altogether.

Media outlets can also be a challenge. Over the years I have done a large number of  media interviews. You never know what sort of approach they will take and it is always stressful doing interviews. But once again it is a positive to share my views and I am happy that they have asked an autistic advocate to be part of the program rather  than – or in addition to – an allistic commentator. 

It is a fine line that an advocate walks and I accept that I may get it wrong at times. My primary responsibility is to the audience and to making sure that they get a Neurodiversity perspective. I aim for my work to be driven by a message of positivity and empowerment. 

We live in a world of nuance and subtlety and the autism world is no exception to that. It would be nice to be able to always make clear cut decisions but the world doesn’t work like that. My work puts me in a place of nuance quite frequently. As an autistic, nuance is not my favourite thing and I would much prefer clear answers but it doesn’t work that way. As such I need to make judgement calls about my various involvements and hope I get it right while being aware that there is every chance I will get it wrong. This is probably why I like the things I do by myself best – give me a meme or a blog post any day!

I am by anyone’s estimation something of an anomaly. An ex-prisoner who has become a career public servant, a many times published author and community leader. An autistic and schizophrenic person who owns property and has featured on a large number of media outlets around the world. I should have died dozens of times over but didn’t. I am, to put int mildly, highly unlikely.

People often see autism as only a negative but this isn’t what I see – not in the lives of others but particularly not in my own life. Autism certainly played a part in some of the challenges which threatened my life but that was often more in relation to the attitudes of others around my autistic characteristics. For example I was bullied mercilessly at school pretty much from start to finish but the bullying was the problem rather than my autism. In a world where people were treated with kindness and respect it wouldn’t have been an issue. Likewise the criminal partner who ushered me into the darkest period in my life was only able to draw me towards him due to the fact I was lonely and longed to be accepted. I was so desperate for approval and companionship that I overlooked my partner’s negative behavior. I was vulnerable and he took advantage of me. In a world where vulnerable people were supported and cared for rather than exploited I would not have had this problem and would probably have avoided five years of drugs and prison and being victimised relentlessly. 

So what about the life-saving stuff? Well one thing which helped me survive in the world of criminals and drug addicts was masking. I’m not saying masking is a particularly useful quality but in my situation it enabled me to get by and avoid violence on several occasions. It did mean that when I got away from that world of drugs and crime that I needed to work out my character and decide what attributes I wanted for myself which was actually a very positive thing. Another element related to autism which helped me survive in those dark times was my love of music. I spent most of my time in prison in the management unit which meant I was mostly by myself. Music was my company. I recorded a number of tapes from the radio (yes young people, we had cassette tapes then!!)   Music was my friend and it kept me going.

Another time when my autism saved me was in my determination when I eventually wanted to change my life. In the lead up to the millennium I decided I needed to escape the world I had been inhabiting for the previous few years. I decided that the new millennium should equal a new life for me. I was released from prison in February 2000 and I was determined to stay in the world of free people. I was sent to a therapy course and I used my focus to get as much help as I could. I remember making lists of the reasons I didn’t want to go back to prison and reasons I liked being free. At this point in my life I was an institutionalised recidivist who most people had written off as a hopeless case. I had major mental illness issues and was considered incapable of being part of society. The people thinking that evidently didn’t have any understanding of just how determined I was.

I finished the therapy course and decided to enrol in university. I had realised that I wanted to be ‘ordinary’ – to have a professional job, a mortgage, an education and a suit. I didn’t tell anyone of this intention as I realised they would doubt me but it kept me going. In fact I had all of those things within eight years of making that resolution. 

My autism gave me a number of useful attributes – motivation, determination, honesty, creative talent (I completed a bachelor, honours and masters of Fine Art). When the time came for me to apply for my ‘ordinary’ job (a graduate role in the Australian Public Service) I had quite a unique approach, I realised that the public service doesn’t usually hire people with criminal histories but I also realised that I would be a very proficient public servant and I would probably enjoy the work. I realised that if I applied and they said no then things would be exactly the same as they were before I applied. There would be nothing lost. My honesty meant that I was upfront about my activities in the late 1990s at the earliest possible stage in the process. When I was offered the job provisional on a medical and a police check I provided a document listing what happened in the past and why it would never happen again. I provided character referees and a copy of my recently-published autobiography. The department conducted a review and decided to employ me. I am fairly certain that my autistic honesty and openness secured me my job. I am still in the service thirteen years later. 

Thers days I don’t have to look too hard to find my autistic characteristics doing good things for me. Life is very different now to what it was 20 years ago. Back then everything was loaded and things could have gone wrong at any point with disastrous consequences. I am grateful to all those elements that make me who I am and have enabled me to overcome extreme challenges successfully. I see my autism as something which has the potential to help or hinder, largely dependent on others’ attitudes and behaviour. 

In 2018 I came out as non-binary. In 2019 I changed my name to Yenn, mostly due to my gender identity. When I came out a number of trans and autistic friends said I would find out who my friends really were. They were 100 per cent correct. I was surprised at some of the people who rejected me and also surprised at some of the people who were respectful and inclusive.

Coming out was a liberation for me. My trans identity is a huge part of who I am and I am happy and proud to be non-binary. However, some people were not inclusive or respectful. I got relentlessly trolled on YouTube when I posted a coming out video diary. I had people tell me my identity was a mental illness. I had some people question on identity because I wore a dress and because I was part of a women’s exhibition. There is nothing quite so invalidating as having people tell you your identity is wrong!

One thing which I – and probably all other trans people – experience is being misgendered. Misgendering is when people refer to you by the wrong pronouns. I use they / them / their pronouns and the number of people who get it wrong is immense. In fact the vast majority of people get it wrong. I never know whether to correct people or not as mostly people do it accidentally and often they apologise – although not always. There is a vast difference between intentional and accidental misgendering. Actually when I first came out the worst culprit at misgendering me was me! I had been she / her for 43 years so it took a bit of getting used to! Misgendering is not nice though. I don’t think many cis gender people quite understand the impact of misgendering. To me it feels like being called the name of someone from my past that I don’t like very much. Conversely it is such a lovely thing when people get it right. Very respectful and decent. I wish misgendering wasn’t such an issue though. 

The other thing is my name. I have been Yenn for a while now. Many people only know me as Yenn. I love my name and changing my name has been a really positive change in my life. I feel comfortable and confident with my correct name. Some people still get it wrong though, including the publisher of one of my books and Australian Amazon! Most people have been fine with my name change though, including my parents who I actually thought would really struggle with it, given that they gave me my original name! 

I struggle with some of the discourse around trans identity and autism. Recently a well-known clinician has come out with some very unhelpful thinking about autistic kids not being able to know their gender. I find this really disappointing but those attitudes are sadly prevalent throughout society. These attitudes are so damaging especially when they are levelled at trans autistic kids. I should say though that people can change their attitudes around gender diversity. I had some very negative attitudes around my gender from one autism world public figure but over time they changed their views and we are now connected online and they are very respectful.  

There are studies that show that autistic people are over seven times more likely to be trans and gender diverse than allistic people. That is a lot of trans autistic people! I am not sure why so many of us are trans. I have heard it said that autistic people are less likely to conform with societal expectations but I am not sure if that is the reason. Whatever the reason, there are a lot of us. For me coming out was a total liberation. A lot of trans people have gender dysphoria but not everyone. I don’t think I have gender dysphoria so finding and embracing my non-binary gender was just a lovely additional aspect to my identity. I am very proud of who I am. I love being non-binary. Coming out changed my life in so many ways. It is just beautiful. 

Here is a video of a webinar I was part of talking about autism and LGBTQIA+ issues for Aspect. https://vimeo.com/433812449 

  

I have wanted to write this piece for some time but have struggled to start as I feel it is extremely important to get this post ‘right’. I hope this piece is helpful and that it serves to boost understanding, respect and activism.

I will start by saying I am white. I have white privilege and I do not know nor will I ever know what it is to not be white. I will never be profiled by police or other authorities based on the colour of my skin. I will not have racist assumptions levelled at me daily and I will never know what it is to be told be a parent that there will always be some people who hate me simply because I am Black – as one person on social media reported their parent as saying to them at the tender age of three years old. I do not know the very real fear of death or injury at the hands of racists, including racist police. These will not be my experiences but I see these things happen and I am horrified. I want to be an ally, a supporter, someone who speaks up against this horror. 

The recent Black Lives Matter movement is part of an ongoing struggle. I don’t think the movement is solely due to the death of George Floyd and others at the hands of police in recent times. The movement responds to institutionalised racism in the USA which has existed since the 1600s when slavery began. And the institutionalised racism is not confined to the USA. Many countries, including my own, were founded with racism and genocide. People should be angry. What has happened over and over and continues to happen is a reason for very justifiable anger.

Sadly protest is often met with counter-protests – reactionary, knee-jerk bigotry. To the people who say ‘all lives matter’ I say ‘well d’uh.’ Of course all lives matter but Black lives are the ones under threat from the people who they should be able to look to for support and protection. When oppressed people feel aggrieved they tend to fight the status quo but when people in positions of privilege and entitlement feel aggrieved they tend to take their anger out on oppressed people. Unlike oppressed people, they are not aggrieved by the status quo – in fact the status quo backs them. That is why they are privileged in the first place! ‘All lives matter’ is evidence of this. I saw a wonderful meme which said something along the lines of ‘All lives matter’ is like saying ‘save the whales’ means screw all the other sea creatures’. All lives matter is a given, and not a valid slogan.

I was watching Adam Hills The Last Leg recently and they had Black comedian, Desiree Burch on the show. It was a really enlightening conversation. One thing I took from it was that Desiree asked white people not to block racists in their social media or their family but instead to challenge them. The rationale for this was that the racists are not going to be listening to People of Colour but they might listen to white allies in their family or friends list. I will resolve to do that.

Another thing I will resolve to do is to do something. It is very easy to make a few comments about how things need to change and like a post or two on Facebook but not actually engage in any action. The present situation requires action. It cries out for action. We are at a point in history where change can happen and we need to make that change. The protest needs to continue and be ongoing. I think there is a lot to protest about.

One thing I have noticed about the neurodiversity movement is that is can be quite white but there are a lot of autistics who are People Colour. Matthew Rushin, an autistic man with traumatic brain injury,  is right now in prison wrongfully, largely based on the lack of understanding about autism and racist assumptions of police officers and courts..There is a campaign to free Rushin but I can only imagine what he is going through. I can actually say that with some authority as I spent 3 years in prison in the 1990s and I can categorically say it is not a helpful or supportive place for autistics. I actually did the things I was imprisoned for but to be in that situation and to be innocent like Matthew Rushin is horrific.

I hope this piece was useful. I think the global response to the Black Lives Matter movement and protests is very positive. While racism is endemic in many societies, so is the fight against it. Racism is bigotry and hatred and is never ever OK. I know that I have unthinkingly been racist at times and I think most white people have. Rather than hate myself for this I can use the experience to drive positive action. I want to be a good ally but I know I need to always be aware of my privilege and listen to the voices and experiences of People of Colour and take my cues from them.  As an autistic person I know that an ally needs to take a back seat to those they are an ally to and that allies cannot speak on behalf of people on the receiving end of hatred and bigotry. Within those parameters I hope I can be a useful ally and not be oblivious to my own privilege and try to make the whole conversation – and even the movement – all about me.

When I was a teenager a movie came out called Rain Man. This movie was supposed to be a depiction of autism. Strangely enough the person the autistic character was based on was actually not autistic. This film was one of a tiny number of things at the time claiming to be a representation of autism. For years – and even now sometimes – Rain Man is brought up as an example of autism. There were almost no other representations of autism at this time and it stuck in the popular consciousness.

Over the years more representations of autism in popular media emerged. Initially almost all of these representations were created by allistic people and most of them were one dimensional and based in stereotypes and assumptions. Autistic characters were usually male, cis gender, asexual and white. They often had savant skills and lacked empathy. They were often presented as eternal children. Autism was presented as a sort of alien existence – people who were unreachable and less than human. It is understandable that the puzzle piece was used to represent autism based on these assumptions and stereotypes – we were seen as puzzles and we still are. There were almost no autistic voices and representation was done on behalf of us rather than with us. Sadly this focus still persists in some representations of autism even now. I struggle to watch some movies and TV shows about autism as I am afraid that the autistic characters will be stereotyped. I actually find it quite anxiety-provoking to watch programs with autistic characters for this reason and often avoid looking at them or I ask a friend to watch them with me.

There is one type of representation which is almost always positive and that is the representation by autistic people themselves. In 1992 Polly Samuel published Nobody Nowhere – an autobiographical account of her life as an undiagnosed autistic woman. This book was an instant bestseller and was purchased by millions of people. Polly’s book was one of the first an accounts of autistic experience told by an autistic person and it was hugely important in terms of autistic representation. As time went on more autistics wrote about their experience – including Wenn Lawson, Liane Holliday-Willey and even me. This representation was authentic and genuine. Autism advocacy by autistics for autistics started to emerge as a ‘thing’ at around this time too with autistic-run events like Autscape and advocates speaking out about autistic experience and the Autism Self Advocacy Network lobbying for change. The concept of Neurodiversity, a term coined by advocate Judy Singer, started to take off. An excellent account of the Neurodiversity movement is Steve Silberman’s book Neurotribes.

In recent years there has been a bit of a dichotomy going on with some representation of autistics being in the stereotype mould and some representation being based in neurodiversity and self-advocacy principles. The other day I was featured on ABC news program The Drum as part of a segment on autistic author Kay Kerr’s new book ‘Please don’t hug me’. I was brought in as the expert opinion on women and girls on the autism spectrum. I was very excited to be involved as often an allistic expert would have been brought in to offer their thoughts. Here is the link to the piece. I think I did ‘expert’ quite well: https://www.abc.net.au/news/2020-06-17/author-kay-kerr-on-representation-of-autism-in/12366472?nw=0

One thing about the shift towards more autistic representation is that we can’t be complacent about it. Gains are not set in stone. Advocacy and activism are not linear and gains can just as easily be rolled back as improve. As such representation is incredibly important. We need to call out where stereotypes and unhelpful representation is happening and we need to offer a more positive and inclusive view wherever we can. 

I thought I’d finish with my recommendations for some works of fiction featuring autistic characters so here goes…

Film: Extremely Loud & Incredibly Close

Film: Temple Grandin, 

Film Please Stand By

Film: I am Khan 

Novels: The Rosie Project, The Rosie Effect, The Rosie Result, Graeme Simsion
 

Content warning: bullying, mental health issues 

Tomorrow, 18 June, is Autistic Pride Day. Yay to that. I’m all for pride. Autistic pride means a lot to me. I was bullied and targeted for my ‘difference’ as a child and teen and made to feel anything but proud to be me. As a young adult I got in trouble with the law and was viewed as an aberrant member of society. I had no sense of self respect or pride – quite the opposite in fact. I was diagnosed  as autistic in 1994 at age 20. To me the diagnosis was  entirely negative. Outwardly I didn’t believe it was true. The diagnosis to my mind validated the hatred of bullies I had endured for years. It was like all their insults were encapsulated in that hated word ‘autism’. It was a diagnosis of weirdo. I hated my autism and kept it hidden where possible. I was so bothered by my autism that I couldn’t watch movies or TV about autistic people. My autism diagnosis could have been a means for me to understand myself better but instead I was avoiding it and getting into more and more trouble in a bid to prove I was like allistic people.

My inability to accept my autism related to my self-esteem and self-image. Bullying had left me hating myself and thinking I was a terrible person. In actively sought out negative outcomes and tried to be accepted in social groups including drug users and criminals, I thought if I could be accepted by these groups I would prove that I was ‘cool’ and autistic people in my limited experience were not ’cool’. My self-loathing was bound up with my denial of my autism. Had I liked myself a little bit more I would have been able to see my autism is a key part of who I was but this realisation was years away.

In 2000 I decided to change my life. I had just spent around five years in and out of jails and institutions. I was the most desperate and unhappy person imaginable. I had thrown my life away, partially as a means to distance myself form my autism diagnosis. But in 2000 I decided this would change. My mantra was ‘new millennium, new life.’ I still didn’t accept my autism but I was on the way. The new life I aspired to involved professional work, further study and a mortgage, not necessarily in that order. I wanted to be ‘ordinary.’ I enrolled in university and set out to change my life.

One thing I discovered at university was that people liked me for who I was. I had several genuine friends for the first time in many years. At the end of first year in university I became unwell with schizophrenia. I spent time in hospital and did a lot of soul searching. When I got home I came to the understanding that I was autistic. It was not a ‘see the light’ moment and I did not instantly proclaim my commitment to Neurodiversity. I saw my autism as a part of me but a part I didn’t quite trust. I was more able to tell people I had been in prison that that I was autistic for a couple of years.

I gradually became less of a self-hating autistic but it was a journey. In 2004 I took part in a public speaking course for autistic adults organised by an autism and employment service. It was the first time I had been around a group of fellow autistics. I met a woman called Donna who was an author. Not having been involved in the autism community I didn’t know who she was but it turned out that she was very well-known. You may know her as Polly Samuel and she became my mentor. I spent a lot of time with Polly. She introduced me to the concept of autistic pride. Polly also encouraged me to write my life story. I did and I guess the result is that I am sitting here writing this blog and that I have a significant profile in the autistic community. Polly essentially gave me my advocacy career and my sense of pride as an autistic person. After my first book came out I was thrust into the world of advocacy. It was utterly terrifying and exhilarating and liberating all at once.

I guess the take away from my pride journey is that there is no one right way to do these things. People do not need to instantly go from being diagnosed to being an advocate. There are many challenges and barriers to pride. I am delighted that I got to a position where I like and value myself and feel a very strong sense of pride but I acknowledge that for some people it is a challenge. I long for a world where we don’t need a pride day because it is pride day every day. Happy Pride Day to you all. We are amazing and should celebrate being our unique selves.