I was in the supermarket the other day and was having a short conversation with myself around the choice I needed to make about a product that I don’t usually buy. A person must have heard my quiet discussion with myself. They gave me that ‘You are really weird and I don’t like it’ look. Funny, because I don’t usually understand facial expressions but I have seen that one so many times I am all over it! It is odd what causes people to judge. I suppose I didn’t fit this person’s view of how I ‘should’ act and so they passed a quick judgement about me. This is a problem beyond rudeness in supermarkets sadly.

People make judgements based on limited information about a person all the time. Everyone does this. I think it may be related to earlier generations of humanity and people encountering a new person needing to know if they were going to have to defend themselves or if they had  met a friend or ally. Apparently we form a picture of a person – where they come from, their level of education, whether or not they are trustworthy, their gender identity, whether we will or won’t like them, even their political views  – after seeing them for just a few seconds. Judgements are usually based on things like physical appearance,  age, perceived ethnicity, how they speak and the clothes they are wearing. The issue its that these snap judgments are at best incomplete and very often completely wrong, but they stay with us.  A huge number of stereotypes exist and these snap judgements feed right into them. Different kinds of discrimination – ableism, racism, transphobia, homophobia, sexism / misogyny, classism and so forth inform people’s judgements and vice versa. Many people don’t even know they are doing this which makes challenging judgements and stereotypes very difficult.

While I don’t really see myself as ‘different’ I do know that my expression (what I wear, my hairstyle, how I speak, what topics of conversation I choose etc) often mark me out as something other than the ‘norm’. It has taken me years to express myself how I want to for fear of those judgements and stereotypes and associated mistreatment. As a member of a few different minority / diversity groups, I have sometimes found myself being attacked because apparently I don’t fit into the stereotype for whichever group I am in! I guess bigots might find it frustrating that I don’t fit their expectations for an autistic person or a Queer person or whatever they are bothered about! This stuff can be really frustrating.

Stereotypes, judgements and assumptions add yet another step into the process of advocacy and activism – the step of having to explain to people that the stereotype they have based their understanding of autism around is often wrong! For example, as an autistic person I satisfy a couple of the stereotypes in that I don’t drive and I am asexual. I actually wish these things were not true for me because I find myself having to explain to people that just because these are true for me does not mean they are true for others. 

There are many people who think they know about autism (or whatever else) because they know the stereotype. This is understandably pretty counter-productive!  Stereotypes hold people back. For example, if your view of autistic people is based on seeing Rain Man and you are an employer, how likely will you be to hire an applicant who states on their application that they are autistic?  However, if you are an employer who has employed autistic staff members in the past, your view of their capability and ability to do the job will probably be less likely to be based in stereotypes and more likely based in real experience. You will probably  know that your three autistic employees all have different strengths and challenges and are very different people. If another autistic person applies to work for you, you will have will have far greater capability to understand what employing that person might involve. This is good for ‘you’ as an employer and your hypothetical workforce too! 

This trouble with stereotypes is one of the reasons I am always talking about the need to build autism knowledge in every area of society. True knowledge and experience dispels stereotypes and in doing so benefits us all. Stereotypes often come from somewhere real to some degree but have become exaggerated and applied to everyone in the group they relate to, often over many years. This is one of the things that make them so pervasive. Challenging stereotypes with real experience and knowledge is a great gift to everyone. Those snap judgements we make when seeing a new person for the first time are almost inevitable but it is so important to move beyond them and understand they are almost certainly inaccurate. Human experience is way more nuanced than applying stereotypes. When people say ‘If you have met one autistic person  you have meet one autistic person’ they are absolutely correct. I think this can be broadened to if you have met one person you have met one person.’ So let’s celebrate our wonderful diversity as people and ditch the stereotypes.

 

Today as I went to work, walking in the crisp, cold, sunny Canberra morning to the bus stop, I stopped for a moment and said to myself ‘I am free’. That may seem an odd sentiment for such a confirmed overachiever and positive thinker as myself but it was a very genuine and welcome realisation. I was referring to both a philosophical and spiritual freedom but also to a physical one. 

For much of the time between 1994 and 1999 I was a prisoner in the most real sense. I made poor choices, I was confused and angry and very unwell. I hated myself and I didn’t like the world any better. I actively sought out  negative things. I was pretty much the antithesis of my current self. There were reasons which drove me to this but I will always own my actions. For while criminality is a social issue, people also have a choice in what they do and I repeatedly made the worst possible choices with no regard or respect for anyone.

Sometimes my online ‘family’ talk about my early adult years as if they were somehow romantic. Someone even noticed that my prisoner number had the same digits in a similar order to the Les Miserables character Jean ValJean, as if criminal Jeanette was a heroic figure, singled out for oppression. I think that assessment of me in the 1990s is completely wrong. While I was definitely a victim of many oppressions and abuses, I was no more romantic or heroic than any other person in such circumstances. I was aggressive and self-destructive and didn’t offer anything very useful to the world.

When I finally did muster some determination and motivation to change who I was, the first thing I did was very intentionally distance myself from my – at the time very recent – shameful past. If I saw any of my former friends who had addiction issues or had been prisoners I would do everything to avoid reconnecting, terrified that I would slip back into my old ways. On one occasion I unexpectedly met a woman I knew from prison and she asked to borrow $20. She said she would pay me back and asked for my phone number so she could contact me when she had the money. I deliberately gave her an incorrect number. Despite being very poor I figured $20 was a small price to pay for staying on the ‘straight and narrow.’

Six years after I left prison I had got myself a Masters degree and a published book plus a lot more positivity and confidence. However despite that I was constantly plagued by the thought that something would happen to put me back in the space that I was in the 1990s. This fear stayed with me for a very long time. Even into my thirties as a professional employee and autism advocate with a growing profile and people saying positive things about my character, I always believed that something would happen which would turn me into my previous self and everything I worked for would be gone. Just like that.

I have been punishing, blaming and doubting myself over and over for almost twenty years. In the past twelve months I have started to chip away at this vision of myself as an unethical and unpredictable person. Last night I did what I think may be my final act in reconciling me now to all the previous people that were also me. I made a playlist on Spotify. OK that probably doesn’t sound all that important but this was a playlist of songs I had actively avoided for almost twenty years. The title of the playlist doesn’t suggest anything momentous – ‘90s alternative.’

When I was a prisoner I spent a lot of my time in the ‘management’ unit for making poor choices even within the confines of prison. This meant I was alone for a lot of the time. Prisoners get paid a very small wage (in my case $4 per day) for doing work – usually process-type tasks. In fact I was highly diligent at this, much to the amusement of the other women. I guess I was always meant to be a workaholic! I saved my wages and was able to buy a radio and cassette player. I am fairly certain this small thing actually saved my sanity. I had that great and most liberating of gifts: music. I would record the songs from the radio and ended up with 12 cassette tapes of my favourite songs. I remembered which songs were on each tape and if I didn’t want to listen to music the talking on the radio kept me company. I knew every single song on the charts in  the late 1990s and for the past 19 years I have avoided listening to them if I could at all help it, terrified the evocative nature of music would send me right back to 1998 – as that broken version of me in that lonely little cell!  Last night I realised something big. I finally worked out that in that dark time the music was my liberation and as such, listening to it now – as much as then – was a positive and empowering thing. The songs from the late 1990s were not going to remind me of my incarceration but of the strength I must have had even then to eventually get away from that awful existence. Last night I spent what turned out to be a very short space of time searching for all the songs I loved back then and putting them in a playlist together. I listened to them last night and then again today as I worked in my professional job. It was a weird experience in many respects. Many of the songs I actually had not heard at all in 20 years so when they came on I remember the last thing I was experiencing when I was listening to that song. It wasn’t necessarily easy but it was liberating.

The liberation element comes from this notion: I was listening to a song I hadn’t heard since 1999 at work while working on a project plan. I was at the same time prisoner Jeanette and present day Jeanette, and that was actually OK. I accepted for the first time that they are both me. I think I can forgive my previous self for the harm they did. I could invite my past self into my current world without any real fear that I would become that person again. It is a pretty fertile place for self-reflection and emotion and I’m feeling bit raw and frazzled but in a good way. Despite trying to do so for almost twenty years I guess I never needed to negate or destroy prisoner Jeanette.

I have a theory that if someone doesn’t want to do or become something then they don’t – why would they? They don’t want to after all. I did not properly apply this to myself until yesterday. So yes I am free. It is a new world.

23 year old me and 43 year old me

 

Content warning: Discussion of mental health and suicidal thoughts  

On Wednesday I did something I have never done before: I went a morning tea with my team at work and we talked about mental health and suicide prevention. One of my colleagues organised it as part of R U OK day. We had an amazing and very open conversation. It was one of the best things I have been part of at work and I found it really helpful.

The thing that struck me about this meeting was how unusual it was. Most people don’t want to talk about mental health issues or suicide. This silence breeds more silence and tends to make people very reluctant to talk about these topics, even if they really need to.

Up until quite recently the accepted wisdom around talking about suicide and related issues was that you shouldn’t do it because it would somehow encourage people to act on any suicidal thoughts they may have. Also there was – and still is – a lot of stigma around suicide and mental illness, which means most people don’t feel comfortable mentioning they are having issues to those around them. This silence isolates people and makes them feel alone and helpless. 

I have had many issues in this space and feel it is really important to let people know they can have these conversations if they need to. In my own life, in addition to my autism, I have a diagnosis of atypical schizophrenia. This means I have had a lot of times in my life struggling with mental health issues and suicidal thoughts. In 2010 I was very unwell but for a variety of reasons I wasn’t seeing a psychiatrist or any other mental health clinicians. I had a GP who was lovely but their knowledge of mental illness was pretty limited. I told the GP I was struggling and she sent me to a psychologist who was not well-suited to me. I remember going in to appointments with a very self-destructive inner monologue and with the psychologist  having no idea what I was going through – because I chose not tell her! Despite having been out loud and proud autistic for many years it took me a lot longer to feel able to discuss my mental illness, apparently even to a psychologist. I felt I couldn’t share that I was having suicidal thoughts. I thought to myself “I am a public servant and a homeowner so how would that look?” I worried my work colleagues would somehow find out I was having those thoughts. I was too ashamed to talk about my illness or my thoughts. I imagine that I am far from alone in this experience.

In the years since then I have become a lot more able to talk about my mental health. I think it is essential to have these discussions. If nobody knows what you re going through then nobody can help. I remember wanting people to figure out how much I was struggling and for them to somehow spring into action to take away the misery and fear but of course that never happened. Nobody could read my mind! 

Autistic people can have significant issues in this space for a number of reasons:

• We have far higher rates of something called alexithymia than others do. Alexithymia is also called emotion blindness. It doesn’t mean a person has no emotions, rather it means they struggle to be aware of and / or articulate what they are feeling. If we don’t know we are having a hard time, how can we know to access assistance?
• Horribly we are still victimised, abused and bullied at very high rates. These things often lead to very low self-esteem and post-traumatic stress disorder, putting us at a far higher risk for mental illness and suicidal thoughts. 
• We so often get misdiagnosed and missed by mental health professionals. Clinicians may have a very limited understanding of autism. This means we often miss out on the tailored support we need which can be very frustrating and invalidating. Once again, these are risk factors, particularly if a person is in crisis and feels like nobody can understand or help them.
• The mask. Autistic people often mask ourselves in order to fit in and be socially accepted by others and survive in the wider world. This means that outwardly we are doing great despite what is actually going on. Once again, this can be a big risk factor.
• Many autistic people are socially isolated and disconnected meaning that we don’t have that protective factor against suicide that is knowing there are people who love and care for us.

Thankfully there are some useful strategies and protective factors that can be put in place to help address these issues. These include:

• Understanding that suicidal thoughts are something which need addressing and that it is best not to ‘go it alone’. Finding  someone to talk to is really important. For some people that will be a mental health professional such as a psychologist or counsellor but for others it will be a friend, partner or family member. Know that it is OK – and a very good idea – to discuss your thoughts and concerns with someone else.
• Know that accessing help – whatever that may be – is a good thing to do. I think it is a actually essential to access help in some form if you are having suicidal thoughts.
• There are some crisis services you can access although some are a bit patchy in terms of their effectiveness for autistic people. Lifeline in Australia has a 24 hour crisis phone line and also online real time chat with volunteer counsellors. I have found Lifeline to be very good in the past although they are not for everyone.  BeyondBlue also have a phone counselling service. There are also ‘official’ mental health crisis services. While some people report finding those unhelpful they can be useful to access as they can link you in with other mental health services if you need that. If you are concerned for your safety, emergency services can be contacted as well (ambulance etc). 
• If you are in crisis and fearful for your safety, one strategy I find helpful is to remind yourself that the intense period of crisis generally lasts for between 15 minutes to one hour. So you do not need to get through the rest of your life with these intense distressing feelings, just get through a short space of time.
• If you can, it can help to distract yourself when in crisis. This basically means engaging in an activity that will keep your brain occupied so you are not experiencing the height of the crisis. Distractions are different for each person – try one/s that work for you. 
• Being around people and / or pets you love and care for when having a crisis and having suicidal thoughts is a very good emergency strategy. Most people will not act on those thoughts when they are around others. It can be difficult asking someone to spend time with you but it even helps some people just going into a public place until the crisis passes and the impact of the thoughts lessens.

If you are in crisis or need assistance, contact for Lifeline in Australia is https://www.lifeline.org.au/about-lifeline/contact-us and their crisis phone line is 13 11 14

 

This is an article on a topic I am sadly all too familiar with: Bigotry and bias. There are a few concepts to be aware of in this space and the first is oppression and disadvantage. I spent four yeas as a socialist in my youth and I have been discriminated against as a member of  various groups for many years so I have given this topic a lot of thought. Oppression and discrimination  are not the same as just being mean – although the two tend to be related. An oppressed or disadvantaged group is one which is structurally and historically disadvantaged in society. By that I mean that others who share a characteristic – for example being autistic – face similar sorts of issues. Discrimination tends to generate a number of problems for people – both practical things like being excluded from employment or education and personal, individual things like self-hatred or under-confidence. Bigotry is a social issue but also a personal choice. Bigoted people can change their views and behaviour. This is a complex issue.

Disadvantage does not necessarily preclude  a person from achieving what they wish to but they tend to have to overcome a lot more hurdles to get there than people who do not face disadvantage might have done.

Another important point about people who are disadvantaged or oppressed is that they can be prejudiced against those from other groups. While this might seem contradictory it definitely happens. As a non-binary person I have experienced bigotry from some in the autism community. While it would make logical sense that those facing disadvantage would be respectful of others, sadly this is not always the case! People also can self-stigmatise and judge and hate themselves and try to remove any associations or linkages to the disadvantaged group they belong to. Being oppressed or disadvantaged also does not necessarily mean someone is a passive victim, or for that matter a big revolutionary! People are just people living their lives. We are all different. Belonging to a disadvantaged group doesn’t necessarily indicate anything about a person’s character or personality.

An important concept around these things is intersectionality. Intersectionality is where a person belongs to a number of disadvantaged groups. When I talk about autism and intersectionality, the example I use is that an autistic Aboriginal woman living in a regional area is almost certainly going to experience life very differently to an autistic white man living in a wealthy suburb. Both people share membership of the autistic community  but each has a different set of, well differences which will impact on how they access services and interact with the world. I find intersectionality to be a really useful way of looking at difference and oppression.

Here is the thing I imagine people might be waiting for… the dreaded ‘political correctness.’ Political correctness is quite a maligned concept but at its heart is something really positive which everyone can benefit from: respect.  Listening and learning from others’ viewpoints goes to respect. Helping to even out the disadvantage by assisting someone, for example through affirmative measures in employment goes to respect. Not using offensive language and stereotypes goes to respect. When people complain that their ‘freedom of speech’ is being attacked by people not wanting to be insulted and vilified baffles me. Why would anyone want to be disrespectful to others?When as many people as possible support and defend others from bigotry it puts the bigot on the outer.

I believe that respect is the key to addressing bigotry and discrimination. I cannot love respect more! It is kindness and decency. I have faced a lot of discrimination, bullying and abuse over the years so when someone is respectful and particularly when they go out of their way to be respectful I feel great. Being a member of disadvantaged groups can be pretty soul-destroying at times. Showing respect and including others is a great counter to that.

Some quick thoughts on oppression, diversity and respect:

• Someone’s identity is their own. How they define themselves is is the correct way, even if it doesn’t seem right to you. It is their ‘them’ after all!
• You may not see the impact of being respectful and inclusive but it can make a huge difference for a person. Being respectful is a small and immensely important way that everyone can change the world.
• Not everyone in disadvantaged  groups identifies strongly as  member of that group, or at all. This is their business and is perfectly fine! Once again, it is their ‘them’.
• Oppression, bullying and discrimination can have an immense toll. People can hate themselves and it can lead to self-destructive behaviour.
• Judging someone from a disadvantaged group through the lens of privilege doesn’t work. ‘They should just do this….’ isn’t dreadfully helpful.
• Being paternalistic is also not helpful. 
• We start out equal. The other issues are applied by humans. There is no real basis to racism or ableism or anything else – they are things humans have learned to do. Knowing this is a good place to start addressing it.
• Individual action alone will not fix this stuff but that is no reason not to do what we can as individuals.