A call to action for Victorians affected by Autism – make your voice heard!


Inquiry into services for people with autism spectrum disorder deadline extended

In an exciting move forward for the Autism community, there is a Parliamentary Inquiry into services for people with ASD. This is a fantastic time to take our stories to the government and make our voices heard. The deadline to make submissions has been extended to June 30, 2016. I encourage all citizens of Victoria who are affected by Autism to make a submission if you feel you have something to contribute on any of the following topics covered by the inquiry:

  1. The prevalence of autism spectrum disorder in Victoria;
  2. The availability and adequacy of services provided by the Commonwealth, State and local governments across health, education, disability, housing, sport and employment services;
  3. The adequacy of services to be provided under the National Disability Insurance Scheme (NDIS);
  4. Evidence of the social and economic cost of failing to provide adequate services; and,
  5. The projected demand for services in Victoria.

The Family and Community Development Committee, who is tasked with the inquiry, is requesting submissions from not only organisations but also individuals.

Here’s how to find out more about making a submission. Your submission can take any form you like, it can be a letter or an email, as long as it addresses at least one of the Terms of Reference listed above. I realise it states on most documentation that the deadline is April, however you can see on this page that the deadline has been extended to June 30.

Now is the time to make our voices heard!

In related news, Amaze Victoria released its submission today. The submission was the result of a consulting with members of the Victorian Autism community and contains a comprehensive list detailing a need to improve existing services and create many new services that are severely lacking, including support for – wait for it – teenagers and adults who are diagnosed later in life! This is really exciting for me, as most of the current support services and funding are for children on the spectrum. While this is fantastic for today’s children and their parents, older individuals on the spectrum are often neglected when it comes to accessing support services and funding.

The submission covers areas like diagnosis, education, employment and the NDIS.

Here is a link to the full submission.



That moment when you start sobbing like a baby for over 20 minutes after reading an email that your accountant has left and your file is being transferred to a new, unfamiliar accountant #justautismthings #Icantotallydealwithchange

What my diagnosis meant to me

What my diagnosis meant to me

My entire life I knew I was different. When I was little I used to dream about aliens arriving in a spaceship and taking me away to my real home world. I felt that when that happened, I would finally understand why I felt so different to others and so alien in my own body. I used to write poetry about my inner torment and my struggles to understand why it seemed so easy for people to just go about their lives; interact and play and work while for me it was a daily struggle. I would watch my friends play with each other and talk to each other like it was the most natural thing in the world. When I would try join in, I felt my own motions were stiff and pronounced, like I was a bad actor. I would watch the other girls and how they spoke to each other and joked around and had inside jokes that I never understood and when I tried to join in, they looked at each other and smirked. I never understood why. I assumed that they knew I was trying too hard to fit in and they must have found it amusing. The girls would play cruel games when were in a group. Everything would be normal one moment and suddenly one of them would yell “Now!!” and they would all run away from me, leaving me standing there stunned and alone and totally confused as to what I had done or said to provoke that reaction.

High school was much, much worse. The social interactions were more complex and my confusion increased. The bullying was almost constant from year 8 until the year when most of the bullies graduated, and was not only verbal and mental but physical as well. If I feel up to it one day I might post more high school but they are not memories I like to revisit.

Struggling so much to make and maintain friendships, misunderstanding simple social cues and having to watch and learn and emulate behaviours is exhausting and depressing. At age 14 I was diagnosed with Depression. Over the years I saw multiple psychologists, psychiatrists and doctors. I talked about everything that I struggled with – friendships, school, home life, my relationship with my family members. The word Depression kept coming up, over and over. I was taught different ways of dealing with it. I was prescribed medications. I think I’ve tried every single anti-depressant in existence. I still dragged myself through life, struggling at every turn.

I made terrible life decisions. After school I turned to drug use. For a time I didn’t care about how empty I felt, for the first time in my life I actually felt free – but only while I was using drugs. Afterward I felt even worse. After some terrible experiences I stopped using drugs and focused on my career.

My working life was simple for a time. I showed up, worked hard and went home. I was young – had just turned 20 – and had the energy to burn. Over time, that energy diminished. I was successful at work – promotions were regular and my bosses were impressed with my work ethic, but personally I was fading. My stamina drained and even showing up at work every day felt impossible. Personal relationships suffered. Everything became difficult again. I couldn’t remain in a job or a relationship for longer than a year. Looking back I think it was because with every new job, every new relationship, I became a new person. I remember explaining it to my sister like I was wearing masks, a new mask for every role I had in life. I would pretend to be the person I thought was wanted in that situation – the ideal worker, the perfect girlfriend – but I couldn’t maintain those roles as they were not the authentic me. I didn’t even know who the authentic me was, it’s like the real me was locked in a safe that I didn’t have the the combination to.

One day, after over ten years of faking being a responsible adult, my body stopped. I could barely get out of bed, I was sleeping whenever I wasn’t working, my health was failing. I went to the doctor and was tested for everything – iron deficiency, sleep apnea, AIDS, diabetes. Eventually my body just stopped. I was diagnosed with Chronic Fatigue Syndrome and was forced to quit my job. For about a week I just slept, non stop. I was still constantly tired no matter how much I slept. After that first week I could get up in the morning, have breakfast, sometimes shower, and then had to go back to bed for the rest of the day. It was like this for over a year before I saw signs of improvement. Then my mother was diagnosed with cancer, and I deteriorated.

As part of my Chronic Fatigue treatment, I was advised to see a Psychologist or a Psychiatrist to talk about my personal issues. I saw both. After one hour long session, my Psychiatrist diagnosed me with Borderline Personality Disorder or related Personality Disorder. Apparently this was good news? I was encouraged to learn about this new diagnosis. I did some research online and learned some things that did not make sense.

For those of you not familiar with BPD: https://www.sane.org/mental-health-and-illness/facts-and-guides/borderline-personality-disorder

Apparently this could be cured. With treatment and counselling, Personality Disorders were not lifelong. This did not sit well with me. Not because I didn’t want to be cured – I knew my problem was not curable. This was who I was, not who I became. I was born like this and can remember being different from a very young age, my problem was not a result of trauma or abuse in my formative years, my trauma and abuse in my formative years was BECAUSE I was different.

My sister recommended a Psychologist that worked in the same building as her son’s Occupational Therapist. Jacquie was warm and caring and understanding and I felt better after each session. She understood me on a level that no health professionals had before and I finally felt more positive and again, I started to improve. Then my mother died.


-Game error: life.exe has stopped working-

Fast forward 6 months. I moved in with my sister because I am unable to look after myself while coping with the loss of my mother. I didn’t know it at the time but Mum was my Special Person (more on that in another post to come) and losing her felt like I lost a part of myself that I could never get back. After an incredibly challenging time and a trip to the hospital it was decided that I needed full time support and my sister wanted me to stay with her. I feel terrible about this time, I was not a nice person to live with. I was harming myself constantly, I was emotional, moody – my poor sister was not only dealing with her own two kids, one diagnosed ASD and one undiagnosed at that time – and me as well. I don’t know how she did it sometimes.

One night we watched a film called Temple Grandin, about the scientist and autism advocate’s life. In the film, the actress Claire Danes (playing Temple Grandin) explains that she “sees in pictures” and examples would pop up on the screen of her thoughts assembled in a series of pictures. I was intrigued. “Isn’t… isn’t that how everyone thinks?” I asked my sister. She told me according to to Dr Grandin (who has studied this for most of her life) most people think in verbal logic, math or music or visual terms and rattled off a few examples of different types of thought. I explained to her that I saw in my head exactly what Temple Grandin saw – pictures. I gave her some examples of my types of thinking and one of them was how I think when I play pool. When I am lining up a shot, I can actually see lines in my head of the direction the balls will travel based on the angle of my cue. After living with me for some weeks and based on this new information, my sister recognised similarities in my behaviour to her own Autistic son, and suggested I take an online test for Autism just out of interest.

If you scored…
34 & up: Autism likely
30 – 33: Possible autism
0 – 29 : No autism

I scored 42. Encouraged by this possible answer to my lifelong question of Who the Hell am I and Why am I so Different? my sister called my psychologist Jacquie who happened to specialise in Autism. Jacquie’s response was enthusiastic and reassuring: after my earlier ten weeks of counselling sessions with her, she had picked up on many signs that I was possibly on the Spectrum, but as I had just been diagnosed with BPD by a Psychiatrist, she hadn’t wanted to tread on the toes of that diagnosis. I was booked in to see Jacquie for a formal assessment, and after my interview and the information gathered from my ten weekly sessions, I got the diagnosis that changed my life:

“… it is my opinion that Catherine meets the DSM-5 diagnostic criteria for Autism Spectrum Disorder without intellectual impairment or any history of speech and language delay.” – Taken from my diagnosis.

Also from my assessment:

Catherine’s scores are listed below:

A. Qualitative Abnormalities in Reciprocal Social Interaction, (19, cutoff 10)

B. Qualitative Abnormalities in Communication (14, cutoff 8), and

C. Restricted, Repetitive, and Stereotyped Patterns of Behaviour (10, cutoff 3)


**Achievement Unlocked: Learn Who You Are**

I felt like my safe had finally been opened and I had been introduced to the real me. I finally had the answers to all the questions I had been asking myself my entire life: Why am I different? Why can’t I fit in? Why do I struggle? Why do I hurt myself when I’m frustrated or upset? And about a million others.

I felt like my Depression dissipated overnight. It hasn’t – but I feel like a lot of my Depression can be attributed to the simple fact that I didn’t know who I was or why I felt so different. My anxiety was explained, my social issues were explained, my issues with responsibility and dealing with change was explained – so many answers! I spent the majority of my time talking about Autism with my family and learning about it on the Internet. The answers were coming in fast and even techniques and strategies on how to deal with my emotional outbursts were explained. The next time I was overwhelmed or upset my sister dealt with me exactly how she would deal with her Autistic son, she put a weighted blanket over me, closed my bedroom blinds and door and left me to calm down in the quiet and dark and suddenly, episodes that normally would have lasted hours turned into a much less stressful 15-20 minutes. I suddenly had coping strategies for life, and I was filled with optimism for what felt like the first time ever.

I am still learning new things about myself every day. Prior to my diagnosis, the many facets of my behaviour confused me and I was always depressed about the fact I seemed so intelligent but so bad at life. Now, I am excited that I can finally explain things. I wear my diagnosis like a badge of honour – I am different and I am proud of who I am. I can be weird and crazy and lack the life skills that people around me possess but IT’S OKAY! I am Autistic and there is no need to worry or stress about the way I am.

For parents of Autistic children who are unsure whether to be public about their childs’ ASD, I strongly STRONGLY encourage you to be open about it because it is who they are. They are special and unique and they will benefit so much from understanding why they are different. I encourage as much as possible to talk about Autism in an open and loving environment, don’t let your child feel like they have something to hide. The people around you will benefit too, they will understand if your child says or does something different or unusual, and hopefully instead of judge or criticize they will try to understand and acknowledge that your child cannot help but be the person they were born to be.