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“We Need Community-Centred, Strongly Ethical Genetic Research”: A Qualitative Investigation of Community Attitudes Toward Autism Genetics

Autism genetics has historically attracted a substantial proportion of autism research funding internationally. However, more recently, several controversies centered on ethical conduct and lack of community consultation have emerged. This has triggered Autistic-led protests for the functional and meaningful inclusion of Autistic voices in the research design.

Caregiver perspectives regarding the impact of feeding difficulties on mealtime participation for primary school-aged autistic children and their families

Although up to 89% of autistic children experience feeding difficulties, little is known about the impact of these difficulties on mealtime participation. The aim of this study was to explore the impact of feeding difficulties on the mealtime participation of autistic children and their families based on caregiver experiences.

Community views on the assessment and diagnosis of autism: Principles to guide clinical practice

This study aimed to identify guiding principles to underpin assessment and diagnosis of autism to improve the quality, consistency and accuracy of services provided to individuals and their families. An online survey and focus groups were used to capture community perspectives of members of the Australian autistic and autism communities.

Child and Family Characteristics as Predictors of the Severity of Self-injurious Behaviours in Autistic Children and Adolescents

Autistic children demonstrate an increased likelihood of self-injurious behaviours (SIB). To support autistic individuals who exhibit SIB and understand the factors that contribute to SIB, we examined several child and family characteristics associated with the severity of SIB.

Child and Family Characteristics Associated with Symptoms of Anxiety in Autistic Children: A Biobank Study

Autistic children have an increased likelihood of anxiety, but more research is needed on the characteristics that predict various types of anxiety in this population. 

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

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.

CRISPR-Cas9-generated PTCHD1 2489T>G stem cells recapitulate patient phenotype when undergoing neural induction

An estimated 3.5%-5.9% of the global population live with rare diseases, and approximately 80% of these diseases have a genetic cause. Rare genetic diseases are difficult to diagnose, with some affected individuals experiencing diagnostic delays of 5-30 years. Next-generation sequencing has improved clinical diagnostic rates to 33%-48%. In a majority of cases, novel variants potentially causing the disease are discovered. 

Investigating the impact of autistic children's feeding difficulties on caregivers

The aim of this study was to investigate the influence of children's autism characteristics, sensory profiles and feeding difficulties on caregiver-reported impact at mealtimes.

Community perspectives on the appropriateness and importance of support goals for young autistic children

Researchers do not know much about what autistic adults, parents and professionals think about support goals for young autistic children. People's views of support goals might also be influenced by their beliefs about early support more generally. This survey involved 87 autistic adults, 159 parents of autistic children and 80 clinical professionals living in New Zealand and Australia.

The first six months of life: A systematic review of early markers associated with later autism

There is now good evidence that behavioural signs of autism spectrum conditions (autism) emerge over the first two years of life. Identifying clear developmental differences early in life may facilitate earlier identification and intervention that can promote longer-term quality of life. Here we present a systematic review of studies investigating behavioural markers of later autism diagnosis or symptomology taken at 0-6 months.