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1 – 10 of 102Bettina Riese and Raja A.S. Mukherjee
COVID-19 has been challenging for many in the UK. This is no different to many with autism spectrum disorder. Based on the experiences and issues raised by a small group of…
Abstract
Purpose
COVID-19 has been challenging for many in the UK. This is no different to many with autism spectrum disorder. Based on the experiences and issues raised by a small group of autistic women in an ongoing support group, consideration if this holds true for the wider adult autistic community across further lockdowns and restrictions to public life was explored.
Design/methodology/approach
An online questionnaire was created based on the issues raised. Participants indicated the degree to which they agreed or disagreed with each statement.
Findings
Autistic adults experienced an increase in anxiety and poor mental health, which in turn has exacerbated autistic features, such as rigidity. The data indicates that autistic adults can adapt to change provided there is support in maintaining routines.
Research limitations/implications
The research is limited due to the small number of participants (N = 120), as well as national variations in service provision.
Practical implications
Our data raises wider questions about the nature of support for autistic adults without cognitive impairments during times of crises and how services can respond and may even be shaped in the future to provide support that is cost-effective and relevant to autistic adults.
Social implications
To ensure that services have an awareness of how crises impact on autistic adults and how relatively simple changes may avert poor mental health.
Originality/value
That the creation of local support networks, and the ability to access these, is a key feature of autism-specific support.
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Raja A.S. Mukherjee and Mary Ondrusz
Whilst recruitment and retention of high-quality staff is vital to providing a good service, at the time of the evaluations, Kent, Surrey and Sussex (KSS) was the only area of the…
Abstract
Purpose
Whilst recruitment and retention of high-quality staff is vital to providing a good service, at the time of the evaluations, Kent, Surrey and Sussex (KSS) was the only area of the UK without a Higher Specialist Training (HST) scheme in intellectual disability (ID). The purpose of this project was to identify barriers to recruitment and support the need for change.
Design/methodology/approach
This evaluation included conducting interviews with 16 practitioners in the region with links to ID to consider the gaps in training and find solutions.
Findings
Four themes were identified, namely, good experiences are important to recruiting people into the ID field; bad experiences or lack of exposure to people with ID are likely to prevent engagement with this field; there is an ongoing need for specialist psychiatrists in ID services; and there is a developing need for specialists in neurodevelopmental disorders. Finally, the challenge means we need to think differently about developing a workforce. Seven recommendations to support workforce delivery in KSS were developed.
Originality/value
This paper highlights an important rationale for ongoing need for HST in ID work and also reasons to engage people in this field. This has not been undertaken in the ID field in this way previously.
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Raja A.S. Mukherjee, Minahil Nawaz and Terry Joseph
Over the last few years increasing numbers of Autism Spectrum Disorder (ASD) services have been established across the country. The different services use varying models and the…
Abstract
Purpose
Over the last few years increasing numbers of Autism Spectrum Disorder (ASD) services have been established across the country. The different services use varying models and the level of complexity seen in each is unclear. The paper aims to discuss this issue.
Design/methodology/approach
In order to facilitate the development of the next phase of service provision the three geographical areas covered by SABP ASD services were compared. Modified Global Assessment of Functioning (mGAF) scores were calculated for 75 patients from each area before being compared across various domains to identify the complexities in each area covered.
Findings
Overall high levels of complexity were seen, with 85 per cent presenting with a serious or major functional difficulty based on, mGAF scores.
Originality/value
This has planning implications both for commissioners and future service development as previously not identified at a time when services are continuing to expand.
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Rebecca Day, Luke Simmons, Elizabeth Shade, Jo Jennison, Clare S. Allely and Raja A.S. Mukherjee
Recent research has proposed a specific female phenotype within autism spectrum disorder (ASD). It suggests females exhibit differences in social communication styles with higher…
Abstract
Purpose
Recent research has proposed a specific female phenotype within autism spectrum disorder (ASD). It suggests females exhibit differences in social communication styles with higher levels of camouflaging and compensatory strategies, as well as variance in restrictive repetitive behaviours (RRBs); however, many existing studies have been based on either small, disproportionate or child and adolescent samples, leaving questions about the specific phenotype. This study aims to explore the sex difference and phenotype in a clinic sample of individuals diagnosed with autism.
Design/methodology/approach
A service evaluation of sex/ gender differences on 150 historical ASD assessment reports (75 males, 75 females) using a 103-item questionnaire developed from a quantitative review of existing literature was undertaken.
Findings
Females camouflaged more significantly than males in five different areas (thinking how to act next, preparing conversation in advance, making lists of prompts/social responses, wearing a mask/acting, less monotone voice); however, these were not maintained in post-analysis correction.
Originality/value
This study points the evidence towards a different phenotype of Autism that is more common in women than men rather than a unique female phenotype.
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Raja Mukherjee, Michael Layton, Evan Yacoub and Jeremy Turk
Associations between fetal alcohol syndrome (FAS) and other conditions have been reported, but the links between FAS and autistic spectrum disorders (ASD) remain unclear. This…
Abstract
Associations between fetal alcohol syndrome (FAS) and other conditions have been reported, but the links between FAS and autistic spectrum disorders (ASD) remain unclear. This study explored the relationship between FAS and ASD in individuals attending a specialist diagnostic clinic. Consecutive referrals over 24 months to a specialist neurodevelopmental clinic were evaluated using gold standard methods for FAS diagnosis and ASD. The first 18‐month cohort who met criteria for ASD were compared with controls attending the same clinic but who had not experienced prenatal alcohol exposure (nested data). Data for the whole group were also collected. Twenty‐one fetal alcohol spectrum disorder (FASD) individuals were assessed and 16 (72%) met ICD‐10 criteria for childhood autism. Further significant differences between the prenatally exposed and non‐exposed group with ASD were found in the nested study. The research shows an association between heavy prenatal alcohol exposure and ASD. As this is a small sample in a specialist clinic, the study suggests that a larger, more population‐based study of those exposed to heavy prenatal alcohol is warranted.
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Robyn Thomas and Raja Mukherjee
Fetal alcohol spectrum disorder (FASD) is an umbrella term for a range of conditions that may occur in an individual whose mother drank alcohol during pregnancy. There has been…
Abstract
Purpose
Fetal alcohol spectrum disorder (FASD) is an umbrella term for a range of conditions that may occur in an individual whose mother drank alcohol during pregnancy. There has been little research into the experience of birth mothers of children with FASD and no published work of this kind in the UK. This is in contrast to a number of studies that have been conducted on foster/adoptive parents. In light of the recent publication in the UK of a mixed methods study on adoptive carers, it is timely to conduct research on birth mothers in the UK. The purpose of this paper is to explore the experiences of birth mothers following a diagnosis of FASD in their children.
Design/methodology/approach
An interpretive phenomenological analytical approach was used to generate themes from individual semi-structured interviews of five women who are birth mothers of children with FASD.
Findings
Four superordinate main themes and various subthemes were identified. To blame or not to blame captures the tension the mothers experience when considering the cause of their child’s condition. Life is a series of battles which describes the struggles the women experience on a crusade with a renewed sense of purpose that captures the process of transformation that occurs, which helps describe the internal and external factors that help the mothers cope.
Originality/value
FASD is often described in the literature as being completely preventable with the implication that it is the mother’s fault because they drank alcohol during pregnancy. However, a statement like this fails to portray the complexities of the phenomenon of women drinking during pregnancy. Life is difficult for the women for a number of different reasons, yet a sense of hope is present. The mothers have a renewed sense of purpose to do the best they can for their child and to raise awareness of FASD. Understanding their experiences can help service providers better meet the needs of parents and children affected by FASD.
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Mari Sakano, Raja Mukherjee and Jeremy Turk
The purpose of this paper is to explore the profiles of behaviours and adaptive functioning in the UK children and young people with fetal alcohol spectrum disorders.
Abstract
Purpose
The purpose of this paper is to explore the profiles of behaviours and adaptive functioning in the UK children and young people with fetal alcohol spectrum disorders.
Design/methodology/approach
Data of 106 participants registered from 2005 to 2015 were extracted from a clinic database. In total, 99 individuals with confirmed prenatal alcohol exposure (PAE), aged from 5 to 25 years, were analysed using scaled scores of the Vineland Adaptive Behavior Scales-Second Edition (VABS-II), and the Developmental Behaviour Checklist-Primary Carer Version (DBC-P) and Teacher Version (DBC-T). Differences due to age, gender, IQ and family structure (adopted/living with birth parents) were also explored.
Findings
The mean composite adaptive behaviour score on the VABS-II was classified as “low” at 68.2 (SD=8.5), with the socialisation domain being the most impaired. Significantly lower VABS-II composite scores were found in individuals with lower IQ’s, older ages and in males. Disruptive behaviours were the most commonly observed on the DBCs, whereas primary carers scored significantly higher than teachers across all subscales. IQ, age and gender were not associated with the total percentile scores of both DBCs. Adoption made no differences compared to living with birth parents.
Research limitations/implications
Future studies would replicate these findings in a larger sample size including individuals without PAE and those living with birth parents.
Originality/value
This study is the first UK report that examines this issue.
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Foetal alcohol spectrum disorders describes a group of disorders caused by the consumption of prenatal alcohol. The range of outcomes and the clinical management of these…
Abstract
Foetal alcohol spectrum disorders describes a group of disorders caused by the consumption of prenatal alcohol. The range of outcomes and the clinical management of these disorders vary in both the complexity of their presentations, associated disorders and management outcomes. This article seeks to review the literature around some of the more difficult areas associated with the condition and present some insights into possible ways of managing the psychiatric and neurodevelopmental disorders seen in the context of the UK system and the NHS.
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