Different is not less, its different: Unpacking assumptions around experience

There were a number of areas where autistic people interpret or experience  things differently to neurotypical people and where we often get told we are doing something ‘wrong’. Our lack of proficiency at something like non-verbal communication indicates to some that we are in need of some sort of ‘fix.’ I would suggest that no ‘fixing’ is required, just more understanding of and respect for the validity of different perspectives.

This post examines four areas where this issue occurs. These are sensory sensitivities, eye contact, body language and facial expressions and unwritten rules. 

Sensory sensitivities

Autistic people often have something called sensory processing disorder. While this is not exclusive to autistic people, it is very common for us. Sensory processing disorder means our senses are significantly heightened. Things can be too loud, too glare-y, too smelly and so forth. The impacts can be extreme. Earlier this year I had breakfast why some community leadership folks and someone ordered an omelette with black truffles. I really don’t like eating  mushrooms or fungus. The smell fo the truffle was so overwhelming and horrific that I had to move several tables down until the offending stinks things were consumed! Sensory issues have resulted in people selling their home or leaving their job.

There its an additional issue with sensory issues: many people are unaware they exist which makes it hard to get any accommodations or understanding. Your senses are your reality, your truth,. People understand the world through their senses. So when someone comes along and says their senses are extreme and unpleasant, this can get ignored or misunderstood. This can lead to someone and their sensory experiences being dismissed.

What is the solution? Well I think this one involves people who do not experience sensory issues understanding that others might experience in this area and adjusting their response accordingly., It requires a shift in thinning too understand sensory input can be different for each person.

Eye contact

Autistic people generally don’t willingly make eye contact. For many of us eye contact is extremely invasive and unpleasant. Some people feel physical pain when making eye contact. 

In many societies eye contact is seen as essential to good communication. This can result in autistic people being forced to make eye contact so as to supposedly ‘improve’ our communication. This is cruel and coercive. In fact eye contact isn’t the universal pinnacle of communication anyway. In some societies it is considered disrespectful to make eye contact but try telling that to some ABA* therapist harassing children to do something which goes against everything they know and causes them distress and pain.

The other issue with forcing eye contact is that it simply doesn’t ‘work’ in terms of building effective communication. I tend to looking the general vicinity of someone forehead, simply because eat is easier than having people assume I’m being somehow rude because I’m not looking at them. Very occasionally I accidentally stray into looking in their eyes. It is like they can see into my soul and I can see into their soul – not pleasant! And actually not very useful in terms of communication. If I make eye contact my entire attention will be filled with the unpleasant sensation and I won’t be able to take in what is bing communicated.

Eye contact is an area where neurotypical experience is privileged a lot of  the time. Autistics are seen to be ‘doing it wrong’. Rather than assuming we need to do eye contact to communicate it would be much better if autistic experience was understood and respected and people learned that for some of us, not looking does not equal not listening and that this is OK.

Facial expressions and body language 

Autistic people often struggle to understand facial expressions and body language and also things like tone of voice. This does not apply to all of us but it is very common. This is another area where many neurotypical people often seem to assume that everyone understands these things. This means when we miss something – such as someone being sad – that we are viewed as thoughtless and callous. I understand that this may be something which feeds into the myth that autistic people lack empathy.

The meaning of facial expressions and body language can be learned but it is a tricky thing. For example I understand facial expressions in films that I have watched many times over but this doesn’t translate into conversations because it happens too quickly and most people don’t like me staring at them as if they were a movie! 

Once again, some ‘therapies’ teach this to autistic children-  or at least they try to. I was in a conversation with a former ABA therapist (and yes, it was a very interesting conversation!) who told me how they would ‘teach’ autistic kids facial expressions using emojis but for some reason it wasn’t effective! I explained that the reason not wasn’t effective was probably related to the fact that a cartoon or emoji is very different form an actual human face. Despite that, many autistics don’t really understand emojis. I am one of those people. The five or so emojis that Facebook has for responding  to posts are OK and i get the vomit one and the laughing one but aside for that I have no idea what they are meant to represent! Once again this misconception that autistic children can be ‘taught these things using strategies that might be effective for neurotypical children but which demonstrate a total lack of understanding of autistic experience is just not right. These attitudes also feed right into the idea that autistic people are broken, in need of ‘fixing’. unreachable and remote. 

Unwritten rules

In the world there are a bunch of unwritten rules, Neurotypical people often understand these instinctively. I always think it is a magic trick because it is completely  alien to me. I know that there are unwritten rules and I can learn most of them once I know they exist but the amount of social faux pas I have had related too misunderstanding unwritten rules is large! People who instinctively ‘get’ unwritten rules often fail to even realise that their ARE these rules. Even  if they do they may not realise that autistic people find them baffling. It is like the sensory issues – people tend to believe that their experience is correct and others’ experiments are either a deviation from correct of that they simply don’t exist.

Conclusion  

All of these considerations and issues seem to come down to a few things which need to happen.

  • Understanding and knowledge of autism and autistic experience
  • Respecting difference an knowing that some people have a different experience
  • Not privileging neurotypical experience as the ‘right way’ of doing things
  • Listening to autistic people.

If this happened I think these issues probably wouldn’t be an issue. #DifferentNotLess

*ABA (Applied Behaviour Analysis) is a ‘therapy’ for autistic children which focusses on rewards and punishments and has a strong focus on conditioning autistic kids to appear less autistic. ABA is implicated in post-traumatic stress disorder and goes against everything that myself and fellow autistic advocates work towards.

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Why I talk about mental health 

Like a great many people in the world – including a lot of autistic people – I have a mental illness diagnosis. In my case I have an atypical sort of schizophrenia / psychotic disorder which I have been treated for since 1995. I take daily medication and on several occasions I have been very unwell. People who see me now tend to comment on how I am very self-aware and insightful and I am very clearly in charge of my mental health and wellbeing but this was not always the case. These days I can converse with the crisis team or my psychiatrist and articulate my needs to them. However, in the past I was institutionalised and the largely at the mercy of my illness. 

While most of my advocacy is focussed on autism, a lot of my experience is tempered by my constant negotiation with my errant brain. Everything I do is viewed through the lens of ‘will I be able to keep my commitments or will I be too unwell?’ Between 2010 and 2013 I was extremely unwell and took nine months off work and and had eight hospital admissions. I was sustained by my wish to keep my job and my home. I managed to do this through a combination of the support of my managers at work and the health case managers from HR as well as the support of my parents and some great friends and my own determination. But while my struggle is internal a lot of the time there is another struggle: that of the way the world and many of the people in it view mental illness.

How many times have you heard someone – or yourself – use the term ‘insane’ or ‘crazy’ or ’mental’ to describe something bad? I know I do it quite frequently. It is ingrained and it is everywhere, yet few people notice it, even less complain that it harmful or discriminatory.  How many times is medical terminology such as ‘psychotic’ used incorrectly and out of context? Semantics might seem a bit nit-picky but in fact that is far from the case. The term ‘psychotic’ relates to a state of psychosis which is where a person believes unusual, irrational  ideas and can experience additional bits of reality – like hallucinations such as voices. However, when people say ‘psychotic’ in the media the word is almost always used to mean psychopathic or violent which are in fact totally different things. So why does this matter? Well imagine you are me with my psychotic illness and you have started in a new team at work. You don’t know your manager or colleagues well and then you notice your world getting more frightening and confusing. You try to manage it but eventually you need to take time off. So what will you say to your manager about your absence? How do you frame the nature of your illness – if you feel strong enough to tell them about it at all? I have had this dilemma many times and it is really hard working out how to explain even that one thing of the meaning or psychosis. Now while I have got you imagining things, then imagine that you are not extroverted, confident Jeanette who has been talking about autism and mental health to audiences since 2005 but that you are young and shy and self conscious and have just been diagnosed with a serious mental illness. What are you gong to tell your boss about your absence? I know quite a lot of people who just simply leave jobs rather than have that conversation, and given the stigma surrounding mental illness, that is hardly surprising.

That is one tiny fraction of what life can be like. Some other major challenges are assumptions that people with mental illness cannot work or do other activities. On of the biggest issues seems to be a public hospital system that most people I have spoken to who have been involved in – including me – have found quite unsupportive and institutional. They recount being either infantilised or demonised  a lot of the time. In fact in my own experience most of the terrible invalidation and abuse I have experienced has happened in hospitals and other settings which were supposed to be therapeutic. And autistic people with mental illness very often experience a range of other discrimination, stigma and ableism on top of the stigma in response to mental illness. Just talk to pretty much any autistic person who has been in the public psychiatric ward or who has tried to convince a doctor who misdiagnoses them that they are in fact autistic.

Mental illness is still in the closet a lot of the time and this really needs to change.

I was part of a comedy night for mental health week a few years ago. It was a great thing with some actual comedians and then me! At the end, one of the audience members came up to talk to me. She told me she was a nurse in the psych ward I was in on and off between 2010-2013. She told me how wonderful it had been having me in the hospital because I talked about rights and empowerment. She told me she hadn’t been aware of that before she met me. This person had been a nurse for 25 years! At that point I realised that there needs to be a much deeper discourse on the rights and needs of  people with mental illness. Why can’t we have pride for people with mental illness too? I think I’m up for that. Mental illness is really nothing at all to be ashamed of. If anything, I am proud at how I manage my illness and have learned so much about living well and how I share my thoughts and insights with others to help them. Surely this is something worthy of some pride? I guess that is why I talk about mental health and will continue to do so. We need change in this space.

 

My mental illness is just one of my attributes. I don;t know why I would ever feel ashamed of it

And this isn’t meant to be a shameless authorial book plug, more something people might find helpful that I just happened to coauthor!  It is by me and Dr Emma Goodall, Dr Jane Nugent and I wrote this book called  The Guide to Good Mental Health on the Autism Spectrum  

The trouble with stereotypes or ‘The reason I wish I could drive’

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.

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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

 

“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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