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A survey of complex trauma in families who have children and adults who have a learning disability and/or autism
- Authors:
- BAKER Peter, et al
- Journal article citation:
- Advances in Mental Health and Intellectual Disabilities, 15(5), 2021, pp.222-239.
- Publisher:
- Emerald
Purpose: There is an established literature supporting the idea that families who have children and adults who have a learning disability and/or autism have a greater vulnerability to mental health problems or poor psychological health. There are shortcomings in this literature in that there is a little consideration of the impact the families interaction with services has on their well-being. It is argued that complex post-traumatic stress disorder (CPTSD), with its focus on prolonged chronic exposure to trauma experiences and the recognition that this can occur in adulthood, may well be an appropriate framework to enable a better understanding of the experiences of families. Design/methodology/approach: A total of 214 family members completed a co-produced online survey in relation to potential traumatic events, impacts and support. Findings: The experiences of family carers of children and adults with a learning disability and/or who are autistic would appear to be multi-layered and complex, with many experiencing a wide range of traumatic events with the associated emotional and personal sequela. The reported responses are consistent with CPTSD with 10% of having received a diagnosis of PTSD. Their experience was that the system failed not only to provide support but also created additional trauma. Practical implications: A trauma-informed approach needs to be adopted by agencies and professionals that serve families to ensure they understand their potential contribution to the trauma families experience. Originality/value: To the best of the authors’ knowledge, this is the first study that has attempted to examine the experience of families using the framework of CPTSD. (Edited publisher abstract)
The COVID-19 pandemic should be last orders for poor care of people with neurodevelopmental disorders
- Authors:
- STRYDOM Andre, CORCORAN Elizabeth, REBILLAT Anne-Sophie
- Journal article citation:
- British Journal of Psychiatry, 218(6), 2021, pp.302-304.
- Publisher:
- Cambridge University Press
We explore whether the needs of individuals with neurodevelopment disorders have been overlooked during the coronavirus disease 2019 (COVID-19) pandemic and set out the issues that need to be considered in response to future health crises and pandemics. (Edited publisher abstract)
The use of community treatment orders in an intellectual disability service
- Authors:
- PERERA Bhathika, SHAIKH Abdul, SINGH Niraj
- Journal article citation:
- Advances in Mental Health and Intellectual Disabilities, 7(3), 2013, pp.129-134.
- Publisher:
- Emerald
An audit was conducted among Consultant Psychiatrists in intellectual disability psychiatry in Nottinghamshire Healthcare NHS Trust to explore how Community Treatment Orders (CTOs) are used in people with intellectual disability in the UK. Each consultant was asked to provide information on demographic data of their patients on CTOs, reasons for being on a CTO, conditions specified, patients' capacity to consent and their understanding of their CTOs. Conditions of CTOs were analysed using thematic analysis. There were 17 CTOs done for patients with intellectual disability from November 2008 to May 2011. Mean age was 38 with a range of 20-59. All patients had a mild or moderate intellectual disability. Only a small percentage of patients had a diagnosis of schizophrenia. More than 50 per cent had a diagnosis of pervasive developmental disorder (PDD). All patients had behavioural problems as a reason for being on a CTO. About one third of patients did not have any understanding of their CTOs. Themes of conditions were focused on providing a structured life to prevent relapse of the mental disorder. The study highlights that CTOs are used differently in the intellectual disability population. CTOs are adapted to use for patients with behavioural challenges and PDD in an intellectual disability population. This contrasts with its common use to manage non-compliance with medication in patients with schizophrenia in the general adult population. This paper also suggests the main themes of conditions which clinicians can use when deciding on CTO conditions. (Edited publisher abstract)
Context influences the motivation for stereotypic and repetitive behaviour in children diagnosed with intellectual disability with and without autism
- Authors:
- JOOSTEN Annette V., BUNDY Anita C., EINFELD Stewart L.
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 25(3), May 2012, pp.262-270.
- Publisher:
- Wiley
Stereotypical and repetitive behaviours are part of normal child development. However while they diminish during the second year in typically developing children they often continue in those with intellectual disability and autism. Motivation seems to change with context, but there is little empirical evidence to support this. Data describing stereotypic behaviours from 279 Revised Motivation Assessment Scales (MAS:R) was evaluated using Rasch analysis. Data were gathered from two groups of Australian children (mean age 9.7 years): Group 1 with intellectual disability (n = 37) and Group 2 with both intellectual disability and autism (n = 37). Behaviour was examined in three contexts: free time, transition and while engaged in tasks. MAS:R distinguishes two intrinsic motivators: enhanced sensation and decreased anxiety and three extrinsic motivators: seeking attention or objects or escape. Significant differences in motivators were observed during free time and transition. No one motivator predominated while children were engaged in tasks. For both groups, sensory enhancement was a more likely motivator in free time and anxiety reduction was a more likely motivator during transition. Transition was the context most likely to influence extrinsic motivators, but there were significant differences between the groups. The authors conclude that context influences the motivation for stereotyped and repetitive behaviours; transition appears to have a particularly powerful effect.
Estimating the prevalence of autism spectrum conditions in adults: extending the 2007 adult psychiatric morbidity survey
- Authors:
- BRUGHA T., et al
- Publisher:
- NHS Information Centre
- Publication year:
- 2012
- Pagination:
- 31p.
- Place of publication:
- London
This report extends the 2007 Adult Psychiatric Morbidity Survey. The original data has been combined with data from a new study of the prevalence of autism among adults with learning disabilities living in private households and communal care establishments in Leicestershire, Lambeth and Sheffield. For this latter study, 290 adults were recruited resulting in 83 interviews with those living in private households. Sixty four per cent of communal care establishments approached took part in the study leading to 207 interviews. The overall prevalence of autism from the combined data was 1.1 per cent. The prevalence of autism was higher in men (2.0 per cent) than women (0.3 per cent). The learning disability study demonstrated that the prevalence of autism increased with greater severity of learning disability/lower verbal IQ. Sex differences were less marked in adults with learning disabilities compared with the general population. The estimated prevalence of autism changed very little when the data were re-analysed to take into account that the prevalence of autism might be higher or lower in other settings, such as prisons. This study has demonstrated that autism is common among people with a learning disability. Taking this into account gives an estimated overall prevalence of autism in England of 1.1 per cent; compared with a previous estimate of 1.0 per cent in the APMS (2007).
A host of opportunities: second NHSN survey of family based short break schemes for children and adults with intellectual and other disabilities in the Republic of Ireland
- Author:
- HANRAHAN Des
- Publisher:
- National Home-sharing and Short Breaks Network
- Publication year:
- 2010
- Pagination:
- 70p., bibliog.
- Place of publication:
- Mullingar
The National Home-Sharing and Short Breaks Network is an association which supports the use, promotion and provision of host family based services for Irish citizens with intellectual disability, physical disability and autism. While the majority of respite services are centre based, the family-based model of providing short breaks to people with disabilities involves recruiting approved individuals, couples and families who agree to provide personalised breaks in their own homes as an alternative to traditional residential respite. In this report the terms short breaks with volunteer host families or paid contract families, and home sharing provided by host families are used in place of respite care and residential care respectively. The report describes the methodology for the questionnaire based survey of 30 schemes, run by 12 separate organisations, that provided overnight breaks with host families. It presents information from the survey about the hosts, the guests, and other issues. It concludes with a discussion of the findings, and makes recommendations for policy makers, managers and further research.
Representation of people with intellectual disabilities in a British newspaper in 1983 and 2001
- Authors:
- WILKINSON Penny, McGILL Peter
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 22(1), January 2009, pp.65-76.
- Publisher:
- Wiley
Articles from The Guardian newspaper in 2001 were analysed and compared to a previous analysis of material published in 1983 the examine the media representation of people with intellectual disabilities. There was much more coverage of people with autism or Down syndrome than expected from their actual frequency in the British population of people with intellectual disabilities. Newspaper reports continued to be about children more often than expected when about autism or Down syndrome, but not when about people with other intellectual disabilities. Medically related representations were less than in the past but juxtaposition with other client groups continued. More 'people-first' terminology was now used except in respect of people with autism. Articles systematically under-represented complexity and severity of need. Policy and service changes may have contributed to the decline of medically- and child-related representations within non-specific intellectual disabilities. The continued over-representation of children in articles about autism and Down syndrome, and the generally increased reference to people with those syndromes, suggests growing differentiation within the population of people with intellectual disabilities. The focus on people with less severe or complex disabilities echoes criticisms of Valuing People.
Levels of anxiety and sources of stress in adults with autism
- Authors:
- GILLOTT Alinda, STANDEN P.J.
- Journal article citation:
- Journal of Intellectual Disabilities, 11(4), December 2007, pp.359-370.
- Publisher:
- Sage
- Place of publication:
- London
Clinical reports suggest that anxiety is a pertinent issue for adults with autism. This study compared 34 adults with autism with 20 adults with intellectual disabilities, utilizing informant-based measures of anxiety and stress. Groups were matched by age, gender and intellectual ability. Adults with autism were almost three times more anxious than the comparison group and gained significantly higher scores on the anxiety subscales of panic and agoraphobia, separation anxiety, obsessive-compulsive disorder and generalized anxiety disorder. In terms of sources of stress, significant differences between the two groups were also found, and stress was found to correlate with high anxiety levels for the autism group, particularly the ability to cope with change, anticipation, sensory stimuli and unpleasant events. That is, the more anxious the individual with autism, the less likely they were able to cope with these demands. This has important implications for clinicians in terms of both assessment and treatment.
Mental health in learning disabilities: a reader
- Editors:
- HOLT Geraldine, HARDY Steve, BOURAS Nick, (eds.)
- Publisher:
- Pavilion
- Publication year:
- 2005
- Pagination:
- 223p.
- Place of publication:
- Brighton
- Edition:
- 3rd ed.
This book, like its previous editions, aims to provide the reader with up-to-date information on mental health problems in people with learning disabilities and associated issues. It has been updated and extended with six additional chapters, to reflect latest developments in services and treatment.
Report of the learning disabilities scoping study setting out the case for a learning disabilities and autism research network in Wales
- Authors:
- FELCE David, KERR Mike, PERRY Jonathan
- Publisher:
- Welsh Centre for Learning Disabilities
- Publication year:
- 2005
- Pagination:
- 37p.
- Place of publication:
- Cardiff
People with learning disabilities are a particularly vulnerable and disadvantaged population with substantially poorer health and well-being than the general population. Research studies internationally are consistent in showing an inverse correlation between objective indicators of physical, material, social and developmental well-being and degree of disability. People with more severe and profound disabilities experience greater inequality in health and quality of life. They experience greater and more complex morbidity and differentially high mortality. Action on such evident disparities is consistent with the Welsh Assembly Government strategic agenda for 2003 - 2007.