I did a calculation earlier this year about the amount of time I have spent in the psychiatric ward in my 46 years. It was just over three years, not counting residential programs which weren’t hospital – that is about an additional 18 months. Then I spent over three years in prison in my early twenties (long story – refer to chapters 6-8 of my autobiography, ‘Finding a Different Kind of Normal.’) So I have spent eight years of my life in one institution or another. Institutions are a big part of my life.

For many years I was what may be termed institutionalised, especially in prison. Being in a place where I had absolutely no control became quite attractive. I would be released from jail and then not cope in the oh so big and scary outside world so I would commit a crime in order to go back to prison. I was not alone in this. Many of my fellow inmates were also serial recidivists who found the outside would too big and scary. Several of these people would I think have gained an autism diagnosis had such a thing been available to them. The odd thing was that I was in far much more danger in jail than out and I absolutely hated it. But there was an alluring attraction to the place. I am pretty sure that it was because I liked to be contained and to have no power or control – or responsibility.

Even after I left prison for the final time I struggled with these issues. I had to make lists of reasons why I was better off in the outside world. Thank fully I overcame my recidivist tendencies but I still struggled with the institution. I became quite independent and was proud of myself for this but I have a nasty mental illness that periodically enters my life and tries to destroy everything I have worked for. In 2001 I had a hospital admission which was a pivotal moment. I had become unwell after having extreme stress related to a part-time job I had at the time. In the past, hospital would have triggered the need I thought I had for institutional care. In past admissions I had done everything I could to go to hospital and be cared for. However in this instance that was not the case. I was delighted to be discharged. What’s more I didn’t want to go back to hospital. Maybe I was cured of my need for the institution?

Many years passed with no hospital admissions. I got myself a masters degree, wrote a book and started a professional job. I also bought an apartment. Basically I was as far removed from the serial recidivist I had been in the past. I had ‘arrived.’ Sadly my mental illness didn’t agree and in 2010 I became extremely unwell. My accommodation was causing me stress and I didn’t want to live there. I ended up in hospital and found myself in and out of hospitals for the next three years. That need for the institution returned but I had so much to lose. I had created for myself a near-perfect life and I wasn’t about to throw that away for the sake of being cared for. There was a war raging within me. I ended up meeting my saviour – the very beautiful and highly therapeutic black cat known to all as Mr Kitty. I was institution free for another six years. As time has passed I have become further and further removed from the institution. I am currently in the middle of a period of illness which so far has lasted 18 months and I am absolutely free of the wish to be in hospital. I genuinely want to avoid the place. I think I have finally won this particular and very long-standing battle.

Some thoughts on institutions are:

• Institutions tend to breed the need for institutions. The longer you spend there the more you feel the need to remain or return
• Some things can trigger the wish for institutional care. I avoid watching  hospital themed shows when I am unwell as I tend to find myself wanting to go there if I see hospital on TV or in movies 
• Institutions perform a role and are not always bad. I accept that there are times when I do need to be in hospital and it can be beneficial
• Institutions – especially places like psychiatric wards, aged care facilities  and prisons – can have staff who are hostile and cruel. Sadly there places tend to be ‘out of sight, out of mind.’ Society needs to care more for people in institutional care. 

My former psychiatrist, who sadly passed away last year, told me something which illustrates the points in the piece. I reflected to him that had I been born thirty years earlier, as a person with schizophrenia, I would have been in a long term institution. My psychiatrist looked at me and said ‘Yes. You would have been working in the kitchen because you are reliable.’ That was a chilling moment and made me extremely grateful that we live in a world where I can do all the good things I do. 

There is a well-known statistic that autistic people are less likely to be employed than others, by a significant margin. This is not at all OK and needs to change. 

You might know that I talk a lot about employment and autism. And you might also know that I am a career public servant of over fourteen years’ tenure in a middle management role. I am on leave at the moment due to medical reasons so I wanted to reflect on my work. I should add that my managers and team are very supportive and are looking out for me which is lovely. Evidently something is working in my employment world so I thought I would share some of the things I have in place which help to make my world of work pretty wonderful.

When I applied for my job in 2006 a number of friends poured metaphorical cold water on my ambition. One friend told me that he had done a similar role and was terrible at it so there was no way I would be able to do it. Another said that sort of job ‘isn’t autism friendly.’ I responded that if that was the case maybe I should do my best to make it autism friendly. And that is essentially what i have done. I have put in place measures which make work work for me. I have listed a few of them. I will say that most of these strategies won’t be as effective in a  toxic work environment although some of them can help to avoid things getting that way. Work can be really hard for autistic people and what works for me will not always translate to everyone else’s world of work. Keeping these things in mind, I thought I would share my strategies in case they are helpful to others.

• I have always disclosed my autism and also my mental illness (atypical schizophrenia) to managers and colleagues. I know disclosure is often a tricky subject but for me the decision was already made as I had a profile in the wider community as an autistic person. This default sort of disclosure was worrying at first but I soon discovered  it meant I could talk about any supports I needed with my managers and that if anything went wrong that I got to work through it rather than suffer in silence. (It is important to note that decisions around disclosure are personal and individual and sometimes it is not a good idea to disclose so this is just my personal experience.)
• I have always been actively involved in disability advocacy within my workplace as part of the disability employee network.
• I always ask if in doubt as to anything. Assumptions are the parent of most screw-ups in the workplace.
• If I need an adjustment or change I ask for it and explain why I do and how it will enable me to work better.

• I am unashamed about being autistic. I talk about autism and my advocacy work with colleagues. I pull people up – kindly – when they say something unhelpful like ‘we are all on the spectrum’. 
• I support other autistic people at work and allistic parents of autistic kids too. 
• When I have had issues with managers being difficult – micromanaging and that sort of thing – I confide in someone and where possible I change my role. There is little more soul-destroying at work than to have a manager who you don’t get along with.
• I have always sought out mentors and role models at work. These can help build my career and give some perspective on the work I am doing.
• I hold myself to an exemplary standard in ethics and integrity. This is partially because there’s a few years of being unethical in my past but also because it is good practice to do so and is the right thing to do.
• I listen to music on headphones pretty much all day. This blocks out the noise in the office which I find distracting and also means I get to listen to nice music all day long which makes it easier to work.
• I don’t mask. If people have an issue with me then it is their issue. While that might sound hard, I ahed found it improves with practice. 
• I am grateful to have my job. I reflect on this every day. Before I worked in the public service I was on the disability pension. I was very poor and had no choice as to where I lived. This meant I lived in a public housing estate where the neighbours were not very happy people and used a lot of drugs and alcohol. Because I was desperate to be liked I tried to fit in, meaning I drank a lot more alcohol than I wanted to. One of my neighbours was a stalker and I was tormented by her but I couldn’t afford to leave. I knew I needed to get a full-time job in order to move  into my own place. Fourteen years later and I have a beautiful rental property with no difficult neighbours. I can choose where I want to live which is amazing.  Being employed for all that time has meant other positive changes, including in my self-esteem and how I view myself. So I am very grateful that I get to do such a lovely thing five days per week.

I am currently staying in a residential service for people with mental illness. I am quite unwell. Part of this is low mood and paranoia. I feel despondent and sad and am frightened of other people. My voice is currently very quiet and I really struggle to look at anything which isn’t the ground. As an autistic person I have no need for eye contact in order to communicate. Eye contact is all about the other person I am talking with, not me. When I am healthy I will look in the general direction of the person I am speaking with’s face as I know a lot of neurotypical people like to think I am making eye contact. In fact I rarely make actual eye contact and if I do it is accidental as eye contact is overwhelming and invasive for me. My ‘eye contact’ – I.e. looking in the general vicinity of a person’s face – is all for them. I do not need any kind of eye contact in order to communicate and in fact genuine eye contact makes it very difficult for me to communicate!

When I am unwell, as I mentioned, I tend to look at my hands or the ground. The effort required to lift my head and pretend to look in someone’s eyes is beyond me. In the service I am currently staying at the workers have all been saying I need to make eye contact in order to communicate. While the workers are all very lovely and try to be inclusive, this particular piece of advice is very difficult for me. I am thinking I will need to give them a quick in service on autism, mental health and eye contact!

Faking eye contact is tricky. If I am not careful I will actually make genuine eye contact and then feel like I can see into the soul of the person I am conversing with! Other issues with faking it include not knowing how long to look in their direction for as well as remembering to look at their face in the first place (which I often forget to do!)

So what is the big deal with eye contact? A lot of people think if you are not looking them in the eye then you cannot listen to what they say. Maybe this is true for neurotypical folks but for most autistics the opposite is true. We often find eye contact invasive or in some cases physically painful. If I accidentally look in someone’s eyes it is like I can see directly into their very soul – just awful and very hard even if I’m not unwell! This idea that eye contact is the pinnacle of communication is also culturally determined. Many cultures view eye contact as disrespectful, particularly between different generations. However in the western world there is a focus on eye contact for communication. Like many cultural differences, a lot of people see this as the only way of doing things despite the fact it is not.

Focusing on eye contact is something that has happened to generations of autistic kids. Some ‘therapies’ (and I use the term extremely loosely as they are not in the least bit therapeutic) punish autistic kids for not making eye contact. This horrifies and angers me as not only is it a case of forcing unnecessary actions it is also punishing kids for not doing something that causes them stress and even physical pain. So the autistic children can either have to do something unpleasant and painful or be punished for not doing something unpleasant and painful. This is not OK on a large number of levels.

The problem is not that autistic people need to learn to make eye contact. The problem is that neurotypical people need to understand the reasons that not everyone ‘does’ eye contact and to know that communication does not necessarily require eye contact.

I will be talking to the manager here about the apparent requirement that I make eye contact in order to be able to recover from my episode of illness and I will explain that I’m not making eye contact anyway, even if it looks like I am! And the whole issue has got me thinking about ‘adapting’ or ‘masking’ because my approximation of eye contact in order to keep others happy definitely falls within the umbrella of masking. Wouldn’t it be nice If I could just look at the floor and have a conversation without having to try and make the person I am conversing with think I am looking them in the eyes!

I have a number of anecdotes that I tell in presentations to illustrate ways to navigate the world well. I thought it might be nice to share some of them here so you can get some benefit from them too. I am a big proponent of narratives and anecdotes as a means to manage life.

My first story is about addiction but it could be used for any maladaptive coping strategies. When I was in my twenties I had a big problem with drug addiction. I think the reason I have a mental illness now is because of my heavy use of illicit dugs to self medicate in the 1990s. I had a number of psychotic episodes due to my drug use. At the time a lot of people told me I should stop using. Of course I didn’t listen to them, despite the fact that the message was repeated over and over. At the time I imagine the people caring for me wanted to give up because I seemed so determined to not listen to them. They told me that drug use was damaging my health and I simply ignored the messages and found them annoying. However when I got to the point that I myself understood that drug use was harming me all those messages came back to me and I finally listened. I was grateful for the people who evidently cared for my welfare and remembering their messages helped me to fight the addiction. This story illustrates that people need to get to the point of change to realise that they need to change but when they do, all the messages of hope they have been given over time will almost certainly help them in their journey. Another take-away from this story is that time is often a very important element of healing.

My next story relates to a toxic ‘friend’. I had a friendship which lasted several years but it always felt somehow wrong. The friend was in fact a toxic narcissist. However, I am a very kind and obliging person who tends to assume everyone else is kind too. Because of this it took me a very long time to realise that this friend was not a friend at all. They would insist I stay with them when I was in their home town and I grew to dread these visits as like most narcissists, this friend would engage in confrontation and argue with me regardless of what we talked about. When I finally realised that I needed to excise this person from my life it was really fraught. I explained to her why I was blocking her and then blocked her on every platform I have. Even so she used fake profiles to harass me for some time which was extremely stressful. Mutual friends were concerned for me because she was apparently being really possessive about me and was very angry that I had excised her from my life. It was an extremely stressful time but I did the right thing in removing her from my life. A couple of months after blocking her things had resolved and she no longer tried to contact me. I felt like Frodo when he threw the One Ring in the volcano in Lord of the Rings. I even thought ‘she’s gone!’ with a great sense of relief. I guess the moral of this story is to excise toxic people from your life if you can and also to trust your gut about narcissists – if a friendship or relationship feels wrong then it probably is!

My next story is about work. Many of you will know that I am a career public servant of 14 years tenure. However I have not always had a professional job – or any job! When I was 27 I was trying to get my life back in order after having been in prison relatively recently. I hadn’t worked in many years but I really wanted to. I got a job two nights a week washing dishes in a restaurant. It was not exactly a responsible job but I am a big perfectionist and I got really stressed and worried I would do something wrong. My anxiety around my job grew and grew until the anxiety triggered my psychosis and I had to quit the job. My response to this was not to give up on work though. I decided that while I couldn’t work at that point in time I would be able to work one day. I didn’t do any paid work for some years but it was always my aspiration. A couple of years after the dishwashing job I got a volunteer role in a gallery. This gave me more confidence and was like work but didn’t involve money changing hands which made it less stressful. Then I started a very small business doing videos for fellow students in my Fine Art course. This also gave me confidence. I then got a job talking about autism to school kids. At around the same time I wrote my autobiography. By the time that the book was released I felt ready to apply for a professional job. I applied for two public service roles and was successful in one. I moved to Canberra to join the Australian Public Service in 2007. It was six years after I had needed to quit my dishwashing job due to anxiety and perfectionism. I am now a very well-regarded public servant and have been promoted twice since joining the service. I guess the moral of that story is that building in incremental challenges can make a difficult thing more manageable and also that if you have a setback then that is not a reason to give up.

I hope those three anecdotes are helpful. I like to learn from my life – and from other peoples stories too.

Dear Joanne,

I discovered Harry Potter when I was living in a residential program for young people with mental illness back in 2001. I had been reticent to read the books as it was a craze at the time and I didn’t want to jump onto the bandwagon. I borrowed the first book from a fellow resident thinking I would’t enjoy it but shortly afterwards I was absolutely captivated. Harry Potter became a huge fandom for me and it became my passion and source of autistic joy. I watched each of the films and eagerly anticipated the release of each new book.

I loved Harry Potter. Why? Well the attraction of magic and a new universe really drew me to it but mostly I loved it because I had been bullied as a kid and related to the oppression Harry experienced at the hands of the Dursleys and Malfoy. I also loved the theme of liberation from tyranny and fighting an oppressive and bigoted antagonist in Voldemort and the death eaters. As a Queer autistic person I really related. There were even some characters who were most likely autistic. I loved the universe you created but sadly I can no longer bring myself to engage with it. 

I have put my Harry Potter books and movies under the bed and no longer wear my Hogwarts flannel shirt. My Hermione doll is also under the bed and I don’t know what to do with my niffler and Hermione enamel pins. 

What has prompted me to hide away your work and not want to support you financially in any way whatsoever? That would be your horrible bigotry against transgender people. Transgender people like me and like all the others who identified with the Harry Potter universe but who now – like me – have a bitter taste when we see your work. Your transphobia has tainted you to pretty much beyond help to my mind. Something I once saw as liberating and positive now just radiates extreme ickiness.

One of my biggest issues with you Joanne – other than ruining something I once loved with your bigotry – is that you are a person in a position of influence. So when you say hateful things about transgender people then others listen and take it seriously. Your level of influence makes you extremely dangerous. Transphobic bigotry results in death – either at the hands of thugs or through suicide. I am extremely disappointed in you Joanne. For someone who created a world in which bigotry and prejudice were seen as a negative you have embraced bigotry yourself. It seems very illogical but mostly it is just awful and deeply disappointing.

I can see the extreme irony that Harry spent ten years in the closet but you – through your transphobic comments – would put all of us back into the closet.

I keep finding myself hoping that you will change your mind and apologise to all of us for your hateful words but I suspect that this isn’t going to be what happens. I am sorry you are so full of hate and I am angry that you have aligned yourself with haters and bigots. And please don’t call yourself a feminist. TERFs are not feminists as feminists support rights for all women – cis gender and transgender. You can’t pick and choose which groups of women you want to support. True feminism is intersectional and inclusive. Hating trans women does not qualify a person as a feminist by any definition.

I am so sorry to lose Harry Potter as it really was a big part of my world but I will not engage with Harry Potter until you apologise for your transphobia and put some respectful and inclusive messages into the world rather than the hate you have been spewing lately. 

Yours,

Yenn

This week I had to block someone who had been a friend but whose transphobia and bigotry eclipsed any friendship we ever had. This person sent hateful comments to me including that they would never use my correct pronouns, would continue to use my dead name and that my cat died of a broken heart because I was such an awful person. This post is not really about her poor behaviour – that is just the example to illustrate my post about toxic people and autism as it was pretty gosh darned toxic behaviour. This post is about understanding, identifying and managing toxic friendships and relationships for autistic people generally.

Autistic people can have significant challenges around managing toxic friendships and relatiosnhips. A friendship may start out toxic or become that way over time. For people who may be isolated and lonely, the offer of friendship can be a welcome thing and it may be hard to accept that the friendship is toxic. In fact a toxic friendship or intimate relationship is usually much worse than having no friend or partner at all but it is a very hard call to distance yourself from the one human being in your life, even if their presence is damaging to you. We may not realise a relationship is toxic and think that this is just how relationships and friendships work. Our lack of confidence and self esteem may make it hard to understand that our friend or partner is not in fact a friend.

Some examples of what happens in toxic friendships or relationships include:

• Abuse – physical, sexual or emotional
• The relationship having one person doing all the ‘taking’ and the other doing all the ‘giving’ – this is also described as a lack of reciprocity
• Gaslighting – this is where a person tries to make you doubt your own knowledge and experience
• Invalidating you – treating you like you do not matter
• Dishonesty
• Manipulation
• Telling you not to see friends or family or intentionally sabotaging your relationships with others
• Being hostile to and/or belittling your other friends or family members, especially those that support or defend you
• Pressuring you to do things you do not wish to and / or which are harmful
• Belittling you
• Frequently blaming and criticising you
• Controlling behaviours such as in an intimate relationship one partner controlling the money and spending

This is not an exhaustive list and there are other kinds of toxic behaviour not listed here.

Autistic people can struggle with seeing issues in relationships and articulating that there is a problem. This has been my experience many times over. I have had an uncomfortable feeling about the person and felt like I didn’t want to spend time with them but I couldn’t work out from this that the relationship was doing me more harm than good. One way to spot toxic behaviour is to be aware of your reaction when you meet a person or see communication from them online. If you are highly anxious or afraid when there is contact with the person, more often than not this is a sign that the relationship may be toxic.

One challenge of dealing with toxic people is that autistic people – and others – often lack assertiveness and the ability to set appropriate boundaries. Even if we are aware the person is toxic then actually setting this boundaries to enable us to keep our distance can be close to impossible.

Autistic people can also misread the behaviour and intent of toxic people. Because we tend to operate on one level in communication it can be hard to understand that many other people don’t and that what they say in their words and acts can be very different from what is going on in their mind. If someone is outwardly nice to us we may not see that they have an ulterior motive.

It is important to note that toxic people do not have to be neurotypical. Autistic people can be toxic as well. In fact the bigoted woman I mentioned at the start of this piece is autistic. 

If we have determined that a person is toxic and decided to leave the friendship or relationship we can have fear of their reaction. This can include catastrophising and worrying about specific situations in our minds which are in fact highly unlikely. We can be highly anxious at the prospect of unexpected contact with them and this can lead us putting up with a toxic relationship. In my experience when I have seen toxic people that I have distanced myself from unexpectedly it has been very unpleasant but nowhere near as unpleasant  as staying in the relationship.

Strategies

This is a very difficult area of human communication. Non-Autistic people also have issues with this. Some strategies which may assist include:

• Trust your ‘gut’. That niggling feeling that something is wrong is almost always a sign that something actually is  wrong. Not everyone has this gut feeling although for some people it develops over time.
• If you know a relationship is toxic and you want to distance yourself from the person then put in place a strategy for leaving – consider things like what do you plan to say to them before you leave if you plan to say anything? What and who are you going to use as supports? If you need to move locations how will that work? Do you have somewhere safe to go to (if you you need to move to escape the toxic relationship)? How will you manage your mental health after you leave? How will you respond if the person is aggressive – physically, emotionally or verbally? Do you have a person you can talk to for practical or emotional support?
• If your other friends tell you a friendship or relationship is toxic, take this on board. Often others are more objective judges of toxic relationships than we are ourselves
• If possible, talk with a friend or support person about your concerns.

Leaving toxic friendships or relationships often results in the person who left feeling a range of things which may include relief, fear, empowerment, self-doubt, loneliness and many other emotions – often at the same time. Emotions like this are quite natural but you may need to work through them over time to recover from the toxic relationship or friendship

It can take some time to ‘get over’ the toxic relationship. Many such relationships cause trauma, even where there is no physical or sexual abuse involved. That trauma needs to be 

worked through.

Know that it is better to have no friendship or relationship than one which is toxic. Remember that you do not deserve toxic treatment. Nobody does and you have the right to respected love and support.

Content warning: Violence, transphobia

On Friday morning I received this message from a (now) former friend “…I don’t know if you are autistic or not…to be honest..I don’t care. You can identify as whatever you wish…but I will not call you they or them…I will not call you she either, because she is the cats mother….Mr Kitty died of a broken heart. I know EXACTLY why he liked my bag…I’ve had wild birds do the same thing….you weren’t home…Your books are OK…not great…but pretty good…take care Jeanette. And yes…I’ll dead name you for as long as I wish.” Needless to say I was horrified and very, very sad and they were blocked two seconds after I read the message. I had known this woman for many years, we had attended each others’ birthday parties and been to each others’ homes. 

This blog post is about bigotry, and more specifically transphobic bigotry. How is my mental health after that message? Well not good although it has been not good for some time. The message just made it another degree less good. I am more angry and sad at the way this person treated me. I suspect she is one of those people who fall under the category of ‘trans excluding radical feminists’ or TERFs although to my mind they are about as far from feminism as anyone could get. They are ideological transphobic bigots hiding behind feminism to excuse their hatred. JK Rowling is a famous example of a TERF as is Germaine Greer. I consider myself a feminist but I qualify this by saying I am an intersectional feminist to avoid being associated with TERFs who are doing immense damage to the community.

Being trans and / or gender divergent seems to attract a lot of bigotry, bullying and trolling, For some trans people they are attacked by strangers in the street. For others – including me – the bigotry tends to come from people harassing me online to people assuming I am female and misgendering me and calling em a ‘lady’. I suffer more from erasure than random hatred. I had a colleague who liked my advocacy work. This was around the time I came out as non-binary. She said to me ‘Oh but you are a real girl.” I don’t think she realised how hurtful that was. I had spent so much energy and stress coming out that to have someone assume my gender was wrong was pushing me right back into that closet was very harmful.

I have had some comments which are so silly as to almost eclipse how offensive they are, Someone told me I couldn’t wear a skirt because skirts were for girls and I am non-binary. This flummoxed me a bit. Could I wear pants? Maybe I should go nude?? I had someone else tell me I shouldn’t be involved with a women’s disability organisation because I was not a woman. The fact that the CEO and previous CEO of that organisation were also non-binary seemed to have passed this person by! I often feel like I am subject to the scrutiny of the gender expression police!

Someone commented on my social media yesterday that they had seen a lot of posts from me calling out bigotry and it must be difficult being trans as there seems to be a lot of bigotry. They were right. Transphobia is rife pretty much everywhere. In movies and TV trans people are either objects of ridicule or disgust and this is rarely challenged. While this is improving slightly there are still very few trans and gender divergent characters in movies and TV and in other positions in public life. It is as if we are invisible – or accurate and respectful portrayals of us are anyway, 

Transphobia is dangerous. It can cause suicide and self harm but it also drives some bigots to acts of violence against us. When the plebiscite for equal marriage was held in Australia a few years ago several of my trans friends were physically assaulted included one by a woman holding a Bible! There is a transgender Day of Remembrance held each year to observe the murders of transgender people. And while the situation in Australia is bad enough, in some other countries things are far worse. 

I was speaking with a friend on the phone this afternoon. We were talking about society and advocacy and gender diversity in particular.  I said that we cannot assume that things will improve in a nice gentle trajectory or that the passage of time makes bigotry less of an issue. Advocates and activists need to not be complacent as things can get nasty and take a turn for the worse almost without warning. For every person advocating for positive change there is someone who wants things to go back to a world where everyone is in the closet and perpetrators of transphobic violence face no sanctions for their hatred. We are seeing some positive changes and we need for that to continue. And I want a world where the message I shared at the start of this post would never happen. Transphobic bigotry is never OK. 

I recently finished writing a book on advocacy with my coauthor, the awesome Barb Cook. The book is all about how to advocate for neurodivergent people. One thing we covered was allies. 

What is an ally? A quick Google search came up with this definition: To be an ally is to unite oneself with another to promote a common interest. As shown by the definitions above, people who are allies are not only helpers, but also have a common interest with those they desire to help. In an alliance, both parties stand to benefit from the bond or connection they share.

So what makes an ally? A good ally has the interests of the person they are supporting at heart and recognises that they are not being an ally for their own interest but for the interests of the person they are supporting. A good ally does not make it all about themselves. A good ally listens and provides support and encouragement.

Lots of groups have allies – for example straight allies are very common in the LGBTQA+ community. In the autism advocacy space there are also a lot of allies. Often allistic parents will advocate on behalf of – or together with – their autistic kids.

Some allies and ways of being an ally are problematic. When allistic people ignore or even go against the needs and wants of the autistic person they are ‘supporting’ this is a problem. Any kind of co-advocacy or speaking on behalf of needs to put the needs and wants of the autistic person to the front and centre even if the autistic person is a child. Actually particularly if the autistic person is a child! Children often can’t advocate for themselves so they need an ally to support them in getting their needs met. This is fine but it must be inclusive or it is likely to be discriminatory and unhelpful. 

I remember posting a Yeme once which basically said allistic people should not speak on behalf of autistics. I got a lot of negative feedback on this, mostly from parents. In this instance the criticism was probably justified. There are situations where allistic people – especially parents and carers – will need to speak on behalf of an autistic person, often a child. Speaking on behalf of someone doesn’t always have to be negative but it really, really needs to be inclusive. If you are advocating for an autistic child as an ally, make sure where possible that you communicate with them as to their needs and wants prior to the advocacy. And a person does not need to have verbal speech to communicate. If you are caring for someone who does not use verbal speech then make sure you get an Alternative and Augmented Communication (AAC) device for them. There are so many ways a person can communicate that doesn’t involve spoken words. Communication is absolutely the key to advocacy and a person who is denied the ability to communicate is likely  to be very frustrated and will struggle to get their needs met.

The area of allies and representing the needs of autistic people is a challenging one. Some people who claim to be allies are in fact doing more harm than good. A ally needs to have respect, understanding and acceptance of the autistic person they are being a ally for. They need to listen and they need to ensure their allyship is genuine and based strongly in the needs of the autistic person they are supporting.

When I was a kid we had an integration aide at my school. This woman was just awful. She was repeatedly mean to me including asking if my mum cut my hair – apparently being poor is a reason to criticise someone. This woman was supposed to be a support person for kids with disabilities but she was really unpleasant and rude to at least one Disabled kid – me. This person was hired in a role where she was supposed to essentially be an ally but she was very poor at the role and was harmful and rude. Allyship is such an important thing and it needs to be done well and with a lot of respect and kindness, not judgement or selfishness. 

A good ally can make a huge difference and an unhelpful ally can do just the opposite. If you are an ally, please consider your role and think about how you can genuinely support autistic people to reach our potential and navigate the world well. Allies can be an effective support in difficult situations and for people who struggle to advocate for themselves they can be the change and difference that is required. One thing I would say to all allies is ‘remember it is not about you.’ And a big thank you genuine allies for making the world a better place for so many of us.  

My mum is autistic. When I was a kid she was a handy translator and conduit between me and the neurotypical folk whose ways completely baffled me. However one thing my mum really struggles with is honesty. My mum has been described as being ‘brutally honest.’ She will tell it how it is regardless of the consequences. My mum is an extremely devout Christian. When I was a kid I was told from the get go that there was no such thing as Santa Claus or the Easter Bunny. I don’t remember this but I imagine I made myself very unpopular with my classmates by telling them Santa Claus wasn’t real and that the presents were probably from their parents! As an autistic kid I was also very honest. I think it is a very common autistic characteristic to be straight-talking  and honest. It isn’t just about telling the truth but is a core part of our approach to life.

Autistic people are forever getting in trouble for our honesty. Kids say things like commenting that a person is really fat and get in no end of trouble. And adults might answer a question honestly when it is not expected that they should, such as if someone asks if their butt looks big when trying on a new outfit.

I should stress that autistic people are generally not trying to be hurtful with our honesty. It is one of those areas where our approach to life is very different to what is expected. An autistic kid commenting that someone is fat is probably saying it with no judgement or prejudice against fat people. They are just commenting on something that they notice.

The issue is that the neurotypical / allistic world does not operate in this manner. It is one of those things where we are misunderstood and judged for it. I have a theory about this which I might think of as the cultural theory of Neurodiversity. I like to imagine that autistic people, metaphorically, speak French and neurotypical / allistic people speak German. If you only speak French and you try to make yourself understood to someone who only speaks German, they will really struggle to understand you. But the cultural theory has a twist which is that the German speakers (neurotypicals) have no understanding that the French speakers (autistics) are speaking another language. They just think we are speaking German really, really badly. One of the key parts of making life easier to navigate for autistic folks is to make the people metaphorically speaking German aware that we are not speaking neurotypical badly but we are speaking our own language and that language is completely valid too.

It can be so hard to understand neurotypical people. I have spoken with my mum about the honesty issue and she said she simply doesn’t understand why neurotypicals have to be dishonest. I tend to agree with her but they do not think they are being dishonest, it is just the way they communicate. For autistics our honesty is not usually a choice but is how we interact in life. Often neurotypical people think I am telling jokes or being comical when I say something which I later reflect as being maybe more honest than something they might say. I have learned to accept people thinking I am a comedian just for stating my observations of the world.

I find that autistic people often operate on only one level in terms of our thinking and communication style. What you see is what you get. Neurotypicals often work on several different levels. They tend to assume that everyone is doing the same thing (see point above about cultural differences). I find this really difficult as they read things into my communication which aren’t actually there.

I think this issue is a key issue for autistics trying to make our way in a world which primarily doesn’t really understand us. Those assumptions as to our motivations for things like honesty can lead to some very challenging situations for us. So I am keen to promote the cultural theory of Neurodiversity because I think it is a key part of how we can be respected and understood.

Last year everyone was saying how awful 2020 was. In Australia we had the worst bushfires in recorded history closely followed by COVID19. The year involved successive lockdowns and restrictions on travel. It was like we were living in police state but the reason was not oppression but public health.

For me COVID was a bit different to how I imagine many people experienced it. I was in hospital pretty much continuously from October 2019 to June 2020. When COVID and the subsequent lockdown happened, we had the chief doctor telling us increasingly dire things but we were largely protected from the challenges of lockdown. It was not possible to socially distance a lot of the time. The medication room was a case in point. This room was probably five square meters if that and when you went for your meds it would be you and at least two nurses. If COVID had got into the hospital everyone – staff and patients – would have caught it. My biggest fear was not contracting the virus, although I was concerned about that. My main fear was that I didn’t want the hospital to get repurposed and for me to go home to my flat. This flat, known as whimsy manor was owned by me and caused me more stress than anything else in my life. I lived in fear that I would need to be discharged early and go to the home which had resulted in me getting really unwell with psychosis and mood issues on several occasions. Thankfully I didn’t have to go home and ended up selling Whimsy Manor later in the year after I was discharged from hospital.

I wrote this poem about my time in hospital during lockdown:

COVID – Standing on the sidelines 

From the safety of the hospital news reports of a cruise ship seemed distant, detached

Something from another place

Nothing to concern us here

Meaning finally came with the tape on the floor

Little red and white crosses outside the hospital cafe like latter day crucifixes

Tables and chairs are spirited away to somewhere elsewhere

The realisation hits home – this is real

The fear tempered by medication and the routine of hospital life 

The head psychiatrist at every morning meeting 

With her dire warnings and apologies

Psychiatrists never apologise

This must be serious

None of us know the future 

We look to the staff

Their brave faces and professionalism unconvincingly masking fear and uncertainty 

On the sidelines of the pandemic

Observing unreal reality through mania and psychosis 

Everyone else enduring lockdown but life here goes on

We should be more concerned 

A pandemic that is real yet not real

The institution’s broad arms embracing us as we move into an unknown future  

Not only was I sort of on the sidelines of the pandemic as a hospital patient, I was also on the sidelines due to living in Canberra. We have not had an active case in Canberra for several months. We don’t have to wear masks and the restrictions seem limited to having to sanitise our hands in buildings and scan QR codes when entering premises. People hug, publicly. At work we have numbers on the meeting room doors to ensure we stay socially distant but that is pretty much it. It is very odd watching news reports about places in lockdown when you have just hugged a friend and been at work in a quite full office building, 

I think a lot of autistic people are really struggling and have really struggled during COVID times. Lockdown might benefit some people who like solitude but for a lot of people – autistic and allistic alike – confinement with just yourself or family can be very stressful and upsetting. This isn’t the case for everyone. I have an amusing story of my nephew who is 10 writing to my parents ’Grandma, what do you love about lockdown? I love not having to go to school and see people.’ However I know some people who are traumatised by the lockdown and what it entails. I think another issue for many autistic people is the uncertainties involved. How long will the pandemic be an issue? Will I or someone I love and care for catch it? Will we have to go into lockdown again? Will I be able to see my family who live in hot spot areas? Another issue people encounter is when others flout the rules. Many autistic people are very strongly motivated by doing the right thing so this is really difficult to see. And pulling someone up for doing the wrong thing can result in reprisals, even if it is the right thing to do.

My biggest issue with the pandemic in recent times is the travel restrictions. My family in Australia all live in Victoria. Victoria has been in some of the strictest lockdowns in the country. I got to visit at the end of 2020 but only just managed to as restrictions changed while I was actually there.  I haven’t seen my family who live in Melbourne for so long I have forgotten how long it actually is. This is not to mention friends living in hot spot areas. I have one lovely friend in Melbourne who often mentions how she would love to see me but I have no idea when I will be able to get there. Travel restrictions seem to change every week or two. In terms of my advocacy work I haven’t been to a face to face event interstate since October 2019. I have a couple of face to face conferences booked for this year but I will not be surprised if they get cancelled or postponed.

I wonder how this period in history will be viewed in future generations. It is one of the most challenging times I have lived through and it is actually is true that ‘we are all in it together.’ I wonder how it will impact on the mental health of people and especially autistic people who tend to be more prone to mental health issues. I hope the new vaccine will be a game changer and help the world to move into the future leaving COVID behind us. I realised I haven’t mentioned the economy in any of this which is a whole other issue for autistic people given how difficult it can be for us to find suitable work. Maybe that is something for another post.