Hilary Stace‘s PhD thesis in Public Policy looks at the policy problems arising from the rapidly increasing diagnoses of autism in recent decades.
She considers history and construction of the concept of autism. At present people with autism need to have ‘love’ (i.e. family to advocate) and ‘luck’ (i.e. that there are support people and services available) for good outcomes, as policy processes and services/support are fragmented and inequitable.
She looks at autism as a ‘wicked’ policy problem and how that might be addressed by bringing those with lived experience into the policy process.
Stace utilises “The “transformative paradigm‟…a research methodology which builds on recent developments in participatory and emancipatory research, and disciplines such as disability studies. It advocates approaches based on mixed methods, social justice, ethics and partnership, so is particularly suited to examining a problem such as autism, and indicating ways forward”.
Her recommendations for improving autism policy include creating a clearing house/depository for all autism research and reports and evaluations of autism programmes and services across government. And to continue to encourage, resource, pilot and evaluate new initiatives. One resource she discusses is the New Zealand Autism Spectrum Disorder Guideline (Ministries of Health and Education, 2008).
You can download this paper from the Community Research kete now: Moving beyond love and luck: building right relationships and respecting lived experience in New Zealand autism policy.