Māori perspectives of Autistic Spectrum Disorder
The purpose of this study was to investigate Māori perspectives of Autistic Spectrum Disorder (ASD). Parents and whanau of 19 Māori children with ASD shared stories of raising their children.
Author(s): Jill Bevan-Brown, Department of Learning and Teaching, Massey University College of Education.
Date Published: December 2004
This research investigated Māori perspectives of Autistic Spectrum Disorder (ASD). After gaining ethical approval for the study, an Advisory Group was consulted about appropriate questions and processes. Prospective participants were identified by paediatricians, Group Special Education (GSE) staff and the researcher's own networks. All those contacted agreed to participate and subsequently face-to-face interviews were conducted with the parents and whānau of 19 Māori children with ASD. People were asked to share their experiences of raising their children, to comment on what had been helpful and unhelpful over the years and to make suggestions for future improvements to services. Participants all lived in the central and lower North Island region. The children involved included five preschoolers, nine primary school children and five who attended secondary school.
The majority of parents became aware that their children had difficulties prior to age two. However actual diagnosis of ASD or ASD tendencies did not come until some time later due to a range of factors including: the difficulty in identifying ASD in young children; a cautious "wait and see" attitude amongst medical personnel; their long waiting lists; disbelief of parents; the existence of other disabilities or medical conditions; initial inaccurate diagnosis; and delays caused by "red tape" and rural location.
Parents' experiences at diagnosis varied from no help and information at all to informative explanations and support. The written information given at diagnosis varied in its usefulness. There was strong support for having a person visit parents, sit down with them to explain what ASD was, what services and entitlements were available and to assist them in obtaining these.
The concept of ASD that was described and discussed by parents was the generally accepted triad of impairments, heavily influenced by the medical model. Knowledge of ASD varied amongst parents, however most had a good understanding and six were considered to be experts. These people had attended conferences, read widely, sought out relevant research and were active members of various parent organisations. The world wide web played a major role in informing parents and was used by 11 out of 17 families.
Parents varied in their desire for cultural input into their child's education and service provision. This ranged from substantial input to nothing at all. Not surprisingly those parents whose children were in total immersion or bilingual education were the staunchest supporters of cultural input. Nonetheless, with the exception of two parents, all wanted the inclusion of some degree of cultural content. Impairments associated with ASD were identified as hindering children's involvement in cultural activities such as kapa haka, learning te reo and staying on the marae. Children were also disadvantaged because of difficulties experienced in culturally valued behaviours and practices such as group activities and whakawhanaungatanga.
Māori-medium education and Māori services were seen to hold both advantages and disadvantages for children with ASD. On one hand, the cultural content, wairua and inclusive, supportive attitude of staff and children in educational facilities and the friendly, approachable style of Māori service providers were seen as beneficial. On the other hand, there was considerable concern about the lack of ASD expertise amongst some Māori staff and service providers. Parents expressed a wish for more culturally appropriate assessment measures and procedures and for more Māori services, service providers and professionals.
Parents from ten families either had been or still were members of parent organisations. Reasons for limited or non-involvement were generally of a practical nature. There was some support for specifically Māori groups which involved whānau, fun and informative activities and operated according to Māori kawa.
Considerable variation existed in the degree to which parents received whānau support. This ranged from 24/7 help to none at all. It was quite typical for support to vary within whānau. Also typical was a general lack of understanding of ASD amongst whānau members. Siblings were reported to be helpful, protective, embarrassed, annoyed and sometimes "left out" as a result of having a brother or sister with ASD.
Parents described a wide range of helpful people and services. At a personal level many medical, educational, special educational and support service staff had provided outstanding support and assistance over the years. Other parents of children with ASD were also praised for their help and knowledge of available resources, services and entitlements. Strategies that had proved particularly helpful were: careful preparation and transition activities; visual strategies; firmness and perseverance; activities involving music and rhythm; computer use; one-on-one assistance; social stories; and explanatory class and school visits. Respite care was also mentioned as a service that was much appreciated.
On the other hand, parents also described a variety of barriers they had encountered. These included: a shortage of information, services, funding and qualified personnel; difficulty accessing services; assessment, organisational, system and procedural hassles; financial strain; personal and family stress; detrimental attitudes of professionals and society in general; and a lack of knowledge of ASD amongst professionals leading to inappropriate, ineffective programmes and provisions and incorrect decisions.
Typical of children with ASD, those in the study had difficulty developing social relationships and learning appropriate social skills. A number of strategies were being used both at school and at home to facilitate social development. Some of these were: the formal teaching of social language and skills; buddy systems; involving other children in therapies; community experiences; providing opportunities for socialization with family and friends through outings, visits and family gatherings; and fostering an interest and involvement in sports, games and other recreational activities. Parents' dreams for their children's future were for them to be happy and to live as independently as possible.
The research revealed a pressing need to:
- increase the number of personnel in existing services and expand provisions for parents, whānau and children with ASD to ensure they have readily available, on-going assessment, information, assistance and support;
- increase ASD-related, financial assistance available to parents;
- reduce the "red tape" involved in accessing relevant services and develop user-friendly, culturally appropriate administrative and funding procedures;
- adopt friendly, personal approaches to service provision which include providing information to parents, assisting them to access resources and entitlements, and supporting them during transition periods such as beginning, changing and leaving school.
- increase teachers' and other professionals' knowledge of ASD and Māoritanga to enable them to provide culturally appropriate, effective programmes and services;
- upskill personnel employed in existing Māori provisions and increase and expand these services;
- increase the bicultural and bilingual expertise of personnel in mainstream services;
- provide more ASD-friendly, safe, assessment and learning environments;
- financially assist parent organisations to enable them to effectively perform their dual function of informing and supporting parents;
- introduce media programmes to facilitate awareness and understanding of ASD and to improve detrimental attitudes amongst the general public;
- provide services and facilities for adults with ASD to enable them to live with dignity and as much independence as possible; and finally;
- listen to and be guided by parents.
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