Group CBT for men with intellectual disabilities and/or autism who have harmful sexual behaviour.

OBJECTIVES: Men with intellectual disabilities and/or autism sometimes engage in harmful sexual behaviour (HSB), but it may be harder for them to access treatment, than it is for non-disabled men. The aim of this study was to evaluate the effect of attending an adapted CBT group, known as SOTSEC-ID, on men with intellectual disabilities and/or autism who had HSB. METHOD: Ninety-eight men from intellectual disability services, who had ID and/or autism and a history of HSB were recruited, and they received group CBT for a year (46 of these men have been previously reported). Harmful sexual behaviour, sexual knowledge, distorted cognitions and victim empathy were measured before and after treatment, and at 6 month follow-up. RESULTS: There were low levels of further harmful sexual behaviour: 12% of men engaged in further HSB during the 1-year period of the group, and 8% engaged in further HSB in the 6-month follow-up period. There were also significant improvements in sexual knowledge, distorted cognitions and victim empathy following treatment, maintained at 6-month follow-up. Men with autism showed significantly more non-contact HSB, were less likely to have been interviewed by police and had higher rates of further HSB, compared to men without autism. CONCLUSIONS: It is concluded that SOTSEC-ID is a promising treatment for men with ID/autism and HSB. Nevertheless, the study had a number of limitations and lacked a control group, so there is now an urgent need for a proper controlled study.

Detection and prevention of abuse of adults with intellectual and other developmental disabilities in care services: A systematic review.

BACKGROUND: The abuse of adults with intellectual and developmental disabilities in care services seems to be relatively common, although there are anecdotal suggestions that abuse may be predictable and preventable. METHOD: Evidence related to how abuse is detected and prevented within services was reviewed. Database and ancestry searches were conducted, and the methodological quality of studies assessed using the mixed methods appraisal tool. RESULTS: A total of 48 articles were reviewed. The characteristics of victims, perpetrators and organisations were summarised. Several recommendations for how abuse can be detected and prevented were made, including better staff training, supervision and monitoring of services. The quality of studies limits the reliability and validity of research findings. CONCLUSION: Risk and protective factors related to the abuse of adults with intellectual and other developmental disabilities remain largely consistent. Further research is required to support the implementation of recommendations aimed to detect and prevent abuse.

The experiences of mothers of children and young people with intellectual disabilities during the first COVID-19 lockdown period.

BACKGROUND: Recent COVID-19 lockdown restrictions resulted in reduced access to educational, professional and social support systems for children with intellectual disabilities and their carers. AIM: The aim of this study was to gain insight into the ways mothers of children with intellectual disabilities coped during the first 2020 lockdown period. METHODS: Eight mothers of children with intellectual disabilities were interviewed. The recordings of these interviews were subjected to a thematic analysis. RESULTS: Three main themes were identified: carrying the burden; a time of stress; and embracing change and looking to the future. CONCLUSIONS: All mothers experienced increased burden and stress. However, some also described some positive impact of lockdown conditions on them as well as on their child's well-being and behaviour. These findings are discussed in the light of the (Journal of Applied Research in Intellectual Disabilities, 33, 2020, 1523) survey results on parental coping and suggestions for future service provision during pandemic conditions are proposed.

Life after release from prison: The experience of ex-offenders with intellectual disabilities.

BACKGROUND: In the UK, little is known about the experience of ex-prisoners with intellectual disabilities. METHOD: A qualitative study was therefore conducted to investigate what life is like for ten men with intellectual disabilities who left prison at least 9 months previously. Semi-structured interviews were employed to explore the men's views of post-prison life, including opportunities/challenges and support received from services. RESULTS: Through interpretative phenomenological analysis, four over-arching themes were constructed: the nature of support and services, the difficulty of staying out of trouble, the importance of family and the need to act the "tough guy". The participants reported being extremely under-supported. They were often hostile about staff who they felt were too focused on their previous crime. CONCLUSIONS: In general, men were very under-supported and the upheavals of post-prison lives appeared to be "normalized" by them. Better understanding of their lives within their social context would benefit their community re-entry.

"I feel that if I didn't come to it anymore, maybe I would go back to my old ways and I don't want that to happen": Adapted sex offender treatment programmes: Views of service users with autism spectrum disorders.

BACKGROUND: The cognitive and behavioural profile associated with autism spectrum disorders (ASD) includes difficulties with social interaction, communication and empathy. Each of these may present barriers to effective participation in sexual offending treatment, leading to poorer outcomes. METHOD: Semi-structured interviews were conducted with 13 men with autism and an intellectual disability (including the borderline range) who had completed an adapted sex offender treatment programme. Grounded Theory was used to explore the men's experiences of treatment and perceptions of risk. RESULTS: The men's perceptions of sexual risk were inextricably linked to constructs of identity and shaped their opinions of treatment effectiveness. Risk of reoffending was conveyed through narratives of changes in self and circumstances and included notions of blame and culpability. CONCLUSIONS: The findings illustrated some clear benefits for men with ASD associated with attending adapted sex offender treatment programmes, including delivery of treatment within groups and opportunities for social development. The study supports the view that difficulties with empathy and cognitive flexibility complicates treatment for sexual offending.

Experiences of going to court: Witnesses with intellectual disabilities and their carers speak up.

BACKGROUND: People with intellectual disabilities are more vulnerable to sexual abuse and are more disadvantaged in the criminal justice system than the general population. However, little is known about the experiences of people with intellectual disabilities who have allegedly been victims of sexual abuse and also been witnesses in court. MATERIALS AND METHODS: This study used semi-structured interviews and a Grounded Theory approach to examine the experiences of four people with intellectual disabilities and four carers/supporters who had all attended trials. RESULTS: Findings showed that after the traumatic incident of abuse, a court experience could become a secondary source of trauma. Experience of this trauma was dependent on the quality and quantity of support people received and the understanding of intellectual disabilities amongst the legal participants. CONCLUSION: The findings argue for better training for legal participants who are in contact with vulnerable witnesses and better support structures for alleged victims.

Effect of the COVID-19 pandemic on the mental health of carers of people with intellectual disabilities.

INTRODUCTION: The measures implemented to manage the COVID-19 pandemic have been shown to impair mental health. This problem is likely to be exacerbated for carers. METHOD: Informal carers (mainly parents) of children and adults with intellectual disabilities, and a comparison group of parents of children without disabilities, completed an online questionnaire. Almost all the data were collected while strict lockdown conditions were in place. RESULTS: Relative to carers of children without intellectual disability, carers of both children and adults with intellectual disability had significantly greater levels of a wish fulfilment coping style, defeat/entrapment, anxiety, and depression. Differences were 2-3 times greater than reported in earlier pre-pandemic studies. Positive correlations were found between objective stress scores and all mental health outcomes. Despite their greater mental health needs, carers of those with intellectual disability received less social support from a variety of sources. CONCLUSIONS: The greater mental health needs of carers in the context of lesser social support raises serious concerns. We consider the policy implications of these findings.

An evaluation of staff training in positive behavioural support.

BACKGROUND: Positive Behavioural Support (PBS) has been shown to be effective in minimizing challenging behaviour and improving the lives of people with intellectual disabilities. Training in PBS is an important factor in achieving good coverage in the use of PBS. The aim of this study was to evaluate the impact of training managers of social care services in PBS. METHOD: A year-long training programme in PBS was delivered to 50 managers of community-based services for people with challenging behaviour. Data were collected pre- and post-training, and at six month follow-up. A non-randomized control group design was used. RESULTS: Data demonstrated significant reduction in challenging behaviour. However, there was no change in quality of life for service users. CONCLUSION: Training in PBS can reduce challenging behaviour in people with intellectual disabilities; demonstrating any impact of PBS training on quality of life remains a challenge.

Social networks of adults with an intellectual disability from South Asian and White communities in the United Kingdom: A comparison.

BACKGROUND: Little research exists comparing the social networks of people with intellectual disability (ID) from South Asian and White backgrounds. This UK study reports on the barriers that South Asian people with intellectual disability face in relation to social inclusion compared to their White counterparts. MATERIALS AND METHODS: A mixed-methods research design was adopted to explore the social lives of 27 men (15 White; 12 South Asian) and 20 women (10 White; 10 South Asian with intellectual disability). Descriptive and parametric tests were used to analyse the quantitative data. RESULTS: The average network size of the whole group was 32 members. South Asian participants had more family members whilst White participants had more service users and staff in their networks; 96% network members from White intellectual disability group were also of White background, whilst the South Asian group had mixed ethnic network members. CONCLUSIONS: Social networks of individuals with intellectual disability in this study were found to be larger overall in comparison with previous studies, whilst network structure differed between the White and South Asian population. These differences have implications relating to future service planning and appropriateness of available facilities.

An Investigation into the use of the Deprivation of Liberty Safeguards with People with Intellectual Disabilities.

BACKGROUND: This small, qualitative study sought to develop a richer understanding of the way in which the deprivation of liberty safeguards (DOLS) were being used for people with intellectual disabilities. It is important to note that this study was completed prior to the changes resulting from the P v Cheshire West and Chester Council judgement. METHOD: Six DOLS cases were identified and two people involved in each case were interviewed (care home managers, key workers, social workers, specialist nurses or psychologists), using semi-structured interviews. The data were analysed using grounded theory techniques. RESULTS: The interviewees described DOLS as providing a framework leading to positive outcomes for the people they supported, in some cases avoiding inpatient stays. However, they had a number of concerns including lack of knowledge and training, potential under use of DOLS and disappointment with case law. CONCLUSION: Overall, these findings are encouraging in regard to the specific individuals for whom DOLS applications were made; however, they also highlight the need for a stronger agenda regarding wider dissemination of information, and training about DOLS, as well as some reform.

Screening Prisoners for Intellectual Disabilities in Three English Prisons.

BACKGROUND: Prisoners with intellectual disabilities are known to be disadvantaged in prisons and to be more susceptible to bullying, segregation, depression and anxiety than other prisoners. METHOD: In this study, nearly 3000 new prisoners entering three English prisons were offered screening for intellectual disabilities, using the LDSQ. RESULTS: On average, 75% of all new prisoners entering prison were offered screening, and only 14% refused screening. Overall, just less than 7% were screened positive on the LDSQ and prisons made some reasonable adjustments as a result. CONCLUSIONS: It is argued that it is feasible to screen for intellectual disabilities in prisons and, given the inequalities to which prisoners with intellectual disabilities are subject in prison, it is time for such screening to be rolled out to all prisons.

Stigma in youth with Tourette's syndrome: a systematic review and synthesis.

Tourette's syndrome (TS) is a childhood onset neurodevelopmental disorder, characterised by tics. To our knowledge, no systematic reviews exist which focus on examining the body of literature on stigma in association with children and adolescents with TS. The aim of the article is to provide a review of the existing research on (1) social stigma in relation to children and adolescents with TS, (2) self-stigma and (3) courtesy stigma in family members of youth with TS. Three electronic databases were searched: PsycINFO, PubMed and Web of Science. Seventeen empirical studies met the inclusion criteria. In relation to social stigma in rating their own beliefs and behavioural intentions, youth who did not have TS showed an unfavourable attitude towards individuals with TS in comparison to typically developing peers. Meanwhile, in their own narratives about their lives, young people with TS themselves described some form of devaluation from others as a response to their disorder. Self-degrading comments were denoted in a number of studies in which the children pointed out stereotypical views that they had adopted about themselves. Finally, as regards courtesy stigma, parents expressed guilt in relation to their children's condition and social alienation as a result of the disorder. Surprisingly, however, there is not one study that focuses primarily on stigma in relation to TS and further studies that examine the subject from the perspective of both the 'stigmatiser' and the recipient of stigma are warranted.

Validation of the social communication questionnaire amongst Nigerian adolescents.

Few autism spectrum disorder (ASD) screening tools have been developed and validated in Africa. This study aimed to examine the psychometric properties of the Social Communication Questionnaire (SCQ) when used with Nigerian adolescents. Parents and caregivers of two hundred and five adolescents completed the SCQ Lifetime form while the adolescents were assessed for ASD using the Autism Diagnostic Observation Schedule, 2nd Edition (ADOS-2). Factor structure and convergent and discriminative validity were examined, along with the sensitivity and specificity of the SCQ in identifying participants with an autism spectrum disorder. The confirmatory factor analysis (CFA) was used to examine the factor structure, while logistic regression and Pearson's correlation coefficient were used to examine the validities. The SCQ had good internal consistency, discriminative, and convergent validity. A cut-off score of 10 revealed sensitivity = 0.81 and specificity = 0.88 for the identification of autism spectrum disorder. AUC was 0.83, p < 0.001, 95% CI [0.77, 0.90]. The results of this study provide evidence to support the retention of the original four factors of the SCQ. The SCQ has good psychometric properties when used with Nigerian adolescents.

Men with intellectual disabilities who have attended sex offender treatment groups: a follow-up.

BACKGROUND: There have been a number of studies of treatment for men with intellectual disabilities and sexually abusive behaviour but few follow-up studies. Our aim was to follow up men with intellectual disabilities who had attended group cognitive behavioural treatment (CBT) for sexually abusive behaviour. METHOD: Thirty-four men (from seven treatment sites) were followed up. All had attended SOTSEC-ID groups. The mean length of follow-up, since the end of the treatment group, was 44 months (SD 28.7, range 15-106 months). RESULTS: The statistically significant improvements in sexual knowledge, empathy and cognitive distortions that occurred during treatment were maintained at follow-up. In all, 11 of the 34 (32%) men showed further sexually abusive behaviour, but only two of these men received convictions. Analyses of the variables associated with further sexually abusive behaviour indicated that a diagnosis of autism was associated with a higher likelihood of further sexually abusive behaviour. CONCLUSIONS: This study provides some evidence of the longer-term effectiveness of group CBT for men with intellectual disabilities and sexually abusive behaviour.

An evaluation of the EQUIP treatment programme with men who have intellectual or other developmental disabilities.

BACKGROUND: The Equipping Youth to Help One Another Programme (EQUIP) was designed for young offenders to address a developmental delay in moral reasoning, distorted cognitions and social skills. METHODS: The present authors undertook a single case series study and piloted an adapted version of the EQUIP programme with three men with intellectual disabilities and four men with a diagnosis of Asperger Syndrome, all of whom were detained in a medium-secure forensic unit for people with intellectual disabilities. Treatment was delivered over a 12-week period, and participants took part in four-one-hour sessions per week. RESULTS: The results suggested that treatment was successful at increasing moral reasoning ability, reducing distorted cognitions and improving ability to choose effective solutions to problems. However, treatment did not have a significant effect upon anger. CONCLUSIONS: The EQUIP programme is a promising treatment, but further research is needed to investigate its effectiveness with men with intellectual or other developmental disabilities.

The Experiences of Carers of Adults With Intellectual Disabilities During the First COVID-19 Lockdown Period.

Background: The recent COVID-19 pandemic led to widespread international restrictions, severely impacting on health and social care services. For many individuals with an intellectual disability (ID) this meant reduced access to services and support for them and their carers. Aim: The aim of this study was to gain insight into the ways parents of adults with ID coped during the first 2020 lockdown period. Methods: Eight parents of adults with ID were interviewed. The recordings of these interviews were subjected to a thematic analysis. Results: Four main themes were identified: powerless and unappreciated; coping under lockdown; support; and the impact of lockdown on well-being. Conclusions: The parents of adults with ID who made up our sample reported that they received little support from services and experienced a sense of powerlessness. Nevertheless, they were open to accepting support from family and friends and showed remarkable resilience. These findings are discussed in the light of the Willner et al. (2020) survey results on parental mental health and coping, and suggestions for future service provision during pandemic conditions are proposed.

"They're the hardest group to treat, that changes the least". Adapted sex offender treatment programmes for individuals with Autism Spectrum Disorders: Clinician views and experiences.

AIMS: Clinicians working with individuals with autism spectrum disorders (ASD) who display sexual offending behaviours may face challenges during treatment, as a result of the cognitive and behavioural profile associated with ASD. This research explored the views and experiences of those running adapted sex offender treatment groups with men with ASD. METHOD: Semi-structured interviews with group facilitators (n = 12) focused on service user engagement and response to the core components of the treatment programme (e.g. increasing victim empathy, addressing cognitive distortions, etc.), and gathered the experiences of those working with men with ASD who display sexual offending behaviours. RESULTS: Grounded Theory was used to develop a model conceptualising the potential impact of ASD on treatment outcomes, and this emerged predominantly through clinician's views of risk of re-offending. Benefits of attending a group included: the presence of other group members, a forum to develop pro-social roles and relationships, and increased opportunity for monitoring. Challenges regarding empathy, specifically emotional empathy, and shifts in cognitive distortions were felt particularly pertinent to those with ASD, as well as questions over internalisation of therapy. CONCLUSION: Despite identification of a number of challenges, adapted sex offender treatment programmes were considered beneficial for men with ASD, especially in light of a dearth of evidenced-based alternatives.

The not guilty verdict: psychological reactions to a diagnosis of Asperger syndrome in adulthood.

Asperger syndrome is a relatively new diagnostic classification. A number of factors make receiving a diagnosis of Asperger syndrome in adulthood a unique experience. This study used a phenomenological approach to examine the experiences of 10 adults receiving such a diagnosis. Results suggested that six major themes were associated with receiving a diagnosis of Asperger syndrome. Individuals discussed their negative life experiences and their experience of services prior to diagnosis, which led to individuals holding certain beliefs about the symptoms of Asperger syndrome. These beliefs had an effect on the formation of each individual's perceived self-identity. Participants made links between how they felt when they received the diagnosis and their current beliefs about both their ;symptoms' and themselves. Finally, participants highlighted the importance of the societal view of Asperger syndrome. The implications of these findings are reappraised in the context of previous research and the wider literature on identity formation.

What characteristics do service users with intellectual disability value in direct support staff within residential forensic services?

BACKGROUND: This study explores the perceptions of a group of adults with intellectual disability regarding direct support staff. METHOD: Semi-structured interviews relating to experiences of direct support staff were developed from two focus groups. These interviews were conducted with 11 adults with intellectual disability residing within a forensic inpatient service. RESULTS: Interpretative Phenomenological Analysis (IPA) revealed two superordinate themes; namely, staff relationship factors and positive and negative attributes of staff. The participants valued relationships with staff based on qualities such as honesty, trust, and a caring, nurturing manner that enabled individuals to feel safe. Staff characteristics such as immaturity, inexperience, and a short temper appeared to lead to feelings of discontentment amongst the participants. CONCLUSIONS: The implications of the findings are discussed in relation to clinical practice, staff recruitment, and training.