I am free.

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

 

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“I’m OK thank you. I hope you are too.” – talking about mental health, suicide and autism 

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.

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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

 

Thoughts on understanding and addressing bigotry and oppression

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.

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Supporting each other through stress, whatever the cause 

At about 10:00 pm last night I called two friends – one right after the other. I was in a highly stressed state. I thought my hot water service was broken as the fuse switch had flipped twice and I had run out of hot water. Many people would find this somewhat stressful particularly on a weekend before an interstate trip. For me this anxiety was heightened many, many times. Home maintenance issues are by far the most stressful thing I experience at the moment. More stressful than Mr Kitty being unwell or issues with any of my work. I don’t fully understand why that is but I suspect it relates to fear of the security of my home. I spent many years homeless and living in supported accommodation before I moved to Canberra in 2007 and then bought Whimsy Manor in 2008. 

I love Whimsy Manor but when anything goes wrong – or appears to – I am thrust into misery and terror. This has been the case since I moved here. It has nothing to do with monetary issues or anything else remotely practical but it is very, very real. Last night I thought I smelled smoke coming out of the cupboard where the water heater was. I wasn’t sure of this but it seemed pretty convincing. Knowing how my mind works in time of stress I thought I should call a friend and confirm if there was an issue warranting immediate attention before called the fire brigade! Both of the friends I called were very supportive and understood how this issue was such a big one for me. One friend came right over and told me there was no smoke in my cupboard.  I sort of believed this but slept with the door to the kitchen – where the water heater is – closed and took Mr Kitty into the bedroom and got out his carrier in case we had to make a quick exit. I left the bathroom light on and set my alarm for 6am too! It actually seems to be the case that the water heater is OK and the fuse box had the issue as I now have hot water and am feeling a little foolish. I thought this was a great example of how to manage stress – and particularly supporting someone else to manage their stress.

Stress and anxiety are different for every single person. There are some things which almost everyone finds stressful. Common stressors are things like moving house, starting or finishing a job, having a serious illness – either your own or someone close to you, bereavement, serious illness or death of a pet, a relationship ending – those sorts of things. Most people will recognise these as stressful but for many people – and often for autistic people – our stressors can include some atypical things, such as home maintenance! One of the worst issues wth having unconventional stressors is that other people often don’t recognise on any level how serious these stressors can be. They might think ‘I don’t worry about that so when would anyone else?’

Some of the things people might find stressful that others may not really understand include:

  • Sensory issues especially if they are somewhere the person needs to spend time regularly such as home or their workplace
  • Interpersonal issues – often finding a person difficult, abusive or unpleasant but who nobody else can see an issue with 
  • New situations of any description, even ‘positive’ ones
  • Something which brings up traumatic memories which others are not aware of, e.g. an activity (sports etc) 
  • Any number of specific situations which ‘shouldn’t’ be stressful in the eyes of others but are, such as my own anxiety.

Being highly stressed about something others do not see as warranting that level of anxiety can result in a sort of invalidation, often unintentional, where the response we get is nowhere near commensurate with our stress level. An unsupportive response will most likely come across as unhelpful and dismissive. It also tends to increase the stress level even more as people feel that they can’t even get support from a friend! 

One issue that I have around this is that I have downplayed the extent of my own anxiety when speaking with others as I thought it was somehow silly to worry about hings which nobody else really worries that much about. It is actually impossible to get help if you don’t explain the magnitude of the problem or downplay what the problem is. In the last couple of years I have explained my issue and how even though it may seem to be an extreme reaction to a relatively minor problem, the stress is very real. I wish I had always done this because it makes it exponentially easier to get a suitable response form people.

Some thoughts to help support someone going through high anxiety – from any cause:

  • Even if it doesn’t seem worthy of worry to you, somebody’s anxiety is very real to them.
  • Validation is  great gift. Just saying to someone something like ‘I recognise that this is really awful for you. How can I help?’ can make a massive difference.
  • Remember that it may have been very hard for the person to share how anxious they are with you. They might feel a bit silly or ashamed to be anxious about something that they apparently ‘shouldn’t be worrying about.’ Acknowledgement of their very real anxiety can help the person a lot.
  • Be available where you can. Having friend to talk to about issues can be extremely helpful.
  • If in doubt of what the problem is, ask.
  • Asking your friend ‘What would you like me to do?’ can be helpful. Suggestions about a plan of action can also help to but be aware that your friend may decline your suggestions and that is OK. 
  • If you feel things are beyond your capacity to assist with or are worried for your friend’s safety, there are counselling services offered by Lifeline or Beyondblue in Australia and similar services in other countries. There are also mental health crisis services.  will add a caveat, particularly for autistic people, that these services can be helpful but sometimes can be a bit patchy in terms of how helpful they are. However, if you are concerned about a friend’s safety then it is advisable to contact either their doctor / health practitioner or a crisis service if it is after hours.

Your help and support can make all the difference. I know my friends’ support last night was invaluable.

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Activism, advocacy and influence (or why I keep finding myself educating people…)

This is a post about activism and advocacy and working to make the world a more inclusive and respectful place for autistic people and anyone who faces discrimination and prejudice. This is A Big Job and thankfully lots of people are doing it. Many people making a big difference are best described as activists. They call out injustice and make a public stand to make a difference. They are vitally important and I have endless respect for this means of bringing about change. However this is not really ‘me.’ I approach the issue from a different viewpoint. Anyone working in this space needs to have a form of advocacy which reflects their personal style and strengths. I am not an exception to this, and my way of trying to make the world a better place involves  being more of an “educator” than an activist.

There is something of an irony that I choose to come from the angle of ‘educator.’ “I shouldn’t have to educate people”…  is a phrase which I hear a lot from fellow autism and disability advocates and activists, referring to the perceived need to teach people lacking knowledge about our experience and address their ignorance. As a sentiment, this is absolutely right and understandable, but I find it impossible to actually implement this as a strategy in my own life. A lot of my work involves ‘preaching to the choir’ – that is talking about autism with people who share my views or have a similar view. However, quite a bit of my work is with people who, for a variety of reasons, have a very limited understanding of autism.

Today I was talking to someone I know peripherally who was talking about a friend of theirs who has an adult autistic daughter. ‘She has no empathy at all…’ the person said to my slightly horrified face. I felt in this situation – as in many, many other similar ones – that if I didn’t say something then that person would be unaware that it is very rare for autistic people to genuinely lack empathy. Putting on my ‘I’m going to be patient and explain this’ “hat” meant that I got a chance to talk about some of the misconceptions around autism and empathy with this person. It was a hard thing to do to hide my impatience and frustration but (hopefully) my bit of education was a positive thing which might change this person’s views.

I have similar conversations every week. I am told I have a reputation for being very patient in my interactions with people who don’t know much about autism and / or who hold views which are strongly contrary to my own. I am actually not patient in my thinking at all. I find ignorance extremely frustrating and at times very hurtful. Where I exercise patience is in my delivery. I am quite good at hiding how bothered I am in the interest of not ‘losing’ someone who I think actually needs the benefit of an autistic viewpoint – or several. To my mind, the people with the most influence on autistic people – such as parents, educators, clinicians or employers – need to understand the sorts of things which might be self-evident to many autistic people but not to everyone. I take the view that we are all on a different journey and we are all at different points on our respective journeys. Others do not share my views or experience so I tend to think giving them a hard time for simple ignorance is likely to be counter-productive as how can I expect them to see things from the perspective of MY journey without explaining it to them?

I have had experiences in the past where I have come in hard with some people and instead of seeing it as a helpful discussion to support them to interact and understand autistic experience better, they have actually viewed it as an attack. Not only did that mean I ‘lost’ those individuals in terms of my work but I imagine it might have put them off listening to other autistic people as well. I do seem to be very good at explaining concepts to people that they haven’t come across before. I always joke that I would make a very good politician with such a skill! I spent many years of my life living among people who were more than capable of physical violence in response to any kind of dissenting acts or views so after that, being ‘diplomatic’ usually comes fairly naturally for me. 

I think some people in the community might think I am a bit ‘soft.’ I don’t think I am. I am comfortable with my autism world ‘politics’ and feel that my work benefits other autistic people and hopefully the wider world through doing so. I am reasonably confident that my actual message is perfectly good and reflects my passion for change and the need to make a better world.  However, I am not someone you are likely to find metaphorically ‘storming the barricades.’ There is a reason for this. I have a theory about the approach of activism and the approach of influence. Both of these are essential elements of conveying a message to my mind and often the message conveyed is very similar. However, influence and activism form two complementary but very different approaches. Activism in its purest sense involves delivering a message, stating a position, usually in a way which challenges the status quo and which is about getting message out to the world that things need changing. To be clear, the world needs activists, and activism is central for meaningful change. I do a little bit of that but I also do what I see as influencing, which better reflects my personality and skill set. Influencing is more about, well, educating people, I suppose. In my experience, it involves a lot of patience and listening to viewpoints which are quite upsetting at times. It is not for everyone. I often feel like I am a lightning rod for ignorance about autism with people wanting my opinion on something which is highly problematic and which I have to address.  I have to very consciously put aside my anger and frustration while speaking to the person in order to drive a message which will hopefully result in them seeing things differently and altering their view.

Of course there is a line with this at which influencing needs to give way to activism and holding people to account. For me that line is usually where ignorance moves into hostility and / or ableism. And being aware of when it is necessary to take someone to task rather than explain things to them is always tricky. It is one of those ‘rule of thumb’ things which always get me a bit perplexed.

So I guess I sit in an odd space with this approach to advocacy. It is very stressful a lot of the time and I often wish I did things differently but I also think my approach has hopefully brought some people into a more positive and helpful view of autism. I really wish I didn’t have to educate people but I think I sort of picked that as my approach. The really lovely thing – and this occurs maybe more often than you might think – is when people come around to the sorts of views I promote and thank me – and others presumably – for putting them on a different path which results in them being more inclusive, respectful and helpful to the autistic people in their life and to all of us.

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A response to hatred

This is a very personal post on a very political topic: bigotry and hatred.

Yesterday I was on the receiving end of some horrific bigoted ignorance – a person peripheral to my life who had no idea of what autism is or indeed that I am autistic, telling me a number of things they believe about autism – ‘I am sorry people are autistic.’ ’I am OK. I am normal’ and the clincher ‘That’s like people who are criminally insane.’ I am someone who knows what they are doing all the time but at that point I honestly didn’t know what to do. The stress and horror that coursed through me in that conversation was at a very high level. I somehow managed to remain a responsible human being and told the person to go away but I think if I hadn’t done that I may have done something I regretted.

The situation was made worse by the fact that I am fairly certain the person  wasn’t being intentionally hostile, those were simply their thoughts. It had a big impact on me. I am still struggling. I am a very out loud and proud autistic person. I consider myself quite hard to bully because I am so happy with who I am. I embrace my own identity. I have a strong and deep sense of autistic pride. I like myself. But when it comes down to it, it seems I am just as susceptible to hatred as anyone else. 

I have had a few thoughts on this incident which I thought it might be helpful to unpack as they relate a bit more broadly than my own sense of affront, hurt and anger.

  • I was upset because the person was being mean to me. However, I think I was mostly upset because there is a huge power imbalance at play. When the person made those comments it disempowered me and made me feel small and insignificant. I think the main reason the comments had such a big impact was that they confirmed a whole lifetime where similar things have been said. It was an individual confirming societal oppression of autistic people and Disabled people more broadly.
  • The comments did not happen in isolation. They built on feelings I have had since I was being bullied in school and taken advantage of by creepy men in my teen and early adult years. The comments expressed the message ‘you do not matter.’
  • I started to doubt myself as soon as I could process what had happened. Was I being sensitive? Am I a ‘snowflake’? It was like I was gaslighting myself. I think many of us do this when faced with similar experiences. We may have been taught to doubt ourselves from a lifetime of people questioning our experience or playing ‘devil’s advocate’ (And I’m not sure why the devil needs an advocate. I think he is probably quite capable of being an a**hole without help from humans!)
  • While the person who harassed me presumably didn’t understand what they were doing, that is almost worse than deliberate hostility. That a person was so ignorant of something and having no concept that those words might be very hurtful and offensive … well it concerns me what they might say to other people! And the impact on me was the same – or at least similar – to if the comments had been deliberately hostile. If someone accidentally shoots you, you are still shot.
  • When the anger had subsided and the stress clicked in I sought out support from autistic friends – that sense of ‘tribe’ is especially important when we are attacked I think. 
  • I had feelings and thoughts which were very concerning – impulsive, negative, self-destructive thoughts. These were all directed at myself and not the bigot. Blaming oneself when someone else wrongs us can be a sign of a lifetime of invalidation. In the heat of the moment I was angry with the bigot but when that subsided it just enhanced a self of self-hatred I was unaware I still had.

Bigotry is far from harmless. I have had trolls online in the past say ‘Jeanette is big enough and tough enough to deal with this.’ They are wrong. These kinds of  hateful thoughts break us a little and the more they happen the more we can become broken. It makes us mistrust others, like ourselves less. Fighting bigotry, learning to love ourselves for who we are, others offering genuine support and respect can help address this but it is never ever OK to belittle and insult someone based on them being autistic – or belonging to any other group.

‘This mask doesn’t fit me’

There is a hashtag – and a movement of sorts – going around the autistic community at the moment called #TakeTheMaskOff. It is based in the knowledge that ‘masking’ for autistic people (ie being less ourselves, less noticeably ‘autistic’ in our expression, when around others and in situations like school or work or relationships with neurotypicals) is damaging to our mental health, invalidates us and eats away at our sense of who we are. I completely agree with these concerns. Masking takes a huge hit to our identity and psyche but even so, many of is do it. With all the significant negatives it entails, masking is seen by many of us as less traumatic than the judgement and prejudice we know from experience that  we will experience as autistics in the wider world – otherwise why would we do it? 

I long for a world we we can actually feel comfortable being our wonderful autistic selves without fear of bullying, discrimination, unemployment, isolation etc. A world with no perceived need to mask our autistic expression is basically the end outcome I intend for my advocacy to contribute to bringing about.

I had some interesting thoughts around my own advocacy work, identity and masking. I spent from ages 11 to about 40 masking, trying to be ‘acceptable’ to others and squash down my identity and how I wanted to express myself. It took a huge toll. It demonstrated my lack of value for myself, my fear that nobody would like such a ‘weird’ person as myself. This fear came form very real personal experience of bullying and being victimised. Thankfully I am now out loud and proud autistic, brightly coloured and big and bold. I wear lots of colourful clothes and jewellery, have several coloured wigs and other essentially ‘me’ accessories. I give keynotes in rainbow boots and cat t-shirts. I laugh a lot and am one of those extroverted types who seem a bit less common in autistic circles. I admin my cat’s Facebook page.

I worry about my expression on occasion. Sometimes I feel like everyone else is doing ‘serious’ advocacy and I’m just getting around in rainbow wigs and things and not really doing much to help anyone. I was featured in an article summing up an autism conference  that I was a speaker at a few years ago. When the journalist wrote about all the other speakers, they mentioned the topic of their presentations and some key points of their message. However, when they got to me they had a picture of me, evidently delighted to be on stage with purple hair. The information readers got about my talk was this picture and  the text ‘And Jeanette Purkis gave a very entertaining talk.’ They didn’t even say what I was speaking about. 

This is difficult. I don’t want to be known for the form not the content but my colourfulness and extroversion is not an act or gimmick. It is me being me. I discovered a few years ago that for me at least, life looks better in shiny, bright and sparkly. My Autistic Pride is bound up in my ability to outwardly express myself the way I choose. I wear rainbow and sparkly things to my public service job, I dress up at home when the only person who will see me is Mfr Kitty and I suspect he doesn’t care what I look like as long as I provide car food and cuddles. Why do I do this? Well mostly because it makes me really happy. I think that my style is the opposite of a mask. I am not covering up myself and hoping no bigoted ableists will be horrible to me. I am expressing myself with pride and celebration. It has taken me a long time to realise this. I used to think that maybe I don’t take my role as an advocate seriously but I suppose the opposite is true. The other lovely realisation I have had is that my advocacy work introduced me to a lot of other autistic people and our community. It also introduced me to a lot of new thinking and views on empowering autistic  people to be our true and so often incredibly thoughtful, kind and beautiful selves. Through this I felt that I was being supported and encouraged to be my true ‘me’. So the autistic community and my advocacy work have helped me to take the mask off and I hope that I am reciprocating that for others through my work. That is a great thing, a great strength.

And while most of the time I am not wearing the mask, I still do it on occasion, not intentionally and often not consciously but it happens. The forces at play in society and in our individual lives that drive us to mask are very real and can be very dangerous. Taking off the mask is a key part of loving and valuing ourselves and having the self-esteem and confidence to be who we are, seeing ourselves as we are – valuable, worthy, legitimate just as we are. I am glad that many autistic advocates and activists are focussing on this.  We have the right to be ourselves.

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