scholarly journals Moving Beyond Love and Luck: Building Right Relationships and Respecting Lived Experience in New Zealand Autism Policy

2021 ◽  
Author(s):  
◽  
Hilary Stace
Keyword(s):  
Autism Spectrum Disorder ◽  
New Zealand ◽  
Lived Experience ◽  
Best Practice ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Relationship Building ◽  
Social Model ◽  
Social Model Of Disability ◽  
Policy Problem

<p>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.</p>

scholarly journals Moving Beyond Love and Luck: Building Right Relationships and Respecting Lived Experience in New Zealand Autism Policy

2021 ◽  
Author(s):  
◽  
Hilary Stace
Keyword(s):  
Autism Spectrum Disorder ◽  
New Zealand ◽  
Lived Experience ◽  
Best Practice ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Relationship Building ◽  
Social Model ◽  
Social Model Of Disability ◽  
Policy Problem

<p>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.</p>

scholarly journals Perceptions of effective implementation of applied behaviour analysis (ABA) in schools

2021 ◽  
Author(s):  
Heather Cowan
Keyword(s):  
Autism Spectrum Disorder ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Social Model ◽  
Future Research ◽  
Social Model Of Disability ◽  
Behaviour Analysis ◽  
Effective Implementation ◽  
Applied Behaviour Analysis ◽  
Facilitators And Barriers

Policy/Program Memorandum Number 140 outlines the requirements for Ontario school boards to incorporate principles of Applied Behaviour Analysis (ABA) into school programs for students with Autism Spectrum Disorder (ASD). With increasing numbers of children being diagnosed with ASD, it is important to assess the facilitators and barriers in implementing this policy, and work towards effective academic and social inclusion. Through individual interviews and follow-up questionnaires, four behaviour therapists provided their perceptions and experiences of ABA in the classroom. A thematic analysis yielded five main themes: reinforcement in the classroom, consistency, ABA and behaviours in the classroom, collaboration, and attributions. These themes are interpreted using a social model of disability and a children’s rights lens to answer the research question: what are the facilitators and barriers to the effective implementation of ABA in schools? Limitations, recommendations for future research, and practical recommendations are discussed. Key words: Applied behaviour analysis, PPM 140, autism spectrum disorder, inclusion, social model of disability

scholarly journals Perceptions of effective implementation of applied behaviour analysis (ABA) in schools

2021 ◽  
Author(s):  
Heather Cowan
Keyword(s):  
Autism Spectrum Disorder ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Social Model ◽  
Future Research ◽  
Social Model Of Disability ◽  
Behaviour Analysis ◽  
Effective Implementation ◽  
Applied Behaviour Analysis ◽  
Facilitators And Barriers

Policy/Program Memorandum Number 140 outlines the requirements for Ontario school boards to incorporate principles of Applied Behaviour Analysis (ABA) into school programs for students with Autism Spectrum Disorder (ASD). With increasing numbers of children being diagnosed with ASD, it is important to assess the facilitators and barriers in implementing this policy, and work towards effective academic and social inclusion. Through individual interviews and follow-up questionnaires, four behaviour therapists provided their perceptions and experiences of ABA in the classroom. A thematic analysis yielded five main themes: reinforcement in the classroom, consistency, ABA and behaviours in the classroom, collaboration, and attributions. These themes are interpreted using a social model of disability and a children’s rights lens to answer the research question: what are the facilitators and barriers to the effective implementation of ABA in schools? Limitations, recommendations for future research, and practical recommendations are discussed. Key words: Applied behaviour analysis, PPM 140, autism spectrum disorder, inclusion, social model of disability

Stress and distress in New Zealand parents caring for a child with autism spectrum disorder

2021 ◽  
Vol 111 ◽  
pp. 103875
Author(s):  
Daniel Shepherd ◽  
Jason Landon ◽  
Sonja Goedeke ◽  
Jake Meads
Keyword(s):  
Autism Spectrum Disorder ◽  
New Zealand ◽  
Autism Spectrum ◽  
Spectrum Disorder

The New Zealand minds for minds autism spectrum disorder self-reported cohort

2017 ◽  
Vol 36 ◽  
pp. 1-7 ◽  
Author(s):  
Javier Virues-Ortega ◽  
Klaus Lehnert ◽  
Brendan Swan ◽  
Michael W. Taylor ◽  
Adrienne Southee ◽  
...  
Keyword(s):  
Autism Spectrum Disorder ◽  
New Zealand ◽  
Autism Spectrum ◽  
Spectrum Disorder

scholarly journals The role of caregiver speech in supporting language development in infants and toddlers with autism spectrum disorder

2020 ◽  
Vol 32 (4) ◽  
pp. 1230-1239 ◽  
Author(s):  
Meghan R. Swanson
Keyword(s):  
Autism Spectrum Disorder ◽  
Language Development ◽  
Best Practice ◽  
Intervention Studies ◽  
Children With Autism ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Language Research ◽  
Language Data

AbstractParents play an essential role in supporting child development by providing a safe home, proper nutrition, and rich educational opportunities. In this article we focus on the role of caregiver speech in supporting development of young children with autism spectrum disorder (ASD). We review studies from typically developing children and children with autism showing that rich and responsive caregiver speech supports language development. Autism intervention studies that target caregiver speech are reviewed as are recent scientific advances from studies of typical development. The strengths and weakness of different techniques for collecting language data from caregivers and children are reviewed, and natural language samples are recommended as best practice for language research in autism. We conclude that caregivers play a powerful role in shaping their children's development and encourage researchers to adapt parent-mediated intervention studies to acknowledge individual differences in parents by using a personalized medicine approach.

scholarly journals Autism Spectrum Disorder in Aotearoa New Zealand: Strategies for teachers.

Teachers Work ◽  
2018 ◽  
Vol 15 (2) ◽  
pp. 89-93
Author(s):  
Penelope Baines ◽  
Anne Yates
Keyword(s):  
Autism Spectrum Disorder ◽  
New Zealand ◽  
Young People ◽  
Inclusive Education ◽  
Educational Experience ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Ministry Of Education ◽  
Children And Young People ◽  
Aotearoa New Zealand

  According to Autism New Zealand (n.d.) there are approximately 65,000 New Zealanders with an Autism Spectrum Disorder (ASD).  Despite this prevalence, Goodall (2014) notes that “…teachers are still on a long journey to full acceptance of students on the autism spectrum as learners with potential” (p. 133).  This is concerning as one of the principles that form the foundation of the New Zealand Curriculum (NZC) (Ministry of Education, 2007) is inclusion.  The NZC states these principles “embody the beliefs about the nature of the educational experience and the entitlement of the student” (p. 37) and Te Kete Ipurangi (n.d.) describes inclusive education as all children and young people being engaged and achieving through participating, learning and belonging.  These principles, in addition to the prevalence of people with ASD in New Zealand, mean that teachers must possess an understanding of ASD as well as knowledge of teaching strategies to assist these learners.

scholarly journals Mind the gap: an intervention to support caregivers with a new autism spectrum disorder diagnosis is feasible and acceptable

2020 ◽  
Vol 6 (1) ◽  
Author(s):  
Suzannah Iadarola ◽  
Melanie Pellecchia ◽  
Aubyn Stahmer ◽  
Hyon Soo Lee ◽  
Lindsay Hauptman ◽  
...  
Keyword(s):  
Autism Spectrum Disorder ◽  
Large Scale ◽  
Controlled Trial ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Relationship Building ◽  
Service Access ◽  
Retention Data ◽  
Poverty Level ◽  
Children With Asd

Abstract Introduction Children with autism spectrum disorder (ASD) benefit when their caregivers can effectively advocate for appropriate services. Barriers to caregiver engagement such as provider mistrust, cultural differences, stigma, and lack of knowledge can interfere with timely service access. We describe Mind the Gap (MTG), an intervention that provides education about ASD, service navigation, and other topics relevant to families whose children have a new ASD diagnosis. MTG was developed via community partnerships and is explicitly structured to reduce engagement barriers (e.g., through peer matching, meeting flexibility, culturally-informed practices). We also present on the results of a pilot of MTG, conducted in preparation for a randomized controlled trial. Methods MTG was evaluated using mixed methods that included qualitative analysis and pre/post-test without concurrent comparison group. Participants (n=9) were primary caregivers of children (ages 2-7 years) with a recent ASD diagnosis and whose annual income was at or below 185% of the federal poverty level. In order to facilitate trust and relationship building, peer coaches delivered MTG. The coaches were parents of children with ASD who we trained to deliver the intervention. MTG consisted of up to 12 meetings between coaches and caregivers over the course of 18 weeks. Coaches delivered the intervention in homes and other community locations. Coaches shared information about various “modules,” which were topics identified as important for families with a new ASD diagnosis. Coaches worked with families to answer questions, set weekly goals, assess progress, and offer guidance. For the pilot, we focused on three primary outcomes: feasibility, engagement, and satisfaction. Feasibility was measured via enrollment and retention data, as well as coach fidelity (i.e., implementation of MTG procedures). Engagement was measured via number of sessions attended and percentage completion of the selected outcome measures. For completers (n=7), satisfaction was measured via a questionnaire (completed by caregivers) and open-ended interviews (completed by caregivers and coaches). Results We enrolled 56% of referred caregivers and 100% of eligible families. Retention was high (78%). Coaches could deliver the intervention with fidelity, completing, on average, 83% of program components. Engagement also was high; caregivers attended an average of 85% of total possible sessions and completed 100% of their measures. Caregivers indicated moderately high satisfaction with MTG. Qualitative data indicated that caregivers and coaches were positive about intervention content, and the coach-caregiver relationship was important. They also had suggestions for changes. Conclusion Mind the Gap demonstrates evidence of feasibility, and data from the pilot suggest that it addresses intervention engagement barriers for a population that is under-represented in research. The results and suggestions from participants were used to inform a large-scale RCT, which is currently underway. Overall, MTG shows promise as an intervention that can be feasibly implemented with under-resourced and ethnic minority families of children with ASD Trial registration This study is registered with ClinicalTrials.gov: NCT03711799.

scholarly journals Autism spectrum disorder/Takiwātanga: An Integrated Data Infrastructure-based approach to autism spectrum disorder research in New Zealand

Autism ◽  
2020 ◽  
Vol 24 (8) ◽  
pp. 2213-2227 ◽  
Author(s):  
Nicholas Bowden ◽  
Hiran Thabrew ◽  
Jesse Kokaua ◽  
Richard Audas ◽  
Barry Milne ◽  
...  
Keyword(s):  
Mental Health ◽  
Autism Spectrum Disorder ◽  
New Zealand ◽  
Young People ◽  
Autism Spectrum ◽  
National Registry ◽  
Spectrum Disorder ◽  
Data Sources ◽  
Children And Young People ◽  
Data Infrastructure

New Zealand has few estimates of the prevalence of autism spectrum disorder and no national registry. The use of administrative data sources is expanding and could be useful in autism spectrum disorder research. However, the extent to which autism spectrum disorder can be captured in these data sources is unknown. In this study, we utilised three linked administrative health data sources from the Integrated Data Infrastructure to identify cases of autism spectrum disorder among New Zealand children and young people. We then investigated the extent to which a range of mental health, neurodevelopmental and related problems co-occur with autism spectrum disorder. In total, 9555 unique individuals aged 0–24 with autism spectrum disorder were identified. The identification rate for 8-year-olds was 1 in 102. Co-occurring mental health or related problems were noted in 68% of the autism spectrum disorder group. The most common co-occurring conditions were intellectual disability, disruptive behaviours and emotional problems. Although data from the Integrated Data Infrastructure may currently undercount cases of autism spectrum disorder, they could be useful for monitoring service and treatment-related trends, types of co-occurring conditions and for examining social outcomes. With further refinement, the Integrated Data Infrastructure could prove valuable for informing the national incidence and prevalence of autism spectrum disorder and the long-term effectiveness of clinical guidelines and interventions for this group. Lay abstract New Zealand has few estimates of the prevalence autism spectrum disorder and no national registry or data set to identify and track cases. This hinders the ability to make informed, evidence-based decisions relating to autism spectrum disorder. In this study, we utilised linked health and non-health data to develop a method for identifying cases of autism spectrum disorder among children and young people in New Zealand. In addition, we examined rates of co-occurring mental health, neurodevelopmental and related conditions among this cohort and compared these to the general population. The method identified almost 10,000 children and young people with autism spectrum disorder in New Zealand. Co-occurring mental health or related problems were found in over 68% of this group (nearly seven times higher than the general population), and around half were identified with multiple co-occurring conditions. The most frequently identified conditions were intellectual disability, disruptive behaviours and emotional problems. We have developed a useful method for monitoring service and treatment-related trends, number and types of co-occurring conditions and examining social outcomes among individuals with autism spectrum disorder. While the method may underestimate the prevalence of autism spectrum disorder in New Zealand, it provides a significant step towards establishing a more comprehensive evidence base to inform autism spectrum disorder–related policy.

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