‘Good’ communication and Autism

If you visit the DSM 5 or the ICD 10 diagnostician criteria for Autism, probably the first thing which you will see is something about Autism being a deficit in social skills and communication. Many people think Autistics are poor communicators – well, it is in the diagnostic criteria so that isn’t particularly surprising.  I struggle with all sorts of communication methods: body language, eye contact, tone of voice, flirting, manipulation, sarcasm, and some idioms confuse me completely. The only communication which I can rely on in life (at least when communicating with those rather baffling non-Austic people) is my own – the words I say, the words I write.  I am terrible at communicating in the ‘traditional;’ neurotypical way. I don’t know what my face is doing to the point that people have thought I was a creepy stalker for staring at them, while in fact I was thinking about something and they were in my line of sight. I was unaware that they were even there! This sort of thing has always been picked up on, particularly by mental health clinicians and Autism professionals.

For me  the notion that Autistic people are poor communicators is rather fraught. It  also relates to some concepts around empathy.

One thing I have observed is that Autistic people are actually very good at communicating with one another and having empathy for one another. This suggests to me that we are actually more of a different ‘culture’ – complete with our own communication language and empathy and emotional language. When the DSM 5 talks about deficits in social communication, I think it refers to deficits in social communication with neurotypical people. I find that when a bunch of Autistic people get together, there is a lot of mutually understood communication and empathy going on.

Conversely, if Autistics are a separate culture, then so are non-Autistic people. So while the Autistic individual struggles to communicate with the non-autistic, so the non-Autistic individual struggles to communicate with the Autistic. The deficit is perhaps not that one style of empathy or communication is ‘wrong’ or ‘broken’ – rather that there is a difference. When communicating with a group of Autistic people, a non-autistic person is the one who probably has ‘deficits’ in their communication.

If I moved from Germany to Australia and was learning English, English speakers would say my communication was deficient. Put me in Germany with other German speakers and I would communicate just fine. It’s more a difference than a deficit. If the entire world were made up with Autistic people, I imagine the concept of communication deficits would be redundant.

So what do I do about this? I like to be understood by my audiences and when I speak or write and often my audience is made up of non-Autistic people as well as Autistic ones. I have to somehow work out how to present my information in a way that both groups understand and can relate to. I learned long ago that non-Autistic people and their quirks and nuances confuse me. I can hardly ever work out what neurotypical people’s motivations are, even on television programs or movies. I decided when I was younger that I couldn’t work out what the non-Autistic people meant with all their nuance and subtlety, but I would at least ensure that I could express myself in a way that they could understand . This might at least address issues of being misrepresented and misinterpreted. It has taken me a long time to get to this point but I think now my communication is very ‘NT-friendly.’ I still find being in interactions with Autistic people a lot easier and less confusing  but I can usually make myself understood to a fairly high granularity of meaning by my non-Autistic peers.

Some things can get in the way of communication, even after the cultural differences between Autistics and non-Autistics are taken into consideration. One of these is that nasty little thing called ableism and along with it, all its little friends; assumptions, prejudice, paternalism. I was at an event last year at Parliament House in Canberra. It was one of those ‘get dressed up and shake hands with politicians’ sort of things. A non-Autistic colleague and good friend, an Autism advocate friend and I were talking to some high-achieving person in the finance sector. She spoke to me for a bit. After we stopped speaking she said quite loudly to my non-Autistic friend ‘Oh, she is articulate isn’t she?’  I’m not sure what she was expecting of me as a three times published author, career public servant and Masters graduate but I don’t suppose those were the lenses through which she viewed me, an Autistic women.

Another challenge can be when people use communication methods other than speech. There is a long and shameful history of people – and more importantly service providers and  clinicians  – seeing those who are non-verbal as having a low intellect or intellectual disability. While this is true for some people, a lot of Autistic people who don’t speak all the time are viewed as lacking in intellect and tragically sometimes left out of decision-making and actions which impact on their own life. In fact, lots of Autistic and other people – including me – cannot speak in certain circumstances. When I am very unwell with my mental illness I am often non-verbal for some time or when I do speak it is garbled and non-sensical. I can assure you that almost everyone who sees me in that state treats me like I have some kind of intellectual disability. In fact a large proportion of Autistic people who are non-verbal are highly intelligent. Even so, I have heard stories of clinicians or even family members taking away someone’s communication device as a ‘punishment’.  Just think about that for a bit. ‘Jeanette, you are really stressed and having a meltdown from overload, so I will make your behaviour better by removing your only means to work through what you are going through and ask for help.’

So communication is not just as simple as ‘Autistic people have deficits….’ We all speak our own language and neither the Autistic or nn-Autistci is ‘better’ they are just different.

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No need to explain….

From time to time various people decide that they need to give me advice about the simplest of things (booking a table at a restaurant, using a taxi, that sort of thing).Some people also take pity on me when they believe that what I am trying to say is not being understood by a third party (for example when I am asking about different phone deals in a shop). I am sure these people think they are doing me a big favour, but they are actually doing exactly the right thing to really annoy me. There is a word for this sort of thing – ‘ablesplaining’. That is, people who don’t have disability ‘helping’ people who do have disability with things they can do themselves. There is a version of this sort of thing called ‘mansplaining’ which is where some men will patronise a woman when giving advice about things she can probably work out herself (apparently anything to do with cars is a common environment where this can happen.)

So yes, today I have my ‘politically correct’ (or what I think of as simply ‘being respectful of others like a decent human being’) hat on.

Usually the people who are trying to ‘assist’ me to book a table at a restaurant and so forth do not have hostility or discrimination in mind. They probably genuinely think they are helping. But I don’t think it is very helpful and in my case it makes me feel I am like a child or an incompetent person. I certainly don’t have skills to do some of things my non-autistic peers often take for granted. I don’t drive because I am anxious, I need support for mental health issues, my ability to work out ulterior motives of others is almost non-existent and other challenges but none of these things make me a incompetent person. With regard to not driving, I earn a good wage can take a taxi if there is no bus route to where I need to go. I bought an apartment on a very good bus route keeping in mind my non-driving. If I need photo ID I always keep my passport up to date even if I don’t plan to travel overseas so I have the requisite ID points when required. I also have my Australian Public Service lanyard which is photo ID and a Working With Vulnerable People card (also photo ID). Basically I plan for my limitations and challenges and build in strategies to manage them. In other words, I am a resourceful human being, not somebody who needs to be schooled in how to book a table for dinner!

Another thing to consider around this is that I am exceptionally good at some things non-autistic people are generally not so good at but I don’t condescend to them about it. An example is my ability at writing.  This skill is innate – I have never learned to write in any formal sense but I have written three published books and contributed to many more (I’ve lost count of the number but I think it is around eight).  When I meet a non-autistic person I don’t hover over them while they write an email to their mum, hoping to give some pearls of wisdom around a topic they are so plainly deficient at compared to my literary skills! Public speaking is another exceptional skill I have. I never really learned how to do it. This week, I spent  thirty minutes preparing a talk, delivered it the next day and had the organisation (who never really knew me before) ask me to join their Executive Board right after the talk. I don’t ‘dis-ablesplain’ to my non-autistic friends who struggle with public speaking. If they ask for assistance I give it.

There is that cringeworthy image of a person with a vision impairment crossing the street when some well-meaning citizen steers them into the opposite direction they need to go in, thinking it is ‘helpful.’ It is exactly the same for those of on the Autism spectrum or with mental health issues. If we ask for help, please do give it. If not, we probably don’t need it and it may just irritate us.

I think the key with this stuff is perception and actually, although I hate to say it, power. I think that Autistic people and people with schizophrenia (my own disability ‘labels’), very commonly experience a power differential, especially with clinicians, some family members, educators, and other support people. The dynamic can be one of support and help in its best manifestation or invalidation and dismissiveness at the other extreme. This power dynamic is not the sole responsibility of individuals. It is part of the way society seems to be structured and the shared attitudes around disability held by many. When I get up on stage and introduce myself as an Autistic woman with schizophrenia  I deliberately put it in the same slide that says I am a public servant, Masters graduate, homeowner, author and things like that.

I think they more we can change people’s expectations of incompetence and dependence for those with disability and health conditions the better. I think ablesplaining comes from an often unconscious power dynamic where the person with disability is seen in need of help and that translates to everything about them, including things they are capable of without assistance. Our skills and competence can be eclipsed on some people’s minds by that diagnostic lave;. I had a professional woman say to a on-Autistic friend I was dining with at a function ‘oh, she’s so articulate!’ after speaking with me well within earshot (I was less than a metre away from her!) I’m sure this rather insulting statement was not meant to offend but I felt like a performing seal!

Thankfully a load of my Autism and mental health advocate friends are working on this and trying to empower us and change those unspoken power dynamics and assumptions.

I always have to restrain myself in ablesplaining situations from saying, well, this:

“I have published three books with Jessica KIngsley Publishers. I have spoken for TEDx and at almost every major Autism event in Australia. I manage severe mental illness on a daily basis. I overcame involvement in drugs and crime, self-hatred and bullying to be a well-adjusted human being. I have worked in a responsible paid job in Government administration at quite a high level for over nine years. I have a number of awards for my work around advocacy. But no, I’m really struggling with whatever menial thing you are ‘helping’ me with. In fact, why don’t you do it? I’m a bit tired after all those achievements. Oh and make sure you book for a high chair and a table near the window.  Will you remember to do that? I know it’s tricky but….”

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Me, not being incompetent at the National Library talking about my second book which had just been released

 

 

 

 

 

 

 

Queer as (Autistic) folk – sexuality, gender and Autism

I returned from a trip to Perth yesterday. It is a four hour flight from Canberra so I decided to see what visual entertainment QANTAS was providing on their little screens. I discovered the ‘documentary’ page and was delighted to find a number of interesting shows. There was the Autistic Gardner which I sadly only discovered as we were landing so didn’t get to see. (Although it’s ok because I fly a lot so I’ll check it out next time).  I watched a great BBC film about Pop Art and its long reach across the globe for the past fifty years. I then saw something called ‘Between a frock and a hard place’. It was marketed as being the back story to one of my favourite movies – Priscilla: Queen of the Desert. I clicked on it and spent an hour feeling all sorts of things. The doco was basically a very engaging investigation of Queer sexuality and gender identity in Australia in recent decades. The whole way through I had to stop myself from pulling out my laptop and writing this blog…so I’m writing it now!

I think I have always been part of the Queer spectrum, from my childhood where I was terrified of having to marry a man and have kids- the future I shared with all the other women in our conservative church. As a teenager I had negative experiences of heterosexuality and decided men were not for me. I identified as Lesbian for decades and had a few female partners before discovering that there is another option which suited me far better – asexuality. I have always been very proud of my divergent sexuality and felt that anyone who has trouble with it is very confused, not to mention rude. Things like homophobia and transphobia are beyond me. I simply can’t understand why anyone else cares what people’s gender identity or sexuality is. If sexual activity is between consenting adults, the only way it would impact me is if I was in the bed with them! And as to gender identity, no transgender person has ever tried to force me to transition to a different gender or do anything else. As one would expect, an individual’s gender identity is their own and while immediate family members can go through some difficulty working out how the dynamics of relationship ect work when a partner or family member identifies as a different gender, it is no reason for hatred and prejudice and even violence but sadly these things do happen. Like many other Autists prejudice around things like sexuality baffles me. I felt terrible watching that documentary on the plane when a family talked about their gay son being murdered in a hate crime which was only investigated twenty years after it happened because at the time the police didn’t care. How is that even possible? A human being is a human being and really doesn’t deserve to be killed just because he does;t conform to the ‘norm. And if someone is killed surely they need to police to spend as much care and diligence bringing the murderer to justice as they would for anyone else.

In my travels throughout the Autism world in the past ten years or so I have met a lot of Autistic people who have a ‘different’ gender identity or sexuality, Apparently there is research which demonstrates Autistic people are more likely to identify as Queer. This would certainly be true of people I know. Of course some horrible reductionist types might have a ‘reason’ for that. I don’t actually care about a reason or cause – supporting people to be who they want to be is more important to me than trying to work out a ’cause’ (and in my experience looking for a ’cause’ to things often comes from a place or wanting to ‘fix’ it. I don’t want Queer people or Autistic people to be ‘fixed’ – we don’t need to be! We are fine just as is.

When talking about Autism and sexuality and gender identity or disability and sexuality more broadly, there are a few things which tend to crop up. Some people think Autistic adults are not sexual beings, that we are somehow like children or innocents. When Autistic people form attachments and relationships, some parents or support people try to discourage or end the relationship. As with anyone trying to come between partners, this is a very slippery slope. Autistic people have as much right to sexual pleasure and relationships as anyone else does. For me I am asexual but this doesn’t make me – or other Asexual Autists – less ‘adult’. In fact Asexuality is not confined to Autistic people – there’s plenty of non-autistic ‘Aces’ out there too. It is important to remember we are adults and as long as a sexual encounter or relationship is consensual and not exploitative then let people go for it!

There is an excellent book which has just been released looking at these sorts of things. It is called The Autism Spectrum Guide to Sexuality and Relationships. I wrote one of the forewords for it. It really is wonderful. The author, Dr Emma Goodall is an Autistic Autism professional. I don’t normally do book plugs but I really love this one. http://www.jkp.com/aus/the-autism-spectrum-guide-to-sexuality-and-relationships-33995.html

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Feel the fear and tell it to go away

I started this post while sitting in the QANTAS domestic terminal at Canberra airport. I was about to fly to Perth via Melbourne. I was relaxed and happy and ready to have an amazing time in Perth talking about Autism and meeting people I haven’t met before. This would seem a very ordinary occurrence – professional public speaker flies to other city for presentation. Not really a newsworthy headline. The funny thing is that for fifteen years of my life I would not fly. I was terrified. I saw every possibility of in flight disasters – engines falling off or stopping mid-air, terrorism, friendly armies accedientally shooting down the plane, pilot error and any number of other things. I simply didn’t travel other than on a train or bus. This all changed when I moved to Canberra in 2007 for work. My department paid for flights and removal expenses. To get to my amazing new life I had to catch a plane. I was so anxious I thought I might not be able to get on the aircraft at all. Once  I boarded the plane I was hyper-aware of every noise. I looked at the flight attendants for signs of worry. I had a gin and tonic at 10 am! I wondered whether being seated in the front of the plane was better than the back if there was an accident.

Thankfully  – and rather unsurprisingly – I got to Canberra in one piece. I realised I would have to get used to flying so I started working on my thinking. I told myself I would need to fly places because Canberra is quite a distance form other cities in Australia. I took a few flights in the first year and each time I became slightly less anxious, Nine years later and I can quite happily hop on board a plane and go wherever I ned to. I get nervous on take-off and landing but it is fairly mild in the scale of the sorts of anxiety I experience.

Fear is my constant companion. I have the Autistic’s anxiety and the terror of irrational things which comes from my mental illness. (For example I love my favourite Melbourne hotel but am always aware of ghosts because it is on the grounds of the Children’s Hospital and there must be spirits of unfortunate kids roaming about, angered that they didn’t make it to adulthood). Fear and anxiety are like nasty little twins in my life. One spurs on the other and I can really suffer as a result. In order to live my life I need to use a number of strategies around managing these aspects of my character.

My life is currently packed with things which I am anxious or frightened about. Here’s an average day: Wake up and feed Mr Kitty, then worry if he is OK because his fur looks a bit different to usual. Am I gong to come home to a deceased Mr Furryface? I give him an extra cuddle just in case and wonder if I need to call the vet. I walk the ten minute walk from Whimsy Manor to the bus stop. The old guy who walks past me every day carrying a stick and looking so angry even Autistic me who doesn’t get facial expressions can work it out. Why is he angry? Then as I go further I see a couple with two big dogs. I can’t see if they are on a leash. Will they attack me? And if they do, what if they attack my left leg with the skin grafts which is so fragile that I could lose it if I had a bad injury? I get on the bus. We nearly hit a cyclist and I am horrified. I get to work which is a pretty safe place most of the time, but I am feeling overwhelmed and sensitive What if I completely flip out and yell at my colleagues for no reason? What if I am inadvertently rude to a senior manager? Why is my supervisor meeting with my Director with the office door closed? Oh my gosh! Have I done some terrible transgression I am unaware of??  How long can I live on my savings if I am fired? I go home and am happy to find Mr Kitty alive and well and waiting for his dinner. I give him a bigger cuddle. I turn on the TV to the Antiques Roadshow and then Spicks and Specks – dramas and the news are always terrifying. I get my news form internet news sites because I can pick which articles I look at but even that  can be difficult sometimes.  I do a bunch of writing and advocacy things and then go to bed, getting right under the covers even on a hot day as for some reason I think the blankets ward of evil spirits.

The thing about my life is that I am constantly in that state but I have learned to operate within it and build strategies to manage it so I can do what I want to do. I sometimes manage to downgrade the level of fear or anxiety if I cannot get rid of it entirely. I made a decision a long time ago that I would not let anxiety and fear stop me from doing what I need to do. I accept that I go through a lot of suffering because of this but I have also achieved milestones which make me – and my family and friends too I think – quite proud. I know there are worth things than suffering and in my mind the trade off between doing what I want and experiencing a certain amount of terror and anxiety is an easy choice.

I know that most Autistic people have struggles with anxiety too. If I were to offer any advice it would be to accept that life is going to be a challenge – pretty much everyone’s life is, Autistic and on-Autistic alike. Anxiety and fear may well be your constant companions too, so try to learn to manage them with strategies where you can and ask for help when you need to. It can help to a actually visualise anxiety or other challenges as a character and tell them to go away. Things like mindfulness, distraction by doing something you enjoy, and  strategies you can work on with a therapist or psychologist are really helpful for many people too. Medication is an option some people pursue although I would suggest caution and make sure you trust the doctor who prescribes it and you are the person making the decision about taking or not taking medication. It is possible to live a good life with anxiety issues but it can take a while to develop strategies that work for you. Remember you aren’t alone. Talking to others on the spectrum and/or those with anxiety challenges can help and make you feel less isolated.

I refuse to let anxiety dictate what I do in life. If it is worthwhile I will try and do it-3

 

 

Go girls! – Making changes for Autistic women and girls

The other day a fellow Autist from the USA said to me how pleased he was to come across an Autistic woman who speaks about neurodiversity. I had never actually considered myself through that lens. I am just Jeanette and I write things which are important to me. But of course I am an Autistic woman – not a choice, just the particular circumstance and gift I was given.

I do know about being a woman though and an Autistic one. I have faced many of the challenges, trials and horrors women  can experience and those which sadly Autistic women so often experience – abuse, bullying, victimisation, being invalidated by those health professionals  who did not understand what an Autistic woman looks like clinically. I spent many years isolated and friendless. I have been diagnosed wit health conditions I don’t have and told I was ‘too cool to be Autistic.’ I spent at least five years being preyed upon by apparently every creep and abuser in Australia. I’ve lost my identity to fit in with others, puzzled about my sense of self. I have been robbed, ripped off and taken advantage of. But it’s not all bad. I also have found some good things in this world as an Autistic woman. I know myself now through a strong identity of neurodiversity and Autistic pride. I love myself and will not stand for bullying or intolerance of myself or others. I know other Autistic women, many of whom are my friends – more than I could ever have imagined existed. I have gradually learned I have the characteristics common to many Autistic women  and embraced them – empathy, creativity, deep thinking and a great passion to make the world better.

Today I had the immense privilege to meet a whole room full of young girls on the Autism spectrum and their mums and dads. I am an ambassador for an organisation called Yellow Ladybugs which is a social meeting group for young girls on the autism spectrum. I live in Canberra and the Yellow Ladybugs group is based in Melbourne so I had never been to one of their events. Today I was in Melbourne and attended three groups of girls doing painting at the National Gallery of Victoria. The organiser – Katie Sparkles (that’s not her actual name – she told and  forgot how to spell it – sorry Katie 🙂 – thanked me each time for my involvement but it was an absolute joy for many reasons. I spoke more to mums than their daughters. I’m not all that good with young kids and am more confident talking to teenagers. I did have some conversations with the girls and put my mentor ‘hat’ on, building their confidence around hotter drawings. (Yes, Autistic people can be perfectionists even when we are very little! I told a couple of girls that there is no right and wrong in art which  think helped a little). One little girl decided I was her new friend and put her little hand in mine wherever she wanted to go. It was lovely (and I was very happy that I have my working with children card!) It was lovely to see the girls enjoying their painting and talking to one another and the adults. I felt immensely protective of these young girls. As always with Autistic kids and young people, I see my younger self in them and want to protect them from the horror I experienced as a kid and young person.

It was great talking to some of the mums. I had a few mums come straight up to me and say ‘You’re Jeanette!’ and then we would get talking about her life and family. One thing I said to many of the parents was that there was nothing like Yellow Ladybugs when we were little and how wonderful it is that such groups exist now. Of course parents of Autistic kids often discover through their children’s diagnosis and discussions around it that they are on the spectrum themselves. So when I reflected on the lack of services for Autistic people in the past I wasn’t just reflecting on my own exeprience but on that of the person I was speaking to. That lack of services was a terrible thing. Basically us little Autistic girls in the 1970s and 1980s were different – perceptibly do and obvious to bullies and predators – but not different enough to attract any support and if we did get noticed and sent to a therapist then there was no diagnostic spot to place us. This either meant that our parents were told we were ‘acting out’ or that we got given a very unhelpful misdiagnosis. I have an Autistic friend who spent years in institutions for schizophrenia simply because they answered pychiatrist’s questions about ‘hearing voices’ and ‘seeing things’ literally. This person struggled until l their 40s when they received an Autism diagnosis which changed their life.

So I suppose accurate diagnosis is very important. The fact that there are increasing numbers of services and support groups for Autistic young people is fantastic and makes me very happy.

I am a bit ashamed to admit this but for years whenever I spoke at an event where parents complained about the shortcomings in Autism services for their kids I would respond with ‘well it’s better than the I was a kid!’ Th implication was that they should stop complaining because my education and childhood journey was much worse then anything now. Of course that was just me dealing with my own issues. I am happy to say that I am absolutely delighted that young kids on the spectrum – and young girls in particular – have access to social support and other supports. I looked at all those young girls today and just felt like giving them a big hug and saying ‘I so hope you avoid all the evil I went through. Go well and be amazing!’ When I think about what I have achieved with a horrible start in life, I can only imagine the opportunities those young girls today may have. And I understand we have not ‘got there’ yet around building a great word for our Autistic young people but today I felt we are heading in a positive direction .

So yes, I am an Autistic woman and I speak from something of a neurodiversity and Autistic Pride perspective. I long for the day that I don’t need to anymore.

Here is the link to Yellow ladybugs if you want to find out more: Yellow Ladybugs

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I got the Autism ‘Awareness’ Day blues….

A few years ago, for whatever reason, the UN decided that what the world – and presumably Autistic inhabitants of said world – needed was a day of significance for Autism.  They decided that it would the day after April Fools Day and would focus  on raising awareness around Autism.

After a while, some (mostly Autistic) people realised that celebrating ‘awareness’ of Autism was a bit deficient. I am aware of all sorts of things which doesn’t necessarily lead to me supporting or empathising with them. In fact there is a group which is incredibly ‘aware’ of Autism and that is bullies who pick on Autistic people. I reckon they are probably aware of a whole load of things and use that awareness to torment the person. So awareness by itself is kinda pointless and can be counterproductive. Another thing which started to happen around Autism Day was that a particular large Autism body which I shan’t name but which has the initials AS decided to get involved. Some people abbreviate it to A$ given the money-making juggernaut this organisation is. This organisation has a huge reach and some quite unhelpful attitudes around Autism, namely that it sees it seem to think Autism is a ‘tragedy’ and that Autistic people would benefit from a ‘cure.’ A whole load of the thinking is around deficits and negative messaging. I recognise that organisations can change but this one has yet to convince me they are trustworthy. Most Autistic adults find talk of cures and tragedies and things highly offensive, for fairly obvious reasons. I’m quite certain I am not a tragedy and if anyone said they wanted to ‘cure’ my Autism I would decline. Autism is a integral part of what makes me me and I like being me.

However, the organisation which promulgates all of this has a large amount of influence in the discourse  around Autism in some parts of the world. They decided on a colour for Autism Day – blue. And blue became synonymous for ‘Autism awareness’ around the world.

Thankfully there are a bunch of Autistic advocates and activists out there challenging this rather hegemonic blueing in April.  As someone in the Autistic community with a little bit of recognition I have been asked to light it up yellow, blue and yellow, taupe with a picture of cats (from the wonderful ‘Tone it Down Taupe’ group which seeks support for those with the terrible affliction of ‘neurotypical syndrome’  – it’s a joke with a strong kernel of seriousness behind it). I have also been asked to go rainbow, ‘red instead’ and a few others. I ended up going with the cat decal form the Tone it Down Taupe page as I like cats and I like their page.

The difficult thing is that many people support light it up blue completely innocently. We can’t assume that everyone with a connection to Autism is in on the discussions that myself and my advocate colleagues are having. So lots of people associate blue with Autism Day and feel they are being really helpful by promoting the blue campaign. This is one of the reasons that April, and 2 April particularly, are exhausting for me. Today I have explained why I don’t light it up blue no less than five times. I don’t mind explaining but it can be a challenge. I don’t assume that people who support the blue campaign are ableist themselves or think my very existence is tragic. Mostly people are simply ignorant of the history behind that aspect of Autism Day.I never blame people for being ignorant of something. Ignorance offers an oporitntiy for education and starting a conversation around advocacy and empowerment for those of us on the Autism spectrum.

April is always a challenging month. Some of the issues are:

  • I get asked to events only to turn up and find a sea of blue balloons and puzzle pieces and so forth. This makes me feel uncomfortable and I don’t know how to address my discomfort and whether to distance myself from the associations with ableism from the stage or talk to the organisers privately beforehand or after my talk. Plus there will almost certainly be a photo of me looking very uncomfortable in a sea of blue next to a smiling and oblivious CEO which will be on social media until the end of civilisation!
  • The workload for an Autistic speaker in and around April is unbelievable. This year between 24 March and 6 May I have eight presentations booked – four of which are interstate and two of which are keynotes. That is a lot of traveling and a lot of meeting roomfuls of people who want to talk to me. This is not to mention all the other things I am asked to do – guest blogs, magazine articles, providing signed books for stuff…I mean I absolutely love doing all these things but when it is all concentrated in a six week period it’s a bit tricky!
  •  I am friends with a number of advocates who have a number of different views and approaches. I want to support all their things but I don’t think my Facebook profile pic will be able to go yellow, red, yellow and blue, rainbow and catty all at once! I wish it could, I really do. I have only recently learned that I am allowed to disagree with people who are my friends so I come from a firm background of people pleaser (and most of my ancestors before me have only served to reinforce this). I worry that people will think I am critical of them if I don’t do one thing or another.

So April is a very fraught and busy month for me. Quite ironic that the day the UN set aside to promote understanding around Autism is very stressful and unpopular not just with me but with many of my advocate colleagues and other in our community as well.

I’l leave with an amusing but telling anecdote. Today I attended a barbecue for Autism Day which was put on by the organisation I am a board member for, Autism Asperger ACT. It was a fun afternoon and I talked with all sorts of people about their lives. At one point I had two of our suff members asking about why I don’t support that A$ organisation and all its blue trappings. (And they totally ‘got it.’) We had a large sponge cake and one of the staff had brought along what they thought was a little tube of icing to decorate the cake. The ‘icing’ happened to be blue. As a board member, author and fine art graduate, it was decided that I should decorate the cake with an approximation of our corporate logo (which is a very pretty ‘A’ with coloured lines coming off it as if the A is shining). The ‘icing’ was very runny and quite a dark colour. It was hard to do but I managed to get an A with sparkly bits. I used the back of a spoon to tidy up the lines and without thinking licked the back of the spoon….only to find I had ingested a large and foul-tasting amount of food dye, not icing! My lips and teeth and tongue were a vivid shade of blue. ‘Of all the colours!’ I thought. I had to apologise for my blue face when I gave my presentation. It was incredibly funny and I reflected on the irony that despite my best efforts, the stupid blue still got me!

So have a good rest of your Autism [Empowerment, Respect, Understanding, Acceptance, Love, Friendship, Support] and ‘Awareness’ Day.

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