Autism Awareness Q&A Session
To help promote Autism awareness in April, we were lucky enough to welcome Fiona Davies, CEO of the Australian Medical Association NSW and her daughter Matilda, to our office to learn more about everyday life with Autism and to help break down some misconceptions.
Our General Manager Tracey Duff, hosted a Q&A session and our team was lucky enough to be present so that we could ask Fiona and Matilda some questions.
Tracey: First of all, thank you so much for joining us today Fiona. Could you please introduce yourself?
Fiona: I'm Fiona Davies, CEO of the Australian Medical Association NSW, proud mum and step mum to Tom, Lily, Henry and Matilda, wife to Brian, Neurosurgeon - which means I never, ever have the worst day in our family.
Tracey: Why is Autism Awareness Month so close to your heart?
Fiona: Our SuperGirl Matilda has autism. The rate of autism in Australia is around 1 in 150 people. Autism is generally considered less common in girls, however, there are varying views on this. Despite how prevalent Autism is in Australia, it is still an incredibly misunderstood condition, particularly because it represents so differently in different people. Intellectual disabilities are also difficult because people with autism don’t look different necessarily but can behave very differently. Many of Matilda’s friends rarely go out or socialise so you tend to either see high-functioning autism or nothing. Matilda is incredibly social, she loves restaurants, movies and hotels so we want the world to be a place where she is welcome and accepted.
Tracey: How do you describe autism?
Fiona: There is a wonderful book called the 'Reason I Jump' written by a 13-year-old boy, Naomi Higashida, who is non-verbal and autistic.
In the introduction to the book we are asked to imagine our life without the capacity to speak and where the “editor in residence” of our thoughts walks out without notice. They go on to describe a room where twenty radios all tuned to different stations are blaring out voices and music. The radios have no off switches or doors or windows and relief will come only when you are too exhausted to stay awake.
Autism is a spectrum so I would probably say where you are on the spectrum very much depends on how you are able to manage the radios and on finding language, however, I have found this description useful.
In more simple practical terms in terms of our life, Matilda is a 13-year-old who functions similar to a 5-year-old in terms of independence and actions. However, that’s getting better every day.
Tracey: What do you wish people knew/understood about autism?
Fiona: So many things. Firstly, that it’s real - particularly for older people, they say “I don’t remember children with autism when I was growing up - where did this come from". The reason autism was not visible is that as recently as 20 or 30 years ago, Matilda would have probably been taken to live in a special needs home. She would not have been out and about. Higher-functioning people with autism were simply just seen as a bit odd.
The second thing is tolerance. We are so used to “That Girl” moments in our family - as in what is wrong with that girl. It’s whispered, it’s yelled - it’s always hurtful. I would love for the world to tolerate the differences in all of us.
Finally, for all the joy, we carry with us the never list - it’s the list of things we know she will never do. We work every day to move things from never to maybe and maybe to yes but the never list is always there.
Tracey: What’s the biggest lesson Matilda has taught you?
Fiona: That you can never know what is happening in other people’s lives and you should never assume.
That you should celebrate what is possible. We were told Matilda would not talk - the fact that she has language is the greatest gift and one we celebrate.
That every day can be made better when you put sparkly things and ribbons in your hair, put your Pandora bracelet on, and blast your favourite music. We start every day listening to Unstoppable and that’s pretty much what she is.