I am a New Zealander, born and raised, but I am not of Maori descent. I do not live a life steeped in Maori culture, but I do teach tikanga Maori as part of a law tutorial course, and have done so for about eight years. That teaching experience has at least exposed me to key concepts and the differing perspectives of Maori, through both readings and many group discussions. It is with these limitations and this background that I respectfully write this post. I have done extra research to shore-up my understandings, but I know without having lived as Maori, my understanding of what it is like to live as Maori with autism, is accordingly limited. If you find errors or major oversights in this post, please know that I would like to hear about it and learn from it; this post is an attempt to understand and share, not a settled point of view.
The experience of living with autism is necessarily affected by sociological factors; though the condition is defined as and is itself a medical one, the ways it impacts on one’s life can vary to a certain extent with factors of wealth, gender, culture, religion (etc). I understood this in a rudimentary way early on, but it was Grinker’s book “Unstrange Minds” that opened my eyes to just how much culture can impact on how autism is responded to and viewed. It made me wonder how autism might impact on the indigenous culture of my own country. Over the years I’ve encountered a few readings on the topic, and have decided to attempt to pull together some of those threads in a post.
(There are many factors relevant to Maori being a disadvantaged minority, such as being able to access, understand and trust service providers. These are important considerations, but here I am particularly interested in Maori-culture-specific issues; aspects of Maori culture that may impact on how autism is experienced.)
Maori culture is a very oral culture, where knowledge and identity is traditionally passed down through the spoken (or sung) word. Tracing your whakapapa (ancestry) back to waka and even the Maori gods, is a central part of knowing who you are and where you fit into the world. Autism impacts on communication, particularly face-to-face spoken communication. This means it impacts on identity in a way that is somewhat unique and stronger than how it impacts on pakeha (non-Maori). For example, it is not customary nor expected that a pakeha learn to orally recite their lineage, and their inability to do so does not impact on their identity, in their own eyes or the eyes of others.
Kapa haka (song and dance) is also a vital part of Maori culture. Being able to participate in either song or dance is complicated by autism due to not just the spoken impact of autism, but also the very frequent coordination and movement-control aspects of autism. This is just another way that autistic Maori may find themselves and their families affected in their ability to participate in their own culture.
Similarly, expectations around protocols and in/appropriate behaviours (kawa, tika), are a part of Maori culture as it is in any culture. Considering that the dominant “lived” culture in New Zealand is pakeha culture (our signs, our laws, our language etc), I could imagine that autistic Maori find themselves having to acquaint themselves with two sets of community and customary rules, that must at times conflict with each other. At the very least, there are extra opportunities for inadvertent and unintentional breaching of protocols, due to uncontrolled behaviours or communication misunderstandings.
It is customary to spend time on Marae, including extended overnight stays. The difficulties these changes in routine pose for an autistic individual, along with the ones listed above, affect not just the individual but their entire family. If a family cannot partake in its traditional cultural practices because of an individual who is part of that family, I could imagine that putting extra stress on the family unit itself and the other family members individually. Even the practice of sharing care of children across the wider family group (whanau) is harder when the child is autistic. This is something pakeha families experience too of course, but the extra layer of impact on cultural and group identity, is an important consideration for the lived experience of autism.
There is a point I want to make that comes up in this discussion, but I think has much wider implications too: It is often said that the society needs to adapt to autistics, not autistics to society, that people in society need to change their expectations and understandings of others behaviours and words in order to better accommodate autistics and allow them to part of society. However, when the practices, expectations and rules are deeply rooted in tradition, belief and identity, it becomes far more difficult to simply expect everyone else to change and adapt. If your culture is oral, and expects many personal social interactions, and has many protocols surrounding many aspects of life (as is true of Maori culture), demanding those things change implies a lot more than just asking people to “be more accepting of others.” These traditions and expectations are not simply arbitrary or based on discriminatory ways of treating people (though some – including those within the culture – may think it that way), they are part of an indigenous centuries-old culture.
I can only think that this poses that many more challenges on Maori autistics; both in helping a child to be part of their own culture, and in trying to get those around them to adapt and accept their child’s differences. How much this impacts on daily life, and how it in turn affects Maori attitudes towards autism as a condition in its own right, I can’t confidently speculate, but as usual I suspect that will significantly vary from person to person (and in part, from region to region, since the ways tikanga concepts are interpreted and applied, can and does vary).
I have thought of other ways in which Maori might also be differently affected by autism, in regards to the collective rather than individualistic nature of identity and responsibility in Maoridom; how that might be impacted when one of the individuals is so very different and not always in meaningful control of their words and actions. I openly admit that I do not know enough about how Maori generally view and treat the actions of the disabled, to delve any deeper into that area. (I always wanted to do “psychiatry and the law” as part of my legal studies, and I hope the issues would have been raised there, but it’s a gap in my knowledge that I haven’t had the chance to fill yet.)
I would be very interested in hearing from people who are more in the know. For those who want to read further on these issues, here are some links to information that I found useful in writing this post (unfortunately I cannot speak Maori fluently to enable me to access pieces not written in English):
- New Zealand Autism Spectrum Disorder Guideline) government publication, with a significant section on Maori and autism).
- Maori Perspectives on Autism Spectrum Disorder (study)
- Classroom Culture (definingnz)
- In My Shoes (link to info on the DVD, sorry I don’t have access to the DVD footage itself (though I have watched it myself), it is useful if you can get hold of it).