NDIA Accountability Project

Submission 131 — Name Withheld (131.3 Supplementary to submission 131) — Select Committee on Autism

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SUBMISSION TO SENATE SELECT COMMITTEE ON AUTISM – No. 4

TERMS OF REFERENCE – EMPLOYMENT, EDUCATION, HEALTH & CAUSATION,

GENERAL OBSERVATIONS

INTRODUCTION

WOW! I want to say at the outset before I make my own submission as a person with ASD by how blown away I have been by the submissions already made to this investigation. I have been so touched by the insightful and heartfelt stories of the nine individuals with ASD and of the parents with ASD children. What is lacking in quantity of submissions is well and truly made up for by the quality. I want to hug you all. I promise I will be very quick! You don’t want? OK. [observations made by me on 6 June 2020] TELLING OUR STORIES. I believe this is the secret to greater understanding of autism within the wider Australian community. Autistic people telling their own stories. Being who we are. Authentic, genuine, open and honest. Not ashamed, not afraid, not allowing ourselves to be buried under a blanket of bigotry. Not willing to accept what the neurotypical world tells us, that we are glasses half empty, but rather shouting to the rooftops that we are glasses full to overflowing. No longer willing to be marginalised, bullied and intimidated because of our gentle unassuming natures. Because we are the minority in terms of the statistical normal curve does not mean we are inferior to the majority. What we lack in quantity we well and truly make up for in quality.

ABOUT ME

I am a single, never married, 5th generation Australian woman diagnosed with autism (Aspergers Syndrome) at age 60 in 2008. On what was to become the feast day of Australia’s first Catholic saint, Mary Mackillop, of whom I am a devout follower. Causation appears to be a combination of hereditary and environment. I suspect my father had autism and because of his lack of empathy, I was kept confined in a pram for the first 10 months of my life. Like a Roumanian orphan. While that sounds a terrible thing to do by today’s standards, I can thank him for sending me on a life’s journey of self-discovery and self-knowledge and I thank him for that. Self-knowledge is one of the gifts people with autism seem to gain from their disability. My biggest stumbling block throughout my life has been LACK OF DIRECTION. Because the executive function of my brain does not work properly – the organising, planning and prioritising part – I have not been able to be as successful as I otherwise could have been despite being multi-talented and with a good education. This has led to me living my life in poverty which need not have been the case if I had been given some direction by a mentor and helped to organise myself – essential requirements for all adults with Aspergers Syndrome or High Functioning Autism who are alone in the world. This is my most important recommendation arising from my four submissions to the Senate Select Committee on Autism.

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TERMS OF REFERENCE

ISSUE – EMPLOYMENT

I wish to address serious issues I have personally encountered with my two most recent employers who I believe discriminated against me because of my autism.

  1. Harassment in workplace by other staff and management

  2. Taking the matter to Fair Work too hard to cope with on my own, and even with legal assistance – needs to be a simpler complaints process with teeth, not just another toothless tiger.

  3. Needs to be dealt with by a specialist legal service for people with autism as recommended in my Submission 2 about the judicial system.

My biggest stumbling block in finding and keeping work has been my lack of people skills and my lack of self-assertion. Because I ‘don’t do people’, networking holds no interest or appeal to me. I am on LinkedIn but I find it tedious because it is all about people trying to big note and market themselves. I am not egotistical or narcissistic always trying to succeed. I am on Facebook too, but this is more about learning new information than in relating to people and making friends. The old adage about work is true: It is not what you know but who you know. And because I am not interested in the latter, I miss out on the former. I am no good at interviews because of my Auditory Processing Disorder which means I process auditory information slowly and cannot think quickly on my feet when in a stressful situation. I do not have any references because of my chequered career history and a lot of unemployment. Ignorance of Job Network agencies about autism. A fellow at one in my suburb, just a couple of blocks away, expressed surprise that I was still alive in my 60s because I had autism. I found that offensive. A young female fresh out of university at another one tried to use a stimulus response behaviourist technique on me to ‘make’ me interested in getting a job. Having a degree in psychology myself, I knew what she was doing, treating me like a rat having its behaviour modified by a series of electric shocks, I was dumbstruck. When that did not work, she tried to bully me instead. Unbelievable. In my search for work I have even gone to a sheltered workshop near where I live to ask for a job putting a set number of screws into plastic bags. Working alongside people with intellectual disabilities for a small amount of money.

WHAT HAPPENED IN LAST TWO JOBS

At the age of 66, I managed to get a job permanent part time transcribing tapes of police records of interview. I was a fast and accurate typist and despite my Auditory Processing Disorder I could manage to hear what was being said because I was wearing headphones and

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could focus fully on it. In a way, it was the perfect job for me because I did not have to mix with other people. I just had to sit and listen and type all day. When I had been there two years I had an issue with a workmate sitting beside me who kept talking all the time and distracting me. When I asked her to stop, she took offence and complained about me to the human resources manager in Melbourne. This resulted in a request for a disciplinary phone call which I declined on the basis of my APD in the belief that I would not be able to think quickly enough to be able to defend myself. It then came out that I had autism, and then I was berated for not disclosing this when I had applied for the job. The reason I had not done so was because I thought it would prevent me from getting the job, and the way they carried on about this led me to think I had been right. It was a very toxic work environment and after being physically assaulted when leaving work one evening by a fellow workmate, I left. I went to a rival firm but only lasted a month there because the boss picked up on something ‘strange’ about me and sacked me. She had phoned my former workplace and had been told by a worker she knew there that I did not ‘get on’ with other people. I did not socialise with her, but there were many people who kept to themselves there, if only to keep out of the toxic office politics. The best most satisfying job I have ever had was as a journalist on the Financial Review newspaper when I was in my early 30s. It suited my skill set. A loner, a self-starter, able to work independently, logical, objective, seeker of information, able to think outside the square. The other workplace that suited me was the Australian Broadcasting Corporation (ABC) when it was like a big family and I felt like I belonged. This was back in the 1970s and ‘80s and sadly it is no longer like this now. There were many different types of jobs on offer once inside the organisation that were not advertised outside and this provided an additional level of job security for offbeat characters like me.

ISSUE – EDUCATION

I was fortunate that my mother wanted me to have a good education. She read to me as a child and played me classical music, had me taught ballet and later the piano. She kept my nose to the grindstone when I was at school and then made it possible for me to go to university. Even though I have never really used my degree in my working life, the research and writing skills acquired while getting it have stood me in good stead. It is very important for a child with autism to have their interests fostered and supported. The extra-ordinary pioneer in the acceptance of autistic people Temple Grandin of the USA is a case in point. When her mother sent her to stay on a ranch, she developed an interest in cattle and how to management them better and this led to her having a professorship in this field. I am proud and honoured to say I met her briefly when she was here in Sydney about 10 years ago to speak at a conference at Ryde RSL. Thanks to my mother, I have a love of learning. At times my fast-acting runaway brain takes a lot of wrangling to get to stay in focus, but I am always bursting with ideas. If only the executive function of my brain worked properly and I could harness them to work for me to

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bring me in an income. So I could buy my own house and get out of public housing and escape the brutality and mind-deadening encounters with the uneducated people running it. I feel I am made for better things, that I am capable of making a valuable contribution to Australian society if only I could get the right kind of support. All I need an autism-informed mentor whom I can contact when I need some cognitive direction. Just like a sight-impaired person needs a guide dog to give them physical direction, I need an autism-informed person to give me cognitive direction. This could be done in person, or via an online setup like Telehealth, as long it was face to face and not over the phone.

SUGGESTIONS

  1. Public education program about the nature of autism to dispel the popular misconception that we are dumb animals needing to be told what to do and incapable of living our own independent lives, even without needed support. (I am a testament to that.)

  2. Consult older people diagnosed with autism about how they have experienced it throughout their lives. Someone standing outside looking in cannot possible really know, no matter how much they think they know about it.

  3. Stop only focusing on the support needs of autistic children and their parents. Start paying attention to the support needs of autistic adults.

  4. Focus on the support needs of adults with High Functioning Autism or Aspergers Syndrome which are overlooked because we seem to be managing OK when we are really not.

  5. Recognise our autistic commonality. I see this all the time when I look at the US- based Facebook page High Functioning Autism Awareness & Support. Every post resonates with me in one way or another. Whether it is made by a child, teenager or adult with autism or a parent. We are a cohesive community who freely give each other understanding and support. I doubt if you would find this in any neurotypical setting.

  6. We also have something in common that is causing our autism. I suspect it has something to do with the birth process, a traumatic birth, which is what happened in my case. I believe it can be triggered by birth trauma and this needs to be investigated more fully. A survey of people with autism about the circumstances of their birth needs to be done.

  7. As I write about the position of people with autism in the Australian society I realise how much we have in common with Aboriginal people. Rejected because of our appearance and our different way of thinking and viewing the world.

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  1. People with autism belong to a sub-culture, apart from the mainstream. That is how we are meant to be and that has to be respected without attempts being made to try and ‘fix’ us and make us like people we are not meant to be, neurotypicals.

  2. We have so much to offer Australian society and the rest of the world and could do so if more attention was paid to helping us maximise our potential instead of treating us as if there is something ‘wrong’ with us and trying to ‘fix’ us and make us be who we are not.

OTHER OBSERVATIONS

  1. Assistance dogs – I want my own dog to be allowed to travel on public transport with me, as an assistance dog, and also to be allowed to be with me in certain situations where I am likely to feel anxious. But my understanding is I cannot use my own dog for this purpose, but that I have to have one trained by some organisation. I object to this. Why cannot they be more flexible and responsive to an autistic adults particular needs?

  2. I get the impression that some practitioners see autism as an avenue to be exploited to make money and that this needs to be monitored and legislated against.

TEMPLE GRANDIN Author

The Autistic Brain; Thinking Across the Spectrum; Thinking in Pictures; Different Not Less; Calling All Minds; The Way I see it: a Personal Look at Autism and Asperger’s; Calling all Minds: How to Think and Create Like an Inventor.