On Autistic community, identity and respect  

I am an Autistic self advocate. As such I belong to a broad and diverse community comprising other Autistic self advocates, Autistic kids and adults, parents and family of Autistic kids (who may or may not be on the spectrum themselves), Autism support organisations and peak bodies and others with a stake in the wellbeing of Autistic people. Within our community there are many groups. Mostly I find the Autism community to be supportive and encouraging and i’m proud to count myself among its number. However, there are some issues which can come up which I would like to address in this post

Identity

The first sentence of this post was ‘I am an Autistic self-advocate’. There are some pretty strong indicators of how I choose to identify just in that short passage. I use ‘I am Autistic.’ This is known as identity first language. Lots of people I know use this rather than ‘I have autism.’ It is not the ‘correct’ way to identify, it is just the way I choose to. Identity first language means that I see my Autism as an integral part of my character which I cannot remove. It is part of me. Another clue to my self identity in that sentence is my use of the upper case ‘A’ in Autistic. Not many I now people use this but to me it reflects my view I am part of a culture, a sort of nationality of Autistic people. All of this is part of my identity. However, it is not everyone’s identity. Some people in the community get upset when other people do not use identity first language but say ‘I have autism’. This is foolish and unhelpful. How another person chooses to identify is their own business, not mine or anyone esle’s.

Trolling behaviour

Unfortunately some trolling and online aggression also goes on in our community. There are different shades of this, from unhelpful criticism to outright aggression. Sadly our community is not immune from the curse of the keyboard warrior. Some of the trolling and negativity baffles me. I see in the world a lot of people who could be called enemies to Autistic people – charlatans selling dangerous ‘cures’ to desperate parents of newly-diagnosed kids, people who are ableist bullies and victimise us, even people pushing eugenics. When another Autistic person trolls me or any of my friends or advocate colleagues, I wonder why they attack other Autistic people rather than focussing their vitriol on somebody who could probably benefit form some criticism. I mean, Andrew Wakefield is right there! Why target people who are essentially working for a similar outcome as the troll professes they are?

Events and organisations

I give presentations for a lot of different autism and other organisations. Some of these events are for organisations I have some reservations with. I often get questions and criticism form people saying ‘why wold you speak or write for them?’ My answer is usually the same. I don’t not so much speak or write for the organisations but for the audience. Of course there is a line I won’t cross but I never want to be someone who just preaches to the choir. If I just spoke to people with what I consider ‘good’ Autism world politics we would probably be sitting in a very small room telling one another how great our ideas are! Sharing my views with a larger base of people who are outside my small group of friends and colleagues is essential. Otherwise why would I consider myself an advocate? I think if a parent of a newly diagnosed child, or an adult who has recently received their Autism diagnosis is looking for information, I would like them to see something from me or another advocate colleague than from someone who is not supportive or understanding of the needs of Autistic people.

Disagreement and dissent

Dissent and disagreement are actually wonderful things provided they are respectful. There is a huge difference between trolling and respectful, reasoned argument. If you disagree with what I say, please let me know. Dissent is a great way to broaden thinking and refine your ideas.

Fundamentalism and sectarianism

One common issue in any culture is fundamentalism. Fundamentalism can be summed up as ‘What we think is right. Any even small variation from this ‘truth’ is wrong. We need to make sure everyone knows what we think and try to bring them around to our way of thinking as their’s is ‘wrong.’”  Fundamentalism is really divisive and unhelpful and sadly it does lurk in parts of our community – as it does in pretty much all communities. An example of this is that I got into some trouble with some more fundamentalist members of our community a while back when I posted something with ‘the wrong’ terminology. It wasn’t that I was using offensive terms, I had just apparently put the wrong nuance on my wording of a post. A couple of people shared my post and ‘ripped me to shreds’ on social media. They did not message me to engage in discussion. T o me that demonstrates fundamentalism in action. My statement was actually very positive and helpful but because I didn’t conform with the ‘right’ terminology, all that positive message was seen as unhelpful and worthy of derision.

Perceptions of the community

Things like fundamentalism and criticism for how others identify is not only difficult for people currently within the community, it has a significant impact on people who have just joined us – such as those who are newly diagnosed or whose kids are newly diagnosed. People just finding their place within the community can be put off by being attacked for saying the ‘wrong’ thing. Assumed knowledge that if someone is Autistic the they ‘must’ identify in one way or agree to a series of quite specific ideas can be off-putting and even exclusionary. Divisiveness and focussing on minutiae can often alienate people.

Please feel free to comment and discuss this one.

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‘Tis the season to….’ reflect on social connection apparently

I thought this was going to be a big reflective Jeanette-fest but (thankfully) it moved away from that and into a nice piece about the importance of social connectedness. Enjoy

Here goes…. Last night I went to take my medication. I take seven different sorts at two different times in the day. I’m quite vague and rarely have a good handle on which day it is (or month, or year sometimes) so I take my meds using a webster pack. The pharmacist puts the different pills in little sections for the corresponding time and day. It works well and incidents of me taking the wrong thing or the right thing at the wrong time have been rare.  Most of my medication is for my mental health difficulties, which are significant and numerous. So back to last night. I popped out the evening pills and was about to down them in one go when I noticed something was wrong. Instead of the usual three Seroquel tablets which are white and oblong and always have been, there were three round white mystery meds. My paid job is in risk management so my brain was adding up likelihoods and consequences. I sensibly concluded that taking medication which I didn’t recognise and could be the result of a pharmacist error and possibly result in illness or death…well it wasn’t an option. I spoke to one of the mental health crisis team who agreed that I should miss the dose.

As a result I slept for about three hours and was in a twilight sort of waking dreaming fug for the rest of last night.  There were some pretty interesting visual distortions and I found myself actually needing to argue with myself that eating cat litter – while a new experience – would probably be one I regretted. Probably would regret quite a lot. I sorted the issue of the meds with the very apologetic pharmacist and called in sick at work. That is not the main point of this post though, just the background.

Today something happened which got me thinking. First of all a friend called to see if she could take me to the late night pharmacy. Then my manager at work messaged to make sure I was OK. I called back and she spoke to me for some time. A great friend in Adelaide and I had a great – and amusing – message conversation. My lecturer friend messaged to make sure I was OK even before I got up! Then I checked Facebook and loads of people had asked if I was OK and suggested useful things I could do, including a friend from overseas who gave me a bunch of information about the psychotherapy model she uses. My phone rang again and it was my former supervisor who now works in a different area but who heard I was off sick and wanted to check I was OK and wish me merry Christmas. Another friend sent me lovely flowers. I was quite overwhelmed with all these people caring and wanting to help …

Keep that in your mind. I now want to take the rather well-used blogging TARDIS and go back a few years to a younger Jeanette in similar sorts of circumstances, mental health-wise. This previous version of me is in her twenties. She is living in supported housing for young people with serious mental illness. She is quite psychotic – the combination of a recent medication change and taking on a role as a casual dishwasher in a restaurant and being a huge perfectionist – which had resulted in acute illness. Twenty-something me had the following supports: Lovely parents who are accepting and beautiful but both work full-time and live 300km away, a support worker from the house I lived in, a mental health case manager, one friend that I met the year before in a  mental health rehab place and who is in hospital for what will turn out to be the final 12 months of hr short life, twelve housemates from the supported accommodation i was living in, a somewhat creepy ex-therapist who would shortly afterwards be deregistered for misconduct and a very lovely brother who communicated via the quite new medium of email from the United Kingdom where he was on an extended visit. My younger self was admitted to the psychiatric hospital. I had one visitor – the creepy ex-therapist who I had asked not to come. I also had a misdiagnosis so while I was experiencing delusions and terror, the hospital staff thought I had borderline personality disorder. This meant they tended to be blaming and punitive rather then supportive.

Of course twenty-something me managed to navigate her way through all of this to where I am now. The point I wish to stress though is the sort of people  my supports were. Apart from loving but distant family members, everyone who supported me was doing it because they were paid to. My former self had only one friend who was in an even worse predicament than I was. The number of people who had any meaningful personal stake in what became of me were few and far between. Imagine if all the people you look to for support are essentially strangers employed to keep you out of harm’s way? They may be nice, they may not be nice. You have very little say in who you get. And even to the nice ones, you are essentially part of their work.

Sadly this is the case for vast numbers of people. Right now just in Canberra where I live there are probably tens of thousands of them. People in aged care – including young people in aged care due to the lack of more age-appropriate facilities, people with mental illness who have lost contact with family and friends, homeless people, those in prison, people who are socially isolated and many Autistic people. This includes many people who have no friends or family or who suffer family valence and domestic abuse. I could list so many categories of people who are n a similar spot to where where I was in my twenties in terms of support and social connection. It is very sobering.

I was lucky, or fortunate, or blessed, or determined or whatever you want to call it but many people aren’t. This is not their ‘fault’ – in fact the notion or fault in these situations is way too simplistic. Please don’t give me that ‘deserving / undeserving poor’ concept. Just imagine that you are sick and in hospital and the only person who visits you is a creepy ex-therapist who you complained about to the relevant authority? Imagine you live in housing not with people you choose to but with those who lived there when you moved in and you had nowhere else to go? In fact I was incredibly lucky then as I still had connections to family. Many people – even twenty-somethings – in that situation have little or no family connection or harmful relationships with family.

I’m not going to ask you to all rush out and invite a homeless person to Christmas dinner, but the act of thinking around my medication mishap sort of opened the door to these sorts of consideration. We are all people. We all make mistakes. No single one among us is better or worse than anyone else. Everyone can change. Being someone who has a genuine stake in the outcome of someone’s life other than being paid as a case worker (or whatever), can make a huge difference.

Thank you to all the people over the years who have helped enable my own journey. I can’t name you all but hopefully you know who you are.

Merry Christmas or Happy Festivus or just happy Friday to everyone. JP

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I don’t need fixing, thanks

In my understanding, Autism is a neurological difference, a divergent way of viewing and experiencing the world. Autistic people are Autistic for their whole life. It is an integral part of us. Autism is viewed by different people in a variety of ways, from something deficient and in need of ‘fixing’ to a strong and inclusive identity.

I am an Autistic woman. I do a lot of responsible, high level, apparently impressive things. I work full-time in a professional role in Government administration. I write books about Autism and other things which people read from time to time. I have represented as a self-advocate in all manner of forums. I have bunch of awards for leadership and community service and lots of other cool stuff. I am an Autistic woman. I have a long list of things which make me different and unusual to many people. This does not stop me from doing all the various things I do.

As other Autistic people often do, I stim, I have passionate interests which I am absorbed in and which could be described as obsessions. I have meltdowns, I can get very anxious and worry and catastrophise at times. I have eaten the same evening meal at home since 2013 (fried rice with veggies and egg – I know you might ask. And it’s yummy and has gained the term ‘Jeanette fried rice’ with some of my regular visitors). I never make eye contact and instead look at the forehead just above the eyes. I have no understanding of human body language or facial expressions. Unless you are visibly crying or say ‘I am upset’ I can’t pick it from just looking at you. My cat is the most important person in my life. I talk loudly and sometimes miss the thread of the conversation. I wear all sorts of things which people say are funny. And I don’t mind any of this. It is me. I have achieved all of my various exciting things as this quirky person.

So this is why I am sad when people try to ‘fix’ me or to ‘fix’ any other Autistic person. In my mind, if things related to your Autism causing harm or danger to you or others then they need to be addressed but if the only issue is that you don’t look or act like the other non-autistic humans, then I feel the lesson should be about others learning to value and accept you as you are rather than nit-pick about meaningless differences.

Take the making eye contact issue. So many Autistic kids are told to look people in the eyes. Almost all my Autistic friends have described what this feels like. It is different for everyone but it tends to be a really unpleasant and intense thing. One friend talks about making eye contact as being like to laser prongs boring into her eyes, physically painful and overwhelming. Another said it is like laying her soul bare. For me, eye contact feels like I can see into the person’s very essence and being. I feel trapped and lost. I very rarely make eye contact by accident and avert my gaze as soon as I can.

I met a non-autistic former teacher once who proudly told me she had taught a  boy on the Autism spectrum who was about 11 years old. She said he would look at his feet when speaking to her so she described physically putting her finger under his chin and literally ‘lifting his gaze.’ I was tempted to do this to the former teacher to see how she enjoyed a physical invasion of her space. I didn’t because I’m very nice but I was really upset to think of this happening to some young boy.  This sort of thinking around eye contact, particularly with children on the spectrum, is sadly very prevalent. The thought is that eye contact is some kind of basic means of communication and if you aren’t doing it, you are communicating ‘wrong’. This is untrue. Eye contact is not universal. Many cultures – including some Indigenous Australian cultures – see eye contact as invasive and aggressive so avert their gaze out of respect.

This example comes down to the very basic notion of respect and understanding. Autistic people – and particularly children – are being forced to do something largely unnecessary and which is often incredibly unpleasant for them because their ‘different’ is viewed by many as making them ‘less’ .

Some ‘treatments’ for Autism involve modifying apparently ‘problem’ behaviour. This often includes things like stimming. If you are unsure what stimming is, it is described as ‘self-stimulating behaviour’. It is often a self-soothing technique and is different for each person. Some people – like me – have a lot of sensory seeking stims. Looking at shiny paper or colourful art – or as most people who know me would know, colourful jewellery, shoes, clothes and wigs. My other stims are physical ones – I wiggle my fingers when excited and clap my hands once or twice when nervous. When I am about to get up on stage for a presentation I often tap my hands on my thighs a few times to get ‘in the zone.’ None of these things are hurting anyone but they are helping me to process emotions. Some  ‘therapies’ for Autistic children try to get them to stop stimming. I am actually not 100% sure why this is but I imagine it is because the behaviour looks odd. Some people might argue that stimming or looking visibly different is a cause of bullying. Oh dear. I think we need to go back to our human 101 class and understand the somebody ‘looking weird’ is not actually doing any harm. If a bully targets them, that is the responsibility of the bully, and presumably those who helped show him or her that different and weird deserve abuse. And stimming for autistic people is often a very effective de-stressing and de-escalation strategy, helping them manage life better and avoid meltdowns. To take that away from someone and tell them it is wrong and they need to stop doing it, is pretty cruel and unhelpful really.

We would be so much better off to try to make the world more understanding and respectful of difference rather than taking away people’s strategies and making them look at someone in the eye. Teaching Autistic people to be ‘less autistic’ is incredibly unhelpful and mean and invalidating to the autistic person. They will always be Autistic. It would be some much better to teach them to respect and love themselves rather than berating them for stimming and other ‘odd’ behaviours.

I’m going to finish off with a bit more of my experience on this topic. In recent years I have been told to ‘learn to manage your emotions’ (in response to me using strategies to de-escalate what was looking like a massive meltdown in a setting where meltdowns would have been very damaging to my reputation). I have been told that ‘you shouldn’t say you are Autistic. You could pass for normal,’ and that old chestnut ‘You shouldn’t talk about Autism. You are very mild.’ So basically if I do the social chameleon thing and try to look more neurotypical I get dismissed and gaslighted and if I show just a little of my challenges with overload I am seen as unstable. Thankfully most people in my life at the moment understand all the things discussed in this post. But there are still kids and adults suffering just because they are meant to ‘be less Autistic’.

And you know what? Nobody can ‘be less autistic’ or ‘be more Autistic.’ We are who we are and that is OK.

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Reflections on a helpful year

Yes it is that time again – self-reflection and contemplation and that sort of thing. Hopefully my reflection will include some relatable and useful nuggets for readers to consider.

My 2016 has been an amazing year in many ways.  If you look at my social media posts there are all sorts of tangible achievements I have had – awards, public speaking opportunities, books being published and contracts for more books. The sorts of things which make my parents very happy to introduce me to their friends. These days I have a lot of ‘parental pride points’. That may sound  a little trite and self-indulgent so I will qualify it with the ‘that was then, this is now’ story (briefly). This time twenty years ago I was incredibly unwell with mental illness. I was socially disadvantaged and excluded. I had every desire to ruin my life. I hated myself. I was a prisoner and would be a prisoner, homeless person, drug addicts and alcoholic for some years to come. I was apparently without hope. I am ashamed to say I turned my parents into the couple sitting up the back of the Autism support group feeling and and not wanting to share what their child was doing,

Somewhere between then and now I changed my attitudes to life and started on a much more positive journey. I won’t list these accomplishments but suffice to say I am a largely very happy, insightful, fulfilled, respected person who has pride in what I do and is passionate abut driving positive change for Autistic people and those who love us.

In the eleven years of my advocacy journey I have learned a lot about myself and the world. So while on paper 2016 was the most eventful, exciting and fulfilled year of my life, all that excitement was paired with some changes and realisation which I don’t put on Facebook so much. These include:

  • A loyal friend is a beautiful and highly valuable person. Reciprocate and respect that person.
  • I have a mental illness. It results in lots of suffering. I used to worry I would go to hospital and have to miss a bunch of presentations and things. I don’t worry about that future at the moment – or I try not to at least.  When I am unwell I seek the required assistance and support and remind myself that everyone suffers. Where it leads to is largely up to how I approach that suffering. If I catastrophise and worry, the worst usually occurs. If I remind myself that suffering is part of existence and I will get through it, it actually makes it a lot more manageable and less likely to result in hospital or other nasties.
  • Lacking assertiveness is not an option for me. I am available to pretty much anyone in the world who wants to talk to me. This is a choice but it does sadly involve occasionally having to set a limit or stand up to someone. I am constantly surprised how I have taken on this skill. in  short space of time. Necessity is the mother of invention as they say.  I’m very proud of my ability to be assertive in a firm but respectful way.
  • There are people in the world who want to hurt and abuse people from minority or disadvantaged groups. As I belong to a fair number of those groups,I feel I have a reasonability to support others being victimised and take a stand in what I say. I  really don’t ever want to stand idly by and watch when evil and discrimination and hate occur.
  • I have finally learned to not be competitive against other people. Someone succeeding is not ‘stealing’ my success. This has been an ingrained attitude with me for years. I hated it as I felt really guilty about being jealous. It saddens me that I had to have a bunch of success in order to overcome my jealousy but it is how it is I guess.
  • I am less ashamed of my ego. Someone once told the that I wouldn’t be able to put myself into the world without confidence and a fair whack of ego. So I guess as long as my ego is kept on a leash and that I am only competing against myself, it can actually be a positive attribute.
  • I learned that other people are anxious about putting writing and thoughts into the world in case anyone says mean things. I don’t think like that very often. Finding out that others do this made me more self conscious about posting blogs but thankfully my social media family are almost all very lovely and supportive.
  • I learned that disagreement from others can drive learning and growth. Providing the disagreement is from place of respect – on both sides – it can actually be very useful.
  • I also realised that I learn something from every conversation I have around Autism.
  • I had so ay people telling me that my work has made a difference in their life. I also learned that taking this gratitude on board can be  a bit overwhelming, so I just tend to say ‘thank you’ to them and not get into a discussion about my apparently excellent work.
  • I learned that I do not need everyone to like me.
  • I learned through friends that Mr Kitty loves me as much – or possibly more – than I love him. I am eternally grateful for the gift of Mr Kitty.  expel who don;t strongly relate to animals may not understand this, but being given Mr Kitty was the single most influential event in me recovering form three years of mental ill health.

People are gelling me ‘onwards and upwards’ for next year. I”m not sure how this works. The last three years of my life have been incrementally more and more amazing and presumably this can’t happen each year or by 2026 I will be the supreme leader of the universe (and I don’t want that!!!!) I think each year has different challenges and learnings. I have applied to start a PhD next year so that will be another adventure. I have all I need right now. Consolidation and supporting the careers of others will be my goals for next year.

Thank you for your support, kind words and contribution to my understanding of life. I am privileged to be here, privileged to get to do all the things I do and grateful for every moment. I look forward to doing my thing next year.

 

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OK, this one is an accomplishment. I am actually very proud of this. It was the ceremony where I received my 2016 ACT Volunteer of the Year award

 

Tips for taming an errant brain…



Most people who read this blog regularly know I have a mental illness which makes my life rather challenging and difficult from time to time. It is doing so at the moment in fact, hence my perceived need to write this blog. Don’t worry – I’m not going to whinge about my errant brain chemistry. Instead I will use the experience of my errant brain chemistry to share some things which are helpful to me and which others can benefit from too (hopefully).

I have had the crisis team call me every day for over a week. They called me twice tonight. Anyone who has used public mental health services in Australia will know there is only one step between that and me going to hospital – that of the crisis team visiting me. I have no intention of that happening. I am an empath so being in hospital with all he other people’s misery crowding in with my own misery is very unpleasant. I will resolve to be miserable at home if I can.

There are a few things going on that will enable to me to remain at my beautiful home Whimsy Manor rather than what the French so poignantly used to term ‘l’hotel Dieu’ (literally ‘God’s hotel’).

These things are keeping me able to manage:

  • Mr Kitty. My black feline friend has a number of useful functions other than being his beautiful and naughty self. He is protective factor in terms of logistics, If I did need to go to hospital, I would need to find cat boarding at very short notice for an indeterminate period of time. I wouldn’t want to do that to Mr Kitty – or my bank balance. I just think ‘not an option’ to myself and keep going. And of course the furry boy is incredibly cuddly. Every time I pick him up – whatever he is doing  – he goes in for a snuggle. He is the most affectionate cat I have ever had. Cats are ace!
  • The fact that people ask me for mental health tips and strategies and helpful resources puts my own issues into perspective and altruism and assisting others are great distractions,
  • I have basically trained crisis team and other local mental health services to understand my needs. This took a very long time. Sadly I think a lot of Autistic people  have had issues accessing respectful and beneficial mental health care. But for me now I am reasonably be sure if I call the crisis team they will actually help me so I am not afraid to seek help. You have no idea how sad I am to write that sentence. Seeking help for mental health issues really should result in help being given, not invalidation and dismissiveness.  Unfortunately this is often not the case for people with mental illness and it would seem particularly to be the case for Autistic people with mental illness.
  • I use some pretty nifty strategies which work for me. My favourites are from the Dialectical Behaviour Therapy (DBT) model. one is distraction – i.e. focussing your attention on something other than focussing on feeling miserable. This tricks your brain into sort of forgetting your distress, at least while you are doing the distraction. I often need to do distraction continuously but it is a very helpful strategy.
  • Another DBT skill I use is one called ‘Opposite Action.’ This means challenging what your unwell brain wants you to do and doing the opposite, I find it is particularly good for depression. I might feel like staying in bed all day so I get up and make breakfast and have shower instead. It usually lifts my mood perceptibly. It can be had to do if you are feeling really low but tell yourself it will be worth the effort.
  • Whenever I am unwell I remind myself that the distress will not last forever, For me at least – and I think for a lot of people – my mental illness episodes are cyclical. So if I’m feeling miserable now I know I won’t be forever. It is just a  matter of getting through it now.
  • I access help. I certainly didn’t used to but I have learned that help is available. Even if it is a Lifeline counsellor I’ve not met before on a phone or an online chat, I find it is usually helpful to reach out to others.
  • I am not ashamed to discuss my illness – or that I have an illness – simply because it isn’t something to be ashamed of.

One thing I will say about managing mental illness is that effective strategies vary across individuals so find things which work for you.

A mental illness can often distort your thinking and make you view things like friendships and social interactions very dimly. I can get very anxious and think I have unintentionally upset people. Then when I start to come out of the illness I realise I was putting two and to together and making 5612.8! Sadly you can’t always trust your brain. You can strengthen your ‘you’ to be able to challenge your brain when it is misbehaving but I think that might be a topic for another blog,…

So I will take me brain and apply Mr Kitty cuddles and cups of tea and Facebook chats with lovely people and hopefully the crisis team will stop calling me soon 🙂

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

 

Mountains and molehills – why I ‘sweat the small stuff’

’Don’t make a mountain out of a mole hill!’ That was one of those confusing sayings when I was a kid. I worked out that it meant I shouldn’t get really upset about little things and make them seem more troubling than they were. For an autistic person, there is a flaw in that reasoning.

Some people’s ‘mountain’ may be another’s ‘molehill’ – what is signifiant to one person may be largely irrelevant to another, and vice versa. For Autistic people, we often ascribe meaning to things non-autistic people see as irrelevant. For an autistic child, a change in the routine of class may cause a meltdown whereas the non-autistic children in he class may not even notice. In that situation, a teacher who is not experienced in working with autistic kids might be annoyed with the autistic child’s response. S/he may even discipline them for poor behaviour but to the autistic child the change was a big, stressful thing.

Understanding what is important to an autistic person and what will impact them is a really important part of being our friend, partner or a supportive teacher or clinician. I have some examples from my experiences with psychiatry which hopefully illustrate this issue as it is experienced by an Autistic adult.

I shall set the scene. I am a forty-two year old author and respected member of the autistic community. I live in a house which I purchased eight years ago. I am a ten year veteran of the Australian Public Service, I have spoken in front  of many large audiences, including for TEDx canberra in 2013. I have a Masters degree and a number of major awards, including ACT Volunteer of the Year. I am seen as intelligent and articulate. I am considered ‘successful’ within the autism world and the wider community. People who don’t know me well are often surprised that I struggle with many things others might not notice.

I have a mental illness which is fairly well managed at the moment. However, I still need to see a psychiatrist regularly. My two most recent psychiatrists have been lovely – respectful, kind and treat me as an equal. However I had to leave one of the and I am struggling to stay with the latest one. This is not due to any poor clinical behaviour, mistakes or rudeness by the respective doctors. The reason is logistics.

The psychiatrist I left last year worked in public mental health clinic. It was one of those awful places when all the doors were locked and the reception staff sat behind a glass screen which went right up to the ceiling. (I was always tempted to ask them to count my coins or deposit a cheque!)  The whole setup smacked of paternalism and control. The waiting room was tired and sad – magazines from ten years ago lay unread and the walls were plastered with black and white photocopies of factsheets on mental illness, This was not what put me off though, unpleasant though it was. The final straw was when the lovely receptionist who was always there went part-time. The change in and of itself was not the issue. The problem was that the two receptionists who shared her job were gatekeepers of the worst order. They would not take messages. The final straw came when I was required to obtain a Working with Vulnerable People card as part of a voluntary job I was doing, Because I take medication I was asked to get a letter form my treating doctor who had prescribed it. There was a very short deadline for this information so I asked the receptionists if they could provide the general email address for the clinic so I could forward on the email. They flatly refused and said I had to mail it. This caused a lot of stress. I had to ask the ACT Government which issues the card for an extension. The thing that really upset me was how insulting – and arbitrary it was. I am a middle manager in the public service. I have access to email addresses for any number of high level people and in my almost ten years in the Service I have NEVER sent an inappropriate email to anyone. But I guess once you walk into a public mental health clinic you lose your identity a little. I knew I couldn’t attend this horrible disrespectful place. My only option was to go private – which costs me $310 each visit but is nicer in a load of ways.

So after the officious prejudice from the public system I started seeing a private doctor, This was fine until  few months ago when I called to make an appointment and got a recorded message saying my doctor had moved. There was a number which I called and got through to a receptionist in a new clinic who booked me in. They didn’t have EFTPOS set up so I had to pay the account after the fact when the receptionist sent me an invoice. They also didn’t have their diary online yet so I couldn’t book a new appointment. A couple of weeks ago I got quite unwell and needed a psychiatrist appointment. In fact  I had called the crisis team and they had strongly recommended I make an appointment. When I called the number I had got through on before, I got the sounds of a fax machine! I thought to call the number for the previous clinic. It gave me a new number which I called…..and got a recorded message saying the clinic was open form 9-5. But I called at 2:00pm! I tried two more times with no luck. Now I have no psychiatrist appointment, am kinda unwell and will be decidedly irritated if I have to get really unwell and go to hospital or some other nastiness because of logistics!!

So, maybe I am ‘making a mountain out of a molehill’ but it is a very real issue to me. It’s funny because when I have complained to the two doctors about this sort of issue I got the impression they had no idea how stressful and at times insulting it was for me. Maybe they thought it was part of my mental health pathology to be bothered by apparently small things.

Basically, out of all that annoyance to Jeanette, the message is to listen to autistic people and respect that if we say something is  bothering us – or if we can’t do it in words but explain through behaviour and evident stress – then please believe us. One person’s mountain is another person’s molehill. It isn’t ‘right’ or ‘wrong’ – it is just our experience.

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