“I have schizophrenia”

Content warning: Mental illness, suicide

The title of this post is a statement I find myself making quite a lot these days. I don’t mind it. It’s a diagnostic label that reasonably accurately defines elements of my life. I am comfortable saying it, even proud of my mental health survival story but this was not always the case.

The reason I have schizophrenia is simple to my mind – trauma closely followed up with drug addiction. I used the drugs which can result in psychosis (marijuana, amphetamines and LSD), not realising how dangerous it was. I was self medicating and was considered by my fellow addicts to be the most generous and prolific drug user in my suburb. I was living in a house with my dealer and a collection of assorted junkies. We decided not to pay the rent so we were all evicted. As the day came closer for the police to forcibly remove us, everyone else in the house found somewhere to go. I did not. I was anxious and constantly high. It was the catalyst for my first episode of psychosis. I ended up in hospital and was given the diagnosis there and then. I was 21. I didn’t believe it. 

At around the same time as this I was given my autism diagnosis. I believed that these diagnostic labels were for other people, not me. There was nothing ‘wrong’ with me, it was the universe that was fucked up! I spent the next few years in and out of psychiatric hospitals and jails. I still didn’t accept my schizophrenia diagnosis. In my understanding at the time schizophrenia was for middle aged men who thought they were Jesus. Sure, I believed the world was about to end and the nurse with black hair was a demon but that wasn’t delusional – it was true!

I gradually clawed my way back from the excesses of my illness, enrolling in university and ending up in Canberra in 2007 as a newly-minted public service graduate. Public servants don’t have schizophrenia – I was fairly certain of this. And if that was true then why was I seeing a psychiatrist? When I moved to Canberra I resolved to just see a GP as my days of needing care from mental health professionals was surely over? This might have worked had I not become really unwell with psychosis three years later. My poor GP had a limited understanding of mental illness. I convinced her to reduce my anti-psychotic medication which I believed – in my delusional state – was causing my illness! Things got worse and worse and it became quite dangerous. I believed that nobody could help me and I was doomed to a life of being miserable and tormented by the ghost that I saw and heard in my house. There was only one thought beyond that but thankfully I didn’t reach that place in my reasoning. If I had I doubt I would be here now. 

Thankfully my mum came to stay and got me admitted to hospital. I was in a right sate. And for those who don’t know, psychosis does not mean violent or psychopathic as it is often described in movies and TV. Psychosis is a state where reality slips away from you and things don’t make any sense. There are many kinds of psychotic experience but basically it is like living in a nightmare. Some people are in a psychotic state permanently. I can only begin to imagine ow awful that is. For me I can be acutely psychotic and need hospital, or I can be symptom free (rarely) or I can be largely OK but with some symptoms like voices, paranoia or disordered thinking.  I wouldn’t wish it on my worst enemy. It is terrifying and confusing.

Anyway back to the narrative… When I got to hospital the doctor told me I had schizophrenia. I had been told this – and not believed it – dozens of times before but this time the message sank in. It had only taken me, er 15 years to accept this diagnosis – twice as long as it took me to accept I am autistic! Why did it take me so long to arrive at the conclusion that I do in fact have schizophrenia? I had been taking medication for it since 1995 and doctors don’t just give out those kinds of medications for no reason. I think the main reason I couldn’t accept my ‘other’ diagnosis was all the stigma and assumptions around it. How many positive characters do you see in movies and TV that have schizophrenia? The only one that springs to mind is John Nash in A Beautiful Mind (and as an aside, nurses tend to compare me to him whenever I am in hospital!). Most characters who have schizophrenia are either violent, pitiful or destitute. Schizophrenia is rarely presented as anything other than something which will end your chance at a fulfilled life. When I look at this I look at myself and others I know who are doing well and think ‘but that is wrong.’

The assumptions around schizophrenia are in my experience as bad or worse than those around autism a lot of the time. I think a similar process is at work to drive both sets of assumptions. I remember going to my former chemist to pick up my meds and had them ask me how my mum was doing. Perplexed (as my mum lives five hours’ drive away and doesn’t know my chemist) I asked what they meant. They had assumed I was picking up my mum’s meds as I used to wear my work lanyard when I picked up my meds on my way home from work! Shortly afterwards the pharmacist said that ‘people who take your meds don’t usually work in the public service.’ I think she meant it as a compliment. It really wasn’t a compliment though!

Over the past few years I have done some work around accepting my ‘other’ diagnosis. It is a different kind of attitude than my feelings about my autism. There is not as big a positive schizophrenia community as there is an autism one and anyway I haven’t really tapped into it. I am quite comfortable talking about my schizophrenia and I will often talk about my work to people – paid job and advocacy – so as to help dispel misconceptions and assumptions. I do know that it is possible that one day I won’t be able to work due to my illness and I spend a lot of my life working on maintaining good mental health. I take very heavy duty medication – one of which has possible side effects of death by not one but three ways! (Don’t worry – this medication is frequently tested and monitored). I know I am at a high risk of suicide and that everything I have could one day be taken from me by my illness but I also know that thus far I have lived my life with all tis challenges very well. I have friends and family who love and respect me and I have a very helpful attitude to life. I think I’ll be OK and yes, I am happy to say ‘I have schizophrenia’.

‘Shame on you!’ Autism and assumptions

A couple of years ago I was on an interstate bus. I took a seat right up the back but it was faulty and uncomfortable. So I moved to the other side and the USB charger didn’t work. I can’t be on a bus without music! I always have music and I didn’t have enough battery left to get me anywhere near home. In desperation, I sat next to someone on the very back seat. The charger worked and the person I sat next to was lovely and I didn’t need my music because I talked to her most of the way home! I posted all of this on social media and someone said ‘those aren’t real problems. You are pathetic to complain about things like that!’ I replied that I am autistic and those things were in fact a very big deal!

More recently I posted a photo of myself out in the world wearing my purple pronouns t-shirt. The post attracted over 500 reactions and several comments. One of the comments said ‘shame on you for not wearing a mask!’ I responded that I live in Canberra where there is no directive to wear masks when out of home. We have not had active cases of COVID in a very long time here. I also pointed out that for many autistic people wearing masks is not possible due to sensory and other issues. In fact in most jurisdictions which mandate wearing masks there are exemptions and one of the exemptions is for autistic people. The author of the comment took it down pretty quickly after that but it got me thinking about assumptions and judgement.

Humans judge. Apparently there is research to demonstrate that we make up our opinion of someone within about three seconds. Add to that more blatant biases and we end up with a bunch of assumptions, judgement and stereotypes. 

There is also something I term ‘neurobias’. This is where someone from one neurotype makes judgemental decisions and observations about someone from a different neurotype based on them not understanding that there are differences in communication and expression. This plays out in a large number of ways and particularly when it comes to communication and empathy.

If you imagine an autistic person as a French speaker and a neurotypical person as a German speaker. Both languages make sense and convey meaning well. But if you only speak French then you will struggle to understand the German speaker and vice versa. But neurobias if a little different to that example. Neurobias is like the German speaker not being aware that the French language existing. So when someone speaks French the German speaker assumes they are speaking German but very poorly. They are baffled by the communication and as a result there are judgements and unhelpful assumptions. This is a very frequent occurrence for autistic people.

When it comes to empathy then neurobias becomes very apparent. The neurotypical tends to assume that the autistic is some sort of broken neurotypical rather than being a fully effective autistic communicator. Seeing the autistic through the lens of neurobias the experience of empathy is misinterpreted and so it is assumed autistics lack empathy. Of course some autistic people do lack empathy – in the same way some neurotypicals lack empathy – but generally autistics have an acute sense of empathy and are consciously thoughtful and considerate. But this often goes unnoticed. It works the other way too. Autistics often see neurotypical people as lacking empathy for us and I suspect a similar process is at play.

The best thing to address all these assumptions and judgements is to increase the understanding of autistic experience and to ditch the judgement. While we all have biases, we can unlearn these. Becoming aware of bias is the first step to addressing it. Respect for autistic people will help too as will asking and listening rather than assuming and judging. We need to build the understanding that autistic experience and communication is just as valid as any other communication and is valid as is. We are not broken neurotypical people. We are just different – different is not less.

Autism and crime – a different perspective

I need to preface this piece by saying I have possibly a rather different view on issues around criminal justice than many people do as a result of my own lived experience. Criminal justice issues are always going to be complicated and nuanced and multiply this when looking at autistic people – victims as well as perpetrators. Criminal behaviour is both an individual choice and a social issue. 

I have the perspective as an autistic person who many years ago was victimised and also was a perpetrator of criminal behaviour. I spent around three years in prison from between 1994 and 2000. I will say that my offending was definitely NOT because I am autistic although I was taken advantage of by a criminal man who was a predator and this was my initial introduction to the criminal justice system. Things sort of got worse from there.  Since 2000 I made a lot of changes in my life to be where I am now but it was a very difficult journey.

I met the late and very influential autistic author and advocate Polly Samuel in 2004. My autism diagnosis was then ten years old. It wasn’t long after I met Polly that she told me she thought that I should write my life story. Lots of other people at around that time had advised me to write down my story but I was uncomfortable and didn’t want to. The reason I stopped objecting and wrote my autobiography, called Finding a Different Kind of Normal was this: Polly told me that she spoke at parent groups and there were often parents who would sit right up the back and leave before the socialising and cup of tea at the end of the meeting. Polly told me these were the parents of autistic young people caught up in the criminal justice system and they felt ashamed and excluded and that if I wrote the book it would be for that group of parents and their kids. It took me a few moments to realise that this would include my parents too. I finished writing it in four weeks and editing it in two more. I guess I had something of an incentive!

As Polly demonstrated, criminal justice system involvement is something of a taboo with most people and seems to be even more so in the autism community. I suspect this is probably due to a very big issue which persists today – that of stereotyping and using myths about autism to justify blaming criminal behaviour on autism itself. By this implication, we are all emotionless, cruel monsters who don’t know right from wrong. The  idea of autistic people ‘not knowing right from wrong’ is pervasive in this space and is particularly damaging…and in almost every case is totally false I might add. If not knowing right from wrong was part of autism presumably we would all be in prison! Another harmful myth is around us apparently lacking empathy. This myth has done so much damage across a number of domains and is a pet hate of mine. It seems to have started from some quite flawed research but has since taken hold in wider society. In actual fact autistic people are generally very high in empathy but we tend to experience and express it differently to neurotypical people which, for people looking for things ‘wrong’ with us, presumably provides something of a justification.

In some instances autism has been presented by media outlets as an actual reason for offending behaviour, which is not only incorrect, it is also adding fuel to the fire of people who would hate and revile autistics and it adds considerably to the stigma individual autistics face in the world.

Some people in the community are so horrified by these myths around autism and criminal intent playing out that they deny that any autistic person commits criminal acts. Sadly that is not the case either. Autistic people can and do commit crimes for a range of reasons. Some of these reasons relate to us being exploited, manipulated or taken advantage of by others with genuine criminal intent. There are other similar issues – autistic people being desperate to win the approval of peers or a partner, which was what put my on my own very regrettable path in the late 1990s. In other cases autistic people can be accused and even convicted of crimes which were not committed with any intent but were misinterpreted. The movie I am Khan is an example of this – and is an excellent and very moving film too! Sometimes criminal acts are committed by autistic people who have been mercilessly and continually bullied and victimised and retaliate. Autistic people also commit crimes for the same kinds of reasons that other people do. It is a small minority of autistics who become caught up in the justice system but it does happen, as I am living proof of I suppose!

As you are reading my blog I imagine you might have some idea of the work I do in the Autism community. While these days I have influence and a lot of people respect my work, in the 1990s I was one of those people who was swept under the rug metaphorically. I was pretty much seen as lost and beyond help. I was a person with huge issues around  offending behaviour yet now I am seen as a role model and a community leader. We are responsible for each act we make. I take full responsibility for the acts I committed in the 1990s, as while society contributed to what made me do the wrong thing, I also had an individual choice. I know this because there was a point at which I stopped my aberrant behaviour and this was a clear choice – if quite challenging at the time.

Stereotyping and demonising autistic people is not going to address anything in the justice space or anywhere else for that matter – and it will not reduce offending behaviour. What it will do is generate more prejudice and stigma. It will almost certainly add to any unhelpful stereotypes held by judicial staff, corrections staff and police. This is a huge issue as many employees in the justice system could really benefit from accurate, sensible autism training and knowledge  – and disability training more generally. First responders particularly need better autism knowledge and disability knowledge more broadly as a matter of safety. And way beyond the justice system, these sorts of stigma and myths will contribute to autistic people being demonised and victimised across the board. I say no more myths and no taboos – both are damaging. Let’s just help support people and work to ensure the world is a safer and more inclusive and respectful place for everyone.

Home at last

This post is a more personal reflective one than usual and it is about the idea of home and how I have finally found somewhere I feel safe and happy and many years of unstable, unsuitable and stressful housing.

I moved into my new apartment on Tuesday. It is a rental and it is the nicest place I have ever lived. It is a one bedroom apartment but it is huge and I am the first occupant ever as it is brand new. I am extremely grateful for this lovely home and feel like I am living in a beautiful dream.  It doesn’t seem real. I have a TV and DVD player in my bedroom, brand new appliances and a great balcony. I am so happy here I can hardly believe my luck. And I am not stressed. This is A Big Deal as the last two properties I have lived in caused no end of stress and poor mental health. More about that later but for now let’s go back in time to the 1990s.

I moved out of home when I was 17. I had finished school and had a lot of issues with living at the family home. I was a socialist – a passionate interest in left-wing politics having pushed me into the embrace of the International Socialist Organisation at the age of 15. My politics meant that I was always arguing with my dad. I moved out pretty much straight after I finished school and spent some years living in share houses with fellow socialists.

In 1994 I met someone who changed the direction of my life in a big and very negative way. ‘Dave’ was a criminal and I ended up in a relationship with him. I got more and more involved in his world and by the time I realised how dangerous this was I had got too involved and was afraid to leave him given how much of his awful plans he had confided in me. We committed crimes and both went to jail. When I was released from jail I lived with a friend I had briefly gone to university with. This did not work out as I had taken on the persona of a criminal – a fairly significant piece of masking and one which enabled me to survive in prison but put me in a very negative position in the outside world. My share house arrangement fell through when my uni friends became anxious about my frequent drug use. I moved into a boarding house and then into a house occupied by my drug dealers. After a few months we all got evicted and I found myself homeless. 

Luckily I had friends from a theatre company who worked wth women prisoners. Thy found me a place in the country with a woman who ran a camp for school groups and also looked after young people who had ‘issues’ – like me. I was there for a few months and ended up in the psychiatric hospital, getting a diagnosis of schizophrenia. At this time I got in touch with my parents – the first time I had spoken to them in a long time. I moved back in with my parents for a year. While my parents’ house was a lot nicer and more stable than any I had lived at in recent years, it was still difficult. I felt like I was living in two worlds – the druggie and criminal and the dutiful child. I felt pulled in two directions and it was very challenging.

About a year after I moved in with my parents I got really unwell with schizophrenia again. I was delusional and thought prison was the cure for my depression so I committed crimes with the intent of going to jail. I spent the next three years in and out of institutions – psych wards and jails. My life was pretty hellish and unstable. In 2000 things changed. I accessed help for my mental illness and started to want a better world for myself. I decided to be ‘ordinary’ – by which I meant having an education, a professional job, a mortgage and a suit. These aspirations probably seemed ridiculous at the time but I stuck with them, enrolling in university just a few months after I was a released from prison.

Housing was a major problem for many years. I lived in crisis housing and in mental health residential programs. I got a public housing flat in 2003, staying there until 2007. I had a neighbour at the public housing flat who stalked me. She was jealous of any female visitors – including my mum – and made my life a living hell. The good thing about that was that she pushed me towards getting a full time job so I could rent privately. In an unlikely turn of events I got a public service job in 2007 and moved out of public housing feeling very relieved and excited that my aspirations for a better life had eventuated.

I bought my own home in 2008. This might sound wonderful and in a way it was, but it was also quite fraught. I could not afford a very nice or new home so bought a flat in a very old block. It had some significant maintenance issues which made me very anxious. So anxious in fact that in 2010 and 2019 the anxiety around my home caused psychosis. I hated this apartment and longed to leave. I finally did this earlier this year. I sold it and moved into a rental in the same 1970s block. While it was less stressful than living in the one I had owned the fact that it was in the same block heightened my anxiety. 

I moved in here on Tuesday and I keep finding myself walking around with a big smile on my face. My new home is just lovely and I am not at all stressed. I feel like it is my first ever ‘proper’ home as an adult.

A number of people have said I deserve to have a nice home after all that time and I sort of agree. Everyone deserves to have a nice home I think as it makes such a difference. I am extremely grateful for my home and look forward to my twelve months here. And I suspect I may renew the lease if I can!

The need for sensory accessibility and understanding

There are a number of conditions and experiences which autistic people often have in addition to autism. These include things like other neurodivergent conditions (e.g. ADHD, dyspraxia, dyslexia, Tourettes), alexithymia (or emotion blindness), prosopagnosia (or face blindness), interoception issues and sensory processing issues.  Almost every autistic person I have met has one or more of these things. I called them Venn diagram conditions as they overlap with autism but a person does not necessarily need to be autistic in order to have them. For example I have a good friend who has sensory processing issues but to my knowledge he is not autistic.

Sensory processing issues can be overwhelming and impact significantly on a person’s ability to navigate life. I have a number of sensory issues, mostly related to smell and noise. Having construction work going on can put me into a heightened state of stress. I have anxiety issues around home maintenance and I live in an apartment block. This means that when I hear a neighbour’s water running I have a combination of negative sensory experience and high anxiety. I sit in my home longing for the neighbours to stop running their taps. It is horrible. Smell is a big one for me too. I remember going out for breakfast with some disability advocates. My friend ordered an omelette with truffles shaved onto it at the table. I absolutely hate mushrooms of all kinds. The smell of the truffles was so awful I had to sit on a different table until my friend finished her omelette. The smell of truffles actually gave me flashbacks for about a month and I could almost feel the smell inside me. It was really horrible.

The thing about sensory issues is that they are unique to each person. The other thing about them is that most people do not have sensory issues so have no way of understanding what it is like to experience them. This means when I complain that a smell is horrible another person does not share the experience so will often dismiss my concerns. Sensory input is how we understand the world around us. It is our reality, how we make sense of the world. But what is real for me is not real for someone else. This can make it almost impossible to communicate effectively about how awful a sensory experience might be. 

Another issue with sensory processing difficulties is that quite a lot of the people who experience them are neurodivergent. And autistic and other neurodivergent people are a minority and face discrimination and disadvantage. This means that if we raise an issue with a sensory thing, we might not be listened to.This kind of invalidation of neurodivergent experience is rife and happens in a number of domains. This is often heightened if the person raising sensory issues is a child because children are often not heard by adults and neurodivergent children particularly so. You can no doubt imagine how upsetting and frustrating this is. 

Sensory distress can be extreme and make it impossible to do things that others take for granted, like going to work, school or even just being at home. I have a friend who finds most electric lights overwhelmingly unpleasant. They give her migraines and make her life really, really unpleasant She is so affected by lights that she wears a blindfold when inside and uses a white cane. To a person who didn’t understand sensory issues this would probably seem baffling and they may think my friend was being overly dramatic. These attitudes are really challenging when a person is trying to manage the impact of sensory issues and just make things more difficult. Basically if someone says something is too loud, smelly or bright then it is.

The workplace can be a sensory nightmare and it can be difficult for some people to an access reasonable adjustments at work for sensory reasons. That being said sensory accessibility in the workplace is the same as any other accessibility need such as ramps and lifts for wheelchair users. Employers are required to provide accessible workplaces and if that means sensory accessibility that so be it. Some people are unable to work at all without sensory interventions. This means that employers may miss out on the skills and expertise a neurodivergent employee might offer if given the right supports around sensory issues and more to the point, neurodivergent people might be excluded from employment.

There does need to be a lot of education around sensory issues. Sensory issues can keep people away from doing things that they enjoy and are good at. And it isn’t usually all that difficult to provide an accessible environment. I have a friend who wears a baseball cap to her job as a university lecturer to avoid glarey lights. I use the accessible bathroom at my work – partially due to gender reasons but also due to toilet smells being a major sensory issue for me. Society needs to become more sensory aware. I think that would be really helpful for so many people and it would be nice to not have to launch into a detailed explanation of sensory issues an instead just say ‘it’s too noisy’ without needing to elaborate.

Celebrating Ace Week – Being a proud asexual, non-binary, neurodiverse person

October 25-31 is Ace Week, formerly Asexual Awareness Week. I want to talk about sexuality, gender and autism and in particular asexuality.

I am an asexual, non-binary, autistic, ADHD, schizophrenic person. Funnily enough I talk a lot about all of those diversity experiences except for one. I rarely publicly talk about being asexual (‘Ace’). There is a reason for this and it comes down to prejudice, stereotypes and assumptions. 

There is pervasive ableist stereotype that all Disabled people are Ace. This is heightened for autistic people and people with Intellectual Disability. I spend a lot of my time challenging such stereotypes. This means I can feel quite uncomfortable about being Ace as I worry that people might see my Ace identity as a justification or validation for the ableist stereotype. This view can come from ableists and those who hold to stereotypes but also can influence other neurodivergent people. 

I also worry as an Ace that people will assume I am anti-sex. I am not at all anti-sex. I am very sex positive. I just don’t want to do it myself! That view that Aces are all prudish and sexually conservative is really unhelpful – and often absolutely untrue. 

The reasons I worry about being out loud and proud as an Ace actually do not relate to me doing anything wrong, despite my concerns. I should not worry about these things as they are related to ableism and bias rather than anything I am doing wrong – or any other Disabled and Ace person for that matter. We need to address these sorts of views because it is not fun feeling unable to share an important part of my identity – my asexuality – with the world. Aces have as much right to exist and to be happy as anyone else does. 

Being Ace is different for every person. There are varying experiences of asexuality. Some people identify as grey-sexual. This means that they have some interest in sex but still identify as Ace. There is a related set of identities around asexuality and that is romantic attraction. Some people (including me) are asexual and a-romantic. This means we are not interested in sex or romantic relationships. Some people are asexual but have romantic attraction and relationships. These people want / have a relationship but are not interested in sex. Then there are grey-romantic people who have some interest in romantic relationships but still identify as part of the a-romantic group. And within each of these umbrella terms there are infinite identities – I like to think there are as many identities as there are people who have them.

As with all these things, the way a person identifies is correct.

Romantic and sexual attraction are very different things to gender identity and expression or biological sex characteristics. Sometimes people will conflate gender with sexuality or romantic attraction but that is not correct and is unhelpful when someone is trying to understand who they are in terms of gender, sexuality or biological sex. 

Being Ace is an evolving thing for me. Sometimes I find myself having a moment of romantic attraction to someone on TV, usually a person with an androgynous expression. But this doesn’t make me any less a-romantic as that is my identity and how I identify is up to me and is correct. I have a bit of a ‘thing’ for dishy physicist Brian Cox but I am still a-romantic. It’s hard to explain but I guess it comes down to identity not being a simplistic thing. 

As an Ace and a-romantic person I have a very big advantage in that I have no interest in or need for a partner or for sexual activity. This makes life a lot easier! I know a lot of people within our community who really struggle with being single and finding it difficult to find a partner. I am so grateful that these things are not an issue for me. Being uninterested in relationships and sex also leaves me with a lot more time to do my writing and advocacy work! I am learning to be an out loud and proud Ace. I think it is interesting that the final piece of my identity that I choose to share is this one but I am learning to embrace it and hopefully others who are Ace and / or a-romantic will benefit from my sharing these things. So happy Ace Week everyone! Embrace and celebrate your awesome Ace self – or your awesome Ally self! 

The DSM 5 autism criteria rewritten from a neurodiversity perspective

I recently had a look at the autism criteria in the DSM 5 (the criteria used to diagnose autism in a number of countries including Australia). It made me sad as it was so strongly focussed on deficits and negatives. I know it is for the purposes of accessing support so it probably needs to focus on challenges rather than strengths but it still makes me sad. 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.

Text in blue is what is in the DSM and text in black is what I have written. It si a bit tongue in cheek but there is a serious side to this as well. Autistic pride all the way! Nothing abotu us without us and other positive and radical sentiments.

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 disorder, 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 or just be really good and thoughtful friends and partners.
  2. Interacting in different ways. Being honest and straightforward and not generally using things like manipulation or sarcasm.
  3. Approaching relationships differently to allistic people. Autistics 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 (Brilliant) May be experts in a particular area, have a strong focus 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 or lots of other things! Also, the interests can form an excellent self-soothing tool should the person be depressed or overloaded.
  4. Exceptional, accurate and perceptive sensory skills. This is highly useful in areas like being a chef or a musician.

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 resilient and resourceful.

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

D (pretty Damn awesome) 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 a 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) Autists are Autists. They are amazing as is and defy this sort of diagnostic negativity through their brilliance.

Individuals with a well-established diagnosis of autistic disorder, Asperger’s disorder, or pervasive developmental disorder not otherwise specified should be given the diagnosis of autism spectrum disorder. Individuals who have marked deficits is social communication, but whose symptoms do not otherwise meet criteria for autism spectrum disorder, should be evaluated for social (pragmatic) communication disorder.

Autistics should be given a ‘diagnosis’ of human being along with all the other human beings. Functioning labels do not help but kindness and respect do. 

*Disclaimer: This is not meant to be one of those ‘all autistics have superpowers’ posts. It is more focussed on countering deficits thinking. We all have different capabilities and interests – we all have our own different kinds of brilliant – and that is a good thing.

Autistic burnout – experiences and strategies

One thing that a lot of autistic people experience is burnout. In my experience burnout is debilitating and makes everything in life difficult. It relates to depression and anxiety and makes doing things that I usually enjoy very challenging. Burnout relates to a response to an ongoing overload of input – social, sensory, work and/or emotional. Burnout can be seen as a response to living in a world which is not very respectful, supportive or understanding of autistic people and our needs and experiences.

I don’t get burned out much thankfully. I will recount one time that I did experience significant burnout. It was in 2015 and my career as an advocate was starting to take off. I was very excited by this and wanted to do absolutely everything which came my way, opportunities-wise. I was also working full-time in the public service and had just moved teams. I loved my day job but it was difficult getting around all the new content and fitting in with my new team. I didn’t want to say no to any advocacy opportunities. I was very excited by my autism advocacy work and really enjoyed all the different things I was doing – presentations, mentoring and coauthoring The Guide to Good Mental Health on the Autism Spectrum. Lots of friends and advocate colleagues expressed concern around my absurd workload but I didn’t want to listen. I wanted to do EVERYTHING!! I couldn’t see any issues with my mental health or my energy. I was Yenn and I could take on the world!

It turned out that I could not take on the world. I may have escaped burnout from my immense workload alone – who knows – but the final straw was some interactions I was having with a young autistic man. This man had contacted me asking for advice and support. He messaged several times a day. He was very negative and angry about ‘neurotypicals’ – all of them apparently! Interactions with this man were extremely draining. Whenever I heard the message alert tone on Facebook my heart sank as I knew it would be this man. My anxiety was off the chart. Even now I have the message alert tones muted! I didn’t want to block this person as I thought that would be rude, so I put up with the angry and negative messages. The young man was also repeatedly asking me to do sexual things. It was so stressful. 

The burnout came in in earnest during this time. I had a conference in Brisbane. Normally I love a good autism conference but at this one I was heavy with overload and anxiety. I remember sitting at the airport on the way home feeling on the verge of meltdown. My flight was delayed by two hours and I was totally, utterly done. I just wanted to stop doing anything and sleep for a long time. It took several months for me to come through the burnout. I would like to say that I said no to a few things. I didn’t really but I did less things in other ways and gradually over time the burnout dissipated and I was able to take on more work again. Now I also factored in planned downtime so as to avoid further burnout.

I had an advocate friend recently reflect that I don’t experience burnout so much because I don’t mask. I am not putting all my effort into acting allistic so it leaves energy free to do all the things I do. I like that – being out loud and proud as a protective factor to avoid burnout. There are a few other protective factors I can see. One of them is simply saying ‘no’. It can be hard to do but it is liberating. Saying no falls within that category of assertiveness and boundaries. It took me over 40 years to be able to set boundaries and say no. I can attest that the ability to say no and set boundaries increases with practice. You do not owe others anything so saying no is actually OK and you don’t need to justify yourself or feel guilty.  

If you do find yourself getting overloaded and facing burnout then make more downtime if you can. Stop doing things where possible. Look after yourself and be good to you. When I was in burnout the best thing I could do was to do things which didn’t have an output. Limited social time – especially social time with allistic people – helped too.

Another protective factor is the block function on social media, phones and email. With the angry young man who was repeatedly messaging me I did eventually block him and it was the right thing to do. The block function exists for a reason. Once again your responsibility is to yourself rather than difficult and triggering people on social media. Block without feeling guilty. Block, block block if you need to! If you are approaching or are in burnout, self care is really important too. Do things which make you feel happy and which relax and ground you. 

Burnout is something that autistics often experience and it is really unpleasant and difficult. There are some protective factors which can help though. My lovely friend and coauthor Emma gave me a great gift – a buzzer that says ‘no!!’ When I am asked to do something which involves me taking on too much I just press the ‘No!!’ buzzer and decline the invitation. It works for me!

“That’s not OK” – Micro aggressions and autism

Google tells me that micro aggression is a term used for brief and commonplace daily verbal or behavioural indignities, whether intentional or unintentional, that communicate hostile, derogatory, or negative attitudes toward stigmatised or culturally marginalised groups.

Autistic people are subjected to micro aggressions frequently. I want to unpack a few of them here and provide a response.

“You don’t look autistic.” 

I have heard this one countless times and it is particularly nonsensical. I have met thousands of autistic people and can assure anyone responsible for this statement that there is no autistic ‘look’. What are autistic supposed to look like anyway? I often want to counter this statement with ‘well you don’t look ignorant, but you are!’ I usually opt for telling them autistic people are all individuals and we look different just like everyone else.

“Don’t call yourself autistic. You are a person with autism”

This one happens with well-meaning types and is extremely frustrating. Identity first language (‘I am autistic’) differs form person first language (‘Person with autism’). Many autistic people use identity first language as we feel autism is an integral part of being us. We cannot remove our autism. You can’t leave it by the front door and pick it up on your way home! I view my autism as a key part of what makes me me and I am proud of it. I use identity first language to reflect this. A person’s identity is their own and well meaning people telling us how we should identify is insulting and rude, and also can be viewed as ableist as it is abled people telling Disabled people that they are identifying ‘wrong’. There is an assumption that we need to be told how to identify. This one really irritates me. 

“You could pass for normal”

I was actually told this at the launch of a book I wrote based on ideas of neurodiversity and autistic pride! Needless to say I was horrified and blocked the perpetrator from my social media because, well ick! Normal is a problematic concept anyway. Normal suggests there is a pinnacle of human experience and autistic (and Disabled people generally)  are at various points of deviation from this apparently ‘better’ state of being. Normal gets against the idea of autistic pride. Normal suggests we are broken and useless. I hate normal. Making a statement that I could ‘pass for normal’ is horrific. I am happy being who I am. I don’t want to be normal, whatever that is. I responded to the person at the book launch by saying just that – I don’t want to be normal and I am proud of who I am. 

“My (insert relative) is really autistic, not high functioning like you”

Ugh. Functioning labels for autism are really fraught. ‘High functioning’ is often sued to say that a person has verbal speech and is academically capable. ‘Low functioning’ is typically used to mean a person does not use verbal speech. The labels are actually very unhelpful and meaningless. There is no diagnostic category  of high or low functioning and they are usually used as a shorthand without a lot of consideration. We are far better off without functioning labels. They tend to lead to harm and ableism, such as the statement above. I have had parents tell me that I don’t speak for their child because I am too high functioning. People given the high functioning label often have significant challenges and can be denied support because they seem to coping well but for many of us the appearance of high functioning comes as the result of trying to fit in to be socially accepted and it is exhausting and traumatising. Functioning labels also reflect that idea of deviations form ‘normal’ and as such are anti-neurodiversity. We are autistic. We face challenges, we have strengths and skills and we are valid human beings regardless of what functioning label is slapped on us. And no, I don’t speak for your child. I don’t speak for anyone. I just share my thoughts in the hope they resonate with others and lead to a better world for autistic people. 

“We are all on the spectrum somewhere”

This one is probably the one I have heard most frequently and it is a doozy. People saying this seem to be mostly saying it out fo a desire to empathise with autistic people but in reality it is a very unhelpful statement. Saying we are all on the spectrum negates and dismisses autistic experience. It is like an act of erasure. If we were all on the spectrum then there would be no such thing as autism, it would just be called being human! You can; not be a little bit autistic similarly to being unable to be ‘a little bit pregnant’.

I hope this has been helpful. Many micro aggressions are unintentional or done in an effort to empathise but they demonstrate ignorance and at times profound ableism. I wish I didn’t have to spend so much time educating people! I think sharing information on why these statements are unhelpful is one way to help address them. 

Autism and online safety

Content warning: Sexual violence and suicide

I have been the target of a number of scams lately so I thought it timely to post about safety online – from protecting your bank balance to your mental health.  Cyber safety covers a number of areas – trolling, predatory behaviour, dating scams, hacking and identity theft. While everyone is potentially at risk, autistic people can be particularly susceptible. This can be because we tend to be honest and up front and as such struggle to imagine others are not trustworthy. We often take people at face value. This is a great quality in some ways but when someone is trying to scam us it can be a challenge.

One of the scams I had recently was on my phone. I got a text message saying my bank account had been locked and I needed to click a link to unlock it. Normally I am pretty savvy to this kind of thing but in this instance I had just sold my property and had a lot of money in my account. The anxiety that someone had stolen my money meant I was hyper vigilant about my bank account and almost fell for the scam. Thankfully I didn’t click the link but I almost did. A lot of these scams won’t fool someone who is in a good frame of mind, has had enough sleep, isn’t anxious…. Of course many of us are in a space where we are vulnerable to scams which if we were in a perfect space we would not dream of falling for.

The scam I am most commonly attacked by is the social media dating scam. I will get a friend request from – usually – a profile of an American serviceperson complete with a photo of some ageing white man with medals. On the one occasion I added one of these I got a message in the space of about two minutes saying how I was beautiful. My response was to block them instantly because ick. Presumably most people don’t think it is real but for some people who are lonely and a bit naive they might fall for it. My understanding is that the person will end up asking for money. If anything looks too good to be true online then it probably is.

The most sophisticated scammer I ever had was someone who contacted me from a developing country and said he had kids who had disabilities. He asked me to provide him with any resources in his country that might help his kids. It actually seemed legit so I did some research and sent him details of appropriate organisations. We messaged for a while. He seemed quite nice. Then he messaged me and asked if I could buy him a computer. I responded saying that if he had Facebook presumably he had access to the internet. He got more and more persistent. I blocked him on Facebook and then he sent me an email. I blocked his email. I got emails from him in my spam folder for another three years! It certainly made me cautious of connecting with strangers online!

Predatory behavior aimed at children is particularly heinous and has the potential to do horrific damage to kids and leave them with a lifetime of trauma and misery. I can imagine how stressful it must be to be a parent trying to protect their kids from some of the horror that can await online. Some of the advice I have seen about this is to not have devices in private areas of the house so parents can be aware of what kids are viewing and if they are conversing with anyone. I remember when I was a child a man tried to grab me as I cycled past. I thought this event was mildly interesting and told my mum what had happened and understandably she had a very strong protective response. I had no inkling of what might have happened had I not stayed on my bike – why would I? I had not been told much other than ‘stranger danger’ which seemed to me to be quite an abstract concept. I don’t think it is about terrifying your kids with horror stories of what might happen to them but it is very important to ensure autistic kids are aware of what they need to do around safety online.

I want to finish with trolls. (Gee wouldn’t it be good if we could actually finish with trolls forever!!) As an – albeit quite minor – public figure I spend a lot of time online, particularly on social media and I get my fair share of trolls. Trolls are dangerous. People have taken their lives due to trolling. I really hate trolls actually. You don’t need to be well known to get them either. I get them and I do not exactly have the level of following of Taylor Swift! One thing which happens when I get trolled is that my supporters often respond in my defence. This is just lovely and i wish it would happen whenever anyone gets trolled. It is actually quite  amusing seeing trolls getting all defensive after 30 of my social media friends shoot them down in flames! When I see trolling I would hope that my response is always to come to the defence of the person being attacked. 

Our online world is such a useful thing and for autistics online is often particularly important. As with anything there are risks as well as benefits. We need to support one another online – be that protecting our kids from predatory behaviour, defending someone being trolled or sharing safety tips with friends who might be too kind to imagine others have ulterior motives.