Lived experiences of depression in autistic children and adolescents: A qualitative study on child and parent perspectives.

BACKGROUND: Depression is highly prevalent in autistic children and adolescents. Despite this, little is known about the nature of the autistic child's subjective experience of depression and the impact of depression on their lives. METHODS: We therefore conducted a qualitative study using thematic analysis with 7 autistic children and adolescents and their parents to identify common themes and individual differences. All children had previously experienced at least one depressive episode. RESULTS: Six main themes were identified: (1) Autism related experiences; (2) Difficulties with peer relationships; (3) Co-occurring relationships between anxiety and depression; (4) Impactful pessimism and anhedonia; (5) Impactful difficulties with focus and concentration and (6) Feelings of irritability, including aggressive behaviours. Parent's accounts of their children's experience of depression mirrored the child's perspective. Novel findings included reports of depression related restriction of diet variety and masking of mental health difficulties. Children and parents linked being autistic and developing depression, referring to the difficulties of being autistic in a complex, neurotypical world. CONCLUSIONS: These results highlight key challenges that autistic children and their families experience, calling for increased awareness of the impact of depression on autistic young people.

A clinical and cost-effectiveness trial of a parent group intervention to manage challenging restricted and repetitive behaviours in young children with autism spectrum disorder: study protocol for a randomised controlled trial.

BACKGROUND: Restricted and repetitive behaviours vary greatly across the autism spectrum, and although not all are problematic some can cause distress and interfere with learning and social opportunities. We have, alongside parents, developed a parent group based intervention for families of young children with autism, which aims to offer support to parents and carers; helping them to recognise, understand and learn how to respond to their child's challenging restricted repetitive behaviours. METHODS: The study is a clinical and cost-effectiveness, multi-site randomised controlled trial of the Managing Repetitive Behaviours (MRB) parent group intervention versus a psychoeducation parent group Learning About Autism (LAA) (n = 250; 125 intervention/125 psychoeducation; ~ 83/site) for parents of young children aged 3-9 years 11 months with a diagnosis of autism. All analyses will be done under intention-to-treat principle. The primary outcome at 24 weeks will use generalised estimating equation (GEE) to compare proportion of children with improved RRB between the MRB group and the LAA group. The GEE model will account for the clustering of children by parent groups using exchangeable working correlation. All secondary outcomes will be analysed in a similar way using appropriate distribution and link function. The economic evaluation will be conducted from the perspective of both NHS costs and family access to local community services. A 'within trial' cost-effectiveness analysis with results reported as the incremental cost per additional child achieving at least the target improvement in CGI-I scale at 24 weeks. DISCUSSION: This is an efficacy trial to investigate the clinical and cost-effectiveness of a parent group based intervention designed to help parents understand and manage their child's challenging RRB. If found to be effective, this intervention has the potential to improve the well-being of children and their families, reduce parental stress, greatly enhance community participation and potential for learning, and improve longer-term outcomes. TRIAL REGISTRATION: Trial ID: ISRCTN15550611 Date registered: 07/08/2018. Sponsor and Monitor: Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust R&D Manager Lyndsey Dixon, Address: St Nicholas Hospital, Jubliee Road, Gosforth, Newcastle upon Tyne NE3 3XT, lyndsey.dixon@cntw.nhs.uk , Tel: 0191 246 7222.

Pragmatic language and the child with emotional/behavioural difficulties (EBD): a pilot study exploring the interaction between behaviour and communication disability.

INTRODUCTION: The relationship between mental health, behaviour and language development is widely recognized in the literature. Recent advances in assessment tools allows one to consider the role of pragmatic language skills in this co-occurrence. AIMS: This pilot study aimed to investigate (1) the level of association between pragmatic language difficulties and emotional/behavioural difficulties; and (2) what explanations there might there be for any such association. The roles of language, word decoding, and non-verbal cognitive ability and also socio-demographic factors are considered. METHOD & PROCEDURES: Seventeen participants aged 7-11 years were identified from Educational Psychologist caseloads as having behaviour that is causing concern at school. Comparisons were made with 16 age- and sex-matched controls. Participants' language, literacy and non-verbal cognitive ability were assessed at school. Parents and teachers completed questionnaires investigating communication skills, behaviour and emotional wellbeing. OUTCOMES & RESULTS: No significant difference was found between the groups for non-verbal cognitive ability. However, children in the referred group were significantly more likely to have structural language, word decoding and pragmatic language difficulties and mothers with no further education beyond school. Taking a broad view of language skills to include structural language, pragmatic language and word decoding, 94% (n = 15) of referred children had significant difficulties with at least one of these three factors. The only factor not found on its own was structural language difficulties, indicating that on their own they are perhaps not associated with emotional/behavioural difficulties. CONCLUSIONS & IMPLICATIONS: The results of this pilot study have implications for how we view language and behaviour difficulties in primary schools. Future larger-scale research should consider the role of parenting factors, pragmatic language skills and literacy ability in the high co-existence rate of emotional/behavioural difficulties and language/communication needs.