Parents' and professionals' views on autistic motherhood using a participatory research design

Research on autistic women’s experience of parenthood is lacking. In this paper, two studies are presented. Study 1 comprised a small-scale qualitative study with autistic mothers (n = 9) in which their experiences of motherhood were explored using thematic analysis. The findings showed that participants identified a range of strengths, including connection with their children, high knowledge about childhood, a reflective style of parenting, good coping strategies, identifying with their autism diagnosis, and not caring what others thought. They also identified difficulties, including sensory challenges, coping with uncertainty and change, having to socialise, managing exhaustion, and being taken seriously by professionals involved with their children. Guided by the findings of Study 1, and in collaboration with an advisory panel of autistic mothers, an online survey using mixed methods was completed by education and social professionals (n = 277) to investigate their understanding of, and attitudes towards, autism in women and mothers. Results showed high awareness and positive attitudes towards autism, but low levels of self-efficacy in working with autistic adults. Qualitative content analysis of open-ended questions shed light on challenges and rewards of working with autistic parents. The findings are discussed with reference to the double empathy problem (Milton, 2012) and implications for training of professionals

York ISL Supported Living Service Evaluation

A service evaluation of ISL's Living Service in the city of York. Mixed methods data were collected from among residents, staff, and parents. Findings indicate the diversity of residents and detail the largely positive experiences of living independently in the service. The Report offers recommendations for continued development

Collaborative competence in dialogue: : Pragmatic language impairment as a window onto the psychopathology of autism

Background: Pragmatic language, including conversational ability, can be difficult for people with autism. Difficulties with dialogue may reflect impairment in interpersonal engagement more than general language ability. Method: We investigated conversational abilities among children and adolescents with and without autism (n = 18 per group) matched for language proficiency and productivity. Videotaped conversations from the Autism Diagnostic Observational Schedule (ADOS, Lord, Rutter, DiLavore, & Risi, 2001) were rated according to the Collaborative Competence in Dialogue (CCD) scale featuring six verbal and non-verbal ‘cues’ that conversational partners use to sustain dialogue. Results: Participants with autism produced significantly fewer ‘typical’ communicative cues and more cues rated as intermittent or rote/stereotyped, even when non-verbal items (gaze) were removed from consideration. Within the autism group, competence in dialogue was not correlated with ‘general’ language ability, but was correlated with a measure of pragmatic ability. Conclusions: Difficulties with collaboration in dialogue may mirror the intermittent or incomplete interpersonal engagement of children with autism. Implications: Assessment of language ability in autism should include observation in unstructured social settings

The Relationship Development Assessment - Research Version: Preliminary validation of a clinical tool and coding schemes to measure parent-child interaction in autism.

The aim of this project was to replicate and extend findings from two recent studies on parent-child relatedness in autism (Beurkens, Hobson, & Hobson, 2013; Hobson, Tarver, Beurkens, & Hobson, 2013, under review) by adapting an observational assessment and coding schemes of parent-child relatedness for the clinical context and examining their validity and reliability. The coding schemes focussed on three aspects of relatedness: joint attentional focus (Adamson, Bakeman, & Deckner, 2004), the capacity to co-regulate an interaction and the capacity to share emotional experiences. The participants were 40 children (20 with autism, 20 without autism) aged 6-14, and their parents. Parent-child dyads took part in the observational assessment and were coded on these schemes. Comparisons were made with standardised measures of autism severity (Autism Diagnostic Observation Schedule, ADOS: Lord, Rutter, DiLavore, & Risi, 2001; Social Responsiveness Scale, SRS: Constantino & Gruber, 2005), relationship quality (Parent Child Relationship Inventory, PCRI: Gerard, 1994) and quality of parent-child interaction (Dyadic Coding Scales, DCS: Humber & Moss, 2005). Inter-rater reliability was very good and, as predicted, codes both diverged from the measure of parent-child relationship and converged with a separate measure of parent-child interaction quality. A detailed profile review revealed nuanced areas of group and individual differences which may be specific to verbally-able school-age children. The results support the utility of the Relationship Development Assessment - Research Version for clinical practice

Proof of Concept of a Smartphone App to Support Delivery of an Intervention to Facilitate Mothers’ Mind-Mindedness

The present study reports on the first evaluation of a parenting intervention utilizing a smartphone app, BabyMind. The intervention aimed to facilitate mothers’ mind-mindedness—attunement to their infants’ internal states. Mothers in the intervention group (n=90) used the BabyMind app from their infants’ births and were followed up at age 6 months (n=66). Mothers in the control group (n=151) were recruited when their infants were age 6 months and had never used the BabyMind app. Mind-mindedness when interacting with their infants was significantly higher in intervention group mothers than in control group mothers. The intervention was equally effective in facilitating mind-mindedness in young and older mothers. These findings are discussed in terms of the potential for interventions utlizing smartphone apps to improve parenting and children’s developmental outcome in vulnerable and hard-to-reach groups

Five-Year Follow Up of a Low Glycaemic Index Dietary Randomised Controlled Trial in Pregnancy—No Long-Term Maternal Effects of a Dietary Intervention

Objective: To determine whether a dietary intervention in pregnancy had a lasting effect on maternal outcomes of diet, HbA1c and weight retention 5 years post-intervention; and to establish whether modifiable maternal behaviours were associated with these outcomes. Design: Randomised control trial of low glycaemic index (GI) diet in pregnancy with longitudinal follow up to 5 years post-intervention. Setting: Dublin, Ireland (2007–2016). Population: In all, 403 women of 759 (53.1%) were followed up at 5 years. A total of 370 (intervention n = 188; control n = 182) were included in this analysis. Methods: Fasting glucose was measured at 13 and 28 weeks’ gestation and HbA1c (mmol/mol) at 5-year follow up. Weight retention (kg) from early pregnancy to 5 years post-intervention was calculated. Dietary intakes, anthropometry, and lifestyle factors were measured in pregnancy and 5 years post-intervention. Multiple linear regression models, controlling for confounders, were used for analysis. Outcome: Maternal diet, HbA1c, and weight retention at 5 years post-intervention. Results: There was no difference between the intervention and control at 5 years post-intervention for any long-term maternal outcomes measured. HbA1c at 5 years post-intervention was associated with early-pregnancy fasting glucose (B 1.70, 95% CI 0.36–3.04) and parity ≥3 (B 1.04, 95% CI 0.09–1.99). Weight retention was associated with change in well-being from pregnancy to 5 years (B −0.06, 95% CI −0.11 to −0.02), gestational weight gain (B 0.19, 95% CI 0.00–0.38), and GI (B 0.26, 95% CI 0.06–0.46) at 5 years. Conclusions: The ROLO low-GI dietary intervention in pregnancy had no impact on maternal dietary intakes, HbA1c or body composition 5 years post-intervention. Maternal factors and lifestyle behaviours in pregnancy have long-term effects on glucose metabolism and weight retention up to 5 years later. Tweetable abstract: Pregnancy factors are associated with maternal glucose metabolism and weight retention 5 years later

Translation and preliminary validation of a Korean version of the parental reflective functioning questionnaire

This study aimed to explore the factor structure, reliability, and validity of a Korean translation of the Parental Reflective Functioning Questionnaire (PRFQ). The PRFQ consists of three subscales: prementalizing modes , certainty about mental states , and interest and curiosity in mental states . A convenience sample of 163 Korean parents completed the K‐PRFQ. Exploratory factor analysis showed three factors mapped on to the original PRFQ factors, but items from the original prementalizing modes subscale clustered into two additional factors. Data from a subsample (n = 67) showed that the certainty about mental states and interest and curiosity in mental states subscales correlated positively with more optimal self‐reported parenting. We discuss the validity of using the PRFQ in collectivistic culture

Parental Mentalization Across Cultures: Mind-mindedness and Parental Reflective Functioning in British and South Korean Mothers

Differences in mind-mindedness and Parental Reflective Functioning (PRF) were investigated in mothers and their 6-month-old infants from South Korea (N=66, 32 girls) and the United Kingdom (N=63, 26 girls). Mind-mindedness was assessed in terms of appropriate and non-attuned mind-related comments during infant–mother interaction; PRF was assessed using a questionnaire. British mothers commented more on infant desires and preferences, whereas Korean mothers commented more on cognitions and emotions, but there were no cultural differences in overall levels of mind-mindedness. For PRF, Korean mothers reported more certainty about their infants’ mental states compared with their British counterparts, but there were no cultural differences in mothers’ reported interest in their infants’ mental states. Greater reported certainty about infants’ mental states was positively related to self-reported parenting quality in both cultural groups, but this association was not seen for parenting quality as assessed observationally. Mind-mindedness and PRF were unrelated in both Korean and British mothers. Results are discussed in terms of the Korean concept of mother–¬infant oneness and the multi-dimensional nature of parental mentalization

Translation and preliminary validation of a Korean version of the Parental Reflective Functioning Questionnaire

This study aimed to explore the factor structure, reliability, and validity of a Korean translation of the Parental Reflective Functioning Questionnaire (PRFQ; Luyten, Mayes, Nijssens, & Fonagy, 2017). The PRFQ consists of three subscales: Pre-mentalizing modes, Certainty about mental states, and Interest and curiosity in mental states. A convenience sample of 163 Korean parents completed the K-PRFQ. Exploratory factor analysis showed three factors mapped on to the original PRFQ factors, but items from the original Pre-mentalizing modes subscale clustered into two additional factors. Data from a subsample (n=67) showed that the Certainty about mental states and Interest and curiosity in mental states subscales correlated positively with more optimal self-reported parenting. We discuss the validity of using the PRFQ in collectivistic cultures

Guided participation and parental tutoring in preschool children with autism: A pilot study of Relationship Development Intervention (RDI)

The guided participation relationship between parents and children, whereby parents sensitively support the child’s emerging abilities, is central to child development. However, difficulties with intersubjective engagement characteristic of autism can make supportive interactions between parents and children more challenging. In this study, we compared dyads of parents and children with autism (n = 16) and dyads of parents and children with other developmental disabilities (n = 14) on two coding schemes, the Dyadic Coding Scales (DCS) and a Parent Scaffolding coding scheme. Consistent with expectations, the ASD group showed more difficulties in parent–child engagement on the DCS. Although autistic children were more likely to resist parental input on the Parent Scaffolding task, their parents were equally as sensitive as those in the developmental disabilities group. Child factors on the Parent Scaffolding coding scheme were associated with DCS scores. Half (n = 8) of the children with autism received an academic school year-long modified version of Relationship Development Intervention delivered in a preschool setting, and all children with autism (n = 16) were re-assessed at the end of the preschool year. The dyads who had received RDI showed improvements in parent–child engagement on the DCS, both compared to baseline and compared to the group who did not receive the intervention. No changes in Parent Scaffolding were found. The results are discussed in relation to intervention priorities for children with autism