I went through school in the 1970s and 80s with no autism diagnosis as one didn’t really exist at the time. Autism was considered extremely rare. Even when I was diagnosed in 1994 I was told that only 1 in 25,000 women were autistic. My experience of being autistic has been punctuated by changes in how the people I speak to about autism respond. When I was first diagnosed people said ‘What’s that?’ A few years later people would say ‘oh I’ve heard of that…’. This was followed by people saying ‘my [insert distant relative] has that….’ And now people tend to have a much greater understanding of what autism actually is even where they are not autistic or closely connected to an autistic person themselves. It has taken a very long time though and there are still unhelpful attitudes and a lack of understanding. If the person lacking understanding is a health or mental health clinician it can make life very hard for autistic people and – among other things – result in misdiagnosis. 

Diagnosis

My journey to a diagnosis – and to accepting that diagnosis – was something  of a saga and not very straightforward. I spent my entire childhood and teen years being considered ‘different’ but nobody knew what to call my ‘difference.’ My mum had a colleague with an autistic son who was diagnosed in 1994. They got talking and my mum thought autism described my experience too. At the time I was in prison and quite adept at masking. In fact I was so good at masking that I believed that I actually was the character that I was working so hard to present to the world  which at the time was a matter of survival. I was a very convincing actor and believed this myself.  At the time I was diagnosed I thought autism was a diagnosis of ‘nerd’ which didn’t describe my version of me at the time! 

At the time I received my diagnosis I was 20. I strongly reacted to the autism diagnosis, refusing to accept it, even though doing so would have helped me to navigate the world a lot better than I was at the time. It was – to my mind – my parents finding excuses for my poor behaviour. It was also very raw and personal and forced me to view myself in ways I did not want to. I couldn’t even watch a TV show on autism, and reading about Temple Grandin in ‘An Anthropologist on Mars’ was extremely difficult for me.  It took me seven years to accept my autism and even then I thought is was a shameful secret for some time after accepting it. I was happier to tell people I had been in jail than that I was autistic. 

Misdiagnosis

Despite already having an autism diagnosis from a competent clinician, I did end up getting misdiagnosed with borderline personality disorder in the mid-1990s. The psychiatrist who misdiagnosed me knew very little about autism and was quite misogynistic. Most of the women in the hospital he managed had a borderline diagnosis. I think he viewed it as histrionic woman syndrome! My parents told him I had two diagnoses – autism and schizophrenia and he ignored them and misdiagnosed me anyway. 

The misdiagnosis had immediate and lasting consequences – mostly negative ones. When I was in hospital with the doctor who misdiagnosed me I was quite unwell with psychosis. I was also overloaded, very stressed and having violent meltdowns. However he did not see that and thought my behaviour was the result of me acting out intentionally. This eventually resulted in me returning to prison, going there on and off for a further three years. I became institutionalised. 

My misdiagnosis followed me to jail and I suffered a lot. A diagnosis is an indication of what treatments and interventions clinicians can offer to address a health condition. Getting the ‘label’ wrong usually means getting the treatment wrong. This can derail a person’s life.

Overcoming misdiagnosis 

I finally accepted my autism diagnosis when I was 27. Sadly the psychiatrist who had misdiagnosed me in 1996 was the chief doctor in the publicly funded mental health clinic I attended at the time! I told my clinical manager I had finally accepted that I was autistic. He promptly took this information to the offending doctor who denied it. I figured I needed to make a decision to support my mental health and ended up seeing a lovely private system psychiatrist who said that if the psychologist who diagnosed me as autistic had diagnosed me then I was 100 peer cent autistic as that psychologist knew what she was talking about! 

I think some clinicians have no idea how much power they wield in this space. I remain terrified to go to psychiatric hospital because I – possibly rightfully – worry that my medication or diagnoses may be invalidated and changed to something which harms me. That a 47 year old, highly confident advocate and author, someone who manages their life well and has a large following can be terrified to access services because of mistreatment by a psychiatrist thirty years ago is very telling. 

An appropriate diagnosis is a gift and can enable positive change and being able to access supports and interventions that make life better. Conversely a misdiagnosis can damage people and deny them access to supports that they need. 

And just a brief point on self-diagnosis of autism… I am of the opinion that many people need to self-diagnose due to the barriers faced by many autistic people in accessing a formal diagnosis. A lot of autistic women and girls for example cannot access a diagnosis due to clinicians’ lack of understanding of the more internalised autism presentation that women and girls – and some others – might have or simply the cost off the assessment putting a formal diagnosis out of someone’s reach. Accessing a diagnosis can be fraught and impacted by social and political issues so in my book (pun intended) self-diagnosed is valid. 

Content warning: bigotry, violence, suicide and abuse 

I am an autistic, ADHD, non-binary, asexual person with schizophrenia who has a public profile. Sadly this means I am often on the receiving end of trolling, bigotry and hatred. And I am far from alone. There are people in the world – as I have discovered a LOT of people – who would hate me for the simple fact that I exist as a transgender and non-binary person. When I came out as non-binary in 2018 I had some people who I had been friends with for decades excise me from their lives. A transgender autistic friend told me I would find out who my friends were – and weren’t – when I came out and they were absolutely correct. Bigotry around gender diversity is widespread and it can be very dangerous. People have taken their own lives due to bigotry and bullying and people have also been murdered simply due to their gender. 

When I came out as non-binary it was an absolute liberation. I wanted to dance down the street. And six months later when I took on my true name of Yenn it was similarly exciting  and affirming. I tend to be a very optimistic person. At the tie I came out I never thought about people hating me for being non-binary until I published a YouTube video diary about my experience of coming out. The first diary had a bunch of lovely responses but the second one attracted, well, I will call them rent a troll. All these people – and there were a lot of them – attacked me and said my gender was a mental illness and a sin. I quickly turned off the comments but it was really hateful and upsetting. Why did my gender have anything to do with these people? My gender is really only relevant to me. It is nobody else’s business. And why would they hate me? I had done nothing to them.

Then there are high profile bigots, like the author of a series of popular children’s books who I won’t name – because they have more money for lawyers than In do! This person came out publicly with a bunch of transphobic bigotry, spewing forth hatred and nastiness. They were totally unashamed. I discovered that there is actually a ‘movement’ of transphobic bigots and they are very vocal and put our lives at risk with all their hatred. 

I have also experienced bigotry around my mental illness and my autism. A lot of people in the mental health clinical space struggle with me because I am a person with schizophrenia who will stand up to mistreatment – well unless I am rally unwell and then I am just scared and vulnerable! I will advocate for myself around mental health but in the past I couldn’t, resulting in a lot of mistreatment in hospitals and residential health care settings. I had a nurse in hospital once tell me I got assaulted by another patient because I was ‘annoying’ – a nice bit of blame the victim! One time when I was in hospital for psychosis I broke may arm falling off a bed. The radiographer wanted nothing to do with me because they thought I must be violent. This was very hurtful – and not true! And in my early twenties I had the hospital admission form Hell where the chief psychiatrist misdiagnosed me, dismissed my autism diagnosis and basically made my life utterly miserable. I went from his hospital to jail and he was instrumental in that. These experiences were all from people who were supposed to be caring for me. The stigma around schizophrenia in wider society is even more unpleasant. If you look at representation of schizophrenia in popular culture almost every depiction is around violence or people being unable to do much at all. If you take the adage ‘if you can’t see it you can’t be it’ then people with schizophrenia are definitely in trouble. These things are the main reason I am very public about my mental health issues. I hope that in a world without many schizophrenic role models that I make some difference to people’s perceptions of the illness.

Finally I want to talk about bigotry around autism. These days most of the issues I see relate to bullying, schools, clinicians who don’t understand autism and stereotypes in popular culture. People know a lot more about autism than they did in the past – take it from me. I was diagnosed in 1994 and nobody knew what autism was! So armed with a little bit of knowledge people go forth and make assumptions and follow stereotypes a lot of the time! 

There is research demonstrating that over 80 percent of autistic school kids experience bullying. I experienced bullying every day of my high school career and teachers were not helpful. They would tell me things like ‘stay away from them’ – it was a school yard, not a country! The bullies were pretty good at finding me! Teachers would also say baffling things like ’boys will be boys’. I had no idea what this meant but I knew it wasn’t really helping me! The trauma of school set me up for a very difficult early adulthood. Most of the bullying I experienced was around my being a ‘nerd’ and my apparently ambiguous gender. To say it did bad things to my mental health and self-esteem and identity is an understatement! Sadly these attitudes form teachers still exist.

Bigotry is never OK. That seems obvious but there are sill a lot of it going on. I have just released a book, coauthored with the awesome Sam Rose, for transgender autistic teens. I know without any doubt that at least one latter day bigot is going to give Sam and I a hard time about daring to talk abut gender diversity and kids. To them I say bring it on! The book is needed and will help lots of autistic kids so if some hater or troll doesn’t like it well that is their problem

Some strategies I sue to deal with bigotry ad trolling are:

• If it is on social media – and let’s face it, it usually is – respond once and then block the person 
• Get angry. I know many people think we aren’t meant to get angry but the correct response to being attacked by a bigot or bully is to be angry rather than turn it in on yourself
• Remind myself that I only have to deal with the bigot for a short while. They are inside their hateful mind al the time, which is sad.
• Access support and help if you need to. Bigotry and bullying can be very stressful and upsetting
• Remind yourself that the bigot is the one with the problem, not you.
• Engage with your peer group, whoever that may be (Neurodivergent, LGBTQIA+, People of Colour, people with psychosocial disability etc)

CW: mental health

Today is Neurodiversity Pride Day. Big yay to that! But I must admit that pride doesn’t really sum up how I feel today. Let me explain…. Yesterday I discovered that a hacker had stolen $8600 from my credit card. Anyway would struggle with that but for me it was especially traumatic. I have been very anxious about online security for the past year, By anxious I mean the kind of anxiety that results in psychosis and suicide attempts (I speak form unfortunate experience on both of those things). When I realised I had been hacked yesterday I was in a world of stress. I am going to need to contact the bank later today to find out what the person at the bank that I spoke to yesterday actually said because I was so stressed I missed most of it!

So not feeling at all proud – mostly feeling very stressed and depressed and uncertain about anything I used to take for granted in terms of security. But it is Neurodiversity Pride Day and I am not only multiply neurodivergent I am also an advocate. So I am proud within all of that fear and misery.

So what does Neurodiversity Pride Day even mean? Why should I be proud? What does pride do for me as a neurodivergent person who is managing a lot of stress at present? 

Well to my mind pride is all about owning your identity and celebrating achievements – and often celebrating our survival in a world that doesn’t always value or support us. I should feel proud to be a neurodivergent survivor, someone who has struggled in life due to ableism and the medical model of disability an discrimination and bullying based on my neurotype. I should celebrate my neurodivergent culture. I should celebrate the fact that there are now so many advocates out there with their message of encouragement, empowerment and activism. 

I started doing this in 2005 (cue groan from audience who have heard the ‘Yennski has been an advocate for almost twenty years’ statement many times before….) Anyway when I started there were just a few advocates active in the neurodiversity space, most of them being Autistic people. There were a handful of books written by Autistic authors – including my first book. There was a neurodiversity movement but it was in its early stages. I remember that parents of autistic kids often had some really unhelpful views. Advocacy was very hard and people talking about the strengths of Autistic people was rare. People now call me – and presumably my colleagues who were working alongside me in the early 2000s and those active in the 1990s –  a trailblazer in the advocacy community. Flash forward to now and the neurodiversity approach is so frequently taken on board by people who in the past would have been giving me a hard time and telling me that ‘you don’t speak on behalf of my child’ or ‘my child is severely autistic and you are mild’ etc. 

On Pride Day I want to celebrate all my fellow advocates – whether they have been active for 20 years or two months, whether they are 70 or 17. They are so many of us now with all our different perspectives and it is a good thing.

Pride is not just about celebrating achievements though. It is about acknowledging the work and contribution of neurodivergent people and the challenges that we have faced and overcome. Pride is about identity – about owning who you are. Pride is about knowing that you have limitations and that life can be challenging but engaging with it anyway. You don’t have to be happy to be proud and often for neurodivergent folks happiness can be a difficult thing to attain.

I am proud to be Autistic and an ADHDer. I am even proud to have a schizophrenia diagnosis –  although there isn’t a day for that. (Maybe I should create one…) Pride is such an important thing for members of groups that face disadvantage in society. So today I am sad and stressed but also very proud. I have survived in a would which hasn’t always been very supportive or inclusive and I am still here, still advocating, still fighting for a better world.

I recognise my fellow neurodivergent people on this day,. I see so many people advocating for a better world for neurodivergent folks. We have gone from a handful of people to a huge movement which has rewritten the script about neurodiversity and inclusion. Big yay to that. And happy pride day!  

Something I have been pulled up on more often than I would like to be is something called toxic positivity. If you haven’t come across this before, my good friends at Google tell me it is “the excessive and ineffective overgeneralisation of a happy, optimistic state across all situations. The process of toxic positivity results in the denial, minimisation, and invalidation of the authentic human emotional experience.” 

I certainly don’t want to do this but apparently I do on occasion. In the context of where I slip up it is often things like saying ‘This strategy fixed my depression so you too can stop being depressed’. I can be overly positive and think that if I have overcome something then others should be able to do so as well. I feel like there can be a fine line between being supportive and useful and engaging in toxic positivity. Also where a person is mentally will often determine whether a statement is seen as helpful and as being toxically positive

When I was in my twenties there was no positivity in my life. I was a prisoner and my mental health was very poor. I had no sense of hope and no sense of a future for myself. One of the nurses employed at the prison medical centre thought she could fix my depression by setting me the task of writing out my ultimate goal and how I would achieve it. This might have worked if I was a bit depressed but I was in the depths of Hell so it just tressed me out and made me feel worse. My ultimate goal was to be dead but I figured the nurse wouldn’t approve of that! The document never got written. This nurse also used to tell me she was self destructive as a young person and had somehow addressed this but for me it was totally meaningless and stressful. I suspect there was a touch of toxic positivity and invalidation going on there.

As an advocate I need to be careful and make sure when I am providing tips and strategies that I don’t tell people that if they do some strategy or other that it will fix their mental health issues or that they just need some optimism. One of the biggest issues for me is around unsolicited advice. My favourite comedian, Hannah Gadsby, once said that she feasts on people trolling her (‘nom nom nom..’) I am the same with giving advice! I could give advice at an Olympic level! As I am a many times published author and people think I am an expert then lots of people let it go but they should’t. I do not need to be giving everyone unsolicited advice and I know how harmful it can be in the mental health space. If a person asks for advice on mental health then I should probably dispense some but if a person doesn’t ask me I need to be careful about dishing out the advice!

Another issue for me is that I am usually a very positive and resilient person. I am unusual in a lot of ways. I am a person with schizophrenia who works full time in a middle management job – I even supervise staff! Outside of my full time job I do basically an additional full time job in advocacy and writing. I manage my schizophrenia very well despite it being pretty brutal. It is treatment resistant which means that even though I take some pretty hard core medications I can still get psychotic. And if I do get psychotic I can write off the next two or three years of my life. I have had my illness since 1995 and it hasn’t got any easier. However one thing I do have is insight and self awareness. This enables me to know when to ask for help. I am also very positive and optimistic. It is rare for me to lose hope. I approach life with hope and engagement. For many others with mental illnesses though that optimism is not present and many people lack self awareness and insight. This means that me weighing in with others and trying to apply some optimism or insight may be interpreted as toxic positivity. And that is actually correct because with mental health your perspective is your truth. So Yennski jumping in and trying to help might actually not be helpful at all.

It is essential to remember when talking about mental health that our own experience is subjective and other people have a different experience. I think words like ‘should’ and ‘must’ are very unhelpful in this context. I can struggle with negative people or those who are always taking someone or other to court because they feel aggrieved. However I know that for those people my approach of optimism and forgiveness might be equally baffling to them, and that is fine. 

I need to keep the issue of toxic positivity in the front of my mind while I am doing what I do as it is probably as unhelpful as negativity and deficits thinking. So please let me know if I ever  do it!!  

This is a historic blog post which I want to share, mostly because I really like it and it is an example of the strengths approach to autism. We are almost on Neurodiversity Pride Day and I thought this was a good pride piece…

When I was writing The Guide to Good Mental Health on the Autism Spectrum, I had to dig out the diagnostic criteria for Autism in the DSM- 5. It made me sad, so I decided to whip out my advocate brush and give it a neurodiversity-based touch-up. I hope you like it. I’m not sure how a doctor would use it but I prefer it to the original version. The way it works is that I have listed each category of the DSM -5 diagnostic criteria for Autism in italics and underneath have redrafted it. Enjoy.

A. Persistent deficits in social communication and interaction across multiple contexts, as manifested by all of the following (currently or by history):

1. Deficits in social-emotional reciprocity

2. Deficits in nonverbal communication behaviours used for social interaction

3. Deficits in developing, maintaining, and understanding relationships

Specify current severity based on social communication impairments and restricted, repetitive patterns of behaviour.

A (Ausome) Different ways of communicating and relating to others. This is part of the person’s basic make-up. It is not a deficit or a disability, it is just a different way of communicating. Some ways in which this might be demonstrated include:

1. Different ways of relating and experiencing emotions. Some people may have hyper-empathy.  They may make excellent psychologists or counsellors.
2. Interacting in different ways. Being honest and straightforward and not generally using things like manipulation or sarcasm.
3. Approaching relationships differently to non-Autistic people. People may be very loyal and/or have strong bonds with an individual or small group of friends. Autistic people often have a great connection with non-human ‘people’ too and a connection to the natural world.

B. Restrictive, repetitive patterns of behaviour, interests or activities, as manifested by at least two of the following, currently or by history:

1. Stereotyped or repetitive motor movements, use of objects, or speech

2. Insistence on sameness, inflexible adherence to routines, or ritualised patterns of verbal

or nonverbal behaviour

3. Highly restricted, fixated interests that are abnormal in intensity or focus

4. Hyper- or hyporeactivity to sensory input or unusual interest in sensory aspects of the

environment

B (Beautiful) May be experts in a particular area, have a strong focus, passion and determination. May have very strong interests on a topic and activities related to these interests may result in a great sense of joy and satisfaction.

1. Innovative and imaginative use of objects. Creativity.
2. The ability to follow a schedule. Seeing patterns in things – very useful if the person wants to work for the police as an investigator or be a mathematician or climate scientist.
3. Passionate engagement in a particular interest. As life progresses, Autists can develop a huge general knowledge based on all the topics they may have been interested in. Very useful if the person wants to be a university professor. Also, the interests can form an excellent self-soothing tool should the person be depressed or anxious.
4. Exceptional, accurate and perceptive sensory skills. This is highly useful in areas like catering and viticulture.

C. Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life). 

C (Curious and Clever)

Young children may be quirky, smart and individual. As they grow older, the world can dampen their amazing spirit but do not be disheartened as Autistic people are often wonderfully resilient and resourceful.

.
D. Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.

D (Diverse) The weight of a world which often does not value or respect Autistic people can mean that they struggle to navigate life. This is not due to their inherent deficiencies, rather it is mostly a result of societies  focus on some arbitrary ‘norm’.  With the right support, understanding and self-confidence, Autistic people can rise above this and be their best ‘them’. This is an area for further work.

E. These disturbances are not better explained by intellectual disability (intellectual developmental disorder) or global developmental delay.

E (Exceptional) Autistic people are Autistic people. They are amazing as is and defy this sort of diagnostic negativity through their brilliance.

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 -and played – 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 sort of 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 even start watching some movies and TV shows about autism as I am (often rightfully) 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 my late mentor 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 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. A couple of years ago I was featured on ABC news program The Drum as part of a segment on autistic author Kay Kerr’s book ‘Please don’t hug me’. I was brought in an expert on autism. I was very excited to be involved as often an allistic expert would have been brought in to offer their thoughts. I have since been featured as a n ‘expert’ in a range of areas and frequently do consultancy work with universities and other organisations. 

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. Representation is also important for younger autistic people. If they see fellow autistics in positions or influence, see autistic actors playing autistic characters and see positive representations of autism then this will make it a lot easier for them to be proud of who they are.

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 Please Stand By

Film: I am Khan 

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

I am sharing this post from a few years ago for National Reconciliation Week as I felt it needed another outing… 

It is currently 10:11on a Wednesday night. I have just got home from work. No, my boss is not a sadist. I was very happy to work long hours today for the purpose of being the scribe for the Aboriginal and Torres Strait Islander staff conference and then attending a conference dinner. I was the scribe for a similar event last year, but not through design, for the person earmarked for the task was off sick and at the last minute my Manager asked me to do it. Being perfectionist Yenn I did a stellar job of the notes and earned the praise of our Indigenous leader – a very senior manager based in Western Australia.  So this year, based on my prior performance, I was the first choice for the job. And I was absolutely delighted to do it.

Let me flash back 30 years to my arrival in Australia as an intense and thoughtful 11 year old English person. As my mum is Australian I had heard some stories about Australia and its first inhabitants were always in there somewhere. I remember a book of photos of tousle-haired children in the desert with names I failed miserably to pronounce. But before I arrived here I had no real knowledge of my new country’s Indigenous peoples and their 60,000 or so year history in this beautiful and troubled land of ours.

We moved to a country area shortly after arriving in Australia, a place called Wodonga in north-east Victoria (for non-Australians among the readers, that is in the bottom right-hand corner of the map of Australia). One of my first surprises was the hatred that so many of the non-Indigenous kids had for Aboriginal people. And it wasn’t just the kids – one friend told me his dad thought that ‘the best Aboriginal person is a dead one’ (for the record, my friend didn’t share the sentiment). My young mind found it hard to fathom such hatred of people who it was fast becoming apparent to me had actually been on the receiving end of a lot of flawed policy and racist treatment over the years.

In 1988 there was a bicentenary celebration for the 200 years of British colonisation of Australia. Obviously this was somewhat controversial in the light of the fact that our country had actually been discovered some 60,000 years before Captain Cook sailed over the horizon and confidently planted his flag in the ground. However, the only bit of challenge to the celebration I came across at the time was a book of political cartoons in the school library and when I stopped to ask teachers what the issues were I was roundly fobbed off by all of them. History, then, was evidently somewhat fraught. And I will say that now I know there was a lot of protest and  dissent around the ‘celebration’, I just didn’t know at the time. It certainly wasn’t raised by any of the teachers at my school.

Over the ensuing years I met a number of Aboriginal and Torres Strait Islander friends and colleagues (and one partner). What struck me was that many adults were as ignorant and prejudiced as my 11 year old schoolmates had been. I wondered why people weren’t as proud of our Aboriginal and Torres Strait Islander cultures and heritage as they were our Italian food influences or even the Afghan cameleers from the 19th Century? I recently discovered from watching a television documentary that 6 out of 10 non-Indigenous Australians apparently had never had contact with an Aboriginal person. Think about that. 60 per cent of people. That is such a whopping figure I can hardly imagine it. And it really isn’t like Indigenous Australians are hiding somewhere. They are everywhere.

I had friends and one of my managers attending the conference as participants so I had a great time catching up in between taking copious notes. I attended the dinner – hence the late hour of this post – and there was an amazing speaker who I think might just have changed my life a little. He was Jeremy Donovan, a Murri man from Far North Queensland. Jeremy Donovan has been voted the best speaker in Australia and is the CEO of Generation One – an organisation which strongly promotes employment of Indigenous people and works with employers to do this. Jeremy told an immensely engaging story about his life, but it was much more than simply that. He and a strong message of self-empowerment and setting goals and dreams. That was not what appealed so much to me though. I was struck by the fact that Jeremy’s previous life story so closely mirrored my own. Almost every element of my early life was in his story. At first I was a little taken aback. I felt a little triggered and raw at some things because they were so close to my own experience. I wondered if I should talk to him afterwards?

Sitting in that audience I suddenly saw some parallels between my own life as an Autistic person struggling with identity for most of their early life and this Aboriginal man who seemed to have been through similar things. Another thing that hit me was how many Indigenous people I have seen get up on stage to speak and start their presentation by saying ‘I am a proud Aboriginal person’ – and actually they usually define themselves by the Country they are from (e.g. “I am a proud Ngunnawal women.’) Autistic speakers don’t do this generally. I posted a meme with a quote of me saying ‘I am a proud Autistic person. I love me as me’ recently and hundreds of people liked and shared it on social media. It got a few comments that people wished they could say they were proud Autistics too. I wonder if Autistic people can learn how to positively identify from those Aboriginal and Torres Strait Islander speakers. Just a thought. And I apologise for the roughness of this writing, it is after my bedtime by I wanted to put these thoughts down. Thanks . Oh, and I did talk to Jeremy afterwards and said a very heartfelt  and enthusiastic ‘thanks’.

I hope you have found this post helpful. I think reconciliation is so extremely important and the onus, to my mind, needs to be on non-Indigenous Australians to drive this work. Much or most of the poor behaviour in this space, sadly, is down to people from my background and our ancestors. The least we can do is educate ourselves and respect and support our Aboriginal and Torres Strait Islander peers, friends a colleagues. 

My own diagnosis

I did not accept my autism diagnosis for many years and even when I did it was with a fair amount of reluctance. For a long time I saw my autism as something of a shameful secret. I was happier to tell people I had been in jail than that I was autistic! Eventually I came to terms with it – writing my autobiography certainly helped with that and it being published even more so! 

After I accepted and embraced my autism, I thought that getting a diagnosis as a child would be far preferable than my experience of waiting until I was 20 and had managed to ruin my life prior to finding out that very important piece of information about myself. To my mind children getting a diagnosis must always be a good thing. The younger the better…or so I thought.

Then I met someone who I will call ‘Adam.’ Adam was autistic and had been diagnosed when he was six. For most of his life he had an autism diagnosis  but, far from the amazing opportunities the knowledge of his autism had surely bestowed upon him, he was in fact miserable, dependent and had a very low opinion of himself and his capability. ‘Adam’ had been told what he couldn’t do for his whole life. He had never been exposed to significant challenges with the adults in his life apparently not deeming him capable of dealing with very much. When I told ‘Adam’ that I was autistic and an author and that I worked for the Australian Public Service he told me I was lying and that my life was not possible for an autistic person. At that point I realised that an early diagnosis did not necessarily lead to a better life for autistic people! I started talking about autism and resilience and writing books to empower autistic young people to engage with life and tap into their talents and skills. 

Pros to diagnosis

There are a number of pros about having the autism diagnosis. One of them is the chance to access your identity. Being autistic is unlike a lot of other health conditions due to the very clear sense of identity that being autistic provides to so many autistic people. This isn’t to say that autism is always going to be a key part of a person’s identity but it is very common for people to seek out their autistic peer group following a diagnosis. Being part of the autistic peer group and networks can also give people access to knowing themselves better and to having a greater understanding of who they are. People who have spent their lifetime feeling on the outer and that they don’t fit in coming across others who share so much with them can be an absolute liberation.

A diagnosis can also allow access to services and supports for autistic people. These can be really helpful and support people to manage their lives well. Having a diagnosis can mean that you can be an advocate for yourself an others and it can enable you to know where you ‘fit.’  

Cons of diagnosis 

There are some challenges and disadvantages around having an autism diagnosis. I will ask you to pay attention to these and see if you can spot a similarity between them…One of the cons is being subject to stigma and ableism. Of course undiagnosed autistic people can be subject to stigma and ableism too but the actual label can draw judgement from those in society who are prone to judgement. 

Another con is the low expectations that many people have around autism. This is true for kids and adults alike. On being told someone is autistic a lot of people instantly jump into deficits mode and assume that the person will be unable to do anything much at all.

Another challenge for autistic people with a diagnosis is facing discrimination in employment. A diagnosis can result in discrimination at work where an undiagnosed person might just be perceived as ‘odd’ without the application of any stereotypes around autism.

Another issue with a diagnosis is assumptions, micro-aggressions and stereotypes. I think most disability and other diversity groups come with these and they do not help anyone.

Did you spot the common theme in all those cons? The theme is that none of the cons I have mentioned here relate to autism itself or the behaviour or experience of autistic people. They relate to a world which doesn’t understand, respect or include autistic people. These cons are all related to how people interact with and treat autistic people. They are related to stigma, ableism and assumptions rather than anything that autistic people – or autism itself – might be doing. Society has created that stigma ad disadvantage. Those cons would not exist in a world that respected  accepted and understood autistic experience. 

Conclusion

I will say that I like my autism diagnosis. I really like my autism diagnosis. I am glad that I have it and it has opened a lot of opportunities and understanding for me. Autism is a core part of my character and my identity. For me it is not a label but an identity and central to my very being.

I recently had an unpleasant experience where a person gave me a hard time for using the accessible seat on the bus. I need to have two seats to myself due to sensory and proximity issues related to my autism. Apparently – according to this person – I didn’t ‘look disabled enough’ to use this seat. It was a nasty bit of ableism and prompted me to write this post about things that ableists say 

So here goes…

“You could pass for normal”

Lots of issues here. Most Disabled people I know would find this statement extremely offensive. It basically states that there is a pinnacle of existence called ‘normal’ and those of us who don’t fit within it are broken and deficient. Disability Sio seen as a deviation form the ‘norm’ and the further from the norm you get the worse it is. This is not helpful or true. We have value just as we are. 

“How long have you been wheelchair bound?

Lots of issues here too. A wheelchair means mobility. It is a positive and useful thing to have. Imagine not having one. Also ‘wheelchair bound’ ties in with some very deficits-based attitudes around disability.

“Don’t say Autistic, say person with autism”

The number of times well-meaning people have corrected my identity-first language is very large. Despite what those people think, ‘I am autistic’ is perfectly valid and many of us find it empowering. The same goes for ‘Disabled’ which many people find empowering. When it comes to identity, the way a person identifies is their identity, simple as that. People should not question others’ identity.

You don’t look autistic“ 

Autistic doesn’t ‘look’ like anything, Autistic people all look different. You cannot tell a person is autistic through looking at them. We are not ‘one size fits all.’

Assuming all Disabled people are asexual

This is widespread and is not OK. It infantilises us and makes us perennial children, which we are not. Many Disabled people have a healthy sex life and want a relationship. I tend to think that being in a sexual relationship is almost political for Disabled people but it really shouldn’t be. It should be a given that Disabled people can be in a relationship and / or have sex if they want to.

Assuming all Disabled people are cis gender 

Once again the idea that Disabled people are all cis gender goes to infantilisation and paternalism. We are apparently not able to consider our gender identity and know our own gender identity but in fact many Disabled people – and particularly neurodivergent people – are trans and gender diverse. 

“We are all on the spectrum somewhere”

An autism-specific one and a highly problematic one. People often say this with good intentions but it is really unhelpful. It is dismissive of autistic reality and experience. It is invalidating and if it were true then there would be no autism spectrum because it would just be called being human.

Shaming someone who has a disability car park sticker but is able to walk

Many people have an accessible car park sticker but do not use a wheelchair or other mobility aid. These people may have invisible disabilities but ones which are very real and mean they cannot walk across a big car park. They may be shamed by others, once again often well-meaning people. This shaming is never OK. If a person doesn’t ahem the sticker definitely call them out but if they do then they are able to use that parking space so don’t shame them.  

“He must be lost” (aimed at wheelchair user in psychiatric ward)

Many people think that a person can only have one disability. I was recently in a psychiatric ward in a large university hospital. One of my fellow patients was a wheelchair user. I heard someone say about him ‘oh he must be lost’, presumably thinking a person only has a quota of one disability each! 

“She’s so articulate” (after speaking with Disabled person who is still standing right next to them) 

This kind of situation is infuriating. Once again it goes to infantilising and patronising Disabled people. It also relates to having a very low opinion of that Disabled person (who happens in this example to be me) and their right to be treated with respect. 

“You are such an inspiration“

I think I saved the worst till last. ‘Inspiration porn’, where disabled people are viewed as being inspirational simply through doing everyday things, is rife. I had someone once tell me i was an inspiration because I take the bus to work! Inspiration porn can really irritate and upset Disabled people. I’m going to let the late, great Stella Young address that one in her excellent TED talk https://www.ted.com/talks/stella_young_i_m_not_your_inspiration_thank_you_very_much?language=en 

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

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

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

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

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

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

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

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