M�ori families of children with autism spectrum disorder have initiated the production of a video designed to raise awareness of the challenges the disorder presents and help other families to better cope.
About 20,000 free copies of the DVD are being distributed to schools, hospitals, marae, social work and disability organisations throughout New Zealand. It gives viewers a glimpse of what it is like to have ASD and to care for that person.
Associate Professor Jill Bevan-Brown, programme coordinator for Massey's Bachelor of Education (Special Education), says research she conducted with 19 M�ori familes in 2004 identified the need for the resource.
"Having a child with ASD is hard work; the DVD has been produced to help people understand more about it so they can be more supportive of children and parents," says Dr Bevan-Brown (Ng�ti Raukawa, Ng�ti Wehiwehi, Ng�i Te Rangi, Ng�ti Awa ki Waikanae).
She chairs the Promoting Acceptance and Inclusion of ASD Trust, known as Te Hapaitanga o Te Whakaengatanga or PAI4ASD. The trust funded the project with grants from community organisations and the Ministry of Education.
The video was produced in Palmerston North and Dr Bevan-Brown says there was a great deal of collaboration with families in every aspect of the development including an on-line survey to gain parental opinion about the content, to which 137 parents responded.
She analysed their main messages and incorporated them into the script, which was written by two parents of children with ASD.
"The feedback they have had so far has been overwhelmingly positive
Parents have been blown away; the response has been incredible: �That�s our story, someone�s telling it at last'." She says her 2004 research project, which included siblings and wider M�ori wh�nau, showed wh�nau did not understand ASD, or know how to give support. "Families talked about how relatives and friends would ask if their child was better now, like you would about a cold.
"Parents said they were tired of trying to explain the situation. When they did explain, parents would have one of two reactions � 'Oh, but they look so normal', or because they looked 'normal� there would be denial, and non-acceptance that the child had a condition � they were just 'being naughty'."
Children with ASD can be very sensitive, the slightest noise and sometimes flourescent lighting can be painful to them, causing them to hold their hands over their ears and scream, to try to block out the cause of the pain. One parent featured on the video, Bernie Wastney, talks about how she cannot take her son to the hairdresser because he is sensitive to scissors, so she has to cut his hair at night when he is asleep.
The video is in four parts and includes a section in te reo M�ori and another focusing on schoolchildren. Teaching resources and ideas to complement the DVD are presently being written and will be put on the PAI4ASD website next month. Find out more
