A day in the life…. of a valuable, worthwhile, human who happens to be Autistic

I was recently asked to contribute a blog for an event challenging that oh-so-ableist and damaging group of people who call themselves Autism speaks (or as some have rebranded them, Autism $peaks). A little background…. Autism speaks starts from the premise that Autism is a ‘tragedy’. They promote ‘cures’ and basically serve to negate pretty much everything advocates like myself and so many others do to promote the value and humanity of Autistic folks. Autism speaks stands at odds with most of the things I believe in about advocacy and respect. Unfortunately Autism speaks has a broad following and supporter base, particularly in the USA. The whole ‘light it up blue’ business was initiated by Autism speaks and yet most people who aren’t in the Autism world think that the blue thing is a positive. (I will not be wearing blue on 2 April, rather I shall wear multicolours. If there’s blue in amongst them, I apologise.)

Anyway, back to the blog…I was asked to write a piece for an organisation doing a ‘flash blog’  on April 2nd to challenge the ‘tragedy/cure people’ negativity emanating from the offices of Autism speaks (and I’ve put a link in this post if you want to join in). This article is what I will be providing. It is simply description of my day as a human being who happens to be Autistic.

A day in March, somewhere in Canberra….

I woke up at 4 am and checked my Facebook – a bit of an occupational hazard for an Autism advocate in the modern era. Somebody had misunderstood one of my posts and had decided to give me a (very short) lecture on my ‘Jeanette;s Autism Books and Other Things’ Facebook page. I dashed off a rather bleary response and failed miserably to get back to sleep…until about 6am. Then I woke up with the alarm clanging at me and Mr Kitty standing in the vicinity of my nose and saying ‘MEOW!!!’. I fed the furry boy and took my morning medication.  I realised it was 7:55. I am usually safely in my office by such an hour, with life-sustaining coffee. I ran around madly and eventually was showered, suited and fed. I got to work after my supervisor, made a cup of coffee and sat down to my job as a risk management specialist for a Government department.

It seemed to be the day for people to request odd things from me, from the academic in Western Australia I had never met or heard of wanting a letter of recommendation for her research, to the CEO of an organisation wanting to attend a talk I am giving in April and do some promotional activities. I grumbled to my colleagues about al these impositions but I didn’t really mind too much.

Work kept me occupied  – there is a lot to do. I have a big spreadsheet to maintain! Seriously though, I love my spreadsheets. I liaised with everyone I needed to and by lunchtime was feeling accomplished. As I ate my beef and salad sandwich from the work cafe and lamented the overuse of seeded mustard, I saw an email from the organiser of the Autism MOOC course set to start in April which has some videos by me (an ‘expert’ apparently. Though I suspect all people on the Autism spectrum and those that love us are in fact experts. I’m just a loud Alpha personality type who gives TEdx talks and writes books and promotes myself. I’m probably no more an expert than anyone else.) The MOOC person and I exchanged a couple of emails and then I had a call from a PhD candidate I had offered to talk to about her research into post school options. What a lovely lunch break I had, speaking to this person. I returned to work energised from our exchange and made phone calls and read things – you know, all those essential elements of public servanting…

A friend rang at 4 pm. I left work at 5:30 and caught the bus. I’d forgot my Tangle fidget toy and cursed – humanity en masse in public transportation settings always warrant headphones and music and a good play with something sensorily soothing, but what could I do? It could have been worse – at least nobody got too close physically.

I bought groceries, thinking about reverse prejudice for some reason. I got the groceries home and found a little furry fellow waiting for me. Cuddles and purrs ensued. I made my dinner – the same recipe I’ve eaten pretty much every night since 2013 (It is healthy and involves many vegetables, mum :)). I watched some of the nice things on the Antiques Roadshow and then turned on Alastair the MacBook Air and here I am writing this post.

That has been my day so far. Is that day all that different from others’ days? Am I ‘broken?’ Ifs my life ‘Tragic’? Do I need a cure? No on all counts. I am a forty-something woman. The first twenty five years of my life were hard, the last fifteen were instructional. I have friends, family, work colleagues and a cat. I do not feel that my life is less valid than anybody else’s. Who would make such a pronouncement? I know I couldn’t. I can’t judge one person’s experience over another’s. I personally love my life most of the time. It can be hard but being human can be hard, whether you are Autistic or not.  Autistic people are valuable, worthy, sensitive, intelligent, interesting, good friends, good partners (and not so good for that matter). We are humans with all the range of human qualities, foibles, interests, genders, sexual preferences, values, beliefs and quirks. We are not children in adult bodies. We are not nature sprites, ‘brave’ and our experiences and lives should not be used as ‘inspiration porn’. And don’t get me started on puzzle pieces. I think I should probably stop now…. I really hope this helps.

Here’s that link to the ‘flash blog’: http://idontneedacure.blogspot.com.au

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The DSM 5 Autism criteria – rewritten with neurodiversity in mind

For Emma, Jane and my new book about Autism and mental illness, I had to dig out the diagnostic criteria for Autism in the DSM- 5. It made me sad, so I decided to whip out my advocate brush and give it a neurodiversity-based touch-up. I hope you like it. I’m not sure how a doctor would use it but I prefer it to the original version. The way it works is that I have listed each category of the DSM -5 diagnostic criteria for Autism in italics and underneath have redrafted it. Enjoy.

A. Persistent deficits in social communication and interaction across multiple contexts, as manifested by all of the following (currently or by history):

1. Deficits in social-emotional reciprocity

2. Deficits in nonverbal communication behaviours used for social interaction

3. Deficits in developing, maintaining, and understanding relationships

Specify current severity based on social communication impairments and restricted, repetitive patterns of behaviour.

A (Ausome) Different ways of communicating and relating to others. This is part of the person’s basic make-up. It is not a deficit or a disability, it is just a different way of communicating. Some ways in which this might be demonstrated include:

  1. Different ways of relating and experiencing emotions. Some people may have hyper-empathy.  They may make excellent psychologists or counsellors.
  2. Interacting in different ways. Being honest and straightforward and not generally using things like manipulation or sarcasm.
  3. Approaching relationships differently to non-Autistic people. People may be very loyal and/or have strong bonds with an individual or small group of friends. Autistic people often have a great connection with non-human ‘people’ too and a connection to the natural world.

B. Restrictive, repetitive patterns of behaviour, interests or activities, as manifested by at least two of the following, currently or by history:

1. Stereotyped or repetitive motor movements, use of objects, or speech

2. Insistence on sameness, inflexible adherence to routines, or ritualised patterns of verbal

or nonverbal behaviour

3. Highly restricted, fixated interests that are abnormal in intensity or focus

4. Hyper- or hyporeactivity to sensory input or unusual interest in sensory aspects of the

environment

B (Beautiful) May be experts in a particular area, have a strong focus and determination. May have very strong interests on a topic and activities related to these interests may result in a great sense of joy and satisfaction.

  1. Innovative and imaginative use of objects. Creativity.
  2. The ability to follow a schedule. Seeing patterns in things – very useful if the person wants to work for the police as an investigator or be a mathematician or climate scientist.
  3. Passionate engagement in a particular interest. As life progresses, Autists can develop a huge general knowledge based on all the topics they may have been interested in. Very useful if the person wants to be a university professor. Also, the interests can form an excellent self-soothing tool should the person be depressed.
  4. Exceptional, accurate and perceptive sensory skills. This is highly useful in areas like catering and viticulture.

C. Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life). 

C (Curious and Clever)

Young children may be quirky, smart and individual. As they grow older, the world can dampen their amazing spirit but do not be disheartened as Autistic people are often resilient and resourceful.

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D. Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.

D (Diverse) The weight of a world which often does not value or respect Autistic people can mean that they struggle to navigate life. This is not due to their inherent deficiencies, rather it is mostly a result of a focus on some arbitrary ‘norm’.  With the right support, understanding and self-confidence, Autistic people can rise above this and be their best ‘them’. This is an area for further work.

E. These disturbances are not better explained by intellectual disability (intellectual developmental disorder) or global developmental delay.

E (Exceptional) Auties are Auties. They are amazing as is and defy this sort of diagnostic negativity through their brilliance.

Individuals with a well-established diagnosis of autistic disorder, Asperger’s disorder, or pervasive developmental disorder not otherwise specified should be given the diagnosis of autism spectrum disorder. Individuals who have marked deficits is social communication, but whose symptoms do not otherwise meet criteria for autism spectrum disorder, should be evaluated for social (pragmatic) communication disorder.

Auties should be given a diagnosis of ‘human being’ along with all the other human beings. We are all pretty much the same and just a little bit different.

 

A meme and a me, being Ausome and winning things…

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a busy week

Lovely blog from Dawn-Joy Leong who was my guest on Jeanette’s autism Show last Saturday

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A busy week. Where did the time go? How do we sense the passage of time in place and space? I feel through my fingertips the liquid dust slipping, sliding, seeping inexorably towards, then past, and away from me. So much tiredness. Bursts of frenetic scrambling scrunching engaging with mind and concrete materiality. Body and mind in a grumbling atonal dissonant Call and Response. The dishes pile up as I plunge into work. I need a Jeeves – I can feel the grittiness of the floor under my feet. Washed and dried laundry waiting for me in an impatient mess. Boxes of ‘things’ still unresolved. Visual discomfort. I need shelves. And a Jeeves.

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The business of being busy – or why I work 80 hours a week and love it

My dad had a farm throughout my childhood and teenage years. When I was a young child I didn’t really get much pocket money. I got something much better – wages and business income. Now this might sound like my parents were horrible people sending their daughter out to work in the fields but it wasn’t like that at all. When I was small my dad told me that I could make some pocket money by growing a crop of tomatoes, so he showed my brother and I all the skills required to grow tomatoes. In fact I suspect most of the growing was done by my dad, but when it came harvest time, I discovered that my crop had yielded 17 pounds – a fortune to a six year old. As I grew older, if I wanted money I would do some easy but necessary tasks around the farm and through doing this learned the value of work – reward for effort. This is a lesson that I think is valuable for all children: if you want to have something, you put in some effort, be it chores or farm tasks or whatever. It is a great skills for life, especially for kids on the Autism spectrum as it can build self-worth and independence. When my brother and I were teenagers I remembered my dad telling me that any boss would be glad to have both of us given our strong work ethic. At a young age I knew the value of a hard day’s work.

When I moved out of home I got a job in a fast food restaurant and was soon promoted to junior manager. It never occurred to me to go through life without a job. I enjoyed work – it felt good and I for paid. Sadly the next few years of my life were devoid of profitable activity. A new manager came to our restaurant and started to sexually harass me. It wasn’t just offensive comments either – he would touch me and I was genuinely concerned for my safety. Being an Aspie and a young Aspie at that, I had no concept that there might be such a thing as workplace rights or that my manager was in the wrong, so I quit my job and claimed student welfare benefits, known at the time as Austudy. Thus began a dire chapter in the story of my working life. I was outside of the labour force for many years. I subsisted on welfare payments and lived a shady life with criminals and drug addicts, none of whom worked. However, I made an attitudinal change when I was 25. I decided that I wanted an ‘ordinary’ life: a professional job, an education and a mortgage. I had no idea how to do this but started by enrolling in a university course.

About halfway through my first year at university I decided I needed a job. A friend worked in a restaurant and recommended me as a dishwasher. So I began doing two shifts of work a week. It was unlike when I had worked as a child and a teenager though, for in the past I had been confident in my skills and quite commanding at work. Now I was terrified of making a mistake, It was like I was a brain surgeon and any tiny slip would result in death (rather than a dirty fork being returned by a patron, as it would actually have done). I grew absurdly anxious and the day before each shift was torture. I was so anxious I thought I would pee my pants on the tram on the way to work. Of course this thought only added to my anxiety. As had happened to me in the past, anxiety turned into psychosis and I had to quit my job.

I wondered if I would ever be able to work, but my good old determination kicked in. A year or two after my unfortunate dishwashing experience I started a volunteer job. I was far less worried as the gallery I volunteered at weren’t paying me so I didn’t feel quite as responsible. I took a number of employment stepping stones – from a small business editing video, to writing a book and becoming an author to working as an Autism consultant and then I was ready. I applied for my ‘ordinary’ professional job and soon afterwards was moving to Canberra as a graduate public servant. I was anxious about starting a new job I didn’t know how to do in a city where I did not know one person, but the change from impoverished public housing tenant to well-paid public servant was so dramatically positive it eclipsed the anxiety. I soon realised that I was a natural public servant. I loved all the hierarchy and order. I loved that I was part of something bigger – the Australian Government – and I loved that people in shops called me ‘ma’am’ and tried to sell me things rather than look down their noses at me.

The whole time I have worked as a public servant I have had a second ‘career’ gong on: that of an Autism advocate. I wrote my first book in 2005 and had a few interviews in the media and got asked to speak at a couple of things. It wasn’t a lot of work. I probably gave two lectures a year. This all changed in late 2013 when I gave a presentation on Autism and resilience for TEDx Canberra and had my manuscript of a book on employment for teens on the spectrum accepted for publication. I think what happened may not quite have been a meteoric rise to fame but I did start to find that people at conferences knew who I was and I occasionally got waylaid on the bus by people in the Autism world. The main thing that changed was my workload, and yes, as the title of this post suggests, I work around 80 hours each week, including Autism advocacy and paid work.  I don;t mind a bit.  Things have come full circle and I”m like my younger self wanting to please my dad and earn extra pocket money. I pride myself in my work. I don’t think of most of it at work anyway, more as interesting and diverting activities which I sometimes get paid for. Once again I am a confident and accomplished employee. Since joining the public service I have always said I feel like I died and went to work heaven, and I think I must be in advocate heaven too.

Work is an excellent thing. Humans are programmed to work. Being unemployed can be soul destroying. If you can work – even if it is volunteer work or just a couple of hours a week – do it. You don;t know where it will lead you.

Here is a link to my book ‘The Wonderful World of Work: A Workbook for Asperteens’  (activity book about work to start preparing teens on the spectrum to join the workforce. It;s good, I promise): http://www.jkp.com/uk/the-wonderful-world-of-work.html

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Me, talking about work