At Provider Choice, we don’t just work in the disability space, we live it. With team members and leaders who have lived experience of disability, our support comes from a place of real understanding, not just theory.
Today, 2nd April is World Autism Awareness Day! We wanted to take this opportunity to share the lived experiences of one of our team members and his daughter.
Luke & Lylah
Luke is Provider Choice’s very own Team Lead of Payment Integrity. Basically, if your invoices are rejected by NDIS, he works hard to find out why and fix it as quickly as possible.
He and his wife have a wonderful 16-year-old daughter, Lylah.
Luke and Lylah both live with autism, but their experiences have been very different, shaped by their upbringing and the age they were diagnosed.
Life with Autism
Navigating an adult diagnosis
Luke had a difficult childhood, which he felt explained many of his autistic traits. After his daughter was diagnosed with autism, it was her who kept telling him “Oh Dad, you’re autistic”. That was the turning point for Luke to explore further.
Luke was diagnosed at 39-years-old. Some of the things that his daughter was learning in her early intervention supports, he was able to apply in his own life.
More than that, Luke explained;
“...a lot of the supports that work well for me are about minimising the impacts of my autism as opposed to therapies that help me navigate the world.”
Luke emphasised how helpful noise-cancelling headphones have been for him as he processes his thoughts, which helps him think more clearly, especially in busy places like the supermarket.
Since moving to remote work, Luke described the difference as night and day;
“In the office so much of my energy and brainpower gets devoted to navigating the social aspects that it makes it harder for me to focus on my work and leaves me extremely drained after the workday… By working at home, I can put this energy into my actual work, and minimise the distractions of bright lighting and excessive noise.”
Part of what Luke loves about his work is how it’s much better suited to his personal strengths: analysing and problem-solving.
The importance of Early Intervention
As a young child, Lylah was mostly non-verbal, and it was her speech pathologist who encouraged Luke and his wife to explore an autism diagnosis. At just three years old, Lylah was officially diagnosed, opening up a world of early intervention supports that have been incredibly beneficial.
In particular, Luke mentioned that Lylah’s autism-specific daycare helped her go from approximately fifty words to becoming an absolute chatterbox, all in the space of just six months!
Luke also mentioned Lylah’s early intervention social group that her psychologist facilitates. In this group, they’ve been able to teach the skills needed to navigate common social situations and appropriate responses so that she’s prepared to navigate everyday social situations.
About 13-years on, Lylah is interested in becoming either an actor or a psychologist. Luke is incredibly proud of her empathy and care for others;
“People with ASD are often thought of as unemotional/distant, but Lylah cares about her friends and family so much...she is empathetic and she wants to help other people like herself.”
Raising Awareness
Communicating with each other
Luke shared that people often misunderstand him;
“It’s hard because so much of human communication is non-verbal, and I've often been thought of as aggressive, or too blunt, or offensive, when my intentions are anything but.”
“There’s a saying: ‘Don’t hear what I didn’t say.’”
He emphasised the importance of people being aware and understanding;
“...we may communicate a bit differently…we often aren’t trying to be difficult or offensive…”
Seeing the Individual
It’s important that we don’t put people in a box and assume that we know and understand them just because they have autism;
“We’re all individuals, like everyone else…”
Luke emphasised that autism is a spectrum, and one person’s experience doesn’t represent how everyone else thinks, feels or responds.
Looking Ahead
Luke shared how encouraging it’s been to see more people talking openly on social media and sharing their experiences;
“I have seen huge improvements in understanding of this over the last 13-years.”
This is helping the wider community become more informed and understanding.
Building on this momentum, Luke hopes to see the education system become more inclusive and supportive for people on the spectrum.
If you need a Plan Manager who understands your needs, chat to one of our Gurus.
Provider Choice shares community stories to inform and inspire. While we highlight real experiences, we’re unable to recommend or endorse specific services or providers mentioned in our articles. The views and advice shared belong to the individuals interviewed.
