Autism and mental illness: offering support not stigma

I have wanted to write this post for a while but somebody contacted me with a concern and it spurred me into action. The concern the person raised related to some people in the autism community being discriminatory around mental illness, in particular psychosis. This topic is of key interest to me because I am an autistic person with schizophrenia (well technically schizoaffective disorder but few people outside of psychiatry know what that is!!) I have had a number of psychotic episodes and know that there is a lot of misinformation about the condition and definitely a lot of prejudice. While I haven’t faced a lot of prejudice within the autism community myself I know it is out there.

My previous blog with my former name was called ‘Jeanette Purkis All Things Autism and Mental Health’. I regularly had people pulling me up and telling me that autism is not a mental illness. I am actually aware of that fact. Autism is a neurological condition whereas mental illnesses relate to psychological issues (thinking and behaviour) and brain chemistry (neurotransmitters – things like serotonin and dopamine). The reason for the title of my earlier blog related not to me conflating autism and mental illness but to the fact that I am an autistic person with a mental illness. 

I sometimes have autistic people contact me and state that autistic people do not have mental illnesses. This seems to come from an almost elitist view that autistic people are ‘pure’ and mental illness somehow contaminates us. It is as if we are beyond mental illness. This is nonsense. Autistic people are actually more likely to develop a mental illness than allistic people. This is due to a range of factors including us experiencing trauma at high rates. There is research being done on prevalence of mental health issues among autistic people. Anecdotally, most of the autistic people I know have some kind of cooccurring mental illness.

In terms of schizophrenia, there are some unhelpful views among clinicians. For one this schizophrenia can be an incorrect diagnosis given instead of autism. I have been on antipsychotic medication for 25 years and I can attest that you wouldn’t want to take those medications if you didn’t need to! Misdiagnosis of schizophrenia instead of autism seems to happen more to men but can happen to other genders too. My schizophrenia diagnosis does seem to be correct but I had an issue with another unhelpful attitude among clinicians. A former psychiatrist who was treating me read a paper saying that autistic people could not have schizophrenia. The author of the paper had the idea that autism and schizophrenia were mutually exclusive. This meant that the doctor didn’t take my mental illness seriously. I asked to change one of my antipsychotic mediations and, because he thought I did not have a psychotic illness, he did the medication transition very quickly. Guess what? I had a major psychotic episode. Psychiatrists scare me because they have so much influence and power over people in their care. And I am fairly certain that autistic people can also have schizophrenia regardless of what some researcher thought!

Stigma is a big issue for people with psychotic illness. Even the word psychosis is mistakenly used to describe someone who is violent. I cringe every time I hear a character in popular culture described as psychotic when what is meant is that they are violent or unpredictable. Psychosis doesn’t necessarily equate to violence. It is a mental state where reality doesn’t make sense. People might get paranoid thoughts or think strange and frightening things. Many people experiences voices, often saying threatening things. In my case I hear people insulting me and saying mean things and I also hear my name being called when in fact it isn’t. I also see things – often ghosts or distortions of real objects. I have intrusive thoughts where I am commanded by a will that is not my own to do some action which I really don’t want to – often related to self-harm. Psychosis involves inhabiting a sort of alternate and usually very scary universe. It is more a reason to support a person than to judge them. 

A lot of the stigma I experience as a person with schizoaffective disorder comes from myself. It took me seven years to accept I was autistic but my mental health diagnosis is 25 years old and I still haven’t accepted it properly. This stigma is probably based in the stigma society has but it makes my life very challenging. On Monday I am starting on an anti-psychotic medication called Clozapine. This is a pretty heavy duty medication and only has one use – treating treatment-resistant schizophrenia. Anticipating the new meds is causing me to face up to some of my self-stigma and it is hard. Nobody deserves stigma. I know I don’t. For autistic people with mental illness life can be extra challenging and there is no need for additional discrimination from people within our community. I want to see a world where people don’t contact me concerned about being discriminated against due to their mental illness. An illness is a reason for support and understanding not for discrimination and stigma. Those of us in the autism community also face stigma and discrimination which I hope helps us to demonstrate that support and understanding to those with a mental illness amongst us.

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Tribute to Mr Kitty

This is a hard post to write. It is a tribute to a person that I loved more than anything. He just happened to be a person who was a cat but that does not diminish the immense love I felt for him and the vastly important place he has and will always have in my heart.

Mr Kitty came into my life just over seven years ago. My friend the cat rescue person had been saying I should get a cat for some time. My mental health had been very poor and my friend thought a cat would help. I kept finding excuses to not get a cat but one day changed that. I saw a little tabby cat on a wall near my home. I gave this kitty a put and she purred and smooched my hand. I realised that that while  was patting the cat I felt good. I was convinced and asked my friend to bring me a cat. She did better than that and brought four carriers – three of them full of kittens and one with a big black cat who apparently didn’t get along with the other cats and had to live in the bathroom alone. The kittens were cute but I didn’t want any of them. Finally the big grouchy black cat came out of his carrier. Instinctively I picked him up and held him close. At that moment we bonded. I was his and he was mine.  I told my friend to take the kittens home with her.

I called him Mr Hieronymus Bosch Kitty Purkis II which I shortened to Mr Ronnie. I had loads of pet names for him including one which stuck and became his ‘official’ name – Mr Kitty.

I loved him from he moment I met him. He became my soulmate, my witch’s familiar. He slept on my bed every night. He would sleep next to me on the other pillow. I would put my arm around him and hold his little paw and we would go to sleep. 

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Because he had been a stray he was always wanting food. I would say to people that he acted like he had never been fed in his life despite the fact I fed him very regularly. It used to break my heart because I would leave him cat biscuits when I went to work and when I returned they would still be there. He was anxious that I wouldn’t come home. After about two years the biscuits would be gone when I returned in the evening. He had finally realised that I would always take care of him.

I have a movie night at my home, Whimsy Manor, where I watch movies with friends. Mr Kitty was always the star of the show. He would sit on any recently-vacated chair and refuse to move when the human occupant returned. He tried to climb into handbags and on one memorable occasion got VERY friendly and intimate with the handbag of one visitor who had two cats! Mr Kitty loved movie night.

Mr Kitty had a lot of human friends. People who didn’t usually like cats liked him. He was a character. I never met a cat like him. He often seemed to me to be very un-catlike, like his soul had been here for a long time and he was something beyond a cat. He had depth to him. I never saw him as a pet. If anything he owned me. He was a gift from the heavens. That is the only way I can describe it.

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I travel a lot and have put him in boarding many times. The boarding place I used – Curtin cat Care – was amazing and they loved him so much. When I went to pick him up he would miaow so loudly on hearing my voice. I would pick him up and he would be so happy he would feel noticeably lighter than usual. The cat boarding staff said they never saw a bond between a cat and their human like ours. I also sometimes had friends feed him if I was only away briefly. They told me he would check the door after they came in, presumably to see where I was (‘the real human’).

I always said I would prefer for him to pass first. I am human and understand death so when he went I would understand he would not be coming back whereas if I passed he would be forever looking at the door expecting me to walk in.

I have been in hospital and residential services for the last few months due to my mental health issues. Mr Kitty was in boarding for some of that time and looked after at home for some of the time. Recently he was staying with a friend at their house. The friend contacted me on Friday expressing concern for his health. They took him to the after hours vet and the news was very bad. He had a serious heart condition and a blood clot in his leg. There was little hope for him and treatment would involve a long stay at the vet hospital and he was always terrified at the vet. I didn’t want to put him through pain and fear for a small chance of survival so I made the awful decision to let him go.

Yesterday I held him in my arms and told him what a good cat he was and how I loved him more than anything, I thanked him for all he gave me and kissed his beautiful head. The vet explained what would happen and I held him as he passed. I stayed with him for some time afterwards. I kissed him again and then said goodbye. His little paws were cold. I was heartbroken, I still am and will be for a long time I think. The vet said I made the right choice and she would have done the same if her cat was in the same situation. 

I keep doubting he is gone. It doesn’t feel like he is gone. I know going home to an empty house will be the hardest.

So good bye and huge thank you Mr Kitty, the most singular and amazing cat I have ever had the privilege to know. You wonderful furry smooch monster.  The seven years we had were gold and I will remember you with love forever. You will always be in my heart. I hope that wherever you are there are moths to chase, a comfy bed and lots of cat food. I know my life is infinitely richer for you having been in it. Sorry you only had eight years in this world. I miss you more than I can express. 

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A lived experience guide to radical acceptance 

The other day I remarked to my psychiatrist that I have needed to practice a lot of radical acceptance lately. To find out why, please join me in my time machine and we will go back to last October…   

I had been working in a new department for almost six months and was absolutely loving it. I was working on an autism and employment program and we had just hired our first employee. I had 50 days of sick leave, two weeks of annual leave and seven weeks of long service leave available to me and I thought it would have to be a pretty epic catastrophe to make me use all that leave. 

I was planning to sell my unit (known to its friends as Whimsy Manor) and was delightedly perusing the swanky properties that my obsessive overpayment into my mortgage would allow me to purchase easily. My advocacy career was off the chart with talks and book deals and a growing profile. Mr Kitty was extra smoochy. Life was good in the Yenniverse. 

I had a couple of plans which I knew might be challenging but was fairly certain I could navigate them with my mental health intact. The first was to renovate my kitchen. Home maintenance is one of my biggest triggers for extreme anxiety, A leaking shower in 2010 had led to a psychotic episode followed by over two years of recovery. I knew getting my kitchen done had the potential to result in similar issues to 2010 but I knew I could take it. The other thing I was slightly worried about related to a diagnosis. I had wondered whether I had ADHD for some years and last year I decided to find out. I had an assessment interview with my psychiatrist and he wrote me a script for ADHD meds. These are essentially amphetamines. My worry about this was that I have a psychotic illness in addition to autism and most medical literature suggests that people with a psychotic illness should not take amphetamines. My psychiatrist disagreed and told me he had a few patients in similar circumstances doing well on ADHD meds. I filled the script and was amazed at the results. My focus was incredible! I could type better than I had ever been able to as my brain and hands were aligned and working at the same speed. 

Fast forward a week and my kitchen was the cause of intense anxiety. The special sink ordered had not arrived and I was in a state of constant panic about there being taps but no sink. What if the taps turned on somehow and flooded my house? I was in a hell of high anxiety. I had stopped taking the ADHD meds because they were making me really paranoid. Too afraid to leave the house in case the kitchen taps turned on and flooded the place I worked from home. On Thursday 24 October I logged on to my work computer. Five minutes later I felt my mood perceptibly drop and the world became an alternate reality. I called in sick. Later that night I called the mental health crisis team and was admitted to hospital. ‘It will just be a short admission’ I thought. It was but it was soon followed by five other admissions. I became institutionalised. Mr Kitty spent months in boarding and is now in foster care. 

I am now in the rehabilitation hospital for a period my doctor described as ‘probably being months rather than weeks.’  I have now run out of paid leave at work and am hoping for income protection insurance to come through or I will be living off my savings until I can get back to work. I am preparing to go on a medication called Clozapine which is a heavy duty antipsychotic medication with potentially very dangerous side effects. It is meant to be very effective with kind of issues I have but it is also very sedating. I have some concern I may not be able to return to work. The minor concern I had about the ADHD meds and the kitchen renovation in October have turned into what could very reasonably be seen as a complete and total disaster. 

I have spent a lot of the past four months worrying about my future. I was certain I would be back at work and full-time before I ran out of leave. I was certain I would recover completely and be able to do everything I did before I got unwell. But I can’t actually know that. I am at a point in my life where everything is up for grabs. I could be looking at a future where I cannot work at all, where I am constantly unwell and miserable and scared or I could be looking at a future where I am strengthened by this experience, back at work and changing the world. It could be one of any number of other futures too. I honestly don’t know. I now recognise that much of my future is beyond my control.

And that is where radical acceptance comes in. I was trying to force a particular future and change things that I can’t change and it was making me stressed and miserable. I am now trying to let things be and respond to whatever comes along in the most effective and kind way that I can. Radical acceptance is not about saying that whatever awful thing happened is OK and it is not about saying you deserved something bad. Radical acceptance is about seeing the situation you are in, recognising what you can change and accepting that is how things are and then moving forward as best you can. It is a great way to counter regrets and dwelling on the past. To my mind, radical acceptance is the key to mindfulness. It is a tricky skill but the situation I am currently in has allowed me plenty of opportunity to practice that skill! 

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The value of being vulnerable

Content warning: Discussion of mental illness and suicide

I went to the hairdresser today and got a cut and my blue fringe re-blued. A hairdresser asks questions about your life and mine was no exception. I told her I have been off work for 14 weeks due to mental illness but that I am getting stronger and working towards getting back to my job and my life. I barely hesitated before telling her these things. I often joke that I have made a career of oversharing and I do talk about topics most people avoid. Why would I do this?  Being vulnerable has a lot of risks. Baring your soul to people can result in discrimination or being ostracised. Social norms strongly dictate that talking about such matters is taboo and will lose you friends. Funny that because I have a lot of friends and lovely genuine ones at that. In fact I suspect one of the main reasons I have so many good friends is because I can be vulnerable and let my guard down. 

There are some distinct benefits to being openly vulnerable. I think that the biggest one is the impact it has on others. One thing about me at the moment is that I am a public figure – OK a very minor one but I do have a following and some people look to me for leadership. I recently posted a photo of me holding my beautiful furry friend Mr Kitty. I was wearing a t-shirt and my forearms were showing. I have fairly obvious self harm scars on my forearms. I thought nothing of posting the image – just a picture of Mr Kitty and me looking lovingly at each other. I posted it on Facebook and a person responded saying how much it meant to them that I had posted a photo showing my scars because they had scars too. It was a bit of vulnerability which benefitted someone which I had no intention of doing. It just happened because I am willing to show my scars.

I think talking about mental health issues gives others the license to share their own stories and that sharing can be very powerful. It can help individuals feel less alone but it can also help social change by shifting the tone of what is considered OK to discuss. We have seen this recently with some sports stars talking about their experience of depression. While talking about mental health can be a big positive, not talking about it can literally be deadly. If you are suicidal but you are unwilling or feel unable to talk to someone about it the risk is far greater. I want a world where people can feel comfortable talking about issues like mental illness and suicide and expect – and actually receive – respect and care in response. 

Another reason I talk about my mental health is because it is a big part of my life. I don’t feel it is shameful our something to hide away. It is part of what makes me who I am and it takes up a lot of space in my life so why wouldn’t I talk about it?

I have some criminal history from the mid-late 1990s and I talk about that as well. At first I talked about it as a means of catharsis as it was a traumatic time but now I talk about it to help others. I am on the reference group for the ACT Disability Justice Strategy and in that forum my criminal history as an autistic person with a mental illness is extremely valuable.

I have had so many people whisper to me in office corridors that they have schizophrenia or bipolar but ‘please don’t tell anyone’… you would not believe it! I want a world where people don’t feel that they have to whisper that in corridors. I want a world where everyone can feel free to be vulnerable about their life and their mind because it is a good way to be. For me, vulnerability is a huge part in my advocacy but it is also a major protective factor in my life. I am always happy to share and I hope when I do that others feel a sense of relatedness and that they are not alone.

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Myths and nonsense

This post will dispel some of the foolish statements that crop up all too often… Some relate to autism and others to diversity more broadly. I wish I didn’t have to write a post like this!

‘We’re all on the spectrum somewhere’

This one is very prevalent. Sadly it is often said with good intentions – trying to have some fellow feeling with autistic people. In fact the opposite is true. It is a statement which belittles autistic experience and dismisses our reality and culture. If everyone was on the spectrum somewhere there would be no autism diagnosis it would just be called being human. For many of us our autism is a key part of our identity and to have someone who is not autistic  basically claim to be is an invalidation. I guess its an example of that adage that the road to Hell is paved with good intentions.

‘You don’t look autistic’

What the crap does autistic look like? Autistic people come in all colours, shapes and sizes. We look like ourselves. There is no autistic ‘look’. I often ask people who say this to define what autistic looks like and why I differ from it. 

‘My child has ‘real’ autism’

As an autistic advocate I get this one scarily often. It goes to the idea of functioning labels for autism. Apparently some autistics are more ‘severe’ than others. I tend to find that this given the ‘severe’ label are non-speakers. You cannot compare different people’s experience of autism and tell someone that they have no right to talk about autism because they aren’t ‘severe’ enough. The struggles I face as a verbal autistic who can do everyday stuff like hold down a job are pretty significant too and the act of doing those ’everyday’ things takes a huge toll. You cannot compare the challenges of autistic people – or any people – as you do now know what is going on for them.

‘You can’t say you are autistic. Yours is very mild’

This was actually said about me by a manager many years ago. Highly insulting and goes to the point on functioning labels above. Who gets to decide if my autism is ‘mild’ and what does ‘mild autism’ even mean? Just ditch the functioning labels everyone. They do more harm than good!

‘I’m not a racist but…’

Not an autism one but a doozy of ignorance and bigotry. This statement is ALWAYS followed by a nasty piece of racism. Basically anyone who says this almost certInly IS a racist. 

‘Autism? Isn’t that like being a psychopath?’

I had someone actually say to me once ‘isn’t autism like being criminally insane?’ My brain went into overdrive at this point and I am surprised it didn’t explode! These views that autistics are all dangerous criminals or that we all lack any empathy or human connection are really dangerous. As an advocate this kind of thing always gets to me because it sets back our movement so much. Some autistic people do commit crimes for a variety of reasons but they are a small minority of the autistic population. And far from being psychopaths, many autistic people are kind and thoughtful and have a keen sense of ethics and respect for people and nature. Some autistics do have issues with consequences and some get involved with the ‘wrong crowd’ but these factors do not make them psychopaths.

‘Non-Binary? That isn’t a thing’

Non-binary gender is definitely a ‘thing’ or why would there be so many non-binary people out there (including me)? Just because a description for something is relatively new does not negate its validity. I can vouch for myself and say that my non-binary identity is a key part of who I am and that coming out was one of the most liberating things I ever did.

‘Some of my friends are [insert demographic group the person is being rude about here]’

Firstly this is probably a lie. It is unlikely they have any friends from the group they are putting down as why would someone from an oppressed group want to hang out with a bigot? Secondly if a person has friends from a particular group then why are they being prejudiced about that group?

‘Equal marriage upsets God. That’s why there are bushfires’

Oh please! This is the most ignorant thing I have heard in a long time. The recent bushfires were – to my understanding – caused by a range of factors including drought and climate change. It wasn’t God that caused the bushfires but more likely influenced by people though burning fossil fuels and polluting and things like that. Also why would God wait for a couple of years after the marriage plebiscite to start the bushfires? Was he checking out how things would go before acting? Just utter silliness! And anyone who believes in a supreme being that is supposed to be caring and good but then gets snippy about some people demonstrating their love and burns half the country might want to rethink who they worship because that doesn’t sound like a very nice supreme being to me.

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Dispelling the empathy myth – hyper-empathy and autism

I am often correcting people who believe the myth that autistic people lack empathy. One of the many things I say to refute this myth is that many Autistic people possess something called hyper empathy. Hyper empathy is where a person can experience the emotions of those in the vicinity almost as if by osmosis. It is very common amongst autistic people. 

I have a number of experiences of hyper empathy from my own life which illustrate the phenomenon.

When I was a child I had a friend whose father passed away. I found it unbearable to be close to her as I would experience her raw grief. I thought I must be a monster for not wanting to be near my friend when she was grieving. I believed it meant that I lacked empathy when in fact quite the opposite was true. Often Autistic children (and adults) will distance themselves from a friend or relative who is going through a tough time as a kind of self protection. If they are near a person in pain they feel the pain themselves and it can be unbearable.  

My hyper empathy has not lessened in adult life. I had a work colleague a few years ago who was extremely angry and unpleasant. I could feel her anger coming up the corridor long before she was in view from my desk. Her anger was like a tangible thing invading my mind. I liked that I got some time to prepare before she turned up and directed that anger at me – which she often did! I have an Autistic friend who accompanied me to a large event I was speaking at a few years ago. The audience was around 1300 people. I mentioned hyper empathy and being aware of the emotions of those around us to my friend and she told me she could feel that a person in the middle of the audience was having a really hard time and was very sad. So far from the stereotype of emotionally dead people who all lack empathy, Autistic people are in fact often extremely perceptive and aware of the emotions of others.

As many of my regular readers know, I have a mental illness which results in the need for hospital stays from time to time. I have said to my psychiatrist that I would prefer to be miserable at home with just Mr Kitty as company than be miserable among a ward full of other miserable people. Hospital is horrific for me and one of the main reasons for that is that in clinical settings I pick up on all the sadness, confusion, fear and anxiety of those around me. I am also a very caring person so I get a double whammy – I worry about the welfare of my fellow patients and I feel their misery when they are having a hard time. It results in me being very stressed in inpatient settings.

Allistic people don’t often understand hyper empathy which can mean that they dismiss it. I see it as part of what forms autistic culture – a mostly autistic experience which fellow autistics are more likely to relate to and allistics might not quite ‘get.’ I always find it telling when someone says to a room full of autistics that we lack empathy. The response is usually pretty emphatic and they are set right, but the empathy myth is a prevalent one and one we need to refute whenever it comes up. The empathy myth goes to ideas of autistics being somehow less human than others and as such is a very dangerous thing. The experience of hyper empathy is a good way to refute the empathy myth but not many people know it is a ‘thing.’ I often mention hyper empathy to other autistics and they tell me they have never heard of it – and then usually go on to tell me that it describes them! We need to get information out there on these topics and dispel that myth that we lack empathy once and for all as it is harmful and invalidating to Autistic people and our experiences.

Can we please just ditch the myth that autistc people lack empathy?

Our own worst critics – reconciling past ‘shame’

I have several scars on my left arm from self-harm in the 1990s. I have spent the past twenty years hiding them, worried that people will judge me or worse still ask probing questions. I have always felt ashamed of my scars. I am currently staying in a residential program for people with mental illness. There is a tattoo shop nearby which has good reviews. Up until very recently I planned to get my scars covered with a tattoo. This seemed a good approach to addressing the shame and judgement issue, but the other day one of my fellow residents made me change my thinking. I told her about my plans and she immediately exclaimed ‘don’t be ashamed of who you are. Be proud of yourself. Your scars are part of what makes you you’ I figure she had a very good point and decided not to cover my scars but to  cherish them.

This raises an issue many people have around shame at past decisions. We all make choices we are not proud of and I imagine everyone has something in their history that they are not happy about. It seems easier to hide these things and keep them from those we love and care about but actually they are part of what make us who we are.

Along with my scars I have a personal history which can be viewed as quite shameful. I spent three and a half years as a prisoner in the 1990s. After I started to live a more respectable and positive life I was highly secretive about my then very recent past. As a university student I invented whole years of personal history to avoid mentioning I had been in prison. Being a very honest person I ended up telling my university colleagues about my past not long afterwards and it was a big relief. In fact nobody really cared. If anything they thought it was interesting which just goes to show that the thing you think is shameful and mortifying may be viewed a lot more sympathetically by others. You might be highly anxious about something in your history and worry that others will find out but in fact they may be more understanding and kind about it than you imagine. We tend to be our own worst critics.

And what happens when someone actually does judge you for things in your history that you struggle with? Well to my mind that is the other person’s problem and it is their loss to miss out on your company and friendship. While being on the receiving end of judgement is horrible, it says a lot more about the other person than it does about you.   

It has taken me a lot of years to get to a point where I am comfortable with the more problematic bits of my personal history. Reconciling my present self with who I used to be has been a journey and not always a very easy one but it is a journey I am glad I made.

Yesterday I went to the shops wearing short sleeved shirt with my scars exposed and it felt really good. I have tried to do this a few times and struggled but I think I will now be able to show off the parts of myself which I feared would result in judgement from others because I am happy to own those parts of myself – physical and intangible. I am not ashamed and I no longer hate and blame myself for things I did a generation ago. There were real reasons for my self harm as a young person and I now realise that time in my life deserves understanding and kindness rather than blame from me. The worse judgement I have experienced in relation to my scars has come from myself not others and I need to let that go.

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