I’m not sure if this is the case for anyone else but the older I get, the worse my sensory sensitivities are. I used to be able to eat almost anything and it all tasted good and had a texture which didn’t revolt me. Now I am anxious about going to restaurants in case they have nothing I can happily eat.  I eat exactly the same dish every night unless I get take away, in which case I usually order the same dish! (Except for pizza. I think it’s pretty hard to make pizza horrible). To the horror of my vegetarian, vegan and health conscious friends, the things I am able to eat mostly come from the meat group or the sugar group! I am only 42 so worry that if I get old I might only have one thing I can eat!

I also have an increasingly heightened sense of smell. I have always had an acute sense of smell but it is getting ridiculous. The MC at the event I spoke at yesterday was running around all day and was evidently concerned he might be a bit stinky. I watched in horror as he liberally squirted himself with some foul deodorant thing. It permeated the room for hours! And public toilets are possibly my least favourite place at the moment. I work in a big office building and going to the bathroom can be a disturbing and overwhelming experience. It’s not that my colleagues are gross. They aren’t at all – it’s that my smell is incredibly sensitive so any unpleasant smell is magnified beyond normal levels.

And the one I have not experienced much before but which I find I get quote a lot these days is a variety of auditory sensitivities. The sounds of construction work are the worst. That noise results in an almost murderous rage. I have to be somewhere else if construction is going on. I also hate water sounds indoors and any unidentified mechanical humming sounds. Sometimes I can feel a building trembling in time to some machinery sound. It’s horrible.

I’m pretty certain my Autistic readers will all be reading this and thinking ‘yup. Sensory stiff is nasty.’ Although their sensitivities may be different to mine. Most Autistic people seem to have heightened senses. For some these can be pleasant but for many they are negative and can be highly upsetting.

I think one of the worst thing about sensory issues is the lack of understanding that the wider world has about them. For me, some sensory experiences are completely overwhelming and either cause furious anger or severe anxiety. When they are happening I find it almost impossible to concentrate on the things going on at the same time.If I am at work in a meeting and there are construction sounds nearby I will not be very attentive to the discussion in the meeting. It would probably look like I was not paying attention. I don’t think anyone else would be thinking about the background noise. They may not even be aware of it but for me is  is boring into my brain and making me want yell and swear and run away but none of those things are appropriate in the workplace. Of course I have a very supportive and lovely employer so if sensory issues were impacting my performance at work I would feel very happy to tell my manager who would consult with me about the issue and we would work together to resolve it, But not everyone has that kind of workplace nd some people are ‘suffering in silence,’ so to speak.

Imagine if you are a person who has not disclosed their Autism with their manager and a significant sensory issue comes up. You have to do something  about it so you try to explain to your manager what the issue is. They have no frame of reference for what you are saying. It is a situation which s completely outside of their experience. That usually means that the person – no matter how kind or supportive they are – has very little way to understand your experience and empathise with you. They might ask something like ‘You can hear the fluorescent lights buzzing? Have you been smoking weed or something?’  That lack of understanding tends to lead to a lack of taking your concern seriously.

Another issue is explaining your need for the station to change  to people who are themselves the cause of sensory issues – the neighbour who plays music with booming bass which drives you to distraction, for example. In a neighbour situation, it can be horrific. People have sold their houses over this sort of issue. In fact raising noise or other issues with neighbours can also result in conflict and blame which can compound one issue with another,

Remember that your experience is correct. Just because other people haven’t experienced it does not invalidate it. Articulating what the issue is and thinking of some strategies to address it can be useful. For me, I often play music or the TV when I am at home and there are noises which upset me. If it is overwhelming and this is feasible, I will leave the house. The toilet situation at work is beyond my powers to fix – you can’t really ask people to stop going to the toilet! I tell myself I have to go there and that I will only be in the cubicle for a little while, which doesn’t address the experience but which helps me to cope better. With he food sensitivities, I look at the menu of a restaurant I am going to online the day before and research any ingredients or processes I haven’t come across.Then I know what to order and am much less anxious But this stuff is really difficult. I would like to to see more information for non-autistic people about sensory issues and what they mean to people experiencing them.

Ten tears ago i was filmed for a documentary about Autistic adults shown on the ABC, along with three other Autistic adults. At the time the film was made I was transitioning from being very poor and aspirational to being a middle class, well-paid public servant, There is a lot of footage of me in and around my former public housing flat (which was as grim as I’m sure you are imagining it right now). In one scene I was talking about my difficulties feeling love with a partner, I said ‘I think I would only go out with an Autistic partner because at least we would understand one another.’

That statement was actually a very difficult thing for me to say at the time. I had never felt much love for human beings, at least not in an emotive way. In the few sexual relationships I had I usually just found my partners confusing and slightly irritating. I certainly didn’t feel anything like love, I believed I must be a broken human being to be devoid of this characteristic which has inspired poets  and artists for generations. I failed the autism self-advocate test because I actually did believe I was deficient and broken as an Autistic person. Apparently I couldn’t feel love. I thought about what a horrible person was not to feel love I really wanted to be able to but even when I tried to understand what love felt like, I couldn’t get it. As far as I saw it, my Autism stripped love from me and meant I was incapable of the feeling. (It was ten years ago. My attitudes around those sorts of things are completely different now). I felt less than human, like the android character Mr Data in Star Trek the Next Generation – a machine, and functional as a human in all aspects except that he lacked emotions.

Thankfully I have the wisdom of ten years experience to challenge some of my own unhelpful thinking around the issue of Autism and love. I discovered I am asexual and aromantic a while back. This means that having a partner for me was more based on my wish to do what other people did by having a partner than in any desire for love or closeness which I don’t get from sex or romantic intimacy. The reason I didn’t feel love for my few partners was simple – I didn’t love them. You can’t really manufacture love.

Another thing I discovered was that I have immense love when my first niece was born. I was overwhelmed by it. It was like nothing I had experienced, And then a couple of years later my second niece came into the world and then my nephew. I felt love for those three beautiful little people. I also felt love for my mum – lots of it – and my dad. I love some of my friends too. And I’m sure Mr Kitty occupies an entire part of the bit of my brain which feels love and closeness. There is nothing like the bond between a Jeanette and her cat after all.

My love for people is not some kind of overwhelming thing which I feel all the time. There really aren’t any metaphorical fireworks. It is a sensible emotion, sitting somewhere between joy and care. It is reliable and sensible. I suspect that most people’s love might be like that. What we see in movies is probably an exaggeration but a lot of us see that as the benchmark. In fact I think for Autistic people seeing those sweeping emotional portrayals of love in films and books can be really confusing, Like me, they worry that they are cold emotionally because they don’t feel the need to lay down their life for someone or write ‘I love you!’ in the sky!

Another thing I have realised offer the years is that I am filled with love. I know this because I care so very much about all the people who come into my life through my autism advocacy. My love for the community is largely practical. My workload looks something like this:

Paid full-time job

Writing about Autism – articles, books, blogs

Messaging people – friends and those who have some questions they want me to respond to or want my support

Drafting,practicing and delivering talks

Mentoring people

Women’s group and other facilitation and support.

Making up a new meme for social media every day.

An average week’s activity with an output at the end is between 75-85 hours (I recorded it over a few weeks!). I am intentionally very available. I try to respond to every message I get, whether I know the sender or not.

When I pull that apart, all of those thousands of hours i have put in have come from love. There can be no other reason to it. My motivation is mostly Autistic young people. I see them and I want to assist them on their own journey as much as I can. I had no support around Autism when I was young and it was really horrible. I would hate for anyone else to have to go through what I did.

So yes, I don’t have a partner and a bunch of my own kids to love but I have lots of love in my life.

I think the stereotypes around Autistic people lacking love come form a place where the Autistic experience of love is not understood and thus dismissed. Like all stereotypes it has come form place of misunderstanding and unwillingness to listen to the Autistic view.

Here is a poem about these sorts of things that I wrote last year.

 They don’t grieve, do they?

I was told by the doctor that I don’t grieve.

‘Autistics don’t grieve.’ she pronounced

‘You don’t feel love

or empathy.’

So why then did I feel like my world was ruined and gone

That part of my soul was missing when cancer took Val to a place I couldn’t follow

If it wasn’t grief?

What was the rush of joy which filled me full of closeness and wonder when I held my brand new niece in my arms

if it wasn’t love?

Why then have I spent years doing endless unpaid work to assist others

if I am devoid of empathy?

Maybe the doctor showed me that she lived in a world devoid of love and empathy.

Maybe I should help show her my love

my empathy

My grief

To make her whole?

I have lots of love for this kitty!!

 

When I was younger I read a lot of science fiction from the 1960s and 1970s. I remember reading some stories which looked at the idea of different decisions creating alternate dimensions. If the central character in the story made one choice it would result in, for example, destruction of the world and if they made a different choice at that moment of decision, then the world was spared. I loved the concept of different dimensions shaped by our choices. Reality is in fact similar to that model although I don’t this there are infinite universes crrlatign to the thousands of different decisions made by the countless multitudes of humans who have walked the earth. Anyway I shall stop daydreaming and get to the point.

Many years ago, I lived a shadow life far removed from the good things I now know. I made many poor choices but this post is not really about my for choices but the choices made by those in  caring roles working to assist me (or manage me, depending on which sort of institution I was in at the time).

I spent around three years on and off in prison and forensic psychiatric wards. I have a kind of schizophrenia which used to be largely resistant the the treatments I was given. These treatments basically consisted of very large doses of Largactyl, one of the first anti-psychotic drugs which came onto the market in the 1940s or 50’s. As I was a prisoner and ’a management problem’ I didn’t have a lot of say in the treatments I was given. Largactyl is sometimes called a chemical straightjacket as it strips you or energy and will, at least it did in the doses I was given. I existed in a fog, my body felt heavy and I had little interest in anything. In the three years I was in orison I saw the psychiatrist who prescribed this drug once. He was a large bearded man and he didn’t seem very engaged in his work.

When I was released from prison for the final time in 2000 I was sent to a therapy program for people  who (actually) had the condition I had been misdiagnosed with, borderline personality disorder. This program was a very new thing indeed, and considered innovative. I was its seventh ‘customer’. The staff were very different to workers I had been cared for by, well ever. They listened and respected the women in the service, included recently released ex-prisoner me. Within a few weeks, the psychiatrist at this service – who all the clients saw at least once a week – asked me if I was aware that my tongue flicked out of my mouth, rather like a lizard. I was worried by this and said I had not been aware of this. The psychiatrist thought I might have a movement disorder caused by the medication I had been given for the past four or so years,

It just so happened that the preeminent movement disorder specialists in Melbourne worked in a building adjoining the one where our program was housed,. I was given an appointment and met the two doctors who specialised in things like my lizard tongue thing. I was acutely embarrassed by this issue. It made me more reserved and I didn’t want to meet new people. The specialist doctors diagnosed me with a condition called Tardive Diskqynesia  which is frequently caused by some of the older anti-psychotic drugs. These doctors consulted with the program psychiatrist and she changed my medication to a more recent drug. After a while my tongue stopped flicking about. I was happy and figured this issue must be a fairly simple thing to treat.

Years later I mentioned my movement disorder and how it had been effectively treated through a change in medication to a psychiatrist  who was treating me at the time. He was visibly amazed and told me that disorder is almost always permanent. This got me reflecting about the decisions people make on behalf of others.

I can’t vouch for everything my twenty-something  self would have done, but I’m fairly certain that had my movement disorder not been treated I would have felt acute embarrassment. This would have limited my path in life and probably have made all the things I do now impossible. I think it would have kept me away from social contact. For someone as self-conscious and insecure as I was then this apparently little thing would likely have had a huge impact only  experience of life.

A few things came together which enabled this and the main catalyst as I see it was having medication staff who cared about my welfare and saw me as a valuable person with potential. Sadly prisons don’t often do that very well. Had I not been fortunate enough to find my way into a service for a condition I was only diagnosed with due ti a huge lack of understanding of female Autism. Had I not had consistent care from a the same psychiatrist who saw me more then once in three years, had those movement disorder specialists not been just down the road….who knows.

Those things happened and I was not limited by being self conscious and embarrassed to exist. One thing to know is that I was hight socially devalued. I had no job, no education, no power or status of any kind, I was a recent ex-prisoner with a mental illness who was in the autism spectrum at a time where neurodiversity barely existed, I was homeless and poor and had low self esteem. One characteristic of low social value is that a person is often largely reliant on the mercy of strangers. In my case it was mostly the mercy of mental health workers which was relevant. I was fortunate that the strangers on whose mercy I was reliant were decent kind people.

When we meet people who are devalued, maybe we should all be thinking of little recent ex-prisoner Jeanette. Jeanette had her lovely family in her corner which was great and facilitated social recovery but she didn’t have many others. From my perspective, the amazing recovery from the movement disorder was in and of itself a protective factor. So those strangers caring for me enabled me to live my life now and all it includes.

• Gain a Masters degree
• Work full-time
• Write books about Autism which help others
• Mentor and support people
• Look after a beautiful black cat
• Own my own home
• Be a role model for others on the Autism spectrum and those with mental illness
• Be happy from time to time
• Pay lots of tax to help society
• Express my love and gratitude to family and friends for being lovely
• Be a good friend
• Give presentations about a number of good things to many thousands of people over the years
• Grow older
• Help challenge stereotypes about all manner of groups of people who are disadvantaged.

If you care for people who are socially devalued, or even if you just come across people, I reckon maybe reflect on the fact that my recent life was made possible by a psychiatrist noticing something in her client and being concerned.  The way workers and support people care for people and the choices they take is often critical in which path they take and which ‘dimension’ they find themselves.

 

Anyone who knows Terry Pratchett’s alternate multiverse will see that the subtitle of this post is a little tongue in cheek (and for those who haven’t had the pleasure of meeting Mr Pratchett’s wonderful characters in his many books, I will explain that ‘what I did on my holidays’ is the title of a book by the Discworld’s first tourist, TwoFlower, which almost causes a revolution due to its depiction of a world vastly different to the of TwoFlower’s home country, the Agatean Empire.) OK, nerd points racked up so here i go…

Late last year I was asked to deliver a seminar presentation along wth three other speakers at Griffith University. I happily agreed to do this. Griffith University is in that wonderful subtropical city with many bridges and curly streets, Brisbane. I realised that someone I had recently reconnected with was researching at Bond University which is on the Gold Coast. My sense of geography is appalling at the best of times and I assumed – given how close the two places are to one another on the map – that the Gold Coast was a ten minute drive form Brisbane (I got lost in my own house once as a kid so this is on the minor end of the ‘Jeanette’s crimes against geography’ scale). I should give some background about the friend at Bond University. The friend is professor Vicki Bitsika, head of the Autism Centre at Bond Uni. I met Vicki when I was twenty. She came to visit me and I think we were both quite wary of one another. I was a prisoner and Vicki was a psychologist who was  one of a handful of clinicians at the time who knew about this thing I had never heard of before called Asperger syndrome. Vicki got me to answer lots of questions and decipher cartoons with no words which I can still feel my sense of deep frustration I puzzled over this seemingly impossible task. Vicki gave me a diagnosis. I regret to say I gave her an evil stare and a lot of attitude. My parents paid for me to see Vicki. I think I may have gone to three appointments. I hated that Autism label as I thought it condemned me to living out all the insults and taunts that bullies had applied to me all through high school. I wasn’t about to accept that!

Of course anyone who reads this blog regularly will know that I am now very happy with my ‘A’ word and identify very strongly as a proud Autistic woman and encourage others to embrace their unique Autistic ‘them-ness.’ My former psychologist Vicki and I have been working independently as Autism professionals for some years but we only connected recently, I suppose psychologists probably aren’t supposed to go and seek out their former clients. There is probably a rule about that somewhere. I saw Vicki’s name in a  couple of places and it piqued my interest. Then last year I saw that I was presenting at the same conference as Vicki. I got in touch and she was really happy to catch up with me. We have been in touch ever since. Vicki is one of the most significant people in my life. She is also a great and very generous person.

When I got the details of my Griffith Uni talk sorted out, I suggested to Vicki that maybe I could visit her for lunch on the day before the seminar at Griffith, This turned into an gala dinner with all the senior academics, sponsors of the university and the Vice Chancellor. “Cool!’ I thought (I am a bit of a fiend at networking and was looking forward to introducing myself to influential  people and making sure they all got at least one  Jeanette business card). Given this generous offer of dinner and potential networking, I offered to give a talk as well. The talk went well and the dinner was amazing. It was ironic to be a guest at a schmooze-fest dinner at Bond university as Bond is a privately-run university, reliant on students’ fees, sponsorship and  and donations. My teenage socialist self spent most of the past month yelling rude words at me at this betrayal of my 16 year old need to turn the world upside down. Thankfully my current self favours ‘gentle power’ and using influence and education to change things. Not a lot of revolution happens atWhimsy Manor but a lot of support and friendship and mentoring and gently calling people on their unhelpful beliefs and showing them a better way – that is my preferred method of making change.

The morning after my Bond Uni visit, I had breakfast with Vicki at a little French patisserie. I then had a chauffeur driven car collect me and take me the hour and a half to Brisbane from the Gold Coast. I listened to music on my phone and enjoyed seeing the driver doing something he plainly enjoyed. I was in good time for my presentation and enjoyed listening to the end of the first speaker’s talk.

There was another Autism advocate who is also a psychologist and PhD candidate presenting at the Griffith talk. I felt so supported and was pleased that we could both respond to questions from our respective Autistic perspectives. At one point, someone asked me a question about a topic my colleague was better equipped to answer. I started to answer it and then realised that a much greater expert then me in that area was sitting right next to me.  I happily threw the question to her, appreciating her presence. I reflected that things are changing. When I started out doing public speaking around Autism in 2005, an Autistic keynote speaker was pretty much unheard of. The focus was always on deficits. Yet yesterday a room full of clinicians and parents of Autistic kids carefully took notes when my colleague, Jacky, and I spoke about neurodiversity and why we are against the sorts of therapies which aim to make Autistic kids seem ‘less Autistic’.

I had a great day presenting and meeting new people and selling books and things. I got a lift to the airport with two of the other speakers who were on an earlier flight. I bought some impressively unhealthy dinner at the airport and then found the gate I needed to be at. I got some odd looks from the other people as I was wearing my rainbow neurodiversity infinity symbol T-shirt with the symbol made up of pictures of cats and my wonderfully lurid blue and pink tie-die shoes. Apparently forty-something women aren’t supposed to dress like that. I happily reflected that I am me, just as I am and will never let some narrow ‘rules’ of fashion and age dictate how I present myself to the world. I smiled as I realised I was someone that  many people would discount on first look – overweight, middle-aged and female, dressed in wacky and colourful  clothes ad shoes and doing unexpected things with my body language and eye contact. All those have never seen me on stage, they have never seen my awards around leadership and volunteering, They have never read my books, blogs or articles or received strategies and tips form me but I sit confident in the knowledge of my work and my community.

As is so often the case, a trip to give presentations on Autism results in me feeling bigger and better than before, carrying within me the knowledge that I and my advocate and ally colleagues are doing our bit to change the world. I love being involved in the ongoing revolution and rethinking around Autism. We still have quite a long way to go but we are further along the path to a better world.

 

 

I posted a statement about mental health week today. One of my social media friends commented that it would be  great if my experience of being an employed home-owning person with schizophrenia was the norm and not the exception. I wholeheartedly agreed This exchange got me thinking about a  few of my career considerations and things which drive my advocacy work. Here goes…

‘The only Aspie in the village’ – recognition and other kinda unhelpful things

I attended a conference a while back and got talking to someone before the first session. We were joined by another someone shortly afterwards. I couldn’t quite read what was going on but I could tell I had done something wrong. I had never met this person before but they acted like we knew each other and I had wronged them in some horrible way. I was utterly puzzled until a friend said ‘oh, they just have a fame thing’. My friend was basically explaining that the unhappy person didn’t like me because I have a bit of a profile. I was baffled. Shortly afterwards another friend described another advocate as wanting to be ‘the only Aspie in the village’ and feeling threatened by the success of others.

I wish I could stay virtuously ‘oh but I never think like that…’ Sadly I am far from saintlike on this issue. I spent many years being very competitive and feeling intimidated by other speakers and author and their impressive profiles. It actually took me getting some recognition of my own to make me realise how silly it is to envy others. These days I think the more Autism advocates from different backgrounds and experiences there are, the better. I can only really speak from my own experience as one individual. If different people share their different experience and wisdom it becomes a more inclusive message. I love having colleagues and friends I can refer speaking or writing gigs to. I also feel that as someone who has been around for a while, I can share things I have learned with others and support their advocacy work. Rivalry is often counterproductive. In the Autism world, cooperation is a better form of leadership than competition.

Why I don’t really want awards

I was at an event recently and someone suggested I would have been a more worthy recipient of an award than the person who got it. It thought this was a bit of an odd sentiment. The purpose of awards as I see it is to encourage people to continue doing the good things they are doing. I have been writing and advocating around Autism for eleven years and have a fair number of certificates and spiky glass things with my name and some achievement engraved on them. Awards are lovely but they don’t motivate me. I don’t need them. I am always happiest when someone closer to the start of their career than me gets and award because I think it will encourage them to keep going. I will probably do advocacy forever, regardless of what awards I might gather in the process.

My main concern about feeling rivalry for opportunities and awards is that if I am going to want to win something and get all competitive, I am basically wishing another Autistic person disappointment. I don’t really want to do that. One thing I like to do is to nominate others for awards and then when they win, I am really happy.

Why I speak for organisations who don’t always pass my test for inclusiveness

I speak at a lot of conferences and events for all sorts of different organisations. I have some pretty strict views on appropriate behaviour for Autism organisations but I often find myself speaking for organisations which don’t quite pass muster. This is not because I am a ravenous public speaking beast who needs to get on stage every week. There are actually a few reasons for this,

Firstly, I could gather the people who agree with everything I do around Autism in a medium sized room. If I spoke to the 80 or so people who fit this description, we would all be really happy agreeing with one another and nobody else would get the benefit of the message. Secondly I see my role in the Autism community as one of education and leading by example. I do not start from the premise that there is no hope for an organisation which professes ideas of practices I have an issue with. As a Autistic speaker I have a great opportunity to educate Autism organisations. And finally, I am not really speaking for the organisation anyway, unless I am giving their staff an an in service. The people sitting in the audience are the ones I am most interested in. Often they are not part of the Autism advocacy community. They are there to gain information for themselves or their partner or their kids or their professional role. I would rather they got the benefit of my message. If I was taking the moral high ground and only speaking for the roughly three organisations which align exactly with my views then these people looking for information would miss out on hearing what I have to say. This would be a shame because I have an inclusive and positive message built in my own lived experience of Autism. I am practical and I’m not going to wait for the perfect Autism organisation to come along before I speak to those audiences that can gain so much from what other  self-advocates and I have to offer.

Why I want to be redundant

I absolutely love my life at the moment. My extrovert bits are delighted at getting to hop up on stage as often as I do these days. My altruistic and activist bits are delighted at getting to help others and make a difference and my intellect is loving the challenge of my work but what I really want is not to do it any more. Of course on a personal level I would be sad to leave this life behind but as an advocate I would be so happy if all the things that my colleagues and I do is no longer needed. So please, let me and my work become unnecessary. Let us do ourselves out of our jobs as advocates and rejoice in the world future generations of Autistics have a life where the horrors that I and my contemporaries experienced and continue to experience is condemned to – as my socialist comrades in the 1990s used to say – the dustbin of history.

The other day I wrote a post on Facebook which I knew would cause a lot of conversation and probably debate amongst my Facebook friends. This was something I have been doing recently as I like to pose questions for people to consider and discuss. The problem is that I am terrified of the response. I am an activist of sorts, but the rarest sort of activist because I struggle with conflict, disagreement and argument. There are a number of reasons for this

My parents – who are amazing and wonderful and I owe my life to – had one difficulty when I was a kid in that they never argued. I can only remember seeing them argue once when I was about 14. I was horrified and thought the world would probably end if they didn’t make up right away. It was threatening to see them argue as I couldn’t recall ever having seen it before. My parents avoided conflict like the plague so this became my default setting too.

As I grew to adulthood, assertiveness and boundaries were things other people did. I spent four years as a teenage socialist standing on the street corder selling the socialist newspaper terrified someone would disagree with me! Of course a lot of people did disagree with me. The whole thing was very stressful. When I was twenty – for reasons which you would probably be best off reading in my autobiography is you want detail – I found myself in prison. My life – like all prisoners’ lives – was very cheap and in constant danger. Even minor disagreements between prisoners often escalated to physical violence. I learned very quickly that disagreeing with my criminal ‘housemates’ was not a good idea so I spent that whole period of my life appeasing everyone and being ‘nice.’ I did this by giving others cigarettes and other things bought at the canteen with the money my parents put in my account every month. It was a time where I completely lost my sense of self. I didn’t know who I was. I was the ‘nice girl’ who everyone liked but I had no idea of what my wants and needs were because I was so busy keeping over 100 women happy and not saying the ‘wrong’ thing.

All those things were a very long time ago but they are etched in my brain and inform my character today. I struggled with assertiveness and setting limits until quite recently. The only reason I can now ‘do’ assertiveness is my absurdly busy schedule for my advocacy work. As of a year or so ago, I am asked to speak at, write or have some involvement in something every day. I work full-time and there is no way I can agree to do everything I am asked to do so I learned to decline things politely. My ability to set limits with friends and acquaintances has also increased. I have so many people who want my support that I need to keep some distance. Social media is wonderful but blurs the line between friend, supporter and acquaintance. In the past I would stretch myself very thinly emotionally and supported everyone who asked but now I know I can’t do that or I will almost certainly become really unwell myself. So I (hopefully) kindly explain this and suggest some services people can access for assistance (that aren’t me!)

I suppose the triad of managing relationships in this way is being able to assert one’s needs, being able to set limits and boundaries and being able to disagree with others. So I have the first two of these pillars working well for me at the moment. I’m working on the final – conflict and disagreement – as best as I can. Posting potentially controversial things on social media is still terrifying. I check my friends list whenever I post something people disagree with to see if my ist of thousands of friends has gone down to tens (this hasn’t happened yet). It is good though because it cements my relationship with a lot of people, even when we disagree. Disagreement does not need to be disrespectful. It can also help me to clarify my thinking – or change my thinking – on a topic. It helps me to keep my thinking current and relevant. It is a great realisation that I can disagree with people and they won’t disown me as friends and if they do it probably says more about their intolerance  than anything I have said or done.

I actually think these sorts of issues are common for those of us on the Autism spectrum. Experiences of things like  being bullied, abused, hated and invalidated makes us scared to express our thoughts publicly or even to our friends, family or partner. For me I learned assertiveness and boundaries incrementally and very slowly over time. I am happy I am at the place I am with this.It is a big thing to address. Building skills in that area has great flow on effects to other parts of life. Based in my experience, I think the two key places to start are learning to value yourself and understanding the issues you face which might be stopping you being assertive etc – An act of self love and an act of self-awareness. This is definitely not easy but it is certainly possible. 

Narrative One:

“An autistic schizophrenic overweight middle aged woman is sitting in her tiny, chaotic home, talking to her black cat with the infatuation Gollum has for ‘his Precious.’ Hunched over a laptop with a fair share of crumbs and evidence of spilled things she is stimming and buzzing, writing feverishly. She talks out loud to Spotify, complaining as if the software had a soul and understood her need to listen to music which isn’t ‘terrible’. She is frightened of ghosts in the shadows. She is childless and single, alone in her world“

Narrative Two;

“The ACT Volunteer of the Year sits at her laptop, writing words which may help thousands of people. She has spent the day at her professional job and is now relaxing with some writing. She is driven to make change. She may be quirky but she is also brilliant and passionate. Her small home is devoted to her disability and mental health advocacy work. Her small but tasteful flat has its own name – Whimsy Manor. It is decorated in eclectic styles with beautiful artworks. The woman has a flair for the artistic which must be from her Masters degree in fine art.”

If you are a regular  reader of this blog you will probably realise that both these statements are about the same person – me. One is from a pathologising  viewpoint, and the other one – well, it felt a bit weird to write it because it is rather gushy, but it is obviously from a more sympathetic viewpoint. The two narratives demonstrate the concept that what we say and think about people colours our view and our relationship with them. For Autistic people and people with mental illness – and many other groups in society – there are a bunch of unhelpful stereotypes and assumptions that we often get lumped with. I thought it might be an idea to unpack a few I have come across and how they made me feel and what I did about them.

1. I take medication for my mental illness, I have taken this medication since 1995 (with a few tweaks for effectiveness). I moved into my own home in 2008, my tiny, chaotic and wonderful Whimsy Manor. I located a chemist close by so I could pick up my medication. I take six different things so use a Webster pack where the pharmacist puts the required dose at the required time so I don’t forget to take any of them. In 2010 I became very unwell and spent some time in hospital for my illness and also in mental health respite. I had to transfer my scripts to a different chemist as the respite place was in a different suburb. I went into the chemist in my home suburb and explained the change. I had my support worker next to me. The pharmacist said ‘oh., so your mum is going into respite?’ I have to admit I was baffled. It turned out that in the three years I had been collecting my medication from this business they had assumed it was for my mum as supposedly someone with an Australian Public Service lanyard who wore a suit every day could not possibly be taking high doses of antipsychotic medication! Amazingly this misconception took a few tries to address. Eventually the pharmacist said to me ‘Jeanette? Do you work for the government?’ To which I replied ’Yes.’ She considered this apparently radical idea for a bit and said ‘Most people who take these medications don’t work for the Government’. I replied ‘You would be surprised.’ Since then I receive a lot of respect from all the staff  at the chemist but it still amazes me the level of assumptions involved. My mum doesn’t have schizophrenia and she lives in another state, five hours’ drive away! I hope my experience has helped the staff to realise that not everyone fits into a stereotypical ‘box’.

2. A woman got in touch with me a couple of years ago. She professed friendship but seemed more interested to ask me to promote a sort of self-actualisation thing she worked for which apparently gave participants financial incentives for gaining new members. She wanted me to promote this thing to Autistic people and was very insistent. I felt uncomfortable being around her. The woman came to the launch of my second book. I had proudly taken the stage and professed my firm belief and understanding that Autistic experience is ‘different, not less’. After the speech I signed books along with the illustrator, a wonderful local artist called Andrew Hore. The woman came up to me and said ‘Jeanette, you know you don’t have to say you have Autism.’ Immediately I could see that things were probably heading in a horrible and quite offensive direction. Curtly I said ‘Why?’ The woman responded ‘Well, you could pass for ‘normal’”. I found it hard to respond to this highly offensive statement, particularly as I had spoken for a good twenty minutes about empowering young Autistic people to be their own amazing selves and support them through getting work. I don’t actually remember the exact words I said but Andrew, seated next to me said I handled it well. I know I refuted her statement and explained why I had no great desire to be ‘normal’. In context, I spect my teens and early twenties trying to belong and fit in. It was an unmitigated disaster and cost me my identity for many years and could have cost me my life. The biggest insult was that the woman did not understand why I unfriended her on Facebook after the incident!

3. I was at a conference a couple of years ago and had gone to the quiet room because I found the first keynote presentation triggering. The only other people in the quiet room were conference volunteers, mostly non-autistic people. We got talking. This was when not many people had come across me and my work. I was a little vulnerable because I was quite unwell (but was determined to go to the conference and deliver my presentation about Autism and employment). I found the conference volunteers in the room to be a little patronising, The conversation got to living arrangements and one woman asked ‘Do you like at home with your mummy?’ I am really proud of how I responded to this surprising statement. I looked her in the nose (I am Autistic after all and looking at eyes is scary) and said ‘No. I live in a house I am paying off with the wages form my permanent, full-time job in the public service!”.

I think all three of these encounters demonstrate assumed knowledge and stereotypes. I hope I did a good job of dispelling the myths so that others in a similar position to me don’t have the same experience. I think it is always best not to assume. Treat everyone as an equal because we are equals. We are all human. We are born and we live and we die. We need air, food water and love. Assumptions create misunderstanding, distance and anger between people.