It's World Autism month, and the condition is thought to impact one percent of people, but is under-diagnosed in Pacific communities.
Rachel Tuisaula six-year old has autism, which she calls his “special power”.
“I never say “disorder”, I never say “special needs”, because my spiritual belief is that that Silas is wonderfully and fearfully made, he sees the world differently to how we see.
“The word “naughty” is the misconception but I don’t blame people because they’re not educated. So you use your mouthpiece to educate those who don’t have an understanding.”
There is plenty of support out there but the problem is with our people
Tuisaula first started noticing different behaviours from her youngest son at an early age.
“Raising three children, you believe that they start at a cycle where they speak and they start saying ‘Mom’ and ‘Dad’, but with Silas, it was very, very different.
“From then on, we just had to gather the facts and information, because I don’t have a medical degree in that area, so I just used my own mother instinct and thought "OK, jot these things down"."
They were able to get a referral and diagnosis, but says there’s a cultural barrier which stops some parents in taking that step.
“There is plenty of support out there but the problem is with our people. They are whakama. They need to place the pride down, you know and realise there is tons of funding that is out there, through the schools, afterschool care, and times for parents to have a break and hand them over to a caregiver.”
Silas does not speak, so Tuisaula says it’s up to parents to advocate for their children, saying she now has the confidence to educate people about her son’s condition.
“Most of the times when you go to family events our parents or someone would say, “They’re ulavale, they’re naughty”, so now I just say to them “Yeah. He's naughty but there's a reason behind him being naughty”.
She says they’re not like any ordinary family, and have learned to celebrate Silas and the different ways he sees the world, whether it’s his love for playing in water, or his fixation with crackers and his need to eat foods with a dry, crunchy texture.
“If we go to a beautiful setting and then our child refuses to go in, we’re the family who are like “Sorry, cancel the booking”, you know, because our child comes first.”
A community of support
Tuisaula is part of the Pasifika Autism Support Group, where she and her husband have been able to join a community who understand the daily struggles.
“My husband's not one to share, and so us joining these support groups, going into a field of men and they all laugh and they all share their journeys together and that's what we want to see, is to offload and share experiences, you know, no-filtered share on parenting because it will help somebody else as well.”
Silas is now six years old, and Tuisaula speaks about him as a woman of faith.
“Every child out there is a blessing and they're brought to you for a reason. God sees that and so you are the best parent for that child, and so I believe never look at their special power as a burden, it is a blessing.
“So my challenge to the parents in the aigas and the whanaus out there: seek help, break those walls, break the stigma of not asking for help, because it is important.”
Photo source PMN News Caption: Rachel Tuisaula and her children