It was not until Caroline Andrew was 11 years old, after experiencing almost all of her primary school education without adequate supports, that she officially learnt she was autistic.
Now 22, Caroline said without a formal diagnosis, and therefore no accommodations in place, she found concentrating in class difficult and she experienced a hard time socially.
"I hadn't been having a great time in terms of other people not being very nice to me," Caroline said.
Following bullying and insufficient educational support, Caroline's mother Kate Andrew took her daughter out of school to study at home.
"We were like; just do home-schooling and then find another school for high school," Caroline said.
Kate said the classroom support offered to Caroline did not meet her needs.
"She was receiving a very small amount of time from an education assistant because she didn't actually have an autism diagnosis," Kate said.
"It probably amounted to about an hour per week."
Once Kate started home-schooling Caroline she noticed her daughter was having trouble paying attention to her schoolwork.
After three days of one-on-one teaching, Kate decided to seek a formal diagnosis for Caroline, which she found to be an arduous process.
"It took most of the year to actually be diagnosed. I think we had 12 interviews with a psychologist," Kate said.
"Plus you have to see a speech pathologist.
"There really wasn't much education around autism at the time, the thinking was that it was much rarer in girls than for boys."
First guidelines for practitioners
Australia's first national guidelines have been released to outline how to best provide clinical support to children and their families diagnosed with Autism Spectrum Disorder (ASD).
Launched yesterday by the federal government, the Supporting Autistic Children Guideline outlines the best ways to assist the "learning, participation, and wellbeing" of autistic children up to the age of 12.
One of the guidelines' co-authors is Andrew Whitehouse.
The professor of Autism Research at the Telethon Kids Institute says it has been difficult for parents to know how to best assist their autistic — or neurodivergent — children.
"I would see family after family with very similar stories [who] just love their child beyond belief," he told ABC Radio Perth's Nadia Mitsopoulos.
"At the same time, their child was developing differently, and they didn't know how to best support them."
Professor Whitehouse said a key aspect of the guidelines was the importance of affirming and embracing the uniqueness of each child and helping remove hurdles for them.
Providing support and accommodations for autistic children is the emphasis, which Professor Whitehouse says is a huge change from 20 years ago.
“We used the word 'cure' very frequently. We don't use it anymore," he said.
"What we're [now] seeking to do is to say that every child that comes into the world is utterly beautiful the way that they are born.
"It is our job to remove barriers in their lives, so they can be who they want to be."
Importance of early support
One barrier to receiving support is educational assistance funding, which is allocated to schools by the commonwealth on a per-student basis.
This financial support can be allocated to running additional training for teachers, or to hiring support staff who can assist students who have specific learning needs.
Children who present as being potentially autistic, but have not been formally diagnosed, do not receive this funding.
Professor Whitehouse has stressed the importance of supporting neurodivergent children as early as possible, even when they have not received a diagnosis.
"When children are found to be developing differently, that's when you provide support needs — not waiting for a diagnosis," he said.
A second obstacle can be parental support, Professor Whitehouse, with some parents reluctant to acknowledge their children's differences.
"We see all different ranges of reactions to children developing differently; people who are really keen to pursue help immediately, others who are more reluctant to pursue that," he said.
"People come to all of this in their own time.
"But what we do know is that the more that we can give prompt access to support, inevitably, the better [the] outcomes for the child."
Diagnosis a relief
Caroline wishes guidelines like these were around when she was in primary school as she might have received more learning support at a younger age.
While she continued to have a difficult time when she returned to school in year seven, having a diagnosis was a weight off her shoulders.
"That made what I was going through make more sense," she said.
"Then I was able to better deal with it."
Caroline had felt different to her peers but her autism diagnosis helped her understand and accept her autistic traits.
"I was able to understand more what was going on, and what I could then try and do to help," she said.
"There was always this underlying question of what is wrong with me?
"And when you have a diagnosis, there's an incredible sense of relief and great understanding."
She has now completed an online TAFE course and is about to start a history degree at university.
