‘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.



‘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

There’s no fun in fundamentalism – addressing either / or thinking

This is an article all about fundamentalism. Most people think of religious fundamentalism when they hear the term. I was in fact raised in a fairly fundamentalist Christian community called the Christadelphians. They still describe their own very specific beliefs as ‘the Truth’ (note the upper case T). Being a Christadelphian was really easy in a lot of respects. You never had to question your beliefs  – due to them being ‘the Truth’. It was all worked out decades before I was born and apparently was still ‘True’! It was a close community. There was a lot to be said for it I suppose although I think you can probably imagine why I left at fifteen never to return! The problem I found was that narrow view. What happens to people from other churches or faiths when they died was a frequent question I would ask as a child. Add to that ‘How do we know we are right?’ And my younger self was onto something! However fifteen year old me left the Christadelphians in order to join a different  sort of fundamentalism  – that of revolutionary Trotskyists. I joined this group because I did not have any self-esteem and had almost no friends and was desperate to belong somewhere – I didn’t really mind where. In barely no time my socialist ‘family’ was where I belonged. I just had to agree with everything in the weekly socialist newspaper – very convenient that!  If I agreed with all the beliefs then I was accepted, Simple as that.

As I grew older I started to question the the fundamentalist approach to life. And then I started noticing fundamentalism in unlikely places. People did not have to belong to a very earnest church or an even more earnest Trotskyist group. Fundamentalist attitudes were everywhere. In fact I have a fair few myself even now. Fundamentalism can involve any set of beliefs or even just one person’s own approach to life. You really don’t need a manifesto or a statement of faith! It can be  characterised by a very ‘either / or’ view of life, a set of unshakeable beliefs, an ‘othering’ of people that don’t agree  – which often takes the form of seeing them as conglomerate groups rather than individuals. It can also involve a strong feeling of ‘them and us’ and a demonising of other groups or individuals. The example which I always remember is when I was a socialist and our group complained about the ‘sectarianism’ of the other Trotskyist groups at length and treated them like the enemy, thus disproving their own point!

I am far from immune from this sort of thing and I think most of us do it to some degree. I find it is an important thing to be aware of though as it can be damaging and put a distance between people when there doesn’t really need to be one.

I have a few ways in which I try to counter this thinking and any related behaviour in my own life. These include:

  • Remembering that everyone is at a point on their journey. To condemn them and write them off may be really unhelpful as, even if they have problematic views, they may change. On occasions I have ‘gone in hard’ on someone in the autism community and subsequently completely lost any opportunity to engage with them again. Of course I pull someone up if they express damaging views but I keep in the back of my mind the notion they could change. I am even an example of this myself. In my talk for TEDx Canberra recorded in 2013, I repeatedly used the term ‘Autism Spectrum Disorder’ which I would never use now. I have grown and times have changed. I’m glad nobody other than me has given me a hard time about that wording but you get the picture. However there are some people, organisations and situations which need immediate action as they are harming people with their words, actions or beliefs.  This poses the very difficult question of where to draw the line which I suppose is one of the reasons fundamentalist thinking is understandably very attractive. This is a challenging area and as a person who tries to keep the dialogue open if that is an option, it can be really stressful and involve a lot of soul-searching – and guilt if I pitch it wrong.
  • ‘Preaching to the choir’ is great – affirming, enjoyable etc. I often imagine a smallish room with all the people who I agree with on pretty much everything. We have a great time talking but the message doesn’t go anywhere where it can challenge someone, enlighten them, empower them or open them up to new things, My socialist friends in the 1990s did a great job at this. They would stay in their group and have meetings. If a non-member happened across our group and dared to utter a ‘wrong’ opinion, they were shouted down and never came again. Not really useful for an organisation of 100 or so people who wanted to change the world through mass revolution! I have spoken for a number of autism-related organisations over the years which sit somewhere on my ‘iffy’ list. Why? Well mostly because I am talking more to the audience than the organisation and often that will be full of people who can benefit from what I say. In addition to that, organisations can change their thinking as much as individuals can and me speaking about Neurodiversity and other good positive things may assist with that.
  • What I find with the fundamentalist groups I have been in is that there are rules for EVERYTHING! They had a very specific view on pretty much every aspect of life. This was true for Christadelphians and Trotskyists alike. This involves the ‘absolute Truth’ applying to a lot of small things. I think this is a core part of ‘either / or’ or fundamentalist thinking. There actually are some big truths in the world – Don’t hurt people or the Earth, be respectful of others, that kind of thing. I would hope that most people share those truths. As one moves into fundamentalism though, there are strong opinions and beliefs on smaller and smaller things. I challenge my own fundamentalism by considering the scale of the thing I am being hardline on. I find it is a good test. If it doesn’t matter in the scheme of things, it can be wiser to let that thing go, a least in that one instance.
  • I know I am on the fundamentalist bus when I start holding others up to my own specific views and judging them, as if they had somehow ‘fallen short’ of the ideal set by me for me! I know! t’s a horrible thing but it can happen.

I find it is useful to reflect on the issues around either / or thinking. And as someone who has belonged to two separate fundamentalist groups I can confidently say that my life is a lot more pleasant and inclusive now I’m doing better at not judging everyone and applying my ‘Truth’ to the wonderful diversity of rest of the world.

same but different-2

‘Just keep away from them’ – Saying ‘NO’ to victim-blaming

I give a lot of presentations about autism and resilience. Right after the slide about what resilience is, I always add one about what resilience is NOT. There is a reason for this. One of the first presentations I gave about autism and resilience was at a large conference in Queensland a few years ago. Many of the attendees were parents of autistic kids. My resilience talk was in the big theatre and I was on quite a high stage. The whole way through my talk I noticed a woman in the second row on my right. I could tell she wanted to ask a question. I expected her to interject – she clearly had something important to say. As soon as I finished speaking and it was time for questions her hand went straight up. I gestured to her to speak and told me she had enjoyed my presentation but she didn’t like resilience. I was puzzled and asked her why. She went on to recount how her son was being bullied at school. She had seen to the principal about this but instead of him suggesting anything to try and address the bullying he instead told her ‘your son wouldn’t be bullied if he was resilient.’ The woman had been horrified and decided – understandably – that resilience was not a concept she had a lot of time for.

What the principal was talking about was not really resilience at all, but victim-blaming. If the young boy had somehow acquired enough resilience to address the bullying himself overnight it would have addressed the issue but acquiring resilience that quickly is impossible and the principal presumably knew that. Bullying is essentially invalidation – treating a person as if they do not matter and have no rights. To have victim-blaming added on top of that is yet another form of invalidation but it is very common.

Victim-blaming sends messages that bullying is the victim’s fault and that they should somehow change who they are in order to be accepted. This thinking goes against everything I believe. Autistic kids who are being bullied – and any other kids who are for that matter – need support and respect, not being told that they are somehow responsible for another person’s behaviour.

At school I was told repeatedly to ‘go somewhere where the bullies aren’t’, ’bullying is character-building’ or ‘everyone has this happen. You will look back on your schooldays fondly’. I had someone who wasn’t even a teacher tell me that ‘the boys pick on you because they are attracted to you.’ I knew when these things were going on that those statements from the adults who were charged with looking out for me were totally ineffective and wrong. All of them in one way or another came from that idea of victim-blaming.

Victim-blaming is not confined to the schoolyard. I have some ‘good’ examples of it in other settings. A memorable one was when I was in the psychiatric ward in 2013 and another patient attacked me physically for no good reason. I was horrified and upset. I told the first nurse I saw what had happened. She responded ‘You should try to be less annoying.’ By that logic physical violence is somehow the fault of the person on the receiving end of it rather than the perpetrator. How does that work? Being victimised is bad enough but having it compounded by victim-blaming and quite rude remarks by people whose job it is to protect and support you? Not good. However, for many autistic people this is something of a frequent occurrence.

I sometimes think victim-blaming is easier than addressing the actual problem for some people in positions of trust. I think some people even have a similar approach as the bullies themselves – ‘the victim brought it on themselves by daring to be a bit different’, ‘they should toughen up and deal with it’ ‘this is not my problem. Let them sort it out themselves.’ Those sorts of things seem to drive this poor behaviour. The impact on people at the receiving end can range from turning all that invalidation from others into self-hatred and blame, feelings of being powerless, anger – sometimes displaced anger, trauma, anxiety and feeling the need for vengeance.

I absolutely hate victim-blaming as it compounds the original problem and leaves some who should have been supported feeling even more vulnerable. In my own life it has had significant impacts on my mental health and my sense of self and identity. It is hard to come back from those places, especially when the damage started young. Victim-blaming may be almost a throw-away thing from the person doing it but it can be felt deeply for years by the person who experiences it.

A lot of the time, victim-blamers seem to be unaware of what it is like to be the ‘victim’. Sometimes the issue is simple expediency:  it is 5:15 on a Friday and they want to go home… the bully’s family are really quite scary so it’s easier not to involve them…. they have eight patients on their shift and two of them need a lot of support but Jeanette is quiet and compliant so no need to spend time with her…We are all human and these sorts of responses are understandable but still not good enough. Bullying can leave lifelong scars and people’s complaints being dismissed is not acceptable.

A complaint of bullying may be the first time the person has raised it, even if the bullying has been going on for weeks or months or years. That complaint may be the tip of the iceberg. if people in positions of trust realise that their support – even if it is a few words of encouragement and validation and being someone for them to confide in – will be infinitely more helpful to them than suggesting to their mum that bullying will be addressed if their child immediately acquires resilience. And I really, REALLY want to be able to retire my ‘What is resilience  Not?’ slide.


“It’s my ‘me!'” Identity, language and autism

Today I had a particularly unpleasant exchange on Facebook with a  woman who said my use of the term ‘autistics’ was ableist. I responded by saying that many autistic people us the term Autistics to describe our culture, our tribe. Unfortunately it got less pleasant and blocking  wasn involved.… Anyway, the upshot of this is that it is another chapter in the thread of my life involving  difficult interactions with people autism and identity.

Apart from the feeling of being attacked, my issue with the exchange today was the concept of someone who isn’t me telling me how I should identify and how I should described my tribe.

Telling people how they should identify is sadly quite common. To my mind it is on the list of Highly Uncool Things to Say To An Autistic Person. The most common issues is around ‘person first’ versus ‘identity first’ language. Person first means saying ‘person with autism’ and identity first is saying ‘I am autistic / Autistic’.  Autistic people choose to identify in a number of ways. In my mind, however a person chooses to identify themselves is correct. A person’s identity is their own. It is nobody’s right to tell another person how they should see and describe themselves. If I want to use identity first language and you want to use person first, I do not have the right to tell you that how  you choose to identify is ‘wrong.’

In my own experience, my Autistic identity is a hard won thing, so people telling me how to or how not to identity  goes deeper than the simple irritation of it. I feel as though they are questioning my right to be who I am. After spending so many years ‘acting’ and fitting in with different, often harmful groups in order to feel like I ‘belonged’ socially because i hated myself so much. I don’t particularly appreciate being told my identity is ‘wrong’ and I should instead identify how they think I should.

It is like someone saying ‘I don’t think you should be called Jeanette. You should call yourself Brenda.’ It is offensive and ableist and just plain rude to tell an Autistic person how to view their own identity, or anyone from any other group. The only person who should get to decide on how they define themselves is the person themselves.  I honestly can’t understand why anyone would question this.

Oddly enough, in my experience, some of the people that have the most difficulty understanding the need of identity to be defined by the person it relates to are people who care about inclusivity. They often find ‘I am Autistic’ challenging because they were taught about being inclusive and not ‘defining people by their disability’. I have had many conversations in this vein – with varying degrees of agreement and resolution. I would say to people in that situation  – and everyone – to be guided by the persons; own description of their identity even if you don’t like it. It is their ‘them’ not anyone else’s.

I think for me, the main reason I say ‘I am Autistic’ is that autism is an integral part of my character and my being. It would be as difficult to seperate my autism from who I am as separating my love for cats or my creativity. It isn’t even that ‘Jeanette without autism’ would be a different me. She would simply not be me but a seperate person. I have fought for years against ableism and bullying and discrimination and self-hatred and insecurity to become the proud Autistic woman I am today. So please don’t tell me how to identify. It’s my identity, my name, my me.


What’s wrong with me?’ The trouble with pathologising Autism 

I’ll start by saying that this is not the Grand Theory of Jeanette or anything but is something I would like to put in the world for consideration and discussion.

I am going to write this from an Autism perspective than than a Disability one but I expect some of what I say here will translate across to other people.

I just came back form Sydney, where my autistic co-author Dr Emma Goodall and I launched what was both of our fourth published books. The audience asks lots of questions and were keen to know our expertise and thoughts on issues around autism. I talked about something I have never said publicly before but which was been nibbling the edges of my consciousness and autistic identity for a while. Yesterday Emma and I were autistic experts: People who share our knowledge with the world to help people support, respect, understand and relate to other autistics. Looking at myself, my life is accomplished for any human being.  I had to overcome all sorts of bigotry, violence and self-hatred and from that I made the life I have now where I win major awards and find a spot for almost every piece of writing I want to be published and also where I am fulfilled and mostly quite happy. My question around this is how is that possible if autism is just a deficit and a problem? If there is something ‘wrong’ with me, how come I’m doing so well? How then are so many other autistics doing great things and living fulfilled lives? Why does a mentoring program like the I CAN Network achieve such amazing results through empowering autistic kids and teens? If we were disordered and broken and wrong how is any of this possible?

Autism does tend to come with some big challenges, and while many of these relate to bigotry and bullying by others, some of them are more within us, like sensory processing issues and overload and shutdowns.

What if the difficulties we have due to autism are not in fact broken, disordered or disabling? What if they are like a different version of what non-autistic people experience as difficulties and stresses such as the angst of teenage crushes or being unable to focus on an idea or topic?

I say this because I see so many autistic people who can manage their challenges and embrace their great strengths. We often have amazing insights and skills. I spend a lot of my time talking to autistic teens and kids and they have so much going on in terms of sensitivity and thinking that I find it very hard to see things the way the DSM 5 does.  I look at my own life and I hardly see any autistic ‘deficits’. Rather I see my way of experiencing the world and how I have found strategies to manage my challenges.

What if the DSM 5 is actually pathologising things which could be seen differently. Do we have a manual for neurotypical disorder which talks about excessive gossiping and driving dangerously once hey get their license? I wonder if in the future autism will be a descriptor rather than a diagnosis? What if the world was neuro-inclusive and we are just part of wider human experience with our individual skills and difficulties? Maybe this would take the pathology away from autism. People have being saying for a long time about the great strengths autistic people possess. I actually think the pathology element is probably limiting people’s potential. When you are told from a  young age that you are different, have ‘social issues’ (whatever those are supposed to be. I socialise just fine with autistics and other neurodivergent people). Even in a deficits-based world autistics are achieving and reaching their potential and changing the world in their own positive ways. I just wonder if the world switched its view and saw us as a genuinely divergent ‘culture’ of our own that things would be so different for autistic people and those who love, care for, work with and learn from us.

I do not mean to ignore issues that autistic people have, but instead suggest that maybe clinicians and other ‘helpers’ could have genuine  understanding of the needs and experience of autistic people – kids and adults – and helped the person address those issues for what they were and not add a big, unnecessary whack of negativity about every other element of that person’s experience.

A couple of years ago I wrote a blog post which was supposed to be light-hearted about changing the  DSM autism diagnostic criteria from deficits to strengths. It remains by far the most viewed and shared of all my blog posts. But maybe it’s time to move beyond tongue in cheek to a real vision that a pathology isn’t the best lens through which to view autism. Imagine if instead of taking yourself or your child for a ‘diagnosis’ you enthusiastically worked through the descriptors and when you knew you belonged to the Autistic ‘team’ you celebrated with those you care about? This is definitely me thinking out loud (or out word!) but I think I prefer that world to being told everything you can’t do.


Why I don’t like going to the doctor – Autism and healthcare

I have been driven to write this as I am undergoing investigations as to a potentially serious issue cased by a gradually increasing level of one of my meds over time. I’m not just talking about this experience because it is cathartic or anything, I am writing about it because it illustrates a lot of the issues autistic people can experience around accessing healthcare.

In my current problem there seems to have been two main factor at play. The first was my own difficulties with interoception – the ability to sense what is going on in my body. Poor interoception is very often a problem for autistic people and things like physical health symptoms and pain tend to be difficult for autistics to be aware of or to describe. So about a year ago I noticed that my hands were involuntarily twitching. It caused breakages of bowls, dropped phones and involuntary clicking of the mouse or keyboard when I didn’t want to. I had other symptoms and figured they were worth checking out as it seemed unusual. I had a GP appointment so mentioned these issues to my GP who, from her reaction, clearly had no idea what it might mean so dismissed it. In my mind I interpreted that this mustn’t be anything to worry about: I had consulted a health professional who wasn’t concerned, so therefore I had no need be concerned.Time went on and things did not improve. I was so tired – sleeping on weekends during the day which I have never done before. I figured it was just because I was getting older. The only thing which made me think I needed assistance was when I had lunch with some autistic friends in Melbourne, one of whom runs a program called Access Health Autism – more about that soon. I recounted the twitching and fatigue and she suggested that maybe I was experiencing neurological issues caused by my medication. I resolved to ask my psychiatrist about this next time I saw him, but when I had the appointment my poor little Jeanette brain was having issues so the appointment was focussed on that.

I still did nothing. I just figured my health would improve and I could get myself to work and impress my boss and my intellectual capacity was only slightly less than it had been in the past….

Thankfully last week I had a flash of inspiration. A relatively new symptom had started: shakiness. Pushing the button down to flush the toilet would cause tremors, as would coming home on a hot afternoon or doing the slightest physical exertion. This was actually something I know I had experienced it before. Last Saturday evening I felt odd in exactly the same way as I had in the past. I finally realised that was related to one of my meds. I put my medical two and two together and actually made four – an unlikely metaphor in my history of accessing health care! Being me – ‘I’m indestructible! Just give me work to do and a cat and I’ll change the world! – that person – made me supremely unconcerned. Here comes a key factor in accessing health assistance – the supportive words and concerns of trusted friends. I put my suspicions about the cause of my heath issues to my Facebook family. I have a number of friends who are medical practitioners and neurodivergent themselves tell me to do something about it because it could be serious. I made an appointment that afternoon with the after hours doctor. I was terrified she would dismiss what I said but thankfully she didn’t and in fact was so convinced of my self-diagnosis combined with m presentation  that the only good test she sent me for was levels of that medication! She called my on Monday night (yes, there was some inner panic in author-land!). The  medication level was high and had increased significantly over the past year.

There are lessons from this experience:

  • Autistic and neurotypical people communicate in a fundamentally different way. If a neurotypical medical professional assumes their words and non-verbal communication are going to be understood by every single patient they see in a similar way, this will be an issue. There is a solution to this and it is to provide enough information about autistic communication styles and also issues autistic people can have around accessing health care  to medical professionals.
  • Medical professionals often misinterpret the communication of autistics. This is likely to be significantly heightened for those who do not use verbal speech.
  • Autistic people often have a very limited ability to be aware of the sensations going on in their body. They may have a very high – or very low – pain threshold which can mean they miss out on care –  sometimes urgent care – because they don’t fit the expectations of the doctor.
  • This low level of interoceptive awareness also has an impact on the autistic person knowing whether and how soon they require medical assistance.
  • Assumptions, ableism and stereotypes can colour a medical professional’s understanding of the autistic individual they are treating.
  • This information is not just about having a poor experience with the GP. These issues can result in serious illness or injury not being treated for a variety of reasons. The end result of this can be death, chronic health issues or significant acquired disability. Recent research shows that autistic people have a significantly lower life expectancy than the general population.
  • Many autistic people (including me on a lot of occasions) have had bad experiences of healthcare settings – such as discrimination and trauma.
  • Medical settings, and particularly the emergency department, can be a horrific onslaught of sensory nasties, prejudice by staff and anxiety and panic.
  • Autistic friends or family are often a great place to talk with about your health concerns as they may have similar experiences to you and are likely to be supportive,
  • There is a wonderful service that I mentioned before: Access Heath Autism. For a reasonable fee the person running this, Kathy Isaacs, who is autistic and a nurse of many years experience, will do an extensive questionnaire with you and put together a report on your individual experiences and needs in accessing healthcare. She will also do a letter for medical professionals treating you. I am about to find a new GP (for reasons which are probably obvious reading this!) and will take the report Kathy prepared with me for my first appointment. Here is the link for Access Health Autism if you are interested http://accesshealthautism.com.au
  • Everyone has the right to appropriate, supportive health care.

And as to my own health issue…well I see my specialist today. I have thought about the best and worst case scenarios and understand from experience that the real outcome probably won’t be on one or other end of that scale. I am pleased to have a positive attitude, lots of strategies,  a loving family and friends and the world’s best cat (I’m slightly biased!). I’m hoping whatever the treatment, that I will get more of my energy back which would be wonderful. It has been a hard year for changing  the world having no energy and wanting to sleep all the time!