Episode 5: Caring for Minds: Anxiety and Mental Health in Rare Syndromes

In this fifth episode, Dr Marie Dunnion invites Cerebra Network Leads, Dr Jane Waite and Dr Hayley Crawford, to talk about their mental health research.Jane, a clinical psychologist and researcher at Aston University, and Hayley, an Associate Professor at the University of Warwick, both specialise in rare genetic syndromes and understanding the development of mental health conditions in people with intellectual disabilities and neurodevelopmental conditions. In this episode, they discuss mental health and anxiety and share practical tools and interventions to support families. Jane has also made the Cerebra Network’s research more accessible for parent carers and clinicians through the FIND website: https://findresources.co.uk/See below for links to resources, charities, support services, and related research:Cerebra Network WebsitesCerebra Network Website – a UK-wide research team dedicated to improving the lives of people with neurodevelopmental conditions and rare genetic syndromes.Further Inform Neurogenetic Conditions (FIND) WebsiteCharities and Support ServicesAffinity Hub – supporting parents of disabled children and adults and signposting to professional support.Autistica - the UK’s leading autism research and campaigning charityCerebra Charity Website – the national charity dedicated to helping children with brain conditions and their families discover a better life together.ResearchDivergent presentation of anxiety in high-risk groups within the intellectual disability populationPrevalence of anxiety symptomatology and diagnosis in syndromic intellectual disability: a systematic review and meta-analysisDiverse profiles of anxiety related disorders in fragile X, Cornelia de Lange and Rubinstein–Taybi syndromesUtilising interview methodology to inform the development of new clinical assessment tools for anxiety in autistic individuals who speak few or no words A systematic review of the behaviours associated with depression in people with severe-profound intellectual disabilityDevelopment and psychometric properties of the Clinical Anxiety Scale for People with Intellectual Disabilities (ClASP-ID)Behavioural and physiological indicators of anxiety reflect shared and distinct profiles across individuals with neurogenetic syndromes – cortisol/behaviour study.Differential effects of anxiety and autism on social scene scanning in males with fragile X syndrome – eye-tracking study.A behavioural assessment of social anxiety and social motivation in fragile X, Cornelia de Lange and Rubinstein-Taybi syndromesAnxiety in autistic individuals who speak few or no words: a qualitative study of parental experience and anxiety managementResourcesAnxiety guide for autistic individuals who speak few or no words: Anxiety in autistic children with learning disabilities: A guide Cerebra Parent Carer Guide: AnxietyCLASP-ID Manual Request FormMy Communication Passport – a practical and person-centred way of supporting children, young people and adults who cannot easily speak for themselves.For any enquiries, please complete the contact form on our website: CONTACT | Cerebra Network