"Experiences of families and professionals living/interacting with neurodivergent children while navigating the policy contexts of health, education and social services: The fight for accessible and suitable support"

Abstract

Families of neurodivergent children often end up interacting with policy contexts of health, education, and social services on a regular basis when they have unmet needs. My research investigates these policy contexts to better understand how more accessible and suitable support can be provided to meet those needs. My research also describes the experiences of families that struggle to find or receive accessible and suitable support. I also aimed to highlight the principles of the neurodiversity paradigm to illustrate the deficit-based thinking of current systems and practice. It is natural, healthy, and valuable to have diversity among minds, both in the classroom and in society. The principles of the neurodiversity paradigm challenge the ways in which health, education, and social service systems respond to neurodivergent children. My research design included literature review, policy analysis, key informant interviews and autoethnographic reflections. Literature was drawn from academic research, but grey literature was particularly important as sometimes families of neurodivergent children at crisis point feel that they had no choice but to talk to the media. I also undertook interviews with social service professionals locally to understand their position on New Zealand provision for neurodivergent children and their families. My findings indicate that there are key limitations and problems in relation to current policy and practice. There is tension between the policy emphasis of inclusion and the real-life experiences that document the practice of exclusion. This could be due to the ways in which neurodivergent children are constructed and framed through policy language that reflects a deficit-thinking model. To ensure that the needs of neurodivergent children are met through the paradigm of neurodiversity more professional development and policy language shifts need to occur so that society can see neurological differences as a valuable part of humanity. Furthermore, greater emphasis needs to be placed on options that are accessible for families, and suitable to the unique needs of their children. Overall, the research also demonstrates that much higher levels of transparency is needed between the siloed policy areas of health, education and social services, the professionals who work in each of these areas and most importantly between clinicians and families in relation to diagnoses, funding, and physical support. Finally, there also needs to be transparency in terms of the objectives of the neurodiversity paradigm which is to make clear the faults of the system and accept difference as the norm. The neurodiversity movement and paradigm challenge the deficit-based pathological views of neurological differences such as autism, ADHD, epilepsy and other neurodivergences. When neurodivergence is pathologized neurodivergent people are compared to a fictional norm or a ‘right’ way of being resulting in stigma, shame and often co-occurring mental health conditions such as anxiety and depression. These findings are important as families of neurodivergent children with unmet needs are forced to interact with policy contexts to receive support and funding. Accessible, suitable support including funding availability is essential to a neurodivergent child’s well-being and inclusion within society.