New year reflection

I wasn’t going to do a new year’s eve post but I changed my mind! This will just be a short piece looking at what I learned this year and my plans for the future.

I had an amazing year in many respects. It was easily my busiest year to date. Alongside all my autism advocacy work – which was significant – I worked four days a week in my day job and started in a new team in January where I only knew one person. This took some getting used to by in hindsight it has gone really well.

I think it was a year of resilience and stamina and managing a huge workload while trying to be kind to myself. Whimsy Manor remains wonderful as does its furry inhabitant Mr Kitty. 2018 was the first year where I have realised that I have a very large profile, which is a very strange thing to apply to yourself! I mostly avoid thinking about it and focus on doing good job of whatever i’m working on.

Highlights for me were  MC-ing the National Awards for Disability leadership, featuring in national and international media refuting harmful statements about autism by a researcher, having a book I coauthored with Dr Emma Goodall published and having a chapter in the Spectrum Women book. Other highlights include featuring on a mural in Canberra and one of the young people I mentor getting into a graphic design diploma course straight after school and another getting a job at the Harry Potter shop, Quizically. Despite (or maybe because of) it being ridiculously busy, I really enjoyed 2018.

I learned:

  • I really don’t want to be anyone other than who I am
  • My very troubled twenty-something self is part of who I am now. I don’t need to fear that person
  • People love my work and it helps them in their life 
  • There is quite a large mismatch between my perception of my performance and others’
  • My workplace is amazing 
  • I know who I am. This has taken a long time to realise 
  • I have good judgement and I can trust myself to make the right choice 
  • ‘Fame’ and recognition are largely meaningless
  • I know quite a lot about autism 
  • There is a lot of very deep prejudice around gender diversity 
  • When you come out as being gender diverse you find out who your friends are – and aren’t
  • Embracing my gender identity has opened many doors and changed how I see myself and the world in many ways
  • Much as I hate it, I carry privilege and all that comes with it  – (white and middle class) 
  • I am stronger than I think
  • My mental illness does not have to destroy me and I can usually manage it when things get scary
  • I like and value myself
  • I am a proud Autistic and non-binary person 
  • I am motivated by the need to make change.

I don’t really set new year’s resolutions – why resolve to do something only on one day? However, I have some plans for how I approach life in 2019. 

I will aim to:

  • Be more compassionate of others, especially people who see advocacy as a route to fame and glory, which is one thing I really struggle with
  • Promote opportunities for more people 
  • Learn from others 
  • Listen more
  • Do better with taking down-time, which I am currently not very good at
  • Say ‘NO!’ more often
  • Maintain my friendships 
  • Work on some of the more difficult relationships in my life 
  • Appreciate the amazing life that I have.

I hope you have a great new year and that your world is filled with good things in 2019 and beyond. 

Purrs from Mr Kitty.   

Jeanette 

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Some of this things I did in 2018

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Coming home: The value of Autistic space

I just recorded a radio show with an autistic comedian who has only relatively recently come to embrace her autism. She mentioned an experience of speaking to another autistic person and each of them ‘getting’ each other. A non-autistic person observing said ‘you are in your own little world’. While that summary might be viewed as somewhat critical, the experience we have where autistics spend time with other autistics is indeed our own world.

I have spoken and written at length about the idea of autistic ‘language’ and culture. Put briefly, autistic communication can be viewed as a different language to allistic communication (i.e. the communication of people who are not autistic or neurodivergent). This is evidenced when a large group of autistic people get together. There are generally no communication misunderstandings or social awkwardness. However, if an allistic person enters, then they are the one who has issues with understanding social cues! As I see it, this language or cultural difference is a key element of neurodiversity. The idea of ‘different, not less’ is at the heart of this experience of autistic language and culture being equally valid, just different.

I want to look into the idea of autistic space in this post. Autistic space is where autistic people are in the company of other autistics exclusively. There is a variant where most people in the group are autistic as well which is maybe something more inclusive but in between the states of autistic space and general society, or ‘allistic space’ I suppose.

I have had a few experiences of autistic space in my life and all have been memorable. The first was almost 10 years ago, in 2009. I attended a conference and the second day of the event was a workshop for autistic women and girls. The facilitator was an allistic man – something which hopefully wouldn’t be the case if the event was held now.  However, in the event in 2009, other than the facilitator, everyone in the room was an autistic woman or girl – and I imagine there were a fair number of trans and gender diverse people. I had never experienced anything like this. It felt like I had come home. Everyone’s comments resonated with me. I felt included and supported and happy to be myself. That was fifteen years after I was diagnosed but I see it as the first ‘real’ day of being me. That was my ‘find your tribe’ (as some people call; it) moment. 

Last year I had another opportunity to be in autistic space, as part of a research academy run by the what I have found to be a very inclusive and respectful research body, the Autism Cooperative Research Centre. This event ran for a few days. There were some allistic people but they were in a small minority. Most of the facilitators were autistic and the socialising was just amazing. I met new people happily and revelled in this opportunity to be among my compatriots. I see autistic people as being like expatriates in a foreign country. We may have learned the language  and customs but we never quite feel we ‘fit’. I feel like spending time with other autistics is like meeting someone from home and being in autistic space is like returning to my homeland. 

One of the things I learned at the research academy was that there is a sense of loss or grief when leaving autistic space. Imagine spending your entire life masking and trying to be accepted, trying to act like other people in ways you don’t understand, being bullied, being criticised for being yourself, finding other people baffling and struggling to be heard and understood and then finding yourself amongst people who not only understand all those things but also see things in a similar way to you? I have found while in autistic space that I want to stay there forever. I don’t think I am alone in this. I  hope one day it will be a lot more common to be in autistic space.

My final foray into autistic space was at a wonderful event – a retreat for autistic women organised by the Sisterhood Society, an autistic-run organisation based in Australia. I had to leave the event half way through as I had speaking commitments and it was a real wrench. I have never had such a lovely time socially, meeting new friends and catching up with existing friends. I was simply filled with joy the whole time. I would gladly have lived there for the rest of my life!

Of course I do have a sort of autistic space all the time which is my home, Whimsy Manor. It is just Mr Kitty and me so usually there are no people but when there are, most of them are autistic. I am always very definite on the point that Whimsy Manor is a safe space and people will not be discriminated against or ridiculed. It is also a very ‘me’ place as I have made it mine. I do feel very safe and happy here too. I know that most other people do not get this possibility to have their own safe space. This is another thing I would like to see people having access to because it is amazing.

To conclude, I think there are lessons to be learned from reflecting on autistic space. I do not know many allistic people who have devoted a lot of time to learning to ‘speak autistic’, although I know a few genuine and wonderful allies who make a point of doing so, which is much appreciated. I think there should be more autistic space – more opportunities for us to be part of it and more respect for the value of it. We don’t really need paternalism and well-well-meaning people trying to do things for us. We need greater understanding and respect for our ways of being and the knowledge that difference is so often a positive. More understanding of the value of and need for autistic space and the reason it is important would benefit all sorts of organisations and it would definitely benefit autistic people. I love visiting my autistic homeland. 

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‘Why I cancelled Christmas’ – some thoughts and strategies on surviving the holiday season

It has got to that time of year where people ask me what I am doing for Christmas. I invariably say ‘I will be having quiet one.’ They usually look horrified as I go on to explain that I plan to spend the day with Mr kItty and all the people who live in my laptop and that instead of giving and receiving gifts, singing carols or eating too much food,  I will be making artworks and writing. This will be the fourth Christmas I have not spent with family. It is not that I dislike my family members or somehow want to punish them. It is just that all the expectations and chaos of a big Christmas usually result in a meltdown and a lot of related stress for me. While for me the solution to this is avoiding the whole thing, I understand that this is not the case for everyone.

Autistic people can really struggle at this time of year. Some of the challenges include:

  • expectations and worrying the day will not be as good as it is ‘supposed’ to be
  • Food revulsions and pressure to enjoy ‘delicacies’ which have a horrible taste or texture or are unfamiliar 
  • Sensory assault from bonbons, people talking loudly, loud toys and other things
  • Anxiety around giving and receiving gifts. ‘What if I didn’t get the right thing for…?’
  • Too much food and / or too much alcohol  
  • A big disruption to routine
  • Christmas decorations can be distressingly bright and sparkly or visually chaotic  
  • Compounding of tensions in families which often occurs at the holidays. Just imagine if for example, Grandpa doesn’t ‘believe’ in autism….
  • Christmas can highlight differences in philosophical and cultural beliefs – and any existing  conflicts in the between family members
  • If someone isn’t working or doesn’t have much money – as is sadly the case for many autistic people due to social discrimination in employment and other issues – this can be very obvious in disparity between the value of presents and contributions to the meal and result in feelings of shame 
  • Overwhelm and overload and potentially meltdowns caused by all of the above.

There are parts of celebrating Christmas which can be especially problematic for autistic kids. Santa at the shopping centre can be terrifying with loud noises, queues of other kids and their parents and flashing lights and sparkly things. In recent years many shopping centres have a ‘sensitive Santa’ for autistic kids and others who need a quieter experience but for some kids even this is too much. While the photo of children with Santa is seen as an important thing for many parents, if your child cannot sit for it then maybe be a bit creative. Get a parent or adult the child trusts to dress up as Santa Claus. If the child believes in Santa maybe be creative and say that the parent is a delegate of the ‘real’ Santa or similar. I am a firm believer that if putting autistic (and any other) kids through high anxiety and overload for something which is not really that important or can be replicated in an easier and more inclusive way, then don’t put them through the drama. We have enough challenges with the things we actually need to do without having stress in non-critical things that can be avoided! That goes beyond the Santa photo as well. If children find something which is supposed to be fun and a celebration highly stressful and unpleasant it is not a good thing. I always think that things like birthdays and Christmas celebrations are meant to be for children to enjoy so if children are in fact experiencing the opposite of enjoyment it might be time to consider some changes to the way the celebration happens. 

Many autistic adults may be spending Christmas alone, like i am! I would say if this is you, think about whether or not it worries you. If it doesn’t then yay to that. Have a great Tuesday. If it does worry you, there are a few strategies which can help. I know this because while I have not celebrated Christmas by choice for some years now, I still have some feelings of regret at being alone on a  day when so many people are with their loved ones.  What I do to address this is plan the day. I try to do something enjoyable and affirming. I also try to have some social time in the lead up to Christmas and in the few days afterwards. I spend Christmas online as well, chatting with friends and supporters all over the world. Do something really nice for yourself if you can. I will be cuddling Mr Kitty and I will sleep in without setting the alarm – which almost never happens! 

Quick tips on spending Christmas alone include:

  • If you are not bothered that is great
  • If you are concerned, plan something enjoyable 
  • It is important to remind yourself that the social expectation around Christmas isn’t ‘real’
  • Aim to view it as just another day  
  • Do something affirming 

And just to finish up with, here are some tips for an autism-friendly holiday season and Christmas  celebrations:

For parents 

  • Don’t assume all kids like Christmas 
  • Ask your child about what they like – and don’t like – about Christmas 
  • Be aware receiving and giving gifts may be anxiety-provoking
  • Ask your child what they want for the Christmas celebration 
    • To the best of your ability, incorporate their wishes 
  • Be aware of potential sensory issues with decorations, bonbons etc
    • Ask if there are any things your child does not want to be part of the celebration 

Christmas celebrations can involve:

  • Acknowledgement and affirmation of all family members and others attending 
  • Being accessible in terms of the sensory needs, social needs and likes of all involved
  • As with most things there is no need for hard and fast ‘rules’ – can be flexible 
  • It should be fun and enjoyable 
  • It should ideally respect the needs and preferences of all involved

So Merry inclusive Christmas to all who celebrate it and happy Tuesday to those who don’t! 

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‘Sticks and stones will break my bones AND words can really hurt me’ – the important of language in inclusion 

Over my many years as an autism advocate I have met many people who complain about ‘political correctness.’ This article is my response to this. 

A few years ago I was asked to give a talk by a non-autistic, parent-led group. I knew some of the autistic parents in the town my presentation was in and had been doing work with them for some time. The organiser of the event warned me about ‘some hard-line activists’ which I worked out meant my autistics parent friends. At the talk, the ‘Dorothy Dixer’ (i.e. ‘easy’) question to me, aiming to put me at ease was from this event organiser. They asked me ‘how do we manage all these politically correct extremists?’ Not so much a ‘Dixer’ question but I answered it anyway. I said that ‘political correctness’ tends to be an insulting way to describe inclusiveness and wanting to be respectful of people from groups that face disadvantage in society. As such I didn’t want to do anything to ‘address political correctness’ and said it was a good thing to have. Not sure what the event organiser felt about that! It did highlight some of the issues so I’m glad they asked it of me.

This is a post about the meaning behind words and how they can drive respect and understanding or conversely fuel the fires of bigotry. It is a post on some ways to demonstrate respect and care. 

One of the key areas around language and autism relates to identity. Autistic people describe ourselves in a number of different ways, such as ‘I am autistic’, I am an Aspie’, ‘I have autism’ or ‘I am Autistic’. My understanding of identity is that the way a person chooses to identify or describe themselves is their identity. It can’t really be ‘wrong.’ The issue often comes when others impose their views on how someone ‘should’ identify themselves. My own experience is a case in point. I describe myself as ‘I am autistic’ or ‘I am Autistic’ on occasion too. This form of autistic identity is known as ‘identity-first. It is echoed in other communities such as the Deaf community. It comes from a view that autism is an integral part of who I am. I am inseparable from my autism. If you ’cured’ it I would cease to be me. It also comes from the idea that I am proud to be my autistic ‘me’.  Many health and disability workers have been taught to use ’person first’ language (ie ‘I have autism’). They are often told that person-first is ‘correct’ and identity-first is somehow putting people down. I cannot count the number of times some well-meaning health worker has explained to me that I should say ‘I have autism’ because I am doing myself a disservice being identifying as ‘Autistic’. Yes, I have no words in response either. Correcting someone on how they define themselves is very unhelpful, even if done with good intentions. My rule of thumb for identity is that however a person chooses to identify is their identity, no matter what anyone else thinks. It is, after all, their ’them.’

Some words are tricky because they are used and understood differently by different people. I was recently on a radio show alongside another person with disability and they thought the term ‘Disabled person’ was offensive whereas I have a different view. Some people – including me – view disability through the social model rather than the medical model. The social model of disability essentially states that people are disabled mostly through social context rather than us being somehow ‘broken’. If everyone in the world bar one person was a wheelchair user, that one person would probably be quite disabled in their experience of things. They would have to crouch down to get around buildings and the world would not be accessible for them. As I view disability this way, I often use the term ’Disabled people’ (note the upper case ‘D’), as a way of talking ownership of the word and reflecting that idea of the social model which implies that idea of Disabled experience, rights and culture.

A lot of the language around disability is problematic but not everyone knows that. There is someone in my life who needs to remain in my life but who I won’t name who seems to have little or no understanding of this issue. This person is confused when I pull them up for using the ‘R’ word – one of – if not the – most offensive thing you can say to describe a Disabled person. They have no concept that this isn’t me being ‘difficult’ but that they are saying something highly offensive to a lot of people, not just me. If someone expresses distress in relation to a word or phrase it is usually best to take that on board. Apologising is a good step followed by not using the word or phrase again. Even if it doesn’t seem upsetting and offensive to you it may well be for others. Once again it isn’t about somehow censoring your words, just being respectful to others’ needs. People may have a history of abuse and bullying by people using those sorts of words. I know I have, so when someone says it I am right back at school being hated by pretty much everyone. I find it helps to think of it like a horrible racist slur and just not say it.

I imagine to the uninitiated all this might be a bit challenging to get across but it is actually very important. That old saying ’sticks and stones will break my bones but words will never hurt me’ is actually a long way off reality. Words and how we describe ourselves – and are described by others – form a huge part of our understanding of identity and difference. Rather than thinking of this as onerous, see it as a means of demonstrating respect and care for others. If you want positive relationships with people from diverse groups then showing respect in how you speak and the ability to politely and sensitively ask if you don’t understand is going to make that happen a lot more easily. Words really do drive meaning and understanding. I could write  a much longer post on this, particularly around identity, but I shall leave it at this. 

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A small shift in thinking – positives of autism that are often not seen as such

I used to go to a church group. They were mostly very friendly and non-judgemental but one thing used to make me cringe. There was little boy who was four and I’m not sure if he had a diagnosis but I am fairly certain he was autistic. He was easily the most enthusiastic member of the congregation and would happily suggest hymns and offer his thoughts on the service. He was a lovely child but every time he said something, many of the adults would tell him to stop talking. It seemed odd that the same adults wanted the kids to be more involved in the service but this little person was extremely keen to be involved but this wasn’t OK for whatever reason. How the boy was treated broke why heart but also made me quite angry. I talked to a few people but sadly few of them ‘got it.’ What seemed to be happening was that a child’s enthusiasm was seen as a problem because it didn’t fit with the expectations of behaviour. The little kid was extremely gracious and I didn’t once see him respond angrily when a roomful of adults were shutting him down. This got me to thinking about places where autistic people have a lot to offer but may be attacked and criticised for it rather than it being seen as the strength that it is.

Passionate interests are an important part of this. Autistic people usually have at least one thing that we love more than anything else and are focussed on. Passions (sometimes known as ‘special interests’) can be a conduit for learning and wisdom. Many academics who are the world’s foremost expert on a topic are autistic and following their passion. Passions really can change the world. There are many famous  autistic people  whose passion has had a huge positive impact, from science to entertainment to inventing Pokemon! Yet so often our passions are termed ‘obsessions.’ This seems particularly to be the case for autistic children. I have parents telling me how worried they are that their child spends so much time on an ‘obsession.’ For autistic people  our passion often represents the most rewarding and enjoyable thing in our life. Having that taken away is a cruel thing and usually unnecessary. Certainly on occasion some autistic people have a passion which is negative or damaging but most of the time our passions are a great thing. I would recommend that people see beyond the ‘obsession’ to what it actually means – a strong engagement and interest in something which gives pleasure and engages and energises us. 

Our different take on life and the world and all that is in it is often seems as strange or ‘weird.’ We approach problems differently, often using logic. This is actually something which can be really useful. In the workplace, innovation is considered important and autistics often have innovation in spades! The approach to life that is so often criticised can in fact be an enormous positive. We can be amazing problem solvers.

We are often criticised for focussing on the small things, the details. In fact this ability to notice errors and see the smaller things can be a big plus in a range of settings, such as at work, where our skill as proofreaders and reviewers comes into its own. I am public servant and my skills at spotting errors in long documents has always been prized by managers.

There are many areas where autistic people face criticism but where our approach is actually a positive. We can have skills that others are incapable of. Instead of judging us and shutting us down it would be far preferable for people to recognise our skills and attributes for the positive that they are. This goes directly to ideas of neurodiversity and ‘different not less.’ If you view autism as being a negative thing, an affliction or curse then attitudes are likely to focus on the perceived negatives. However, if you approach autism from the perspective of strengths and respecting difference then the kind of positive attributes we often have are viewed as something valuable.

Seeing autistic people as we are and knowing and respecting us is better for everyone. What can be viewed as a deficit may actually be a huge strength. To see our approach and divergent take on life as a strength really only requires a relatively small shift in attitude for most people.  If only the church congregation in the story at the start of this article had seen things differently and embraced the young boy’s great attitude and enthusiasm. Instead of shushing and tutting they would have seen what the child who evidently loved church had to offer rather than being irritated.

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