Fa'alili Fa'alili is a 10-year-old who was diagnosed with autism when she was 2 years old. She has severe language delay, but enjoys music and reading. Video / Elizabeth Fa'alili
From nearly dying as a tiny premature baby to surviving and thriving with autism.
Fa’alili Fa’alili, 10, was only two years old when she was diagnosed with autism - a neurodevelopmental condition that affects how people communicate, learn, behave and interact with other people.
Known as Lili to her family, the young girl was born extremely premature and developed a disease called necrotising enterocolitis. Ten days after she was born, she underwent emergency surgery that saw 12cm of her bowel removed.
The doctors told her family she may not survive and to say their goodbyes. However, the little girl beat the odds, her mother, Elizabeth Fa’alili, says.
“Fa’alili is a fighter and she pulled through. Our children, including Fa’alili and our 20-year-old son, mean everything to us. Autism isn’t what defines Fa’alili.”
Elizabeth says community support has been vital in her journey. As soon as they shared her daughter’s diagnosis with their family, they committed to learning more about autism.
Elizabeth Fa'alili and her daughter Fa'alili Fa'alili, 10, who was diagnosed with autism when she was a toddler.
Fa’alili faces many challenges, like staying safe on the road and in the water.
She is not aware of the danger and loves to play in the water, her mum explains.
“We always need to have a carer with her, as she cannot be left alone. If she finds a pool or beach, she will walk into it without realising the danger. This is incredibly frightening for us.”
The family also includes her in activities like their fundraising committee and cousins’ Zoom meetings.
“Whenever she has a cousin get-together, we tell her: ‘We’re going to the party’. And she eagerly replies: ‘Yes, let’s go party’.
“It’s heartwarming to see such inclusivity and support from our family and community.”
‘Patience is something you will learn to have’
Elizabeth acknowledged the common misconception that autistic children are misbehaving or have inadequate parenting.
“For some autistic children, certain sounds can be overwhelming and their reaction may be to cover their ears and scream as a form of self-regulation.”
April is Autism Acceptance Month, which is dedicated to the neurodevelopmental condition that roughly affects approximately 93,000 New Zealanders, according to Autism NZ.
The Fa'alili family are proud to support their daughter and sister, Fa'alili "Lili" Fa'alili, 10, who is autistic.
Autism NZ chief executive Dane Dougan says it is time to shine a light on the autistic and wider autism communities.
“It’s important to both celebrate the successes of the community and to recognise the need for increased, practical support and a distinct pathway for autistic people and their whānau.”
This year, the organisation promoted a quiet hour. It encourages all workplaces, organisations, schools and attractions to turn down the lights and the noise.
Dougan believes a lot needs to be done to help the Pasifika autistic community.
“For many communities, including the Pacific community, there is a stigma attached to the idea of autism or a diagnosis.
“A lot of our work is about breaking down that stigma and being part of the neuro-affirming movement.”
Elizabeth says raising Fa’alili has its challenges, but it gives valuable perspectives and encourages their family to develop empathy, resilience and a deeper appreciation for the diversity of human experiences.
“Our entire family - including parents, cousins, aunties, uncles and others - play a role in supporting and caring for Fa’alili. Patience is something you will learn to have.”
Her advice to other families in the autism community is simple: “Remember that you are not alone and that others are willing to help. Keep pushing forward in your pursuit of the assistance that your child is entitled to.
“Don’t give up until you have exhausted all possible avenues and have secured the necessary support.”
William Sangster is one of 12 cadets in the Te Rito journalism programme, which has a focus on training more culturally diverse reporters to ensure newsrooms reflect Aotearoa’s multicultural society. Will has a keen interest in sharing stories about the disabilities community.
