'I wouldn't want one or the other': Understanding parents' preferences for direct support or parent coaching for young autistic children.

LAY ABSTRACT: Professionals often support autistic children by working with them directly (direct support) or by coaching their parents. We know a lot about what parents think about parent coaching, but we do not know as much about what they think about direct support. We also do not know whether parents prefer parent coaching or direct support. The current study involved 22 parents who each received 2 h a week of direct support for their autistic child and up to 1 h a week of parent coaching for 6 months. At the end of 6 months, all these parents indicated in a survey whether they preferred parent coaching or direct support. Eleven of these participating parents also chose to take part in an interview to understand more about these preferences. Our findings suggest that parents generally liked both supports and believed they worked well together; however, they preferred direct support over parent coaching. While parents think that both approaches are beneficial, there are strengths and challenges of each. These findings emphasise the importance of parent choice in the delivery of support. It may also be possible to adapt both approaches to address some of the identified challenges and improve the whole family's experience.

Low-intensity parent- and clinician-delivered support for young autistic children in Aotearoa New Zealand: a randomised controlled trial.

Background: Aotearoa New Zealand does not provide publicly-funded intensive autism support. While parent-mediated supports are promising, children and families may also benefit from direct clinician support. We tested the efficacy of a low-intensity programme involving parent- and clinician-delivered support for autistic children. Methods: This single-blind, two-arm randomised controlled trial assessed outcomes of a six-month low-intensity parent- and clinician-delivered support (2-3 h per week) based on the Early Start Denver Model compared to a control group who received monthly support calls and assistance with referrals. Children aged 1-4.5 years who were autistic or showing signs of autism and their parents were randomised to the low-intensity or control group by a blinded statistician using the Urn minimisation method. Assessments were conducted at baseline and immediately following the support period (24-weeks post-baseline). The primary outcome was child engagement during an interaction with their parent. The trial was pre-registered with ANZCTR: U1111-1260-2529. Findings: From March 2021 to May 2023, 56 families were randomised to either the low-intensity or control group. Following drop-outs, 21 families in the low-intensity group and 24 in the control group were included in analysis. There was large and significantly greater improvement in children's engagement in the low-intensity group compared to the control group (F (1, 43) = 21.47, p < 0.0001, ηp 2 = 0.33). There was one recorded adverse event unrelated to the support and two adverse effects related to the support. Interpretation: A low-intensity parent- and clinician-delivered support can improve engagement between an autistic child and their parent during play. Low-intensity supports may be beneficial in areas where access to clinical autism supports is limited. Funding: Emerging Researcher First Grant from the Health Research Council of New Zealand.

Mortality risk among Autistic children and young people: A nationwide birth cohort study.

LAY ABSTRACT: Existing literature indicates that Autistic people have shorter life expectancy, but little is known about the mortality risk among Autistic children and young people (0-24 years). We used a 15-year nationwide birth cohort study to estimate the mortality risk among Autistic children and young people in Aotearoa/New Zealand. The study included 895,707 children and 11,919 (1.4%) were Autistic. We found that autism was associated with a significantly higher mortality risk compared to the non-Autistic population. In addition, we found that this risk was significantly higher among females compared to males and for those with a co-occurring intellectual disability. Increased efforts are required to better meet the health needs of this population.

Supporting tamariki takiwatanga Maori (autistic Maori children): Exploring the experience of early childhood educators.

LAY ABSTRACT: The knowledge and attitudes of educators can have a strong influence on the experiences of autistic children who attend inclusive early childhood settings. Autistic children from under-represented ethnic groups, for example, tamariki takiwatanga Maori (autistic Maori children), are likely to face extra challenges and educators need to consider ways to support their cultural development. For this study, we interviewed 12 educators with recent experience supporting tamariki takiwatanga Maori in inclusive early childhood settings. We constructed three themes and seven subthemes from the interview data. We found that educators' understandings of autism were mostly in line with the neurodiversity perspective, which views autism as a difference, not a disorder. We also found similarities between the neurodiversity perspective and Maori perspectives of autism and a need for more training and resources based upon a Maori world view and available in te reo Maori (the Maori language).

Effects of a low-intensity Early Start Denver Model-based intervention delivered in an inclusive preschool setting.

The Early Start Denver Model (ESDM) is a promising early intervention for promoting improved social, cognitive, and communication outcomes for young children with autism spectrum disorder (ASD). However, most studies evaluating group-based delivery of this program have used 15-25 h per week of intervention in specialized ESDM preschools with low child-teacher ratios. Thus, the positive results from such studies might not be obtained when this intervention model is evaluated in more typical inclusive preschool settings. In this study, a low-intensity version of the ESDM was delivered to three young children with ASD in their regular inclusive preschool by a certified therapist who did not typically work at any of the preschools. The intervention procedures were implemented for 3 h per week over an 8- to 10-week period. Data were gathered on children's levels of participation, imitation, and communication from weekly 10-min video recordings. The effects of the intervention were evaluated using a multiple probe across participants design with 3 weekly follow-up probes, 3 weeks after the intervention ended. All participants showed improvement in active participation, imitation and either intentional vocalizations or spontaneous functional utterances. These results were generally maintained at follow-up. This low-intensity version of the ESDM would seem effective for use in real-world preschool environments.

Maori and autism: A scoping review.

LAY ABSTRACT: Most current approaches to identifying, researching and managing autism are based on Western views and understandings. However, different cultural groups may understand and approach autism differently. We searched a wide range of websites, academic journals and other sources for published information related to autism and Maori, the indigenous people of Aotearoa/New Zealand. Our search identified 13 publications that addressed questions related to Maori understandings of autism, Maori prevalence rates and diagnostic and support services for Maori. Overall, we found broad differences in Maori and Western understandings of autism and slightly higher autism prevalence rates for Maori than for non-Maori New Zealanders. Findings also highlighted a need for diagnostic and support services that are both effective and culturally appropriate for Maori. We discuss what these findings might mean for future research and the provision of services for Maori with autism.