On being an anomaly. Or how autism saved my life

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. 

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My name is Yenn. I am non-binary, autistic and proud 

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 

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Black Lives Matter – my autistic perspective 

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.

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Representing autism – from Rain Man to Neurodiversity 

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
 

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What autistic pride means to me

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.  

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Accessing housing

I was just discharged from hospital on Wednesday after seven months of hospital admissions and residential mental health services. During the past seven months I have met a lot of people with mental illness and psychosocial disability. I noticed one issue common to almost everyone I met – housing. I was in a group last Monday and a new patient was there. I told him how I had just moved house and he asked if it was public housing. I said no and he asked if is was mental health housing. I responded that it was not and was I fact private rental. The man was vey surprised. Apparently people with schizophrenia do not live in private rental properties. I didn’t tell him that I was in private rental while the property I own is renovated! In my time in hospital I didn’t encounter anyone who said they owned property. Almost everyone was in public or supported housing. I felt I had a huge amount of privilege to own my own home. It helped put things in perspective. There was one man I met in residential services who lived in a hosing project for homeless men. He kept going home every day to check his room, worried that it had been broken into as most of the neighbours had an issue with drugs and alcohol.

In terms of my current private rental property, I applied for two properties and was successful in the first one. I may have been successful for both as the second one called my referees but I told them I had already accepted the first one. I am presumably a perfect tenant – secure job, property owner, no kids, no pets. But being a perfect tenant makes me feel decidedly uncomfortable as I know so many people who would struggle to secure a rental.

Housing is an area where privilege is clearly evident. It is also often a challenge for autistic people. Autistic people are often unemployed, underemployed or outside of the labour force, meaning real estate agents do not view us favourably. We often have pets or assistance animals which can lead to discrimination too. We may not have a history of renting and we may struggle to find referees. For autistic people accessing housing can add significantly to stress and anxiety. Even if we get a rental it can be stressful. We may worry about damaging the property or being evicted.  In fact autistic people are often very good tenants but we can doubt ourselves.

Home ownership is something many autistic people – and others – are denied access too. Employment issues can make ownership unattainable and if we do manage to buy property it can be highly anxiety-provoking. I have struggled for years with anxiety about my property being damaged by flooding or fire. The anxiety involved has led to major mental illness episodes on two occasions, one of which lasted for over two years and both of which threatened my employment. So even if home ownership is seen as the pinnacle of housing options it can in fact be very stressful while for many it is simply impossible anyway. 

Sharing houses is an option many people take. For autistic people this can be fraught, with bullying housemates or housemates engaging in behaviours which are inappropriate or disrespectful. A share house is usually decided by a short interview which may not be enough time for autistic people to gauge whether someone is suitable to live with. Share houses are generally cheaper than living alone but can be very stressful. When I was younger I lived in a series of share houses. My average tenancy was six months because that was how long it took for me to realise the situation was unsuitable – one housemate moved out with her boyfriend leaving me very lonely, the next was a very sexist man and the next were two brothers who were lovely but who never cleaned up or did their dishes. 

I lived in public housing for five years in the early 2000s. The rent was very cheap but the flat I was in had major issues with damp and black mould and all my neighbours were alcoholics or drug addicts. I wanted to fit in and be social so I became an alcoholic in order to be accepted by my neighbours. I had a woman who stalked me and it was a very stressful time. It was a bit of a trap too given how cheap it was. I ended up getting a full-time job in another state to escape my public housing nightmare. Public housing can be very challenging, particularly living in large public housing developments. 

Housing can be extremely fraught for autistic people and others. It is an issue that I don’t have a solution for and is related to deeper issues in society around poverty and ableism. I long for a world where housing is equitable and accessible. I know I am extremely privileged and am grateful for that. I wish I wasn’t the exception though.

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Why I say “I am Autistic”

I am a member of the Disability Leadership Institute, which is an excellent organisation. I attend a regular Zoom meeting of the group which always generates interesting discussion. Yesterday we were talking about the issue of people’s disability being used to define their identity. Others in the group – who are not autistic – said that it was quite fraught to identify someone according to their disability but I had a different approach. I said that autism actually does define me to a large extent and that this is the experience of many other autistics. Many of us see our autism as an integral part of what makes us who we are.

There is a famous debate around person first and identity first in autism. Do I say ‘I am a person with autism’ or ‘I have autism’ or do I say ‘I am Autistic’? And what does each option mean? I use identity first language (‘I am Autistic’) because I see autism as being a major part of who I am. If I was a person with autism I would presumably be able to put my autism outside the door and collect it on my way out! Most other diversity groups use identity first language to describe themselves. Someone is transgender, not a ‘person with transgender’. Similarly someone is not a ‘person with gay’. The same goes for cultural groups. And to an autistic person their autistic identity is likely to be a deeply held thing and important to their sense of who they are.

Some autistic people do use person first language though, for a number of reasons. While some in the autistic advocacy community think that is a bad thing and that everyone should use identity first language, I tend to think that the way someone chooses to identity is correct for them. I don’t like people telling me that I should identify as a person with autism though. This happens a lot and usually from well-intentioned people with little exposure to the autistic community. There are few things more infuriating than someone telling me how I should identify myself! When people do this to me they usually get a bit of a lecture which hopefully means they don’t do the same thing to someone else. 

All this is bound up in discussions around disability. Is autism a disability? Many would argue that it isn’t. For me I view autism as a disability through the lens of the social model of disability. This means that we are disabled by the attitudes and acts of others. While this isn’t true for everyone, I do not feel particularly disabled by my autism itself but the attitudes of others are very disabling. However I am aware that there are others who see this differently. There are also identity considerations around disability. Some people use ‘Disabled person’ (note the capital D) and others use ‘person with disability’. These are often used interchangeably,

I feel that positive autistic identity is part of autistic pride and as such is a political thing. Autistic people are oppressed and anything which gives us a sense of pride is something of an act of rebellion. It took me many years to get to the place of pride I currently occupy. I was in denial about my autism for seven years and even when I did accept my autism I was pretty doubtful and ashamed about the whole thing. It took me writing my autobiography in 2005 and its subsequent publication to embrace my autistic identity and feel a sense of pride. I am now very much out loud and proud. I see autism as a key part of what makes me who I am and I like and value my autistic identity.

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About identity

I have been thinking a lot about identity lately. I come with a bunch of elements of identity – non-binary, autistic, schizophrenic, advocate, writer, person with a difficult past, the list goes on. Identity is all about what make us us but it can become quite loaded and political. We live in very political times, although I suppose that could be said of all of human history. Our political and social views form part of our identity. I shared a post the other day saying that ‘in this house Black lives matter, love is love, we believe in science, no human being is illegal…’ and a few other descriptors of inclusivity. I was very aware that posting this would identify me as someone who espouses a left-leaning, social democratic sort of view. Surprisingly I had no backlash against the post (I always expect to get trolled when I post something like that). Potential trolls aside, the post asserted a part of my identity and drove me to write this post.

Much of my identity is focussed on the divergent groups that I belong to. Many others who belong to ‘diversity’ type groups find that these inform their identity. Being in a divergent group often leads to shared experiences with others from that group, leading to a shared sense of identity. A key thing to know about this is that however a person identifies is correct. Gender identity is a case in point.  I am non-binary and that is not up for discussion, even when I wear a dress!  My identity is my own. How a person identifies in terms of gender is  correct and not up for disagreement or debate. Even if you think someone looks ‘male’ or ‘female’ take your cue from how they identify a rather than making assumptions.

The same goes for autism and identity. Many autistic people – including me – identify as autistic rather than as a ‘person with autism’. I cannot count how many times well-meaning people have instructed me as to how to identity and tell me I should say ‘person with autism.’ This is absolutely infuriating! I know who I am and someone spouting something they learned doing whatever disability training they have is not going to change the fact that I am a proud Autistic person! This is true of people with other disabilities too. It is never OK to tell someone how to identify themselves. Note to well meaning people, autism is not an add-on that I can choose whether to be ‘with’ or not be ‘with’. 

My identity has a history to it. When I was a young twenty-something I found myself in some pretty dire circumstances. I was a prisoner and in order to survive I learned to act like a prisoner. I masked and camouflaged like you wouldn’t believe. Then when I was 26 I found myself wanting to rejoin non-criminal society. I wanted to get my personality back but I had masked for so long I couldn’t remember who I was. I figured I should decide what my character should be. I observed qualities I liked in others and worked out who I wanted to be. I think part of my original character was still in existence, buried under a bunch of nasty stuff but a lot of the Yenn I know now came about through that conscious effort to make a character and identity for myself. I largely picked my identity which is a hard thing to do but quite a liberating thing to do as well. Since then I have added my autistic identity, my non-binary identity, my identity as an advocate and author and a range of other elements to what makes me who I am. 

Identity is a key part of what makes every one of us who we are. It is important to respect people and refer to them in the way they identify. 

How a person chooses to identify is their identity. It is not up for discussion or disagreement. Simple as that.-2

I got it wrong – making mistakes and perfectionism

Last weekend I posted a meme on strategies for managing anxiety. It was premised on the idea of banishing anxiety-provoking thoughts and not letting them in the metaphorical ‘door.’ It is a strategy I use to good effect and I wanted to share it with my social media family. Sadly it backfired and I managed to upset quite a few people including a friend who is now an ex-friend (not just due to the post but it was the catalyst for ending the friendship). 

I was extremely upset that something I had intended to be helpful had in fact been damaging. I was accused of being dismissive and stigmatising of people with anxiety issues – fairly extreme things to level at someone who has anxiety issues myself and was trying to be helpful. It showed how social media can backfire but it also showed me how much of a perfectionist I am. I was utterly horrified that I had made a mistake and that I had upset people and that something  I had produced had been seen as stigmatising. While I talk about making mistakes as an essential element of building resilience and ‘failing successfully’ it would appear that I didn’t want to make mistakes myself! 

When I saw the comments on my post I was spending the day with a friend who is an occupational therapist and works at one of the psychiatric hospitals I have been a patient at in recent months. She said I was going through a shame spiral and the I was coming from the position of an external locus of control. While I didn’t want to admit it at the time she was right. And for those not in the know, an external locus of control is where you feel like things are happening to you and you have no agency or ability to control or address them. Thankfully I moved past this but there were repercussions. I didn’t want to schedule any more memes in case I upset anyone. I created a few and quickly deleted them. I lost all objectivity when it came to my advocacy work. Someone booked me for a talk and then said I needed to add references to my slides. It threw me into a self doubt tailspin – My talks were not academically rigorous and had no value (according to my doubt-filled brain). I am still in this space a bit. It feeds into impostor syndrome and perfectionism. I don’t want to make another mistake.

The funny thing is that the meme which caused the issue had mostly positive responses. There were three negative comments and two of them I addressed through discussion with the people who raised the objections. The week before the offending meme I had two other memes that went absolutely viral and reached hundreds of thousands of people. Did I focus on that? No, I focussed on the one comment which led to the end of a friendship. Perspective is a good thing in this space.

As autistic people – and I suspect others too – we tend to be perfectionists and fear failure and mistakes almost more than anything. We can fixate on things which went wrong twenty years ago – I know I do. It is hard not to focus on the errors but it is possible to do so. It is also possible to learn from the errors – both the actual error itself and the fact that we made an error – and what that may mean. Everyone gets things wrong and it is OK to get things wrong as long as the consequences aren’t death or injury. If you are a surgeon or an airline pilot you need to not make mistakes but for the rest of us it is actually OK to get something wrong on occasion. I learned from my meme issue that it is worth seeing if there are interpretations of my memes which are not that which I intended before I post them. I wish I hadn’t made a mistake but I did and the world didn’t end and I learned something.   

I will never be perfect. That is absolutely OK. I just strive to be the best me I can be and that is enough.

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

One thing which autistic advocates often experience is certain parents 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 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 see if parts of what I 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 best.

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 once. Jac 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 said both were attributes of autistic people. They then 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 fluctuated over time. I know that I have some experiences of being non-verbal, 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 due to 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 stigma around autism. This baffles me because there are so many effective Augmented and Alternate Communication (AAC) devices which given 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 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. I wonder if they get told that ‘you don’t speak on behalf of my child.’

Mild autism'... Ugh! Who gets to decide if my autism is ‘mild’ and what does ‘mild autism’ even mean? Just ditch the functioning labels. They do more harm than good!-2