MOVING BEYOND LOVE AND LUCK: BUILDING RIGHT RELATIONSHIPS AND RESPECTING LIVED EXPERIENCE IN NEW ZEALAND AUTISM POLICY by HILARY STACE A thesis submitted to the Victoria University of Wellington in fulfilment of the requirements for the degree of Doctor of Philosophy Victoria University of Wellington 2011 Abstract Autism Spectrum Disorder (ASD) diagnoses have been rising rapidly in recent years and New Zealand is just one country grappling with the policy challenges this presents. Currently, love, such as a supportive family, and luck, that appropriate services are available, are required by people with autism and their families for good outcomes, a situation that is neither equitable nor sustainable. Autism was first named as a separate condition in 1943. The concept of autism has developed significantly since then in many ways, including as the cultural identity that many autistic adults now claim. Influenced by the international disability rights movement and local activism, New Zealand policy is now based on the social model of disability, whereby society as a whole has responsibility for removing disabling barriers. In 1997, a New Zealand mother, unable to find appropriate support at a time of crisis, killed her autistic daughter. A decade of policy work followed, leading to the 2008 publication of the New Zealand Autism Spectrum Disorder Guideline (Ministries of Health and Education, 2008) which is the first whole-of-spectrum, whole-of-life, whole- of-government, best practice approach in the world to address the extensive issues surrounding ASD. Prioritisation and initial attempts at implementation revealed new problems. The complexity, lack of simple solutions and fragmentation of autism policy indicates that this is a „wicked‟ policy problem. To move beyond this situation requires innovative and collaborative approaches. The „transformative paradigm‟ is 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. There is untapped expertise among those with lived experience of autism and their families to tackle the „wicked‟ aspects of autism, but to harness this expertise requires relationship building which addresses power imbalances and past injustices. This thesis analyses New Zealand autism policy and suggests ways this lived experience could be better respected and incorporated into policy processes, in an attempt to move past the currently required variables of love and luck. ii Acknowledgements I would like to thank my supervisors, Associate Professor Jackie Cumming, Director of the Health Services Research Centre in the School of Government at Victoria University of Wellington, and Dr Lesley Hall from Victoria University‟s Gender and Women‟s Studies programme for all their advice and encouragement. Also the late Rev Dr Christopher Newell, a supreme disability activist and academic, who acted as supervisor and mentor until his death in June 2008. I was lucky to win a three year Disability Placement Programme scholarship from the Health Research Council of New Zealand, and later PhD completion funding from the combined universities‟ Building Research Capability in the Social Sciences (BRCSS), who also kindly extended their thesis submission deadline. Thanks are also due to so many people who have encouraged and supported me over the years of this project. To my son Oscar who set me on this path and permits me to talk about him, and his sister Serena, and Martin, who have supported and advised me all the way. To my advisors John and Matt, and to my friends Jen and Alan, and all the other people in the autism world for providing glimpses into lived experience. To all the parents including Wendy, Niki, Richard, Russell, Marion, Giovanni and Justine, and the numerous other experts, including public servants and other professionals, who have helped me and given me their time and wisdom over the years (and not forgetting those from the neurotypical world such as Jane and Marie who kept me focused). Also thank you to Donna Mertens and the other overseas academics, for inspiration; to all my colleagues at the Health Services Research Centre for ongoing academic discussions, and Amanda and Dawn of the School of Government. Finally, I hope that in some way this thesis will help to make a positive difference to people with autism and their families. iii Glossary AA Altogether Autism ABA Applied Behaviour Analysis ACC Accident Compensation Corporation ADHD Attention Deficit Hyperactivity Disorder AIT Autism Intervention Trust ANZ Autism New Zealand ASAN Autistic Self Advocacy Network (US based) ASD Autism Spectrum Disorder(s) ASK Trust Autism Spectrum Kiwis Trust ASNZ Asperger‟s Syndrome New Zealand Asperger(s) Syndrome Type of autism usually without intellectual impairment or language delay, named after Hans Asperger Aspie Optional self description for person with Asperger‟s syndrome AspieHelp Christchurch-based self advocacy group Autism Spectrum Disorder Diagnostic umbrella term for range of conditions (DSM or ICD) characterised by „deficits‟ in communication, understanding and imagination Autism Encompassing term for the spectrum of autistic conditions and experience Autistic disorder Diagnostic term for ASD condition Biomedical Term used for chemical interventions for autism that may not be evidence-based Blog Regular and usually brief commentary, on a dedicated website BSS Behaviour Support Service Bulk funding A lump sum of money given to schools CAMS Child and Adolescent Mental Health Service Carer relief Allocation of days by NASC for primary carer to pay alternative carer C&C DHB Capital and Coast District Health Board Chelation Biomedical (non-evidence-based) process of removing heavy metals from autistic child Child Disability Allowance Sum of money paid weekly to parents of eligible disabled children Co-morbid Condition which exists with another eg autism and intellectual impairment Consumer Person (eg client, patient) who is the target/user of policy or service CYF Child Youth and Family Deaf Capital D indicates identification as a cultural minority Decile Rating system for state funded schools based on the socio-economic status of families of the area, with iv 1 the most deprived and 10 the least Deinstitutionalisation The process of closing the big mental health and psychopaedic institutions and rehousing the residents Deprivation New Zealand Deprivation 1-10 health policy scale with 10 the most deprived area and 1 the least (opposite to the Education rating decile system) DHB District Health Board DIAS Disability Information and Advisory Service DSAC Disability Services Advisory Committee (of a DHB) DSM Diagnostic and Statistical Manual of Mental Disorders (American Psychiatric Association) DSS Ministry of Health, Disability Support Services EarlyBird Parent education programme provided by Autism NZ ERO Education Review Office FC Facilitated Communication; typing with assistance Fono Samoan word for meeting Fundholder school A school with many special needs students which gets their grant in a lump sum so they buy in their own resources, rather than using the services of the Ministry of Education‟s Special Education GP General Practitioner (primary health doctor) GSE Ministry of Education, Group Special Education (now just Special Education) HFA Health Funding Authority (disestablished in 2001) HFA High Functioning Autism Honorable/Hon Title for life for Members of Parliament who have been cabinet ministers Hyperbaric chamber Pressurised capsule used by some parents to treat their child‟s autism IACC US Department of Health and Human Services, Interagency Autism Coordinating Committee IAG Implementation Advisory Group (New Zealand Guidelines Group) ICD International Classification of Disability (World Health Organisation) ID Intellectual disability; in New Zealand usually a combination of significantly below average intellectual and adaptive function IEP Individual Education Programme or Plan IF Individualised Funding (disabled person controls finances for their own support) Impairment A specific condition Incidence New cases of a condition in a population Invalids‟ Benefit Welfare payment that autistic people may be eligible for from 16 years old LAC Local Area Coordination v LGG Living Guideline Group (New Zealand Guidelines Group) Magnet school Mainstream school with a larger proportion than normal of students with special educational needs, usually because of more inclusive cultures Mainstream Programme Supported employment programme for disabled people in government agencies Medical model Individual, deficit based model of disability MMR Measles, mumps and rubella immunisation MoE Ministry of Education MoH Ministry of Health MoU Memorandum of Understanding MP Member of Parliament (New Zealand‟s one house) MSD Ministry of Social Development NASC Needs Assessment and Service Coordination NASCA NASC Association NCEA National Certificate of Educational Achievement (NZ‟s main school based assessment system) Neurodiverse Neurological difference such as autism Neurotypical „Normal‟ neurology New Model A pilot programme in the Bay of Plenty for an alternative way of providing disability support NGO Non government organisation No Child Left Behind US school-based standards and testing programme NZDS New Zealand Disability Strategy NZQA New