"It's a learning curve throughout your entire life": Experiences and impact of FASD in adolescence explored in online photovoice research.

BACKGROUND: Research into the lived experience and disability of Fetal Alcohol Spectrum Disorder (FASD) is sparse in adolescence, despite its relevance to supports and life outcomes. AIMS: The study explored adolescents' lived experiences of FASD and access to support across home, school, and community. METHODS AND PROCEDURES: An online photovoice study was undertaken with eight young people (age 12-19, in education), integrating an Interpretative Phenomenological Analysis (IPA) approach. The research process comprised two individual interviews, group training, individual photo-taking, and group sessions for photo analysis/ dissemination. OUTCOMES AND RESULTS: Participant-led analysis of their photos identified how activities at home and in the community had functions of relaxation, sensory gratification, and enabled concentration. Researcher-led analysis found that young people identified with the disability of FASD through experiences at home and school. While they acknowledged the value of support and relationships, education was not always an inclusive experience. CONCLUSIONS AND IMPLICATIONS: Participatory online research allowed insight into the impact of FASD as a disability and underlines a consistent need for support in adolescence and the transition into adulthood. Young people with FASD require explicit support to develop their advocacy skills to improve educational outcomes.

'Someone like-minded in a big place': Autistic young adults' attitudes towards autistic peer support in mainstream education.

LAY ABSTRACT: Autistic young people may struggle in mainstream schools and feel disconnected from their peers and their school. We know that autistic adults can benefit from spending time with other autistic people, but we don't know if this is the case for younger autistic people. We conducted interviews with 13 autistic young adults in the United Kingdom who recently left mainstream schooling. We asked them if they would have been interested in being involved in autistic peer support when they were at school, and if so, what that peer support should look like. Results indicated that autistic young people were enthusiastic about the idea of peer support. They thought it was important that peer support was flexible to suit their needs at different times, as well as inclusive, positive, and embracing neurodiversity. They also discussed the potential benefits and difficulties of having a peer support system within a school setting. This adds to the growing body of research on the potential benefits of autistic-autistic interactions on autistic people's well-being and sense of belonging. Findings can be used to help design pilot peer support projects in schools that can be tested to see how effective they are.

Psychological distress and positive gain in mothers of children with autism, with or without other children with neurodevelopmental disorders.

Although a wealth of literature has focused on the parenting experiences of mothers of children with autism spectrum disorder (ASD), there is a lack of research about mothers who are parenting a child with ASD, and who have other children with neurodevelopmental disorders. In this matched-comparison study, 10 mothers of a child with ASD and other typically developing children (ASD-TD) were compared to 10 mothers of a child with ASD who also had other children with neurodevelopmental disorders (ASD-NDD). Mothers completed self-report measures of mental health and positive gain. Results indicated no significant between-group differences for mental health, although mothers in the ASD-NDD group reported increased positive gain compared to mothers in the ASD-TD group. Further research is needed to understand practical support needs and theory development.

Siblings of children with Williams syndrome: Correlates of psychosocial adjustment and sibling relationship quality.

BACKGROUND: Previous research has examined adjustment in parents of children with Williams syndrome (WS), but little is known about sibling outcomes. AIMS: To explore sibling adjustment and relationship quality, and their demographic, psychological and behavioural phenotypic correlates from the perspective of caregivers and siblings in families of children with WS. METHODS AND PROCEDURES: Forty-one caregivers of children with WS participated in this questionnaire study on the adjustment and relationship quality of the siblings. In 31 of these families, self-report data were also provided by the siblings themselves. Data were also gathered on potential correlates, including anxiety and social functioning in the child with WS, caregiver mental health, and sibling social support. OUTCOMES AND RESULTS: Sibling adjustment was similar to population norms, though significantly increased caregiver-reported emotional difficulties were found. Siblings reported greater behavioural, emotional and relationship difficulties than caregivers perceived them to have. Some significant associations were found between the behaviour of the child with WS, sibling behaviour problems and sibling relationship quality. CONCLUSIONS AND IMPLICATIONS: A picture of relatively positive sibling adjustment and relationships emerged, but findings of individual differences and some emotional difficulties emphasise the need for an individualised approach to support in families of children with WS.

Siblings' experiences of growing up with children with autism in Taiwan and the United Kingdom.

BACKGROUND: A child's diagnosis of autism impacts their whole family, in both positive and negative ways, that may be influenced by cultural beliefs. AIMS: We aimed to describe the experiences of mothers and typically-developing siblings of children with autism in two cultural contexts. METHODS: Fourteen mother-sibling dyads from Taiwan and the UK participated in semi-structured interviews. RESULTS: Whilst there were similarities in sibling experiences, a negative tone regarding the influence of autism was more evident in Taiwan, where families also cited societal judgement and cultural-specific expectations. In the UK, a more balanced tone was apparent: mothers emphasised educating and involving the siblings. It is speculated that UK siblings had a greater understanding of their parents' stress, leading to more adaptive family dynamics. Various types of support service were mentioned in the UK, whereas the availability of social services and support appeared to be relatively limited in Taiwan. IMPLICATIONS: Our data suggest that cultural context may have a significant impact on the responses of the family members. This is mediated by both differences in attitudes and traditions, and availability of resources. Support for family members needs to be sensitive to such cultural differences, as well as recognising positive experiences.

Siblings of Children with Autism: the Siblings Embedded Systems Framework.

PURPOSE OF REVIEW: A range of interacting factors/mechanisms at the individual, family, and wider systems levels influences siblings living in families where one sibling has autism. We introduce the Sibling Embedded Systems Framework which aims to contextualise siblings' experience and characterise the multiple and interacting factors influencing family and, in particular, sibling outcomes. RECENT FINDINGS: Findings from studies that have reported outcomes for siblings of children with autism are equivocal, ranging from negative impact, no difference, to positive experience. This is likely due to the complex nature of understanding the sibling experience. We focus on particular elements of the framework and review recent novel literature to help guide future directions for research and practice including the influence of culture, methodological considerations, and wider participatory methods. SUMMARY: The Siblings Embedded System Framework can be used to understand interactive factors that affect sibling adjustment and to develop clinically, educationally and empirically based work that aims to enhance and support sibling adjustment, relationships, and well-being in families of children with autism.

The Role of the Broader Autism Phenotype and Environmental Stressors in the Adjustment of Siblings of Children with Autism Spectrum Disorders in Taiwan and the United Kingdom.

The influence of the broader autism phenotype (BAP) on the adjustment of siblings of children with autism has previously been researched mainly in Western cultures. The present research evaluated a diathesis-stress model of sibling adjustment using a questionnaire study including 80 and 75 mother-typically developing sibling dyads in Taiwan and the United Kingdom (UK). UK siblings reported elevated adjustment difficulties compared to the Taiwanese sample and to normative data. Whilst higher BAP levels were generally associated with greater adjustment difficulties, differences were found across cultures and respondents. Although significant diathesis-stress interactions were found, these were in the opposite direction from those predicted by the model, and differed across cultural settings. Implications for culturally-sensitive sibling support are considered.

Emotion Recognition in Children With Down Syndrome: Influence of Emotion Label and Expression Intensity.

Some children with Down syndrome may experience difficulties in recognizing facial emotions, particularly fear, but it is not clear why, nor how such skills can best be facilitated. Using a photo-matching task, emotion recognition was tested in children with Down syndrome, children with nonspecific intellectual disability and cognitively matched, typically developing children (all groups N = 21) under four conditions: veridical vs. exaggerated emotions and emotion-labelling vs. generic task instructions. In all groups, exaggerating emotions facilitated recognition accuracy and speed, with emotion labelling facilitating recognition accuracy. Overall accuracy and speed did not differ in the children with Down syndrome, although recognition of fear was poorer than in the typically developing children and unrelated to emotion label use. Implications for interventions are considered.

Applied behavior analysis programs for autism: sibling psychosocial adjustment during and following intervention use.

Psychosocial adjustment in siblings of children with autism whose families were using a home-based, applied behavior analysis (ABA) program was compared to that of siblings in families who were not using any intensive autism intervention. Data gathered from parents, siblings and teachers indicated that siblings in ABA families experienced neither significant drawbacks nor benefits in terms of their behavioral adjustment, sibling relationship quality and self-concept compared to control group siblings, either during or following intervention use. Parents and siblings perceived improvements in sibling interaction since the outset of ABA, with parents somewhat more positive in their views than were siblings. Social support was associated with better sibling outcomes in all groups. Implications for supporting families using ABA are considered.