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Article
Publication date: 4 April 2016

Helen Willacy

– The purpose of this paper is to describe the impact of having a child with tuberous sclerosis complex (TSC).

Abstract

Purpose

The purpose of this paper is to describe the impact of having a child with tuberous sclerosis complex (TSC).

Design/methodology/approach

The author explains the process her family has been through on their TSC journey.

Findings

Several themes emerge from the author’s story: a lack of awareness about relatively common conditions such as epilepsy; a dearth of accessible information provided to families; delays in identification/assessment and a lack of follow up on parents’ concerns; the wide range in the quality of advice provided from one professional/service to another; the extent to which parents have to advocate for their children and the importance of social support.

Originality/value

Few journal articles explore the impact of complex health conditions on families from their perspective and in their own words. This thought provoking viewpoint piece provides a powerful insight into the reality of having a child with TSC.

Details

Advances in Autism, vol. 2 no. 2
Type: Research Article
ISSN: 2056-3868

Keywords

Article
Publication date: 26 August 2014

Emma Mollison, Eddie Chaplin, Lisa Underwood and Jane McCarthy

Suicide is one of the top three leading causes of death amongst those aged between 15 and 44 years; and tenth leading cause of death in the wider population. The base rates of…

Abstract

Purpose

Suicide is one of the top three leading causes of death amongst those aged between 15 and 44 years; and tenth leading cause of death in the wider population. The base rates of suicide, suicide attempts and suicide-related behaviours are comparably low in the general population with between 17 and 68 per cent of individuals who successfully commit suicide having made a previous attempt to take their own life. As recently as the 1980's it was still a widely held belief that individuals with intellectual disability (ID) did not have the cognitive capacity to experience mental health problems and this acted as a “buffer” against suicidal behaviour. The paper aims to discuss these issues.

Design/methodology/approach

The literature review covered the time period 1993-2013 and returned 117 studies, 77 of which related to individuals with ID, 37 of which related to adults. Following screening titles and abstracts 28 articles were removed. A total of nine studies were found to be eligible for inclusion in the review. A further two studies examining suicide in adolescents (up to adulthood) with ID were also considered. From the eligible studies the following information was considered: study design, sample size, strengths, limitations and the risk factors associated with an increased risk of suicide.

Findings

The suicide risk factors identified during the review were found to be in keeping with the general population and included a diagnosis of clinical depression, history of self-harm, unemployment, loneliness, unemployment, an increased need for support from others, early onset mental illness and being treatment resistive.

Originality/value

Suicide in individuals with ID is a topic that has not received a great deal of attention from professionals and clinicians alike. People with ID have higher rates of mental health problems and therefore it could be argued that they are more likely to be at risk. This study aims to look at risk factors specific to people with ID for clinicians to consider in their daily practice.

Details

Advances in Mental Health and Intellectual Disabilities, vol. 8 no. 5
Type: Research Article
ISSN: 2044-1282

Keywords

Article
Publication date: 1 January 2013

Lisa Underwood, Andrew Forrester, Eddie Chaplin and Jane McCarthy

The purpose of this paper is to review the evidence on providing services to people with neurodevelopmental disorders in prisons, with a focus on those prisoners with autism…

Abstract

Purpose

The purpose of this paper is to review the evidence on providing services to people with neurodevelopmental disorders in prisons, with a focus on those prisoners with autism spectrum disorder (ASD).

Design/methodology/approach

Electronic databases were used to search for literature specifically on ASD in prisons. The literature was supplemented with the authors’ experiences of carrying out research on ASD in prison.

Findings

The searches only identified four articles and therefore the broader literature on people with ASD and other developmental disorders was reviewed in relation to the prison context.

Originality/value

The paper highlights the current limited evidence base on prisoners with autism spectrum disorders.

Details

Journal of Intellectual Disabilities and Offending Behaviour, vol. 4 no. 1/2
Type: Research Article
ISSN: 2050-8824

Keywords

Article
Publication date: 29 October 2015

Jane McCarthy, Eddie Chaplin and Lisa Underwood

– The purpose of this paper is to provide a summary of English policy and legislation which impacts on the health outcomes and social inclusion for adults with autism.

355

Abstract

Purpose

The purpose of this paper is to provide a summary of English policy and legislation which impacts on the health outcomes and social inclusion for adults with autism.

Design/methodology/approach

A descriptive review of national policy for England was undertaken using key internet search engines such as Google.

Findings

In spite of innovative legislation and policy relating to autism across England, there are still wide discrepancies in both service models and provision relating to autism. More work is required to communicate what autism services should look like along with greater awareness training for professionals working with adults with autism to ensure reasonable adjustments are occurring across public services.

Originality/value

This paper outlines current key policy and legislation in England relating to autism.

Details

Advances in Autism, vol. 1 no. 2
Type: Research Article
ISSN: 2056-3868

Keywords

Article
Publication date: 4 April 2016

Clare Pinkerton Stuart

Tuberous Sclerosis Australia (TSA) is a small rare disease organisation with a large scope. TSA was established in 1981 as a peer support organisation. Since then, its role has…

Abstract

Purpose

Tuberous Sclerosis Australia (TSA) is a small rare disease organisation with a large scope. TSA was established in 1981 as a peer support organisation. Since then, its role has evolved to meet the needs of its members: individuals living with tuberous sclerosis complex (TSC), their families and health professionals. The paper aims to discuss these issues.

Design/methodology/approach

This case study describes the diverse activities of TSA which include, but are not limited to: the provision of information and support services; sponsorship of research and fostering a network of TSC health professionals. The benefits of collaborations forged under the umbrella organisation TSC International are highlighted.

Findings

The case study demonstrates some of the key challenges TSA faces, challenges shared by many similar health charities. These include: funding of health education and promotion activities; working with a large range of health professionals and the challenge of research fatigue.

Originality/value

There is little research published describing the work of small disease specific organisations similar to TSA. This case study provides insight for those collaborating with similar organisations including health professionals and researchers.

Details

Advances in Autism, vol. 2 no. 2
Type: Research Article
ISSN: 2056-3868

Keywords

Article
Publication date: 4 April 2016

Charlotte Tye, Kandice Varcin, Patrick Bolton and Shafali Spurling Jeste

Tuberous sclerosis complex (TSC) is a genetic disorder with a high prevalence of autism spectrum disorder (ASD), yet no single genetic, neurological or neurophysiological risk…

1115

Abstract

Purpose

Tuberous sclerosis complex (TSC) is a genetic disorder with a high prevalence of autism spectrum disorder (ASD), yet no single genetic, neurological or neurophysiological risk marker is necessary or sufficient to increase risk for ASD. This paper aims to discuss the utility of adopting a developmental perspective.

Design/methodology/approach

The increasing number of TSC infants presenting with abnormalities prenatally provides a unique opportunity to study risk pathways to ASD from birth. Here, the authors review findings to date that support the investigation of infants with TSC to further our understanding of typical and atypical development.

Findings

Evidence has accumulated from studies of infants at familial risk for ASD (“baby siblings”) to suggest that early markers of ASD are present in the first year of life. The early waves of prospective studies of infants with TSC indicate dynamic changes in developmental trajectories to ASD and are likely to provide insight into cascading effects of brain “insult” early in development. Emerging evidence of phenotypic and biological homology between syndromic and idiopathic cases of ASD supports the notion of a convergence of risk factors on a final common pathway in ASD.

Originality/value

The delineation of brain-based biomarkers of risk, prediction and treatment response in TSC will be critical in aiding the development of targeted intervention and prevention strategies for those infants at high risk of poorer developmental outcomes.

Details

Advances in Autism, vol. 2 no. 2
Type: Research Article
ISSN: 2056-3868

Keywords

Article
Publication date: 4 April 2016

Loren Leclezio and Petrus de Vries

Tuberous Sclerosis Complex (TSC) is associated with many learning, behavioural, neurodevelopmental and psychiatric difficulties. Over 90 per cent of those with TSC will have some…

Abstract

Purpose

Tuberous Sclerosis Complex (TSC) is associated with many learning, behavioural, neurodevelopmental and psychiatric difficulties. Over 90 per cent of those with TSC will have some of these concerns, yet typically no more than 20 per cent receive support and treatment. The purpose of this paper is to provide an overview of TSC-Associated Neuropsychiatric Disorders (TAND), explore barriers to identification and management of TAND, and propose possible next steps to improve assessment and treatment of TAND.

Design/methodology/approach

The paper combines a brief review of the multiple levels of TAND with a conceptual analysis of barriers and potential facilitators to assessment and intervention for TAND.

Findings

Results suggest that the perceived uniqueness of TAND leads to treatment paralysis for most healthcare professionals, thus explaining the assessment and treatment gap seen for TAND. This may in part be due to the multi-dimensionality of TAND, and in part due to lack of access to clear, useful and evidence-based resources for TAND.

Research limitations/implications

Identification of natural TAND clusters through machine-based learning and data reduction methodologies may yield a manageable number of natural groups of TSC-related neuropsychiatric problems, for which a basic “toolkit” of evidence-based interventions could be developed.

Practical implications

Families and clinicians will benefit from a toolkit of tried and tested resources and evidence-based information to guide further investigation and management of TAND.

Originality/value

Even though individuals will have unique TAND profiles, there may be key natural TAND clusters – combinations of behaviours across multi-dimensional levels – that will simplify and improve access to further evaluation, treatment and neuroscientific research.

Article
Publication date: 8 September 2014

Eddie Chaplin, Ilias Partsenidis, Blessing Samuriwo, Lisa Underwood and Jane McCarthy

– The purpose of this paper is to examine how substances misuse impacts on exposure to the criminal justice system for people with intellectual disabilities (ID).

Abstract

Purpose

The purpose of this paper is to examine how substances misuse impacts on exposure to the criminal justice system for people with intellectual disabilities (ID).

Design/methodology/approach

An electronic case-register of mental health patients was used to examine the clinical records of 411 patients with ID. χ2 analysis was performed to test the association between variables and logistic regression to generate estimates for statistically significant association variables.

Findings

Of 411 cases, 98 (23 per cent) of patient had a history of substance use, with affective disorders strongly associated with alcohol misuse χ2=4.135, df=1 (p<0.042), similarly statistically significant predictor for alcohol misuse OR: 1.7, 95 per cent CI (1.02-2.72) (p<0.043). Patients with a history of offending behaviour had three-folds higher risk to misuse drugs compared to those without a forensic conviction OR: 3.17, 95 per cent CI (1.35-7.44) (p<0.008). Those with a history of offending were more likely to have had a history of substance use.

Originality/value

Substance use and its impact on offending by people with ID is still poorly understood. This paper adds new information to this under researched area.

Details

Journal of Intellectual Disabilities and Offending Behaviour, vol. 5 no. 3
Type: Research Article
ISSN: 2050-8824

Keywords

Content available
Article
Publication date: 2 October 2017

Eddie Chaplin and Jane McCarthy

333

Abstract

Details

Advances in Autism, vol. 3 no. 4
Type: Research Article
ISSN: 2056-3868

Content available
Article
Publication date: 8 September 2014

Colin Dale

79

Abstract

Details

Journal of Intellectual Disabilities and Offending Behaviour, vol. 5 no. 3
Type: Research Article
ISSN: 2050-8824

11 – 20 of 42