It is suggested that autism assessments are not sensitive to the female autism presentation. Autistic women are often misdiagnosed or delayed in receiving their diagnosis. More guidance for assessing clinicians is required to improve the validity and effectiveness of autism diagnostic assessments of women. This study aims to explore the experiences of autistic women during their diagnostic assessments and understand what they considered important for diagnostic assessments of females.
A focus group with four adult autistic women was conducted, exploring their experiences and recommendations. Thematic analysis was used to identify overarching themes.
The main themes were 1) experience of the assessment; 2) gender-sensitive assessment content; and 3) clinician characteristics and skills. Participants made specific recommendations within these themes for how diagnostic assessments of females should be conducted.
This study differs from previous research by focusing on the experiences of autistic women specifically during diagnostic assessments and what they recommend for future assessments.
Grace Trundle, Zoe Alexander, Verity Chester
Read researchPeople with intellectual disabilities (IDs) typically present with co-occurring communication difficulties. Research indicates that cognitive-linguistic impairment is predictive of poor health literacy, which can preclude individuals from developing a comprehensive understanding of their health, care and treatment needs. People accessing forensic intellectual and developmental disability (FIDD) services are more likely to engage meaningfully in treatment and rehabilitation only if they feel empowered to play active roles in their own care. Delivering proposed treatment programmes in an accessible format, which meets their language needs, is likely to promote this.
This paper aims to describe the development and evaluation of an easy read version of the “Ten point treatment programme” within an inpatient FIDD service. An expert panel comprising speech and language therapists and education professionals utilised a quality improvement method to develop this. Patients and staff evaluated this resource and gave feedback through surveys or meetings. The resource was refined based on responses, and a final version produced.
The easy-read Ten-Point Treatment programme resource was considered valuable by patients and staff from this service.
Future research should seek to pilot this resource, to explore alternative multi-modal means of accessible information provision coproduced at every level and to examine ways in which this resource could be incorporated within health-care consultations. Another research direction will be to assess the impact of this resource on comprehension, drawing upon objective, previously validated measures.
Provision of an easy-read version of the Ten-Point Treatment Programme may support individuals with communication difficulties to understand health and care information relevant to their inpatient admission and may empower them to take more active roles in their treatment pathway. It is important to acknowledge, however, that easy read is not an accessible means of information provision for all individuals with ID and that the empirical evidence for its impact is limited.
Ayomipo Jeremiah Amiola, Hollyanna Wilson, Elizabeth Patteril, Verity Chester, Regi Alexander
Read researchPsychopathy is a construct that is characterized by shallow emotions, lack of empathy or remorse, callousness, and poor behavioral control.
We recruited autistic psychiatric inpatients into our study, and their clinical teams completed the Psychopathy Checklist—Short Version (PCL:SV) to see how well this measure worked with autistic adults. Our results indicated that higher PCL:SV scores were associated with poorer treatment progress, a longer length of stay, and previous criminal offending and aggressive behavior 12-months later.
Kate Maguire, Magali Barnoux, Josie Collins, Clare L. Melvin, Ismay Inkson, Regi T. Alexander, John Devapriam, Conor Duggan, Lee Shepstone, Ekkehart Staufenburg, Paul Thompson, David Turner, Essi Viding, Peter E. Langdon
Read researchGovernment policy in the UK is emphasising a shift from inpatient to community-based management of those with intellectual disabilities and forensic needs. However, community services can be reluctant to accept patients deemed ready for discharge by inpatient forensic teams, and this leading to delayed discharges. An evidence-based discharge communication tool based on a comprehensive needs assessment is therefore required for patients with intellectual disabilities and forensic needs.
The purpose of this paper is to describe the development and implementation of the What I Need (WIN) plan in a Community Forensic Intellectual Disability Team. The WIN plan aims to create an effective discharge communication tool through carrying out a needs assessment based on the Camberwell Assessment of Need – Forensic Version (CANFOR).
The team and its stakeholders have observed several benefits following implementation of the WIN plan. The WIN is patient led and generates constructive dialogue around needs, risks and strengths between the patient, their family/carers and staff/clinicians. It is multidisciplinary, efficient to complete and collates information on individual patients’ current and historical forensic risks and needs in one document.
Clarke, S., Smith, A., Chester, V., Patteril, E. & Alexander, R.T.
Read researchKumar, M., Sawhney, I., Chester, V., Alexander, R., Mitchell, J. and Shankar, R.
Read researchHypothyroidism is a chronic health condition which causes physical, cognitive and psychiatric symptoms. The prevalence of hypothyroidism in adults with intellectual disabilities is under researched. Hypothyroidism was examined among 463 patients within an outpatient intellectual disability psychiatric team. Clinic records were utilised for this study, including sociodemographic, psychiatric and physical health diagnoses. Among the 463 patients, 43 (9%) had hypothyroidism. Compared to those without hypothyroidism, the hypothyroid group were significantly older, more likely to be female, and had increased rates of high cholesterol, diabetes, Down's Syndrome and dementia. Rates of hypothyroidism within this cohort of patients with intellectual disabilities were high (9%). The results suggest hypothyroidism in intellectual disability should be the focus of prospective research, in larger, more representative samples. This study indicates a need for increased awareness of, and resources for hypothyroidism in health services.
Chester, V., Cherukat, M., Smith, N., Patteril, E., Sawhney, I., Zia, A. and Alexander, R.
Read researchDiagnosed with hypothyroidism in 2019 after years of ill health, Verity reflects on her personal challenges managing the condition. This inspired them to investigate a critical, under-researched question: how do individuals with learning disabilities, a group already facing significant healthcare barriers, experience hypothyroidism?
The article calls for healthcare professionals and advocacy groups to raise awareness, improve support systems, and ensure care for individuals with learning disabilities navigating hypothyroidism.
Chester, V.
Read researchSelective serotonin reuptake inhibitors (SSRIs) are commonly prescribed to manage anxiety in adults with an autism diagnosis. However, their effectiveness and adverse effect profile in the autistic population are not well known. This trial aims to determine the effectiveness and cost-effectiveness of the SSRI sertraline in reducing symptoms of anxiety and improving quality of life in adults with a diagnosis of autism compared with placebo and to quantify any adverse effects.
Dheeraj Rai, Doug Webb, Amanda Lewis, Leonora Cotton, Jade Eloise Norris, Regi Alexander, David S. Baldwin, Traolach Brugha, Madeleine Cochrane, Maria Chiara Del Piccolo, Emma J. Glasson, Katherine K. Hatch, David Kessler, Peter E. Langdon, Helen Leonard, Stephanie J. MacNeill, Nicola Mills, Maximiliano Vazquez Morales, Zoe Morgan, Raja Mukherjee, Alba X. Realpe, Ailsa Russell, Sergio Starkstein, Jodi Taylor, Nicholas Turner, Joanna Thorn & Jack Welch, on behalf of the STRATA autistic advisory group & Nicola Wiles
Read researchMental health comorbidity is higher in those with learning disability; in the absence of a full and robust diagnostic clarification, diagnostic overshadowing is a particular problem. Central to this concept is attribution of symptoms to an existing diagnosis rather than a potential co-morbid condition. Clinicians need to be aware of the dire consequences of diagnostic overshadowing including misattribution, underdiagnosis, misdiagnosis, delayed and or poor treatment, stigmatization and consequently a reduction in the quality of life. This is a case report of a young male with mild LD with longstanding mental health and behavioural problems who was described as having a personality disorder in the community. Facing multiple charges of assault, the court, on medical advice, gave him a hospital order to a medium secure unit for people with learning disabilities where he went through a detailed and systematic diagnostic evaluation. This revealed several new findings including the diagnosis of a 22q11.2 Duplication Syndrome. In this case, physical impairments associated with 22q11.2 Duplication Syndrome affected patient’s presentation and were wrongly formulated as representative of a Personality Disorder. The atypical autism, learning disability and co-existing mental illness further complicated the picture. Positively, the genetic test and the identification of a syndrome provided valuable clinical insight and significantly altered the nature, course, and pathway of treatment, including ultimately the patient’s quality of life. This resulted in a successful discharge back to the community from a secure hospital setting. In addition, this case report highlights previously unreported findings: Cochlear Nerve Atresia, Tubular Vision, a characteristic groove, and skin fold on the back of the scalp and the presence of a schizoaffective mental illness.
Singh, A., Amiola, A., Temple, P., Maplanka, C., Gunaratna, I., Chester, C.
Read researchThe needs of carers of those discharged from inpatient forensic intellectual disability (ID) services are under researched. The role of the carer changes significantly during the transition from the person being cared for by the inpatient service, to a community setting. The carer may feel responsible for managing mental, physical and forensic needs. Therefore, carers of those with ID and forensic needs in the community require specialist support and understanding. Following the establishment of a new community ID team in Norfolk, the lack of guidelines for supporting this unique group of carers was noted. As such, a carers strategy with multiple components was initiated. This paper describes the implementation of a carers strategy to provide specific support to this cohort. It highlights the lack of research on this topic and the importance of working with external stakeholders.
Freeman, C., Perez-Olivas, G., Patteril, E., & Chester, V.
Read researchIntellectual disabilities (ID) are lifelong conditions characterized by deficits in general intellectual functioning and adaptive skills with onset in the developmental period. Globally, the prevalence of ID varies by age and the prevalence in older adults is considerably lower than that in the general population indicating that people with ID (PWID) may have shorter life spans. Despite the substantially increased mean life expectancy compared to the past, PWID continue to experience poor care often dying twenty years earlier than others. Higher rates of mental illnesses, increased risk of physical health morbidity and mortality and advancing age worsen their health disadvantage. There is very limited evidence that the treatment needs of the elderly patient group with ID and a mental illness have either been described or addressed. We aimed to conduct a baseline audit and service evaluation describing the sociodemographic, clinical and treatment variables of elderly patients (aged over 65 years) attending a specialist out-patient psychiatry clinic for PWID, compliance with the suggested audit standards for this group, and make recommendations for future clinical practice. Results are presented in tabular form, with extensive psychiatric and physical health morbidity highlighted. Compliance with audit scores also suggested significant gaps in physical health care and monitoring. There is a need for close working relationships between the patient, carers, health and social care professionals at all levels to mitigate these issues and larger scale audits involving multiple centres are needed to further improve quality of service offered to this patient group.
Amiola, A., Temple, P., Singh, A., Manilka Brahmana, M., Rayala, M., & Gunaratna, I.
Read researchSeminars in the Psychiatry of Intellectual Disability
Devapriam J & Alexander, R.T.
Read researchFiction has the potential to dispel myths and helps improve public understanding and knowledge of the experiences of under-represented groups. Representing the diversity of the population allows individuals to feel included, connected with and understood by society. Whether women and girls with autism spectrum disorder (ASD) are adequately and accurately represented in fictional media is currently unknown. The paper aims to discuss this issue.
Tharian, P., Henderson, S., Wathanasin, N., Hayden, N., Chester, V., & Tromans, S.
Read researchThis is the second of two special issues focussing on autistic women and girls. Part One, published in March 2019, included a diverse range of papers, including the journey to diagnosis (Zener, 2019), relationships (Kock et al., 2019), mental health comorbidity and forensic involvement (Chaplin and McCarthy, 2019; Markham, 2019), camouflaging (Allely, 2019), and representation within the fictional media (Tharian et al., 2019). The editorial for this issue was entitled “Autistic women and girls: under-recognised, under-researched and under-served” (Chester, 2019) reflecting the additional difficulties faced by females with ASD.
Chester, V.
Read researchThe purpose of this paper is to explore the perspectives of healthcare professionals on autism in adult females with intellectual disability (ID), including regarding the gender ratio of autism, the clinical manifestation of autism in females, and the recognition, screening and diagnosis of autism.
Tromans, S., Chester, V., Kapugama, C., Elliott, A., Robertson, S., & Barrett, M.
Read research