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.’

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

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

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

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

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

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

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

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

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

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

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

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

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