Parents’ experiences from participating in an infant sibling study of autism spectrum disorder

Achermann, Sheila; Bölte, Sven; Falck‐Ytter, Terje

doi:10.1016/j.rasd.2019.101454

Cited by 6 publications

(3 citation statements)

References 34 publications

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“…Within the TIARA study, parents prove to be particularly interested in the individual research findings of their young child, a dynamic which has equally been reported in a similar Swedish study [11]. This should not be a surprise knowing that the participating child has been described as 'being at-risk for autism' even before the first study assessment took place.…”

Section: Autism)mentioning

confidence: 94%

Ethics of returning children’s individual research findings: from principles to practice

Vanaken

Noens

Roeyers

et al. 2020

Eur Child Adolesc Psychiatry

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Little ethical recommendations on returning children's individual research findings are available for researchers in behavioral sciences, especially when compared to genetic research. Anecdotic evidence suggests that since parents are often interested in their child's individual research findings, researchers tend to offer this information as a form of compensation for research participation. Despite good intentions, these practices are not without potential harmful consequences for children. We were confronted with these difficulties and with the paucity of available guidance on this topic, being involved in a longitudinal, infant development study, i.e. Tracking Infants At Risk for Autism (TIARA).Firstly, we review current ethical recommendations and discuss their limitations in the light of the TIARA study. Secondly, we will suggest to revise these recommendations, by identifying and applying the relevant bioethical principles and concepts at hand. Thirdly, as an example of practical implementation, the adopted 'return of research findings'-policy for the TIARAstudy is presented.The principles and concepts we engage with are the ancillary care responsibilities of the researcher, non-maleficence and beneficence, the right to an open future of the child, and the avoidance of therapeutic misconception.Ultimately, we present the concrete return of research findings policy implemented in the TIARA-study. Here, we suggest restricting systematic return of children's individual research findings to cases where findings are considered clinically significant and actionable for the child. We discuss the broader implications for designing and conducting research in behavioral sciences with children.

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Section: Autism)mentioning

confidence: 94%

Ethics of returning children’s individual research findings: from principles to practice

Vanaken

Noens

Roeyers

et al. 2020

Eur Child Adolesc Psychiatry

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“…Approximately half an hour after arriving at the lab, the experimental task reported in this article was administrated, which took about 10 min. The experimental task was followed by several other assessments including developmental assessments, eye tracking sessions, play observation, and parent–child interaction (plus breaks as needed; Achermann et al, 2020 ).…”

Section: Methodsmentioning

confidence: 99%

Motor atypicalities in infancy are associated with general developmental level at 2 years, but not autistic symptoms

Achermann

Nyström

Bölte

et al. 2020

Autism

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Atypical motor development has frequently been reported in infants at elevated likelihood for autism spectrum disorder. However, no previous study has used detailed motion capture technology to compare infant siblings of children with autism spectrum disorder and infant siblings with no familial history of autism spectrum disorder. We investigated reaching movements during an interceptive action task in 10-month-old infants using kinematic data with high spatiotemporal resolution. The results indicated that several measures were different in infants at elevated likelihood. However, longitudinal analyses revealed that while specific infant motor measures (e.g. number of movement units) were related to broad measures of general developmental level in toddlerhood, the associations with later autism spectrum disorder symptomatology were not significant. These findings confirm that some aspects of motor functioning are atypical in infants at elevated likelihood for autism spectrum disorder, but provide no support for the view that these issues are specifically linked to autism spectrum disorder symptoms, but may rather reflect neurodevelopment more generally. Lay abstract Atypicalities in motor functioning are often observed in later born infant siblings of children with autism spectrum disorder. The goal of our study was to investigate motor functioning in infants with and without familial history of autism spectrum disorder. Specifically, we investigated how infants catch a ball that is rolling toward them following a non-straight path, a task that requires both efficient planning and execution. Their performance was measured using detailed three-dimensional motion capture technology. We found that several early motor functioning measures were different in infants with an older autistic sibling compared to controls. However, these early motor measures were not related to autistic symptoms at the age of 2 years. Instead, we found that some of the early motor measures were related to their subsequent non-social, general development. The findings of our study help us understand motor functioning early in life and how motor functioning is related to other aspects of development.

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“…The behaviors of autistic children are quite different from other normal children. May have limited, repetitive patterns of behavior, interests, or activities, including any of these signs, that is, performing repetitive movements, such as rocking, spinning, or hand flapping (Achermann et al, 2020).…”

Section: Introductionmentioning

confidence: 99%

Frequency of visual impairment in autistic children of autism school of Lahore, Pakistan

Amin

Tariq

Arshad³

et al. 2023

British Journal of Visual Impairment

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Autism is a condition in which abnormal development of the brain takes place, manifesting in the first 3 years of life. Visual impairment is one of the major factors of autism spectrum disorder (ASD), and measurement of visual impairment is necessary for proper management of the disorder. The purpose of this study is to determine the frequency of visual impairment associated with ASD in Lahore Pakistan. A descriptive cross-sectional study was conducted. A convenient and purposive sample of 127 students enrolled in various autism schools of Lahore was enrolled. Written informed consent of teacher’s autistic children was taken. Children having diseases like cerebral palsy, other developmental disorders, and/or serious cognitive disability were excluded from this study. Participant’s undergone ocular assessment including visual acuity, ocular motility examination, refraction, and fundoscopy. Data analysis was performed using SPSS-20 and Pearson’s chi-square analysis was conducted to determine the associations of refractive error and squint with ASD. A total of 127 participants were included in this study, of which 77 (60.6%) were male and 50 (39.4%) were female. More than 60% were emmetropes (having no refractive errors), 19 (15%) were having myopes, 15 (11.8%) were hypermetropic, and 9 (7.1%) were Astigmatic, while 20 were diagnosed with a squint. The major cause of visual impairment in autistic children was refractive errors 33.8% and squint 15.7%. A high frequency of visual impairment was present in autistic children in Lahore autistic schools. As vision is a basic right so we have to pay attention also toward autistic children, in that way every child should have screened for factors that are responsible for visual impairments, Identifying refractive errors in these children early and providing appropriate corrective lenses may help optimize their visual functioning and impact their activities of daily life positively.

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Parents’ experiences from participating in an infant sibling study of autism spectrum disorder

Cited by 6 publications

References 34 publications

Ethics of returning children’s individual research findings: from principles to practice

Ethics of returning children’s individual research findings: from principles to practice

Motor atypicalities in infancy are associated with general developmental level at 2 years, but not autistic symptoms

Frequency of visual impairment in autistic children of autism school of Lahore, Pakistan

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