Obtaining an autism spectrum disorder diagnosis and supports: New Zealand parents’ experiences

Eggleston, Matthew; Thabrew, Hiran; Frampton, Christopher; Eggleston, Katherine; Hennig, Shannon

doi:10.1016/j.rasd.2019.02.004

Cited by 38 publications

(69 citation statements)

References 17 publications

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“…The low relative rates of ASD identified in Māori, and Pasifika children and young people are consistent with previous New Zealand studies (Eggleston et al, 2019; Simpson et al, 2018). However, according to Elsabbagh and colleagues (2012), these are unlikely to reflect true ethnically based differences in prevalence.…”

Section: Discussionsupporting

confidence: 90%

“…Our estimated male to female ratio of 3.6:1 lies between widely cited 4:1 estimates ( American Psychiatric Association, 2013a ; Baio et al, 2018 ) and the 3:1 estimate of Loomes et al (2017) that they determine to be the ‘true’ ratio in a recent meta-analysis ( Loomes et al, 2017 ). Patterns across ethnic groups are consistent with those seen in previous New Zealand studies ( Eggleston et al, 2019 ; Virues-Ortega et al, 2017 ) and the results of the NZHS ( MoH, 2019a ). They also reflect previous US studies in which rates for minority ethnic groups (Hispanic and African American) were lower than European-American rates ( Baio et al, 2018 ; Kogan et al, 2008 ).…”

Section: Discussionsupporting

confidence: 90%

“…Recent estimates from the United States suggest 16.8 per 1000 children (or 1 in 59) have ASD (Baio et al, 2018). In New Zealand, there is very limited data on the incidence, prevalence, age of diagnosis and management of ASD (Eggleston et al, 2019; Thabrew & Eggleston, 2018). Ministry of Health (MoH) publications still base ASD prevalence numbers on older United Kingdom research from 2006, suggesting ASD affects only 1% of the New Zealand population (Ministries of Health and Education, 2016) but warn that these figures should be regarded as conservative (New Zealand Guidelines Group, 2010).…”

Section: Introductionmentioning

confidence: 99%

See 2 more Smart Citations

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

Bowden

Thabrew

Kokaua

et al. 2020

Autism

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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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Section: Discussionsupporting

confidence: 90%

Section: Discussionsupporting

confidence: 90%

Section: Introductionmentioning

confidence: 99%

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

Bowden

Thabrew

Kokaua

et al. 2020

Autism

Self Cite

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“…Official assessment guidelines are largely aspirational as, in reality, the availability and structure of expert services in any one region varies widely (Thabrew & Eggleston, 2018). Long wait times exacerbate an already stressful and, for many, unsatisfactory process (Eggleston, Thabrew, Frampton, Eggleston, & Hennig, 2019).…”

Section: The Importance Of Screening For Asdmentioning

confidence: 99%

Autism in Aotearoa

Kember

Williams

2021

European Journal of Psychological Assessment

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Abstract. Screening measures for autism spectrum disorder (ASD) are important tools for clinicians and researchers. However, where a measure developed and validated for one population is used with another, its performance in this new context must be carefully examined. The RAADS-14, a brief ASD screen developed in Sweden, was evaluated with a sample of New Zealand adults ( N = 387), 41 of whom self-reported a prior diagnosis of ASD. The convergent validity of the RAADS-14 (Hypothesis 2) was supported by a strong positive correlation with the AQ-10 (short version of the Autism Spectrum Quotient), r = .81. Discriminant validity (Hypothesis 3) was also supported by a strong negative correlation with the EQ-Short (short version of the Empathy Quotient), r = −.75. However, the measure did not meet inferential criteria for internal consistency (Hypothesis 1), and confirmatory factor analysis (CFA) found a poor fit of the proposed three-factor model (Hypothesis 4) to the data. A cut-off score of 14/42 provided adequate sensitivity (95%) to detect participants with self-reported ASD diagnoses, but not adequate specificity (70%), suggesting a very high rate of false positives should be expected if relying on RAADS-14 scores alone to interpret presence of ASD. In sum, our results do not provide sufficient evidence of reliability and validity to support the use of the RAADS-14 with the New Zealand population. We provide suggestions for refinement of the RAADS-14 that may lead to increased reliability and validity.

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“…Parents of the study of Galpin et al (2018) also highlighted the need for personalized post-diagnostic support. Satisfaction with post-diagnostic support contributes to parents’ overall satisfaction with the diagnostic process (Eggleston et al, 2019). Psychoeducational interventions do not generally exceed 12 sessions, can be addressed individually or in groups, and are delivered by a wide range of professionals.…”

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confidence: 99%

Facilitators’ perspectives on a psychoeducational program for parents of an autistic child

Decroocq

Soulas

Lichtlé

et al. 2020

Autism

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The recent increase of diagnosed cases of autism spectrum disorders has led to a considerable rise in the demands for autism-related services and interventions. Parents express the need to access relevant information about their child’s difference, and parent support interventions appear to respond effectively to this demand, as they are knowledge-focused and offer indirect support to the child. The aim of this study was to capture the subjective experience of facilitators who implemented a psychoeducational program called Beyond PDD: Parental Skills within My Reach. Structured interviews of the facilitators ( N = 18) provided insight on institutional support, issues related to the program itself, required and/or recommended professional background, personal experience and competences, and difficulties linked to recruitment and research criteria. Recommendations aiming to enhance program implementation and delivery were then created using facilitators’ feedback on these aspects. Lay abstract The recent increase of diagnosed cases of autism spectrum disorders has led to a considerable rise in the demands for autism-related services and interventions. Caring for an autistic child can be perceived as an enrichment, which coexists with stress in parents. Parents express the need to access relevant information about their child’s difference, and parent support interventions appear to respond effectively to this demand, as they are knowledge-focused and offer indirect support to the child. The aim of this study was to capture the subjective experience of facilitators who implemented a psychoeducational program called Beyond PDD: Parental Skills within My Reach. This program is based on the acknowledged fact that parents of autistic children play a central role in their child’s development. Its main goal is to help parents of autistic children under the age of 8 to identify, develop, and update their parenting competences. This program broaches different topics: (1) specific features of an autistic child, (2) post-diagnostic parental adjustment, (3) communication and social relationships, (4) importance of providing the child with a structured environment, and (5) parental emotions and perceptions that impact everyday life. Structured interviews of the facilitators provided insight on institutional support, issues related to the program itself, required and/or recommended professional background, personal experience and competences, and difficulties linked to recruitment and research criteria. Recommendations aiming to enhance program implementation and delivery were then created using facilitators’ feedback on these aspects.

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Obtaining an autism spectrum disorder diagnosis and supports: New Zealand parents’ experiences

Cited by 38 publications

References 17 publications

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

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

Autism in Aotearoa

Facilitators’ perspectives on a psychoeducational program for parents of an autistic child

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