NDIA Accountability Project

Submission 131 — Name Withheld — Select Committee on Autism

‹ PrevPage 1 of 5 · Source p. 1Next ›

SUBMISSION TO SELECT COMMITTEE ON AUTISM [ [ 1

MY PUBLIC SUBMISSION TO THE AUSTRALIAN PARLIAMENT SELECT

COMMITTEE ON AUTISM

MY EXPERIENCE OF WHAT IT IS LIKE TO HAVE AUTISM

ABOUT ME

Iam a 72 year old single never married 5“ generation Australian woman diagnosed with high functioning autism (Aspergers Syndrome) in August 2008 at age 60.

I have a Bachelor of Arts from the University of Sydney in English Literature & Language, Psychology, Archaeology, Fine Arts and a prior subject from the University of NSW, History & Philosophy of Science. I also have a Teachers Certificate from NSW Department of Education and a Graduate Certificate in Journalism from UTS. My most recent educational award was Certificate in Genealogical Research from the Society of Australian Genealogists.

I am in the process of writing two books about my own life with autism plus three others about my family history. I need assistance with this in order to be able to complete them.

My autism appears to have been caused by a combination of hereditary and environment. My father had stunted emotional development characteristic of autism and because of this I was kept in a pram for the first 10 months of my life subjected to sensory deprivation (no cuddles) and not being fed on demand. My father had a grocery shop where he treated my mother as his assistant under his control, and I was kept in the pram there all day and not fed until after he was, even though I was crying from hunger, when they went home.

BEFORE MY DIAGNOSIS

I had been seeing psychologists and a couple of psychiatrists since I was a 20-year-old university student trying to find out what was ‘wrong’ with me. Why I found it so hard to make friends, and to find a suitable boyfriend who shared the same interests as me. And why I felt uncomfortable with groups of people and could not fit in. Also why my peers kept rejecting me. And why I was so frightened to assert myself and reach out to others.

During my first year at university, I used to sit by myself and cry because of this. I felt so lonely and left out. University is a difficult place to meet people and form friendships anyway because it is such a transient social environment. Students are not all studying the same subjects and being in the same places like they were at teachers college where I had been the year before. I had found it difficult socially there too but at least I had a couple of females to have lunch with.

SUBMISSION TO SELECT COMMITTEE ON AUTISM 2

AFTER MY DIAGNOSIS

Once I had a diagnosis, more than 40 years later, I finally understood. Autism was about being alone, a loner, and I was at last able to accept that I was actually OK. I was simply being who I was meant to be.

HOW I EXPERIENCE MY AUTISM NOW

  1. Disorganisation. I am disorganised around the house and as a result my place is constantly messy. Because of my inability to stand on my own two feet financially, I have lived in public housing for 18 years and have been persecuted and punished for this untidiness and disorganisation by public housing authorities. In other words, for my disability. Bullied, intimidated, stood over and traumatised by them on a regular basis.

I have a lot of stuff because I am more interested in things than people and I have a lot of interests involving books and other equipment. I am not a hoarder, but have been wrongly depicted by public housing authorities as such.

My understanding is that I am disorganised because the executive function of my brain – the organising planning and prioritising part - does not work properly. So there is nothing I can do about it.

  1. Slow cognitive processing. I process incoming verbal information slowly and am not able to think quickly on my feet. When I was a journalist, I used to work out all my questions in advance prior to conduction an interview and try and anticipate the responses and work out more questions based on these. I need time to think about what is said to me, and to be able to ask for ‘time out’ if I need more time. Sometimes it takes me until the next day to have completed this processing.

  2. Auditory processing disorder. This I believe is related to the above and is particularly relevant when I am trying to conduct a conversation on the phone. I recently have had to do that with two matters I brought before the NSW Civil and Administrative Tribunal and could not cope with the second one in particular because of my cognitive impairment. I was totally out of my depth because I could not process what was being said, let alone be able to respond to it. As a result the decision went against me.

SUBMISSION TO SELECT COMMITTEE ON AUTISM 3

I even have problems with communicating on Zoom where I have visual as well as auditory cues. In group discussions I find it hard to know when to ‘come in’ and in the end get frustrated and angry and demand to be given attention and heard. This does not go down well, even though I have already told the group I have autism. But nobody understands what autism is so there really is no point in me doing that.

  1. Fear and anxiety around strangers and not knowing what to say to them. Reticent, retiring nature. I hate parties and never go to them. I am happiest when I am alone at home engaging in activities that are either cerebral (family history research, writing my books, journalism) or artistic (watercolour painting, sewing) or outdoors (gardening, walking, driving my car, bicycling). I never think of asking someone I vaguely know if they would like to go for a cup of coffee. It is not something that really interests me. I find it hard to discover and reach out to people with my interests like fellow writers. But I have just found a local writers group and hope that I fit into that.

  2. Being ‘spaced out’, ‘spun out’, dissociated. I understand this is caused by strong feelings of fear and anxiety.

  3. Going around in circles and not finishing anything. Very frustrating. I need an autism-informed mentor to help by giving me a sense of direction and assistance with planning where I want to go.

  4. Experiencing ‘sensory overload’. After the court hearing last week conducted over the phone, despite me having Auditory Processing Disorder and having informed them about it, I had to go for a walk for two hours before I managed to calm myself down. I normally do this by going for a long drive in my car, but my car was out of action at that time, and was the subject of the hearing.

  5. Experiencing ‘meltdowns’. I do not do this anymore. Not since my diagnosis enabled me to understand what these anger outbursts were about. I can now recognise a potential situation where one of these might occur and avoid it. The ‘short fuse’ situation is often caused by frustration about not being able to communicate properly with another person. Looking back, before my diagnosis, they often used to take place when I was on the phone. Now perfectly understandable now I know about Auditory Processing Disorder and that I have it.

SUBMISSION TO SELECT COMMITTEE ON AUTISM 4

  1. Aloneness but not loneliness. I am very aware that I am alone in the world with only one true friend. I have no close ‘safe’ family.

Surgeons will not perform operations unless I have someone to take me home after the anaesthetic and I have found this to be a problem for me in the past. This happened when I had cataract surgery about 10 years ago, when I was clutching at straws trying to find someone to do this for me. A virtual stranger. After my first cancer surgery in 2008, I took myself home in a taxi because it was not straight after surgery, but after 10 days of hospitalisation. This was followed by three subsequent cancer surgeries. After the first one, a woman I knew from St Vincent de Paul brought me home from Randwick to Brookvale on the other side of Sydney Harbour Bridge. My best friend brought me home from Hornsby after the other two.

  1. I have had no ongoing autism-informed support which I need to help me get my life in order and to feel a sense of fulfillment of my potential. I had no ongoing support at all until the middle of last year when I was finally allocated an in-home carer for four hours a week. I still only have one for two hours a week, but she has been beneficial in helping me to get organised around the house. And indirectly to start eating better and therefore better manage my diabetes 2. However, she is not autism-informed and so there are personality clashes and breakdowns in communication because she does not understand the autistic personality characteristics. I need an autism-informed carer.

  2. Being deprived of NDIS funding. I need an autism-informed mentor and a writing coach to help me finish my books but cannot get funding for this because Tony Abbott made the cut-off eligibility age 65. I believe when the scheme to enhance the lives of people with disabilities was introduced by Julia Gillard, it was left open-ended in terms of age. My Aged Care through which I get funding for my current non-autism informed carer has no specific services for old people with autism.

  3. Being constantly patronised and put down by ignorant people in authority and having my self-determination taken away from me. This is the worst aspect of having autism as far as I am concerned.

SUBMISSION TO SELECT COMMITTEE ON AUTISM 5

  1. Being stereotyped as an adult as if I am an autistic child throwing a tantrum at a supermarket checkout. As above. Because all the emphasis is placed on children with autism, there is no understanding or acknowledgement that adults have it too, let alone older adults like me. I suspect not many people of my generation have been diagnosed so in terms of numbers, we do not exist.

  2. Being stereotyped as childlike and unintelligent by people in authority. The way these people talk down to me is so offensive.

These are the only points I can think of at the present time. If I come up with any more, I will make another submission on this subject. I intend making further submissions to the Select Committee on Autism about other subjects in the near future before the cut off date.

Below is a recent post I made on my Facebook page which is relevant to this submission.

Facebook post 11 June 2020 The two autistic teenagers who went missing over the last couple of days show how broad the autistic spectrum is. The boy in Victoria was as his mother said low functioning and totally dependent on being cared for by others. The one in NSW was capable of getting a lift into the city [Pymble] with a stranger then making his own way to school [Blue Mountains]. Then there is me who often feels lost in a different way who has post-graduate university credentials and has worked as a journalist on a major newspaper. Yet I am autistic too at the high functioning end of the spectrum. It is not surprising non autistic people do not understand what autism is. We are trying hard to explain it but it is not easy to get through to people who are prejudiced against us. PS Like the second autistic boy, I am like a homing pigeon with an excellent sense of direction.