Cultural safety and neurodevelopmental diagnosis for Indigenous children
Introduction
Which tribe do I belong to? This is the question underlying our sense of identity, of how we see ourselves and how we show up for others. As Dr Clarissa Pinkola Estés says, “When an individual’s particular kind of soulfulness, which is both an instinctual and a spiritual identity, is surrounded by a psychic acknowledgement and acceptance, that person feels life and power as never before. Ascertaining one’s own psychic family brings a person vitality and belongingness.” 1. Self-identity sets the foundation for everything else that we become in life. The reality for Indigenous children often is that they walk in a space between cultures and tribes and encounter many obstacles to accessing the best of either world!
A significant gap in outcomes exists between Indigenous peoples of Australia and the rest of the Australian population, across multiple dimensions of health, including early childhood development2,3. Child development refers to gaining skills and reaching ‘milestones’ in how they move, speak, play and behave, which each child achieves in their own time, but in a similar sequence and at roughly the same age as their peers4. A significant delay or difference in this process can have lifelong implications for the individual2. Equity in social participation and self-development is founded on cultural safety and equal opportunity to access things such as health care, early intervention, education, and employment. The significance of neurodevelopmental assessments and diagnosis of Indigenous children is being discussed in this larger context.
Shifting the negative narrative
The dispossession and disenfranchisement, breakdown of cultural and family ties and relationship to country, experienced by Indigenous Australians because of colonisation is well documented2,3,5. As is the intergenerational impact through epigenetic changes (i.e., activation or deactivation of gene expression influenced by environment)6,7,8,9, and the persistent institutionalised and systemic racism and discrimination. There is an evident gap in health across the physical, social, emotional, and psychological domains, and the consequent increased prevalence of Adverse Childhood Experiences (ACEs) for Indigenous children2,3,5,10.
Less recognised and promoted is the complex and dynamic kinship relationships that still exists in Indigenous communities, the strengths of traditional Indigenous cultures in family functioning and child rearing, as this may seem incompatible with conventional (non-Indigenous) practices. There is a collective community focus on raising children, valuing of interdependence, group cohesion and community loyalty and the children’s need for freedom and autonomy to explore and experience the world in order to develop the skills, respect for Elders and their wisdom, and Spirituality that gives them a greater sense of identity and connection to others3,11. A recent article on ABC News reported “ground breaking research” which found promoting and teaching Indigenous cultural practices to students and their families helped improve attendance, engagement, and educational achievement, and also plan for the future; “they got their journey, they know what path they want to take…”12. This shows how the narrative around Indigenous vulnerability and disadvantage shifts by creating cultural safety.
Preventing the vicious cycle
Indigenous children experience higher rates of ‘developmental vulnerability’ (i.e., higher prevalence of clinical, behavioural, and emotional disorders and lower performance in literacy and numeracy)3. They are also face additional challenges to getting an appropriate neurodevelopmental diagnosis. Sometimes, this is ironically due to a misplaced ‘cultural sensitivity’ assigning all neurodevelopmental differences to the ACEs and intergenerational trauma. Some well-meaning clinicians refrain from “labelling” a child with such a “negative” or “limiting” diagnosis for fear of the stigma that may contribute to further discrimination. For some Indigenous families, acknowledging delays can appear as subjugating further to a colonial perspective5. Or it may be perceived as “shame”, associated with mental health and neurodevelopmental diagnosis, which are too often linked to ‘inadequate’ parenting or neglect, and consequent removal of children3,5.
These narratives feed into each other, perpetuating and worsening the inequity by blocking access to the support that is currently only available to those with a formal diagnosis. The support necessary to mitigate the additional challenges that children and young people with neurodevelopmental differences face, including the long-term physical and mental health implications2,7,9. A diagnosis and appropriate intervention can break the cycle of inequity by supporting the child, their family, and their community to make positive changes, leading to a virtuous cycle promoting health and wellbeing2,3,11.
Promoting a virtuous cycle
How do we, in a culturally safe way, address this gap in diagnosing neurodevelopmental differences? Clinical decision making must incorporate multiple truths or perspective, including the science (i.e., evidence based or informed) and the art (i.e., contextual, and relational) of medicine. When working with Indigenous cultural groups it is imperative to consider their worldview, e.g., the “we” culture which prioritises the interconnectedness of the community and spirit in Indigenous peoples’ understanding of health and wellbeing3,11 and how it effects parenting and child-rearing practices3,5,11. It is also our responsibility to be aware of our own worldviews and prejudices (positive or negative) that undoubtedly influence our decision making.
It requires a collaborative approach, engaging in respectful dialogue to co-create the journey with the patient and family as active participants, making informed decisions about their own health. This is an essential part of the overall diagnostic journey. This approach ensures that any diagnoses arrived at can be reframed appropriately to become not a potential for discrimination and inequity but a steppingstone for healing (wholeness) and social justice.
Conclusion
Childhood development has implications for lifelong physical and mental health, and resilience; it sets the foundation for future educational achievement, economic success, responsible citizenship, lifelong health, powerful communities, and strong parenting of the next generation13,14. The historical experiences of the Indigenous Australians, the colonisation and ongoing institutionalised discrimination and racism, the intergenerational trauma, epigenetics, and ACEs have had a negative impact on the developmental potential of Indigenous children. However, we must also acknowledge the bloodlines of peoples who not only survived but thrived in the harshest of environments for over 60000 years! The strength of spirit that stood the test of time speaks to an inherent resilience that is intertwined with their spirituality, the deep sense of self interconnected with the whole15. Affording Indigenous Australians the cultural safety that is their birthright, requires that we honour this connectedness and strengths.
It is important to not only change the popular narrative around the inherent vulnerabilities of post-colonial Indigenous Australians, but also the misconceptions and prejudices around neurodevelopmental and mental health diagnosis. The impact of unrecognised challenges cascade into all aspects of a person’s life. Early diagnosis and support can mean the difference between being a victim of institutionalised, systemic racism and discrimination, or becoming empowered to direct one’s own life story. A diagnosis can be a gateway to repairing and rebuilding family and community relationships and enhancing opportunities for social participation.
Being trauma informed is how we support the Indigenous families and young people respectfully without assigning blame and responsibility to individuals; a formal diagnosis is how we ensure the provision of right supports to mitigate the developmental concerns and ensure equity and social justice now and into the future. Inclusive and respectful practices must support and celebrate diversity across all dimensions, including cultural diversity and neurodiversity. When Indigenous children can strengthen their identity by connecting with their cultural heritage and with their Neurotribe and Neurokin16, then they can truly and rightfully grow up strong, healthy, and empowered.
- ESTÉS, C. P. (1992). Women who run with the wolves: myths and stories of the wild woman archetype.
- Australian Medical Association (2013). Aboriginal and Torres Strait Islander health report card 2012-2013: the healthy early years – getting the right start in life. Canberra: Australian Medical Association
- Wise, S. (2013). Improving the early life outcomes of Indigenous children: Implementing early childhood development at the local level. Australian Institute of Health and Welfare.
- Davies, D. (2011). Child development: a practitioner’s guide. New York, Guilford Press.
- Penman, Robyn A. & Australia. Department of Families, Community Services and Indigenous Affairs. & Longitudinal Study of Indigenous Children (Australia). 2006, The ‘growing up’ of Aboriginal and Torres Strait Islander children: a literature review / Robyn PenmanDept. of Families, Community Services and Indigenous Affairs, Canberra, <http://www.fahcsia.gov.au/about/publicationsarticles/research/occasional/Documents/op15/default.htm>
- Corsi S and Cristen P (eds) (2012). Epigenetics, Brain and Behaviour: Research and Perspectives in Neurosciences. New York: Springer.
- NSCDC (National Scientific Council on the Developing Child) (2010). Early Experiences Can Alter Gene Expression and Affect LongTerm Development: Working Paper No. 10. Centre on the Developing Child, Harvard University. http://www.developingchild.net
- Das, R., Hampton, D. D., & Jirtle, R. L. (2009). “Imprinting evolution and human health”. Mammalian Genome, 20(9-10) p. 563.
- Shonkoff JP, Boyce WT, McEwan BS (2009). “Neuroscience, molecular biology and the childhood roots of health disparities: Building a new framework for health promotion and disease prevention”. JAMA, 301(21) doi 10 1001/ JAMA 2009 754.
- FaHCSIA (2013). Footprints in Time – The Longitudinal Study of Indigenous Children: Report from Wave 4. http://www.fahcsia.gov.au/our-responsibilities/indigenous-australians/publications-articles/families-children/footprints-in-time-the-longitudinal-study-ofindigenous-children-lsic/key-summary-report-from-wave-4
- Lohar S, Butera N, Kennedy E, Australian Institute of Family Studies (2014) CFCA Paper No. 25 Strengths of Australian Aboriginal cultural practices in family life and child rearing https://aifs.gov.au/cfca/sites/default/files/publication-documents/cfca25.pdf
- Duffy C (2021) How teaching Indigenous students about culture and history is turning lives around. Accessed 14 Oct 2021, <https://www.abc.net.au/news/2021-10-14/closing-the-gap-on-indigenous-high-school-year-12-completion/100535878?utm_campaign=abc_news_web&utm_content=link&utm_medium=content_shared&utm_source=abc_news_web>
- Center on the Developing Child (2007). The Science of Early Childhood Development(InBrief). Retrieved 14 Oct 2021 from www.developingchild.harvard.edu.
- Center on the Developing Child at Harvard University (2016). From Best Practices to Breakthrough Impacts: A Science-Based Approach to Building a More Promising Future for Young Children and Families.Retrieved 14 Oct 2021 from www.developingchild.harvard.edu.
- Ngaanyatjarra Pitjantjatjar Yankunytjatjara Women’s Council, author. & Magabala Books Aboriginal Corporation, publisher. 2013, Traditional healers of central Australia: Ngangkari / Ngaanyatjarra Pitjantjatjara Yankunytjatjara Women’s Council Aboriginal CorporationMagabala Books Aboriginal Corporation Broome, Western Australia
- Silberman, Steve. 2015, Neurotribes: the legacy of autism and how to think smarter about people who think differently / Steve Silberman; foreword by Oliver SacksAllen & Unwin London
This article has been written for the Australasian Society of Lifestyle Medicine (ASLM) by the documented original author. The views and opinions expressed in this article are solely those of the original author and do not necessarily represent the views and opinions of the ASLM or its Board.
The term Indigenous is used throughout this paper to describe peoples of Aboriginal and Torres Strait Islander descent.