Dear honoured members
My name is . I am a 32 year old man. From , South Australia. I am
married was diagnosed at 25 with Autism. This has been a challenge for me and my family in my childhood years as we did not I was Autistic. While it has been challenging learning how to live in world not really geared for me and, my Autistic sisters and brothers. I love the completely unique way in which my brain works. Seeing things differently, exprenceing things differently. It is a challenge however to live in a world where I am very aware of, the lights, sounds and smells around me. The feeling of all my clothes on me.
Since being diagnosed Autistic, I have been able to learn exactly what I need to do for my life as an Autistic adult. Understanding that I have limited energy to do my day to day tasks. That people are difficult to be with. As all Autistics either struggle with or do not understand, body language, social cues. The larger the group of people, the more energy I will use to be with people. The difficulties of using up the limited energy for my day means that I, may “steal” energy for the next day to get me through this day. Which sets me up for a meltdown which for me is an, explosive outburst of energy coming from being overwhelmed, frustrated, overstimulated. A feeling of pain inside me. Causing me to blow up. These meltdowns can happen from being overstimulated, tired, sick, using up energy of course and not being understood.
These meltdowns can also be delayed as well, by 3 - 4 days. These same things that cause a meltdown can also cause me to have a shutdown. This is an internal meltdown, a withdrawing from activities, people and events this to can be delayed. Also if I have a big enough meltdown, I will have a shutdown very quickly afterwards. These make living life, working, studying, volunteering ect, extremely difficult. Autistics do what is known as stimming which is a self regulation to sensory inputs, to maintain an “even keel,” stimming is not limited to hand flapping, rocking, listening to music, repeating certain words. But sometimes this fails and we meltdown or shutdown. Add in the lack of understanding and acceptance of Autistics in society plus perpetuating of outdated views on Autism and Autistics, it sometimes down right depressing to live in world not geared for Autistics.
Autism is a life long condition. An Autistic child will grow up to be an Autistic adult. With a lot of supports being stopped once a child gets to a certain age. The use of “functioning labels and levels” is wrong outdated and harmful, theses “functioning labels/levels” are abelist. They are not how Autistics exprience and live with their Autism. These “functioning labels/levels” were created by non-Autistics so they better understood how our Autism effects them. Autism is Autism, regardless if it is Asperger’s Syndrome or “classic Autism.” Autism is a spectrum, just like the spectrum of light. It is a neurology, it is just a neurological difference.
Yes, some Autistics need more support than others, but all Autistics need support regardless of your use of outdated “functioning labels/levels” regardless of their age. Autistics have a much higher level of anxiety than non-Autistics. We have much higher rates of P.T.S.D. than our non-Autistic peers. Also Autistics have a higher level of addiction and a lower life expectancy than our non-Autistics. We are discriminated against far more often, than other minority disability groups. Autistics are one of the most marginalised and minimised disability communities. We the Autistics need access to on going mental health support. We need need access to stim tools to help regulate our sensory needs.
Ear plugs to lessen noise, sunglasses to cope with the bright sun and bright indoor lighting, Autistic chews as away to manage our sensory profile, to cope with our world. Not being told we cannot bring those things to work or school is detrimental to our health.
Far to much money is and has been spent on what “causes” Autism. And not enough money is spent on supports to Autistics through out their lives. It is great that governments and other agencies are focused on helping Autistic children. Autistic adults are over looked, or forgotten by governments and other agencies.
Rates of people born with Autism has not increased. But the rates of adults diagnosed as Autistic has. One group are parents of children recently diagnosed Autistic. These parents being to learn more about Autism and, see these same behaviours in themselves and seek a diagnosis for themselves. Also adults in general are being diagnosed Autistic at increased rates. This is because we have a much better understanding of what Autism is and, we have for better diagnostic tools as well.
Agencies and governments that purport to support Autistics need to have Autistic people on their boards. They also need to listen to the wider Autistic Community (actually Autistic people) about the services and supports Autistics need.
Finally language plays a big part in this discussion. The Autistic Community uses and prefers identity first language eg, Autistic person, eg, I am Autistic. We don’t like nor want to hear person first language eg, person with Autism, eg, I have Autism. We cannot “remove” our Autism. We don’t decide to “leave” our Autism home.
Thank you for your time, commitment and dedication to our country.
God bless.