‘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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Let’s talk about sex…and disability 

I had the great pleasure of being part of a panel at the Women with Disabilities ACT Annual general meeting last Wednesday. The topic was safe relationships and disability. There was a film called Mirrorball shown which was made a few years ago and looked at attitudes around dating, sex and relationships for people with (mostly intellectual)  disability. The film involved interviewing people with disability and their parents. The thing which struck me was the high level of assumptions of incompetence and deficits-thinking from many of the parents. They almost universally  saw relationships and dating for their kids as a negative and something to be concerned about. The panel included myself, an autistic asexual non-binary person, Katie, a heterosexual cis gendered young woman with down syndrome, Sue, the Chair of Women with Disabilities ACT and a doctor from the Sexual Health and Family Panning Clinic. It was a great discussion and it got me thinking about the way society thinks about disability and sexual relationships and why it needs to change. 

Historically people with disability have been viewed as sexless and childlike or as  oversexed and sexually inappropriate. There is little in between those two views. People with disability are also often viewed as exclusively heterosexual in their interest although in reality a lot of people with disability have a non-heterosexual sexual interest and expression. Sex is often viewed as something to discourage and a problem, rather than how sexuality is thought of for everyone else –  pleasurable and something positive to have in your life.

Another issue is around children. When I was kid in the 1980s, my mum worked in a doctor’s clinic as a receptionist. She told me how what she termed the ‘simple girls’ used to come in once a month and get their contraceptive so they didn’t get pregnant. While that might seem OK to some people, it is actually extremely fraught and problematic. Who makes that decision around controlling somebody’s reproductive rights? Are there any other groups in society who may not be good parents who have forced sterilisation?  Do they do that for people with drug and alcohol issues or people who are abusive? They don’t. This goes to the heart of the issues around sexuality and disability. 

I think the reason there has been and presumably still is control over the reproductive rights of women with disability and that sexual relationships are viewed as a negative relates to that view that people with disability are incompetent and need to be controlled and managed. There is often a sort of blanket view of the incompetence of all people with disability which makes no sense at all. I saw an example of this when I had a mental health worker who had a facial difference. People would speak to her like she was five years old. It used to really upset me and I would say ‘but your thinking and personality are in your brain, not your face!’ I know wheelchair users who get people talking down to them as if they are children and it baffles me. This results in people with disability being viewed as having pretty much the same needs and experience. This results in those view of incompetence and the need to have people doing things on our behalf.

When we look at sexuality another issue is at play as well. The idea of a physical or mental ‘norm’ and disability being a deviation from this. ‘But how can you have sex?’ people might ask incredulously. In society, things that are viewed as sexy rarely intersect with things viewed as related to disability. Sex is presented as the domain of conventionally ‘beautiful’, able-bodied people.  If you are physically, cognitively or mentally ‘different’ then the conventional view of sexiness does not include you. This can result in people being very uncomfortable to even think about, let alone discuss, sex and disability.

These things all point to the sexuality of Disabled people being something of a political act. we challenge the status quo simply by expressing ourselves sexually. It is one of those areas where I wish we didn’t have to be political because love and sex should not need to be. We should just be accepted and respected to do such things in the same way anyone else is. However, as we are not, bring on the activism I say! And this IS an area which requires activism.

On a personal note, I do not undertake sexual activity. I am not a prude and I am all for love and sex if other people are doing it, but I am asexual and have very little interest in sexual intimacy. As a disability advocate this causes me a lot of soul-searching and anxiety. I live a stereotype and it is a really unhelpful one. My asexuality is not something I talk about much and my concerns about it possibly justifying some unhelpful thinking are behind that. However when I stop and think about this, I realise the issue is not me or my asexuality but the existence of the stereotype itself. Asexuality is the way I am and I should not feel ashamed of that. Challenging that stereotype but being true to myself is probably a better approach than trying to hide away.

Things do seem to be changing in these areas, although maybe not as quickly as I would like them to! This is a huge area for advocacy as it goes deeply to the heart of ableism and discrimination. Our loves and relationships as Disabled people should be a cause for celebration and  joy not concern and worry. We have as much right to be happy in a relationship and to enjoy the pleasures of sexuality as anyone else is. We are not sexless children and we do not need control over every aspect of our sexuality and expression. The theme for International Day for People with Disability this year is empowerment and inclusion. Let us be empowered  to express our love and relationships in a way that might not be conventionally beautiful and may differ form the ‘norm’ but which is beautiful nonetheless. Let us be equal in our capacity to love and to be loved. Yes let’s talk about sex and disability and challenge the prevailing views so that people can express themselves and who they are sexually. 

 

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The secret of my success…(ful strategies), or managing adversity well

I am currently undertaking prep for a medical procedure which is unpleasant anyway but because I have done this three seperate times in the past and it hasn’t worked in any of them, the prep is twice as long and very unpleasant indeed. I have spent the past two days feeling very tired and confused and this is interspersed with drinking the prep solution which is a sensory nightmare requiring a large number of strategies to make it possible. Last time I did this which was only a couple of months ago, it impacted on the absorption of my mental health meds and, had I not made an emergency appointment with my psychiatrist who immediately increased my meds, then I would have gone into psychosis which in my experience can last for years and result in major disruption to my life and be very scary. Added to this I have eight presentations and MC-ing a national awards ceremony coming up in the next three weeks so being really unwell is not on my list of options. 

All off this is a perfect storm of nasty and stressful. So why am I happily sitting at my computer writing this blog post and not standing out the front of Whimsy Manor holding up a sign that says ‘The end is nigh’?? Why am I not filled with fear for the future and misery at having to go through this horrible medical procedure yet again? There are actually a few reasons.

The first is something called radical acceptance. Radical acceptance is not the same as ‘accepting’ that something horrible is OK and in doing so invalidating your experience. It is more about accepting things are how they are and you can’t go back in time and change them. From that position of acceptance you know that you are in control of how you respond to the situation. Regretting the past is the key to misery but radical acceptance is the key to managing life’s difficulties and being a lot happier then you would be if you spend your energy wishing that the past had somehow been different.

The second reason I am doing OK is that I have strategies. Strategies do not fix the issues. I still have to go through the medical procedure, I still have the worry about mental illness and giving all those talks, but strategies mean I can get through the worst of the difficulties. Strategies are individual to each person. They are about practical, sensible activities to lessen the impact of something. Some of the strategies I am using now include putting in place a practical means of making the prep solution drinkable. This is a strategy I have learned over the past three times of doing it so I am using knowledge from past  experience to improve a situation. Another strategy I am using is to practice my talks for early December. The more prepared I am, the less it matters what my brain is doing when I give the talks. 

I am also quite adept at the mindfulness style of seeing things. I try to not get bogged down in the past or terrified of the future but focus instead on the present. What I need to do right here right now. I could think ‘ugh, I have eight lots of prep solution to drink’ and become totally overwhelmed or I can think ‘Right now I have one cup of prep solution. The task at hand is to drink this cup. I shall dedicate my entire focus on doing that well in the present time.’ This might sound difficult but it is in fact not too hard when you start doing it. This makes a difference in pretty much all miserable situations. Once again , ti doesn’t make the issues go away but makes them easier to manage and removes a lot of the suffering element.

I am resilient in that lovely sense of being able to turn adversity into a teacher. This is a great quality and one I would wish for everyone else too. Resilience is a skill which takes time and practice to acquire but it is a very useful one to have. I find it stops me from being terrified of the future.

The last thing I am using to manage is my thinking and attitude. My approach is one of gratitude. I am grateful that I have the strategies I do. I am grateful I have a full-time job with sick leave and that there is no chance that when I return to work on Wednesday I will be told I am fired for my two day absence. I am grateful I have social media so can communicate with friends even if i can’t leave the house. I am grateful that I have an internet connection….I could go on. Shifting my focus from negative to positive is a hard thing to do but it is a skill that has improved with practice. 

These qualities do not fix the problem. Being accepting and resilient does not make colonoscopy prep taste nicer. The thing about all these strategies is that they make something horrible more manageable. They are actually more useful than magically removing the issue would be, because these skills  grow over time. In the past I was terrified of mental illness and getting unwell. Now I am not. I know if I am unwell I can manage it to a point and I know it will pass or at least change in its nature. Strategies give me strength to deal with every issue I face. They are a framework for dealing with life. They are all hard fought and won and came from me getting through some extremely difficult things. I guess that gives value to unpleasant past experiences if they can give value by becoming a teacher. I hope you got some value from my strategies. I do like to share helpful things as there isn’t much use to them inside my head!

*And for those of you who want the colonoscopy prep strategies I use…

  1. Make 1 litre of the prep and put it in the fridge until it is very cold
  2. Pour 250ml of the cold prep into a cup 
  3. Make up 250ml of stock / clear broth which is allowed in the liquid  diet
  4. Drink some of the stock and then drink as much of you can of the prep through a bendy straw
  5. Drink some of the stock. Keep doing this until both stock and prep are finished. Then repeat the process until the whole litre of the prep  is finished 
  6. In between cups of prep it can help to suck on a barley sugar – also allowed in the fluid diet
  7. Cultivate a sense of resolve and self-motivation. e.g. thinking ‘I can do this!’
  8. Set yourself a reward for an agreed milestone
  9. I often gamify the process by reminding myself of how much prep I have got through 

resilience doesn't fix your problems but it makes them a lot more manageable

Reflections on ‘lateral violence’ and the autistic community 

I was the note-taker for my workplace’s Aboriginal and Torres Strait Islander Employee Network annual workshop last week. While I no longer work in Human Resources I still do this role as I really enjoy it and apparently my notes are good and my presence appreciated. Each year a different facilitator has led the workshop. The facilitator this year was incredible. Her thinking resonated very strongly with me. She introduced a lot of different concepts around work and life and one of these really struck me: the idea of lateral violence. 

Lateral violence – as far as I know from a two day workshop – is an experience where oppressed people who have been attacked for generations turn that oppression inwards and instead of fighting the power, fight one another. In relation to Indigenous peoples it  is apparently directly related to the experience of colonisation and happens in countries around the world. The facilitator showed a video from Canada focussing on First Nations people talking about lateral violence. There was also a scripted drama bit which illustrated the ideas – in this case it was mostly about gossip and undermining other Aboriginal people in the workplace. As I watched this an, idea formed in my mind. It may not be a very helpful idea – I’m not sure – but what I saw in the video and the discussion seemed to be a phenomenon I know very well in my own life and have seen in the communities which I belong to.

I would love to be able to say that most of the jealousy, undermining  and snippiness I have experienced in life has come from other people and has been aimed against me but sadly the opposite is true. For many years  I was very insecure around others in the autistic community who were doing well – or at least, appeared to be doing well from where I was sitting. I would feel stressed and inadequate when someone got an award. I struggled to see autistic colleagues in news media, regardless of how important their work was. In fact the more influential their work, the more insecure and stressed I would get. I am a kind person so I didn’t ever want to act on what I saw as my shameful jealousy but it was definitely there. I just figured I was a horrible, petty person. It used to horrify me the thoughts which would come through my mind. I tried to tell myself that anyone’s good work for the community was a good thing but I seemed unable to get past the mean thoughts I had about other people, even though I knew they were essentially working for the same outcomes as I was and making things better for all of us. I saw this as a very big problem and it resulted in me feeling very guilty and sad to be apparently such an awful human being.

In recent years this has thankfully changed. In fact the final nail in the coffin of my poor thinking seems to have been linked to my coming out as non-binary gender recently. This was an affirmation. What the socialist in my history might call a festival of the oppressed perhaps. I finally saw myself as I am and was happy to be entirely ‘me.’ I didn’t need to compete or bring people down because the place I occupied didn’t need such things. I was also in a place of personal and professional empowerment and influence. The facilitator at the workshop talked about lateral violence being an expression of being powerless, a sort of deferred aggression which, instead of fighting to address the oppression, makes people fight others who are similarly oppressed. So lateral violence relates to powerlessness – perceived and real – so I guess it could be said that once I no longer felt powerless I no longer needed to want to bring down people around me and could focus on making positive change. 

I would never wish to appropriate an experience of Indigenous peoples or belittle their experience so I am quite tentative with drawing this parallel between autistic experience and something related to colonisation and the ongoing trauma from that which is still occurring today. However, the experience described in the workshop made sense to me. In my case, when I stopped being closeted as non-binary and started to get some influence and recognition as an autism advocate I could start to focus on the problem which actually needs addressing – ableism and discrimination. I don’t know if this is the same or a similar phenomenon to what was covered at the workshop, but the two definitely seem related.

Maybe this is something that many oppressed groups experience, deflecting oppression and prejudice into an unhelpful place and turning it on one another in the community? I suppose the difference this ‘lens’ of understanding presents is that the issues of jealousy, undermining fellow autistics, harsh criticism and competitiveness which ca happen in our community is more about powerlessness than individuals behaving poorly and being jealous of each other. If this actually is the case, it suggests that increasing our power and respect and pride – as individuals and as a community – might decrease the issue of turning things inwards to attack and criticise one another.

My thinking on this also suggests that to address this issue we need to work together and challenge that wish to be critical. We need to recognise it as another part of ableism and oppression that needs fighting just as much as bigotry, bullying or structural discrimination. I’m just sharing some thinking I guess but the workshop I attended was very unsell and enlightening. (And I took some very comprehensive notes with legible handwriting so, other than learning lots of very helpful information and expanding my thinking, I also did my job well!)

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All about allies

I went to Fair Day today – a celebration of all things LGBTI, Queer and wonderful. I don’t do many specific LGBTQIA+ social things so it was a really nice thing to do. I was with my friend Verity who is a wonderful ally on many different counts. We got to the venue for Fair Day and there was no parking so we drove around looking for a park. We found a quiet street where people had parked on nature strips and found a shady spot on the roadside. We weren’t encroaching on anyone’s driveway or really bothering anyone. As we got up to walk to the event an older man who was evidently very angry came and yelled at us for parking there. Belonging to a number of diversity groups as I do, I was pretty certain that my rainbow shirt and Pride badge were more the problem for him than the parking spot we selected. We were about to get in the car and get out of there and the cranky man’s neighbour said very emphatically ‘You can park in my driveway.’ She had a big driveway and there was another car full of people evidently going to Fair Day parked next to us. The woman said ‘This day is about friendship!’ and she and my friend hugged. It was a beautiful counter to a horrible exchange with someone who I am pretty certain was a nasty bigot. The woman who so gladly offered us a spot in her driveway demonstrated a beautiful, genuine alliance in the face of bigotry. This exchange prompted this post about allies.

There are different sorts of allies, but in this piece I will look at allies in the autism community.

The friend I was with today is also an ally. In fact I know a bunch of them. You can tell they are great allies because they actually listen to and respect autistic people. I think the best test of an ally is how they view themselves. If they feel that they are NOT much of an ally and it seems to be a good indication that their heart is in fact in the right place.

So what makes a good ally? In my understanding, a good, genuine ally:

  • Listens to autistic people as a matter of course
  • Bases their decisions (which impact on autistic people in their life) on listening to autistic people 
  • Recognises that the role of ally is always going to be a support role not a leading role 
  • Encourages and supports autistic people to take the lead 
  • Asks and doesn’t assume 
  • Wants to build their autism knowledge and listens to autistic people without getting defensive in order to do so
  • Will challenge ableist views 
  • Sees autistic people as equal, valued and worthy 
  • Is a genuine friend and supporter to autistic people
  • Doesn’t make it all about them 
  • Respects that autistic people are the experts on being autistic. 

And what makes a poor ally? In my experience an ally who is not genuine or helpful often does one or more of these things:

  • Drives their own agenda regardless of the needs or wishes of autistic people
  • Takes credit for autistic people’s work and ideas
  • Promotes themselves as an ally
  • Is condescending 
  • Thinks it is all about them
  • Doesn’t listen to autistic people and acts on the basis of not listening 
  • Discounts or totally ignores autistic perspectives on harmful therapies (e.g. ABA) and mindsets
  • Sees their role as ‘doing for’ or speaking on behalf of autistic people 
  • Is untrustworthy 
  • Denigrates and belittles autistic people, such as telling cruel jokes or being exclusionary 
  • Uses their involvement with autistics as a means to a goal (such as career advancement)  

I have come across both kinds of ally. I actually don’t think the second list describes allies. There can be an issue where people use the guise of alliance with autistic people as a means to an end – so basically they are using us. It can be very confusing trying to work out who is genuine and who isn’t. Another issue is that of nuance as some people fit a little bit in both camps. I am a very positive Jeanette and like to try to steer those people further into the camp of genuine alliance but it doesn’t always work that way sadly. I can usually pick the genuine allies because I want to spend time with them.

Genuine allies can make a world of difference in our lives. We need more of them! I hope that the information in this post will help both autistic people and aspiring allies understand what a positive and  respectful alliance can look like.  

44475045_246684462691302_8475219644771205120_nJust a picture of me being me 🙂