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Autism advocate says not enough awareness amongst Pacific

19 July 2017

Posted in: Pacific Radio News,

A Pacific autism advocate says there's not enough awareness amongst Pacific people. 

Betty Pulefolau is one of the founders of the Pacific Autism Support Group (PASG).

She says she's met many parents dealing with autism, who aren't well-informed and are unaware of the support they have available to them.

"Lack of information and sometimes the information needs to be translated into our Pasifika languages," she says. "Understanding exactly what autism is because there's no translation for the word in our Pacific languages."

Betty Pulefolau says there's not enough autism awareness in the Pacific community. Photo/ PRN.

She says Pacific elders in particular, are not aware of the condition.

Pulefolau and her husband have a 13-year-old son who is on the spectrum of autism and was diagnosed when he was three. 

They began PASG in 2010 to unite Pacific families dealing with autism.

"We went to meetings and we looked around and there were no other Pasifika families and we thought, 'Our child can't be the only Pasifika child with autism,'" she says. 

As well as not accessing the support available, Pulefolau says many of the Pacific parents she's met, don't want to share the care-giving responsibility. 

"The belief is that the child is the parent's responsibility so they shouldn't be getting support from outside," she says. "They try to do it all themselves but you need that support. You don't have to walk this journey by yourself."

Pulefolau and her husband both have full-time jobs and run PASG voluntarily. 

"It's a place for them to come and find support and to show them what service providers are out there," she says. "It's hard work but we do it because we love our children."

Betty, her husband Brian, and their 3 sons. Photo/ Supplied- Pasifika Autism Support Group. 

The Samoan mother-of-three says public health providers need to find a better way to engage with Pacific families, as their current approach is not effective.

"There's a lot of information out there but our families want that face-to-face contact," she says. "Once they're diagnosed we need information straight away. There needs to be a follow-up."

Pulefolau is urging the rest of the Pacific community to embrace those with autism.

"Every child with autism is different, none of them are the same," she says. "Don't be judgemental. If they're not talking, you need to find another way to communicate with them.

"Make sure they're included and accept them," she says.

Pulefolau will be attending the Altogether Autism Conference held in Auckland from July 19 to 20. 

Tags: autism, Altogether Autism, Betty Pulefolau, Pacific Autism Support Group,