‘Do what I say not what I do’ – addressing perfectionism

There is a Simpsons episode where Homer is unsuccessful in a job interview. The successful candidate goes in before Homer and is asked the question ‘What are your weaknesses?’ He responds with ‘Well, I’m a workaholic and a perfectionist…’ Presumably the meaning here being that the candidate’s weaknesses are actually big strengths. I actually am a workaholic and perfectionist and can report that sometimes those qualities are a good thing but often they aren’t.

I have been talking and writing about the dangers of perfectionism for some time. Perfectionism is like a mixture of anxiety about change, anxiety about performance and fear of failure. Perfectionism can stop people form doing any work at all for fear it won’t be good enough. Some people won’t take on  new challenges because they might do it ‘wrong’ and some will not try new skills or activities – even leisure ones – for fear of not being proficient. I struggle playing games with family because there is a perception I am supposed to be very good at word games and trivia. What usually happens is that I am indeed very proficient but I’m also very stressed which can manifest as being pushy and competitive – not much fun for anyone really.

Perfectionism is a common quality for Autistic people. I can’t speak on behalf of others but a lot of my own perfectionism centres around a need to have some control and knowledge of an uncertain and confusing world. I have immense perfectionism around social situations and if I get it ‘wrong’ I am filled with regret. When a social situation goes ‘wrong’ I blame myself and become highly anxious. I feel like I have failed in some fundamental sense. I go through extreme anxiety and sometimes meltdowns, I feel I need to sort it out instantly and apologise to the person or do whatever I think I need to in order to ‘fix it’. Mostly perfectionism doesn’t stop me from doing much as in addition to perfectionism I have a strong dose of determination and motivation which makes me take on challenging things which I am know I won’t be instantly proficient at. However when I was younger my perfectionism limited my capability to work and also resulted in a major episode of mental illness.

I was just getting my life back together after some years of misery. Everything was a challenge and I was desperate to make the ‘right’ choices so I could have a better life. I hadn’t worked for many years but my aspirations involved working in a full-time professional job and I kew I needed to work up to that ad build my employment confidence. One of my housemates in supported accommodation got me a casual job washing dishes at a restaurant two nights a week. It was not a responsible job at all. The worst outcome of an error would probably be that one of the diners might sent back a dirty knife I had missed. That was it. But in my mind I was desperate to be completely perfect at my job. I was terrified I would make an error that would somehow put the restaurant out of business. My anxiety grew to an immense level to the point that I was highly anxious all the time. Anxiety like that triggers psychosis in me and that it what happened. Not only did that jeopardise my future as an employee, it actually put my life in very real danger. I did end up building my employment confidence armed with the knowledge that if I started getting this feelings of high anxiety and perfectionism about an activity I was doing I should tread very carefully.

So I have known since that time that perfectionism is rarely your friend but it is so hard to practice what I preach with this one. The odd thing is that now it probably looks like a positive quality to anyone who isn’t me, but for me I still struggle with it. I said to a manager I was working wth recently that I was a perfectionist which ‘is good for, you but not so much for me’. This is usually true. I rarely make mistakes at work and on the rare occasions that I do I alert anyone who needs to know and go and make amends. The issue for me is that I am always in state of controlling my world which  – as I tell other people – is largely impossible and so quite stressful. I try to ensure every singe thing I do or say is ‘perfect’. It adds a level of anxiety to my life but means I am very accomplished. Most of the advise and thoughts I share with people in my writing and presenting are things I know and do but managing my perfectionism is a definite work in progress.

There are some strategies I use to help address these things:

  • A sense of perspective is often the enemy of perfectionism. Think about what the worst outcome of an error is because usually our fear is much greater than the situation requires
  • If you feel that if you weren’t a perfectionist about your work or interactions wiht people or whatever you worry about, and that you would be terrible at it and make careless errors, reflect that you are not going to get complacent or careless by letting go a little control. We don’t generally do things we do not want to do. The difference between perfect and terrible is a long distance indeed and it is highly unlikely if you are not perfect that you will go to the other extreme.
  • Work to address anxiety in your life. Anxiety feeds perfectionism so the less of it you have the better. There are a large number of strategies to work on anxiety including mindfulness, psychotherapy, berthing exercises and distraction. The other benefit of this is that it will help reduce your anxiety generally, which has to be a good thing.
  • Appeal to your logic and reason. It actually isn’t possible to be perfect in most of life’s endeavours. If you aim to do the best you can rather than perfection, through the lens of logic, that is essentially the same thing but in terms of your thinking and approach, doing the best you can do is  a much healthier aim than absolute perfection.

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Awesome is a fine aspiration and it definitely isn’t perfection!

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Mr Kitty’s thoughts on life, the universe and his human

My name is Mr Kitty. I live in an art gallery called Whimsy Manor with my human whose name is Writer.

I remember a very long time ago I didn’t have a home. It was cold and I had to hunt for rats and mice to eat. I was very scared. Sometimes other cats and dogs would try and attack me, so I got to be very tough and I still don’t like other cats and dogs.

One day I got caught in a cage. I thought this was terrible and I cried and cried. A human came and took me out of the cage. This human spoke in a  kindly one of voice and told me what a pretty cat I was and I would be OK.

Not long after that I got taken to somewhere new. I was scared. But it was actually wonderful because a lady took me out of the cage and held me close. I knew she was a good person and I purred and purred. I heard her say ‘I’m keeping this one because he is beautiful and I love him.’ And there I was at home with my human forever. Every day my human tells me again ‘Mr Kitty you are beautiful and I love you.’

Most mornings my mummy goes out, She says ‘I’m off to work Mr Kitty. See you later. Be good.’ I go and sleep on the bed until she comes home. Sometimes I look out the window at the world. I don’t want to go out there – it is scary and cold – but I like to look. I used to think that my human mummy wouldn’t come home. If there was food in my bowl I would leave it, not knowing if she would ever return. But I don’t do that any more because she always come home and I know she wouldn’t leave me.

She buys toys for herself. I know she likes sparkly things and glitter. She has a whole box of human toys but I help her to share them with me. She says ‘you’re a funny bugger’ and picks me up and gives me a big cuddle. I love that.

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Every once in a while a bunch of other humans come to my house. They all talk and laugh. One of them is a young human with long hair. She is very good at art and shows my human and the other humans her drawings. There is another young human with fluffy hair. I play with it. None of the humans is every angry with me and they all tell me how much they love me. I usually visit all the humans’ handbags and smooch them or climb inside. The humans stay up really late and I always go to sleep before they leave. I think this is called movie night. I like movie night.

My human gets really sad and scared sometimes. She tells herself ‘it’s not real’ and doesn’t even sit at her computer. I go up and give her a big cuddle. She holds me really close and tells me she loves me. I love her too and I hate when she is scared. She always gets better but I worry about her. One time she said ‘your face looks like a demon but I know you are an angel.’ She needs me I think.

At the end of every day my human mummy climbs into the big bed. I climb under the covers right next to her and lay my head on the pillow. My human puts her arm around me and holds my paw. When I wake up later she is still holding my paw.

I love my human. I am so happy at home with her. I have lots of toys to play with and cat food. I say thank you every day with cuddles and purrs. I rescue my human every day, just like she rescued me. I had a good life for a kitty.

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Why I’m not friends with 2nd April and some suggestions to improve this

I will warn you in advance this piece is a little bit of a diatribe. I should first acknowledge that there are some distinct positives around having a time to promote understanding around autism and many groups – Autistic-run and otherwise – do some great work using Autism Awareness April as a starting point. I would not want to ‘throw the baby out with the bathwater’ in this. However I struggle with Autism Awareness April quite a lot. Some of my struggles include:

  • It is an odd premise that awareness alone is a good thing. Every bully I have ever been victimised by in my life has been acutely aware of my autism – or at least that I was somehow different.
  • Awareness alone is an unhelpful concept. Awareness is the very first baby step in inclusion. There are many other steps which should be promoted as well. Things like empowerment, understanding, love and acceptance.
  • Many of the ‘awareness’ activities are not done in consultation with Autistic people. I see April as an event done ‘for’ us not ‘with’ us. I tend to think the first rule of inclusion is not to do things ‘for’ a group of people who face disadvantage. The disappointing irony is that April – which is meant to be about autism is so often not experienced as inclusive by many Autistic people.
  • April as autism awareness moth was not initiated by Autistic people themselves. It is something we have bee ‘gifted’ by the UN. I really have difficulty in this. I see it as a bit like creating and promoting an event around celebrating Aboriginal and Torres Strait Islander cultures but with no Aboriginal or Torres Start Islander involvement and then expecting Indigenous Australians to get on board with it. I often feel like ‘Autism Awareness’ has nothing in it at all for me.
  • It generates some very difficult conversations. The world outside of the autism community often does not know a lot about issues within our community. This is quite understandable. I mean if they don’t have a connection to autism why would they know about issues facing us in any great detail? I find I get genuinely well-meaning neurotypicals proudly telling me they are wearing blue for April which makes me feel very conflicted indeed, to the extent that I have a prepared statement for this situation. I dislike having to repeatedly explain why I am not delighted it is April and why I am not wearing blue and a bunch of puzzle piece-themed things.

So I have posed a number of issues around April and autism awareness here but I try to never pose an issue without offering a solution. The solutions in this issue are potentially quite numerous and thy can be applied at a number of levels. SO in keeping wth  the need to limit length in my blog, i have picked one audience for my suggested strategies. Here is a selection of things I would like to see in happening April aimed at non-autistic individuals and organisations.

  • Be aware that there are many, many  different viewpoints in the Autistic community. There is not one Autistic position on the issues around April and people’s opinions and thinking will most likely change over time.
  • Take on board Autistic requests around events and branding, such as not wanting to ‘light it up blue..’
  • Remember that we are not usually being ‘radical’. Things like autistic involvement in events and services which impact us is a reasonable request. Radicalism usually happens where there is a need for it such as when there is discrimination or abuse.
  • Be aware that we may be more stressed and sensitive than usual on April for a range of reasons
  • If you are planning an event, have autistic involvement in it at as many stages as possible.
  • Read some blogs by autistic writers. There are plenty of them out there and there are some great ones which have loads of helpful advice and information.
  • Remember that being given the blue cupcake at the work morning tea might be the final straw for an autistic person and they might just feel totally ‘over’ April.
  • And be aware that an Autistic person might happily embrace and celebrate April 2 as ‘their day’ and they might want to celebrate with you. We are ask quite different.

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My starring social role – Autism and ‘masking’

When I was a teenager I was very unpopular and bullied a lot at school. I worked out almost as soon as I started high school that there was something about me that separated me from my peers. I knew I was ‘different’ for the first time when I was 11. I didn’t want this difference. It meant people ostracised and ridiculed me. I wanted to be like the other kids but I couldn’t figure out how. I thought my English accent as a newly arrived ‘pommie’ (as my classmates called me) was the reason so I set about becoming as Australian-sounding as I could. That didn’t work so I changed my dress sense to what I thought was generic and nondescript, once again without success. I really couldn’t work to how be more socially acceptable so I changed how I spelled my name – thinking being ‘Janette’ would make me more popular than ‘Jeanette.’ Of course that didn’t work either.

The chameleon-like qualities I discovered in early high school years became more finely honed as I reach adulthood. However, the only groups I could successfully blend in with and be accepted by were always negative and / or dangerous ones – criminals and people with drug and alcohol addiction issues. I was ‘acting’ or ‘masking’ my true self, with varying levels of conscious knowledge of it, until I was at least 30 years old.

My autism diagnosis was gained at age 20 and I had some vague awareness that fitting in and masking was a ‘thing’ related to autism but I had difficulty accepting my autism so didn’t apply it to me. I could effortlessly slip into whatever character I thought I needed to.It was effective as long as my worlds I didn’t collide. I remember taking a call from one of my university lecturers whilst l was living in public housing when one of my very down to earth neighbours was visiting. He kept saying I must be a liar to be two people at the same time. It bothered him which was the ‘real’ me. In fact I don’t think either were the ‘real’ me although my preference was probably the university ‘me’. I was confused by this as I hadn’t known anyone else witness the my social chameleon figuratively trying to turn glitter purple and grey at the same time!. I wondered if I was a liar but now I think it was something conscious r which I could be aware of at the time.

For me, and I imagine many other autistic people, my ‘masking’ was a complex thing, borne out of a need to be socially accepted. Life seemed easier when I was masking. People tended to be more friendly and less hostile. Even if I had no idea what was happening in a conversation or relationship I could at least escape being judged or ostracised by using he language and expression I knew were expected. Well for a lot of the time anyway.

I actually became so adept at masking in my twenties that I believed I genuinely belonged to my adopted social group at the time, drug addicts. When I decided to remove myself from that very destructive culture I didn’t know who I was. I had been playing the druggie Jeanette role for almost five years. I didn’t understand about masking and autism but I understood that if I kept being the version of me I was at the time I would not be around for much longer. I decided very clearly to change my life and a changed life meant a changed me. I considered what I wanted my character to include and set about creating it. It involved a further kind of masking but perhaps a more helpful one. I was like an author creating parameters for a character in their novel but the author and the character were both me.

My issue was always social acceptance, I craved it. I was desperate to belong to the extent that I didn’t care what I did or said to be accepted. Being disliked, bullied an hated at school left me with little or no self esteem. I disliked myself. earning to like myself again took many years, many accomplishments and a lot of support by the few caring people in my life at the time, mostly my parents. I often find myself criticising that younger Jeanette for choosing a damaging peer group but when I reflect that while I had a choice, I know it is not as simple as that.

I use masking as a coping strategy on occasion even now and I think a lot of people do. The difficulties I have when people need to mask is not due to their actions but in the reasons behind the masking and some of the responses to it which tend to happen from others, including:

  • It costs someone their sense of identity – as it did for me. They can lose their sense of who they are. Almost as if they are a spy terrified of their cover being blown.
  • Clinicians sometimes use masking and acting in Autistic people as a justification for misdiagnosis saying they are ‘too social’ or ‘managing too well to be Autistic”
  • If it is not understood that masking is happening then the person who is masking as a coping strategy and going through trauma may not et assistance as they are seen to be managing
  • It is often discussed as only within the domain of Autistic women and not men or gender divergent Autistics, which can impact on the support they receive, including misdiagnosis
  • It is viewed as intentional dishonesty or a character flaw.

In my experience  and understanding masking tends to be a social survival strategy, The key to address it is to address the reasons that such a survival strategy is needed in the first place. In a world where neurodiversity was understood and respected, where Autistic and other neurodivergent people were valued for what we bring to the world rather than expected to conform socially in order to be accepted… I reckon in that world masking would be a lot less necessary, So let’s work to create tat world and along the way support Autistic people to be proud of who we are and comfortable in our skin.

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‘Are we speaking the same language?’ – Why Autistic communication isn’t ‘wrong’

Apparently I get communication ‘wrong’ sometimes when interacting with neurotypical people. They tell me I am coming across in a way which is upsetting for them or confusing or a range of other things. However when I think about my intentions from the same conversations I am aware what the other person received was a long way off what I was intending to convey. This always leaves my doubting myself and feeling bad. In fact it shouldn’t. I expressed what I wanted to clearly but between Autistic me and the neurotypical person I was speaking with, the message somehow got lost in translation. I didn’t do anything ‘wrong’ and neither did they. It is just that we communicate differently. Autistic communication tends to not be understood as such. Instead we are viewed as if we were neurotypical people communicating really poorly.

This lack of understanding communication can result in discrimination against Autistic people. Neurodiversity is a relatively new concept. When it comes to communication differences, someone doesn’t only need to be speaking a different language like French or Japanese, they can ‘speak’ the langue of a different type of neurology. Not everyone communicates in the neurotypical ‘language’. In addition to this, every single one of us sees the world through the lens of our own experience. Autistic people do, neurotypical people do – everyone does. This makes it hard for people to see that someone else might be communicating from a different perspective. I find autistics tend to be better at being aware of this than neurotypical people. This is possibly because being a minority in terms of communication we have had to ‘learn’ the language of expressing meaning used by our allistic colleagues and peers.

Our different Autistic ‘language’ has almost always been seen as wrong. The basis of ABA and similar ‘therapies’ for Autistic kids is in this idea that we communicate wrong. Apparently, if we just looked ‘less autistic’ and ‘fitted in better’ our lives would improved. In actual fact these sort of ‘therapies’ are often really harmful and do a lot more to make us doubt and dislike ourselves than offer anything very useful in terms of communication.

Imagine a nation where there is a colonial occupation and the people in that nation are forced to speak the language of the colonial power – English, Spanish etc. I liken this to making Autistic people change their communication in order to be seen as communicating the same way as the others (‘The right way’ apparently.) I have huge issues with this. I’m happy to (figuratively) learn  Spanish but it needs to be on my terms not because I’m forced to conform. There is really nothing wrong with my Autistic ‘language’.

Some of the key areas where communication and expression differences happen include:

  • Honesty. Autistic people tend to be honest by default. Lying is difficult or impossible for many of us. In terms of communication style this means we tend to be very direct and upfront. Many neurotypical people see this as rudeness or us being needlessly blunt. Conversely many Autistic people dislike the ‘dishonesty’ (e.g. white lies, omissions etc) we see in our allistic peers which for them is just usual communication.
  • Manipulation and subterfuge. Autistic people often operate only on one level. There is usually no subterfuge or hidden meaning beneath what we say and do. This is often misinterpret by neurotypical people who do tend to operate on more than one level so assume we do too. Not being aware of and respecting this difference can be really confusing and damage relationships.
  • Nonverbal cues. Autistic people are often not focussed on others’ body langue. Many of us don’t really know what it is meant to be conveying. Non-autistic people can also misinterpret our own non-verbal signals. This can impact on things like the perception of empathy. I can’t really tell if somebody is sad unless they are crying, and even then I may miss it. I have a lot of empathy and if I know someone is having a hard time I will be there for them as much as I can but this can get missed leading to accusations that I am uncaring.
  • Communication and alexithymia. This is also known as emotion blindness. Many autistics experience this and it can make life very difficult, including around perceived meaning. I sometimes don’t realise how forthright something I say seems until afterwards as I wasn’t aware I felt passionate, or angry or sad etc. When challenged on being too forceful on one occasion I advised I wasn’t and it must have come out wrong but afterwards when I interrogated my memory of the exchange I realised I had been quite upset, I just hadn’t noticed at the time. Imagine trying to explain that to somebody who didn’t understand the differences I was talking about? I think I was seen as being dishonest and making excuses.

It is hard to go through life being misunderstood and judged. It is one of the reasons that I value spending time with my Autistic peers – my tribe if you like. I am acutely aware that I am speaking a different language with non-autistic people but often they just don’t realise it.

This is a key issue for Autistic people navigating the world. There are solutions and I think a lot of these revolve around increased focus on the value of difference and basically applying the concept of ‘different not less’ in interactions between people, Autistic, non-autistic and everyone else!

I would love to support neurotypical people learn to ‘speak Autistic’ more. In fact I think a lot of my work falls into that category.

There are many ways to communicate. Learning the language of another person gives you views into their understanding, their culture and their being,

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‘Are you a boy or a girl?’ Identity in the face of bigotry

The other day at work I saw an email from my workplace’s Pride Network – which I am note-taker for. The survey was about coming out at work for those who identify as one or more of the letters in the ‘LGBTQIA+’ acronym. I have identified as part of the sexuality bit of that acronym – for asexuality – and as part of the Q bit too – for being gender non-binary / gender Queer. I spent many years identifying as lesbian and had some relationships with women before realising that I have little to no interest in relationships and no interest at all in sex. Because asexual and gender Queer were never presented as options when I was growing up I went through life not knowing where I fit. The sense of liberation and empowerment at finding another ‘tribe’ in addition – or more accurately alongside – my autism was amazing. The odd thing about the survey at work was that I felt I didn’t belong. I shouldn’t assert eh questions or tick the boxes. They weren’t me, even though I know they ARE me. Some complicated emotions and allegiances for this little Jeanette and  imagined a great many others. Gender identity and sexuality have so much bound up in them beyond what they actually are in essence.

I always feel I need to justify my gender identity – ‘but I used to have a shaved head and wear flannelette check shirts and Blundstone boots’. Or ‘People always get my gender mixed up.’ or ‘I only wear feminine things because I like flower patterns and colourful jewellery. I don’t wear heels and I only wear makeup if I”m talking to an audience of over 100 people!’  Gender is something  people have an opinion  on and a lot of he time it is an unhelpful opinion. The reason I even now feel the need to justify my own identity is those opinions from others, not all of which were intentionally disrespectful, despite how they came across and impacted my sense of who I am.

In my understanding gender is how you feel when you think about yourself. What other people think is irrelevant and nobody should ever have to justify their own identity. For me, my gender is ‘Jeanette’. I don’t feel ‘boy’ or ‘girl’. In fact I can’t really say what those things would feel like. The self-consciousness strikes all the time. Why are my pronouns ‘she’ and ‘hers’? I actually don’t know. To me, my identity doesn’t need a change in how others refer to me, at least not at this point in time.

And there is that again, that ‘time’. I think a fair number of us are changing all the time in terms of gender identity and sexuality. We are coming out of a historical period where sexuality and gender have been quite strictly proscribed through social ‘norms’ and rules, and let’s face it, through a fair amount or prejudice and violence too. Even now when things seem to be improving, there are those persistent legacy attitudes threatening to deny people the right to be themselves and express themselves in the way they are.

Throughout my life kids have questioned my gender identity. Often a sort of bullying challenge is ‘what are you? Are you a boy or a girl??’ This used to really get to me and I felt powerless but angry. Why dd it matter if I was a boy or a girl? I am a person not a specific gender type. It still happens now and I say ‘neither. I’m Jeanette’ and smile at them.  Inwardly I’m still feeling attacked ad scared but I am also representing in my own little way,

As a teenager gender and sexuality were very strictly enforced, mostly by the ‘gender police’ of the bullies and often through unspoken norms and judgements from adults. I never went to a school dance. That’s not the worst deprivation of course but the reasons behind me not even considering going to such s event was around the twin weapons of homophobia and bigotry around gender. I pretended to be heterosexual for years, even to the extent of turning one of my male friends into my ex-partner to fool a housemate who was sexist and homophobic. As an autistic person I struggled to lie but I feared for my safety if I told the truth. This horrifies me in hindsight and terrifies me that these attitudes of hatred and violence still continue.

A huge number of Autistic people also identify as part of the LGBTQIA+. There is emerging evidence which strongly supports the knowledge that a significantly increased percentage of non-heterosexual, non-binary gender identities among autistic people as compared with neurotypical people.

I think identity – whatever part of your experience it relates to – is such a strong thing. As autistics and as members of other identities can have a very strong self-identity, supported by like-minded people and genuine allies. Or we can have our identity squashed out of us through ignorance and bigotry or just the application of incorrect assumptions which we are too hurt by or frightened of to challenge. For me the various facets of my identity which I have gathered to me over many difficult years are a precious thing. I would really like a world where people could express and live openly and proudly in their own identity.

And in answer to the questions in the title, I am neither a boy nor a girl but I am a Jeanette, and an autistic and non-binary and asexual one at that and I have a mental illness and I identify with women  and feminism as I have been on the receiving end of misogyny and abuse and I have seen others be attacked by this as well ad have it. My identity changes and grows as I travel through life. I am so glad after many years of keeping things secret – even from myself at times – that I get to be my own unique me. That is my wish for everyone else too.

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‘An unlikely apology’ – or  the trouble with psychiatry 

Something happened to me recently that I have never experienced before: My psychiatrist apologised to me for not following up on something in relation to my medication which could potentially have consequences for my health. It was not just the first time my current doctor had apologised, it was the first time any psychiatrist had, ever! I reflected on how telling and troubling it is that this was such a cause for amazement. I have had a diagnosed mental illness since 1995 when I was diagnosed with schizophrenia by a hospital doctor. I think I saw him two or three times. He pronounced this piece of rather significant diagnostic news matter of factly and told me I needed to take medication and left it a that. I went home and never saw him again.

I have spent twenty thee years accessing support form various mental health workers – in many hospital wards, with private system psychiatrists, public mental health clinics and telephone crisis teams. I have experienced arrogance, been condescended to and ignored, gained misdiagnoses resulting in even poorer treatments, victim-blaming when I was attacked physically and told ‘don’t be so annoying’, invalidated in many ways, underestimated over and over again and experienced some things which I can only really describe as torture. This has been when I was seeking support and assistance from people in ‘caring’ roles. There is evidently something very wrong going on here.

The mental health system has always seemed to me to be the enemy of my mental health. I always thought that some mental health workers were just sadistic and mean but I think there is something going behind all of that invalidation and victimisation. I should note here that many mental health workers are genuinely caring, kind and helpful and the issues are not universal. Unfortunately I hear many horror stories around accessing mental health services from others and sadly I have experienced a wide range of poor treatment over the years.

In addition to my mental illness, I am autistic. Apparently this adds layer of complexity around mental health services. Autistic people commonly experience mental illness conditions and the problems they report around accessing help are often quite similar to those I have. I think there is a real lack of information and understanding about autism in mental health settings but there are some other things going on which make it particularly hard for autistic people accessing services.

In the mental health world, the ‘consumer’ (I hate that word!!) is usually at the bottom of the pile in terms of the dynamics of health care. Mental illness comes with hundreds of years worth of baggage. People with mental illness have only very recently been ‘officially’ viewed as having rights and being worthy of respect. Until quite recently people with mental illness were taken outside of society and put in an ‘asylum’. Similar things were being done with some autistic people. Not only did we have pretty much no rights, we weren’t even visible to other people. Effectively we didn’t exist.

The specific issues around autism and mental health support seem to revolve around a lack of understanding what autism is and the needs of autistic people as well as a degree of respect and care.

Autistic people accessing mental health services have a number of things to contend with. Staff members in a mental health clinical setting see mental illness every day. They may view everyone they see through the lens of mental illness but autistic people are likely to have additional needs and concerns and autism is not a mental illness. Our mental illness symptoms may be expressed differently due to interactions with our neurology and experiences as autistic people. However, this often gets missed by the psychiatrist viewing every person only through that lens of mental illness.  This can lead to unhelpful treatment and misdiagnoses. Our autism diagnosis can even be questioned, which is not only a negative in practical terms but can also be seen as an attack on our very identity – not something you want to happen when seeking support for a serious illness!

In a hospital setting, sensory issues might be overwhelming but it seems to be quite rare for mental health professionals to understand sensory processing disorder or know how to help address it. This unaddressed sensory onslaught can impact on mental illness symptoms, leading to a sort of catch 22 hospital admission were sensory issues are sen as mental illness symptoms and teated as such.

Meltdowns and shutdowns are likely to be misinterpreted by mental heath professionals. This can lead to some dangerous situations. In fact as many autistic people are empaths and pick up on the emotions of those around us, being in hospital or a health clinic with loads of other people who are depressed, angry, sad and confused is possibly the worst place to be when we are unwell with mental health issues. I always tell the crisis team that however bad things are, I would like to stay at home and feel miserable with Mr Kitty than subject myself to hospital and all it entails.

Many autistic people are so traumatised and mistreated in mental health settings that they simply won’t access help, no matter how difficult or dangerous their situation is. That is a sad indictment on mental health services and a terrible situation for people who feel they cannot access help.

This is a deep-seated problem with a huge impact on autistic people. The solution to address this range from high level, systemic changes to one-on-one strategies to change clinicians’ approach and understanding. Some things which may assist include:

  • Building the autism knowledge of all mental health workers. This is not something one individual can do and needs a concerted effort to build knowledge and understanding. It can involve both macro and micro actions. I try to do this each time I have an appointment with my psychiatrist and also by doing things like writing this post.
  • Creating a designated position for an autistic liaison officer in healthcare settings, including mental health settings
  • Making available peer support with autistic peer support workers.
  • For autistic people with mental illness, it can help to make  an ‘advance agreement’ about your mental health needs, explaining your triggers and clinicians mustn’t do (e.g. physical touch) what helps and information about meltdowns and shutdowns. Ideally this should be done when you are not in crisis. You can draft this yourself or with your case manager other mental health worker if you have one.
  • A culture shift with psychiatrists with a view of them being a facilitator for good mental health and not a boss-type figure
  • And finally mental health clinicians and anyone with an interest in autism and mental health reading Emma Goodall, Jane Nugent and my book The Guide to Good Mental Health on the Autism Spectrum https://www.jkp.com/aus/the-guide-to-good-mental-health-on-the-autism-spectrum-34027.html 

I am really glad my psychiatrist apologised. I want a world where psychiatrists and other health workers think nothing or apologising when they get it wrong. Health care should involve care for all of us not invalidate ad misery.

Mental health services are there to help. They should not leave people feeling more damaged and miserable. Sadly they often seem to.-2