People with Intellectual Disability (ID) and epilepsy are more likely to experience psychiatric conditions, challenging behaviour (CB), treatment resistance and adverse effects of anti-seizure medications (ASM) than those without. This population receives care from various professionals, depending on local care pathways. This study evaluates the training status, confidence, reported assessment and management practices of different professional groups involved in caring for people with ID, epilepsy and CB.
A cross sectional survey using a questionnaire developed by expert consensus which measured self-reported training status, confidence, and approaches to assessment and management of CB in people with ID and epilepsy was distributed to practitioners involved in epilepsy and/or ID.
Kinney, M. O., Chester, V., Tromans, S., Alexander, R.T., Angus-Leppan, H., Bagary, M., Cock, H., Devapriam, J., Hassiotis, A., Mula, M., Reuber, M., Ring, H., Roy, A., Scheepers, M., & Shankar, R.
Read researchThe coronavirus disease 2019 (COVID-19) pandemic has had a profound impact on both the physical and mental well-being of the global population. Relatively few studies have measured the impact of lockdown on utilisation of secondary mental health services in England.
Tromans., S., Chester, V., Harrison, H., Pankhania, P., Booth, H., & Chakraborty, N.
Read researchRapid spread of coronavirus disease 2019 (COVID-19) has affected people with intellectual disability disproportionately. Existing data does not provide enough information to understand factors associated with increased deaths in those with intellectual disability. Establishing who is at high risk is important in developing prevention strategies, given risk factors or comorbidities in people with intellectual disability may be different to those in the general population.
Perera, B., Laugharne, R., Henley, W., Zabel, A., Lamb, K., Branford, D., … Shankar, R.
Read researchThe approach taken to support individuals during the coronavirus disease 2019 (COVID-19) pandemic needs to take into account the requirements of people with intellectual disabilities and/or autism, who represent a major vulnerable group, with higher rates of co-occurring health conditions and a greater risk of dying prematurely. To date, little evidence on COVID-related concerns have been produced and no report has provided structured feedback from the point of view of people with intellectual disabilities and/or autism or of their family/carers.
The aims of this study were to provide systemised evidence-based information of the priority concerns for people with intellectual disabilities and/or autism regarding the COVID-19 pandemic.
Tromans, S., Kinney, M., Chester, V., Alexander, R., Roy, A., Sander, J.W., Dudson, H. & Shankar. R.
Read researchPeople with neurodevelopmental disorders often present with challenging behaviours and psychiatric illnesses. Diagnosis and
treatment require patients, families and healthcare professionals to work closely together in partnership, acknowledging their
respective areas of expertise. Good treatment outcomes should also be underpinned by robust research evidence. Key research
priorities are highlighted.
Alexander, R.T., Langdon, P.E., O'Hara, J., Howell, A., Lane, T., Tharian, R., Shankar, R.
Read researchIt has been proposed that autistic individuals are at an increased risk of type 1 and type 2 diabetes. Improved understanding of diabetes prevalence in autistic persons will help inform resource allocation for diabetes-related public health measures for this patient group.
The objective of this report is to conduct a systematic review of published literature pertaining to type 1 and type 2 diabetes prevalence in autistic individuals, including comparison with their non-autistic peers.
Tromans, S.J., Yao, G., Mukaetova-Ladinska, E., Kiani, R., Alexander, R., Al-Uzri, M., Morgan, Z., Chester, V., & Brugha, T.
Read researchThis report aims to provide an up-to-date review of the current evidence base, clarify the diagnostic process and summarise the management of ADHD in the ID population. It aims to guide psychiatrists working with people with ID to identify and treat comorbid ADHD. The report discusses factors that need to be considered and the value of screening and diagnosing ADHD alongside the pitfalls of not recognising it. It then goes
further and extrapolates from the evidence available in people with ADHD without an ID.
Royal College of Psychiatrists
Read researchA guest editorial in 'Advances in Autism', Volume 7, Issue 3.
Chester, V.
Read researchThe purpose of the paper is to review autism identification across different ethnic groups. Diagnosis of autism may be missed or delayed in certain ethnic groups, leading to such groups being underserved relative to their needs. This can result in members of such groups being effectively denied essential avenues of support that can substantially improve the quality of life of autistic persons as well as those whom care for them.
Tromans, S., Chester, V., Gemegah, E., Roberts, K., Morgan, Z., Yao, Q.L., & Brugha, T.
Read researchThe purpose of this paper is to provide a commentary on “being diagnosed with autism in adulthood: a personal case study”.
Many individuals are not diagnosed with autism until their adult life, and as a result, miss the benefits of timely introduction of sources of support, such as during their schooling. Receiving an autism diagnosis can come as a relief and promote self-understanding, but availability of high-quality post-diagnostic support services and accommodating employers are both highly important.
Tromans, S. & Chester, V
Read researchAutistic women and girls have received comparatively less attention within clinical practice and research. Research suggests women tend to be diagnosed later than men, and are more likely to experience misdiagnosis.
This paper aims to report a narrative literature review that examines research on the presentation, recognition, and diagnosis of autistic women and girls.
Driver, B. & Chester, V.
Read researchAttention-deficit hyperactivity disorder (ADHD) is common among people with intellectual disability. Diagnosing ADHD in this clinically and cognitively complex and diverse group is difficult, given the overlapping psychiatric and behavioural presentations. Underdiagnoses and misdiagnoses leading to
irrational polypharmacy and worse health and social outcomes are common. Diagnostic interviews exist, but are cumbersome and not in regular clinical use.
We aimed to develop a screening tool to help identify people with intellectual disability and ADHD.
Sawhney, I., Perera, B., Bassett, P., Zia, A., Alexander, R. T., & Shankar, R.
Read researchWorking with Autistic People in the Criminal Justice and Forensic Mental Health Systems: A Handbook for Practitioners is the first book to focus specifically on best practice for working with autistic people in criminal justice and forensic mental health settings. Integrating current theory, research, and clinical practice, this book provides a practical guide for multidisciplinary practitioners working with autistic people who have offended, at all stages in their pathway, regardless of the nature of offending.
The book draws together contributions from leading scholarly and clinical experts in the field of autism and forensic issues as well as the views of autistic people under the care of forensic services. Each chapter focuses on understanding the impact of autism throughout the criminal justice and forensic mental health system pathways, including how these systems are experienced by autistic people and their families and carers. Case studies and practical approaches are provided to demonstrate the application of best practice to working with autistic people in secure settings.
Chester, V., Driver, B., & Alexander, R.T.
Read researchDiagnosing personality disorders (PDs) in persons with intellectual disability (PwID) or those with both intellectual disability and autism spectrum disorder (PwID-ASD) can be challenging since it requires subjective information about thoughts and emotions and adequate communication skills. This is compounded by a lack of clarity relating to core concepts of personality disorder in this population as well as a blurring of boundaries between personality, autism, psychiatric illness and problem behaviours. The longstanding and integral maladaptive patterns of cognition, emotion and behaviour impact significantly on psychosocial functioning and incur high societal costs. As important moderators of mental state and physical disorders, PDs impact significantly on general wellbeing and the ability of individuals to thrive in the community. Overall, there is a paucity of good quality studies about PDs in PwID, and hence, treatment strategies are largely extrapolated from empirical evidence in the general population. This chapter summarises the diagnosis, assessment, epidemiology, aetiology, treatments and treatment outcomes within the context of the current evidence base.
Cooray, S.E., Alexander, R., Purandare, K., Chester, V., Tyrer, P.
Read researchThe treatment of vulnerable defendants by criminal justice systems or correctional systems varies within and between countries. The purpose of this paper is to examine three legal jurisdictions – New South Wales in Australia; Norway; England and Wales – to understand the extent of variation in practice within the court systems for defendants with intellectual disabilities (ID) and/or autism spectrum conditions (ASC). Two of the jurisdictions had a process for screening in place, either in police custody or at court, but this was not universally implemented across each jurisdiction. All three jurisdictions had a process for supporting vulnerable defendants through the legal system. Across the three jurisdictions, there was variation in disposal options from a mandatory care setting to hospital treatment to a custodial sentence for serious offences. This variation requires further international exploration to ensure the rights of defendants with ID or ASC are understood and safeguarded.
Cooray, S.E., Alexander, R., Purandare, K., Chester, V., Tyrer, P.
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