SummaryAn online event was held for psychologists who work in intellectual disability services and in universities.We wanted to share the work we are doing to encourage new psychologists to join ID services.Lots of ideas were discussed and we plan to take some of these forward as projects.

Background:Stigma contributes to the negative social conditions persons with intellectual disabilities are exposed to, and it needs tackling at multiple levels. Standing Up for Myself is a psychosocial group intervention designed to enable individuals with intellectual disabilities to discuss stigmatising encounters in a safe and supportive setting and to increase their self-efficacy in managing and resisting stigma.Objectives:To adapt Standing Up for Myself to make it suitable as a digital intervention; to evaluate the feasibility and acceptability of Digital Standing Up for Myself and online administration of outcome measures in a pilot; to describe usual practice in the context of the coronavirus disease 2019 pandemic to inform future evaluation.Design:Adaptation work followed by a single-arm pilot of intervention delivery.Setting and participants:Four third and education sector organisations. Individuals with mild-to-moderate intellectual disabilities, aged 16+, members of existing groups, with access to digital platforms.Intervention:Digital Standing Up for Myself intervention. Adapted from face-to-face Standing Up for Myself intervention, delivered over four weekly sessions, plus a 1-month follow-up session.Outcomes:Acceptability and feasibility of delivering Digital Standing Up for Myself and of collecting outcome and health economic measures at baseline and 3 months post baseline. Outcomes are mental well-being, self-esteem, self-efficacy in rejecting prejudice, reactions to discrimination and sense of social power.Results:Adaptation to the intervention required changes to session duration, group size and number of videos; otherwise, the content remained largely the same. Guidance was aligned with digital delivery methods and a new group member booklet was produced. Twenty-two participants provided baseline data. The intervention was started by 21 participants (four groups), all of whom were retained at 3 months. Group facilitators reported delivering the intervention as feasible and suggested some refinements. Fidelity of the intervention was good, with over 90% of key components observed as implemented by facilitators. Both facilitators and group members reported the intervention to be acceptable. Group members reported subjective benefits, including increased confidence, pride and knowing how to deal with difficult situations. Digital collection of all outcome measures was feasible and acceptable, with data completeness ≥ 95% for all measures at both time points. Finally, a picture of usual practice has been developed as an intervention comparator for a future trial.Limitations:The pilot sample was small. It remains unclear whether participants would be willing to be randomised to a treatment as usual arm or whether they could be retained for 12 months follow-up.Conclusions:The target number of groups and participants were recruited, and retention was good. It is feasible and acceptable for group facilitators with some training and supervision to deliver Digital Standing Up for Myself. Further optimisation of the intervention is warranted.Future work:To maximise the acceptability and reach of the intervention, a future trial could offer the adapted Digital Standing Up for Myself, potentially alongside the original face-to-face version of the intervention.Study registration:This study was registered as ISRCTN16056848.Funding:This award was funded by the National Institute for Health and Care Research (NIHR) Public Health Research programme (NIHR award ref: 17/149/03) and is published in full in Public Health Research; Vol. 12, No. 1. See the NIHR Funding and Awards website for further award information.

This paper considers current workforce issues facing psychological professionals working in NHS services, examining the challenges, and identifying opportunities to better meet the needs of autistic people and people with an intellectual disability (PwID) across the lifespan. The aim of this paper is to identify and publicly articulate the need for a coherent approach to guide the practice of psychological professionals when helping autistic people and/or PwID. It should be noted that the scope of the paper is limited to autism and intellectual disability. In addressing these broad groups and their co-occurring conditions and needs, we anticipate that many principles could be applied to other neurodevelopmental conditions. We also note the significant potential challenges in linking intellectual disability and autistic populations, hence have attempted – in drawing together a working group to write this paper – to ensure representation from a range of psychological professionals including those in policy, leadership, and training roles, those working in specialist or generic mental health services and undertaking clinical research across the lifespan. Objectives: ■ To help define and support clear action so that all sectors welcome and adequately support people with neurodevelopmental differences, including autistic people and/or PwID. ■ To play a role in the development, planning and evaluation of new psychological professions roles such as the Clinical Associates in Psychology (CAPS) and Education Mental Health Practitioners (EMHPs). ■ To reflect on the obstacles to recruiting to autism and learning disability services and to propose approaches to developing a sustainable psychological workforce in these areas. ■ To recognise where good examples of education and training programmes exist to address training, confidence and competence for all psychological professionals working with those who may be autistic and/or have an ID, and consider how to establish a more consistent approach to education, training and CPD across the workforce. ■ To engage in policy discussions around the current gaps, such as the demand for diagnostic assessments and support which significantly outstrips capacity, whilst highlighting unrealised opportunities, through for example, a systematic approach to training. ■ To advocate for the need for the voice of autistic people and PwID and their families/carers which is often absent from the design and offer of help.

Group-based interventions may be helpful for reducing psychological distress for adults with learning disabilities. The aim was to evaluate the group in terms of its feasibility and online adaptations from a service user and group facilitator perspective. A six-session group intervention was undertaken on three occasions. Thematic analysis of participant’s qualitative feedback identified two themes, ‘Enjoying attending the group’ and ‘Skills development’. Facilitators identified several positive aspects of the group. A paired-samples t-test identified no significant difference at post-intervention. The group demonstrated success in the overall feasibility of delivering a therapy group remotely.

Easy to read summary■Even though more psychologists are being trained, it can still be hard for Intellectual Disability (ID) services to employ psychologists.■This article talks about the psychology training process and how this might not encourage people to work in ID.■We give some ideas of things that might help during training, so that Trainees can learn more about working in ID services.■We hope this might make them more likely to consider working in ID services.■This is important because if there are not enough psychologists in ID services, people with intellectual disabilities may struggle to find the psychological help they need.

BACKGROUND:Our STORM intervention was developed for people (16 +) with intellectual disabilities to enhance their capacity to manage and resist stigma. The current study describes the adaptation of STORM for (synchronous) on-line delivery in the context of the Covid-19 pandemic. AIMS:To adapt the manualised face-to-face STORM group intervention for delivery via web-based meeting platforms and to conduct an initial pilot study to consider its acceptability and feasibility. METHODS AND PROCEDURES:The 5-session STORM intervention was carefully adapted for online delivery. In a pilot study with four community groups (N = 22), outcome, health economics and attendance data were collected, and fidelity of delivery assessed. Focus groups with participants, and interviews with facilitators provided data on acceptability and feasibility. OUTCOMES AND RESULTS:The intervention was adapted with minimal changes to the content required. In the pilot study, 95% of participants were retained at follow-up, 91% attended at least three of the five sessions. Outcome measure completion and fidelity were excellent, and facilitators reported implementation to be feasible. The intervention was reported to be acceptable by participants. CONCLUSIONS AND IMPLICATIONS:When provided with the necessary resources and support, people with intellectual disabilities participate actively in web-delivered group interventions.

BACKGROUND:People with intellectual disabilities are at risk of experiencing stigma and require the skills and confidence to deal with stigma in their daily lives.METHOD:Development and piloting of a 5-session manualised psychosocial group intervention designed to increase the capacity of people with intellectual disabilities aged 16+ to manage and resist stigma. Ten pre-existing groups (N = 67) in third sector and education settings participated. Interviews with participants (n = 26), facilitators (n = 9) and significant others (n = 7) 2-4 months after the intervention assessed perceived impact.RESULTS:Perceived benefits of the intervention for participants included increased understanding, improved connections with others, drive for advocacy, increased activity and self-efficacy, and opportunity to process difficult events and emotions. Differential impact depending on individuals' pre-existing self-advocacy skills was noted.CONCLUSIONS:This early-stage study indicates that further evaluation is merited to examine feasibility and outcomes of the STORM intervention.

Autism is a neurodevelopmental condition that affects individuals across their lifetime, though the effects of ageing in older adulthood are poorly understood to date. This systematic review assessed six characteristics in older autistic adults (cognitive functioning, co-occurring difficulties, autism symptom severity, social integration, adaptive functioning, language processing). A total of 41 studies met inclusion criteria, 16 of which included autistic adults with intellectual disability, and three were longitudinal in nature. Findings show differing effects of ageing across the six domains. Factors contributing to discrepancies such as age and IQ differences, methodology and healthy survivor effect are discussed. The need for more longitudinal studies to investigate changes across developmental stages alongside other limitations, future directions and clinical implications are discussed.

Autism is a neurodevelopmental condition that affects individuals across their lifetime, though the effects of ageing in older adulthood are poorly understood to date. This systematic review assessed six characteristics in older autistic adults (cognitive functioning, co-occurring difficulties, autism symptom severity, social integration, adaptive functioning, language processing). A total of 41 studies met inclusion criteria, 16 of which included autistic adults with intellectual disability, and three were longitudinal in nature. Findings show differing effects of ageing across the six domains. Factors contributing to discrepancies such as age and IQ differences, methodology and healthy survivor effect are discussed. The need for more longitudinal studies to investigate changes across developmental stages alongside other limitations, future directions and clinical implications are discussed.

Background Behaviour that challenges in people with intellectual disability is associated with higher healthcare, social care and societal costs. Although behavioural therapies are widely used, there is limited evidence regarding the cost and quality-adjusted life-years (QALYs). Aims We aimed to assess the incremental cost per QALY gained of therapist training in positive behaviour support (PBS) and treatment as usual (TAU) compared with TAU using data from a cluster randomised controlled trial (Clinical Trials.gov registration: NCT01680276). Method We conducted a cost-utility analysis (cost per QALY gained) of 23 teams randomised to PBS or TAU, with a total of 246 participants followed up over 36 months. The primary analysis was from a healthcare cost perspective with a secondary analysis from a societal cost perspective. Results Over 36 months the intervention resulted in an additional 0.175 QALYs (discounted and adjusted 95% CI −0.068 to 0.418). The total cost of training in and delivery of PBS is £1598 per participant plus an additional cost of healthcare of £399 (discounted and adjusted 95% CI −603 to 1724). From a healthcare cost perspective there is an 85% probability that the intervention is cost-effective compared with TAU at a £30 000 willingness to pay for a QALY threshold. Conclusions There was a high probability that training in PBS is cost-effective as the cost of training and delivery of PBS is balanced out by modest improvements in quality of life. However, staff training in PBS is not supported given we found no evidence for clinical effectiveness.

This study aimed to compare cognitive and memory abilities between older adults with and without autism over the age of 50. Twenty-eight individuals with autism and 29 typically developing (TD) older adults took part in the current study. Participants' cognitive and memory abilities were assessed by WAIS-IV and WMS-IV. Older autistic adults were found to have poorer performance in processing speed and visual working memory, but they performed at a similar level as TD controls in all other domains. Poorer processing speed and visual working memory are also often found to be associated with age-related decline in neurotypical adults. Longitudinal studies are warranted to explore how the combination of ageing and autism affects cognitive functioning in older adults.

BACKGROUND:Positive Behaviour Support (PBS) for challenging behaviour is a complex intervention. Process evaluation is pivotal in fully understanding the mechanisms and contextual factors that impact on participant outcomes. AIMS:To conduct a process evaluation of a national clinical trial investigating the impact of PBS-based staff training on the level of challenging behaviour in adults with intellectual disability. METHOD:The Medical Research Council guidance for process evaluation of complex interventions was followed. Semi-structured interviews with 62 stakeholders from the intervention arm (service users, family and paid carers, service managers, staff who delivered the intervention and PBS trainers), quantitative data from the study database and an external evaluation of the quality of the PBS plans were used. RESULTS:Twenty-one health staff volunteered to be trained in delivering PBS. Available log data from 17 therapists revealed that they worked with 63 participants a median of 11.50 hours (IQR 8-32). Only 33 out of 108 reports had included all elements of the intervention. Another 47 reports had some elements of the intervention. All PBS plans were rated weak, indicating insufficient quality to impact challenging behaviour. Stakeholders reported an appreciation of PBS and its potential to impact quality of care and engagement with the participant. However, they also identified important challenges including managing PBS-related caseloads, paid carer turnover and service commitment to the delivery of PBS. CONCLUSIONS:PBS-based staff training was well received, but therapists found it difficult to undertake all the elements of the intervention in routine care. Implementing a workforce training strategy is important to better define the active components of PBS, and resource implications if the intervention is no better than usual care.

Recent advances in genetic research have led to an increased focus on genetic causes of intellectual disability (ID) and have raised new questions about how and when clinicians offer genetic testing and the nature of communication around this decision with patients and carers. Determining the right approach to such discussions is complicated by complexities of communication, consent, and capacity and ethical concerns about genetic testing in this population. In this article, we briefly discuss the recent advances in genetic research relevant to people with intellectual disability, highlighting the challenges that might arise when undertaking genetic testing in this population. We then describe how we have used a Quality Improvement methodology to develop a clinical pathway for routine genetic testing for adults with intellectual disability in a clinical setting in East London.

We developed a brief, informant-report interview for assessing autism spectrum conditions (ASC) in adults, called the Developmental, Dimensional and Diagnostic Interview-Adult Version (3Di-Adult); and completed a preliminary evaluation. Informant reports were collected for participants with ASC (n = 39), a non-clinical comparison group (n = 29) and a clinical comparison group (n = 20) who had non-autistic mental health conditions. Mean administration time was 38 min (50 min for ASC). Internal consistency (αs ≥ 0.93) and inter-rater agreement (ICCs ≥ 0.99) were high. When discriminating ASC from non-ASC, the 3Di-Adult showed excellent sensitivity (95%) and specificity (92%). The 3Di-Adult shows promise as a psychometrically sound and time-efficient interview for collecting standardised informant reports for DSM-5 assessments of ASC in adults, in research and clinical practice.

Background: Preliminary studies have indicated that training staff in Positive Behaviour Support (PBS) may help to reduce challenging behaviour among people with intellectual disability (ID). Objective: To evaluate whether or not such training is clinically effective in reducing challenging behaviour in routine care. The study also included longer-term follow-up (approximately 36 months). Design: A multicentre, single-blind, two-arm, parallel-cluster randomised controlled trial. The unit of randomisation was the community ID service using an independent web-based randomisation system and random permuted blocks on a 1 : 1 allocation stratified by a staff-to-patient ratio for each cluster. Setting: Community ID services in England. Participants: Adults (aged > 18 years) across the range of ID with challenging behaviour [≥ 15 Aberrant Behaviour Checklist – Community total score (ABC-CT)]. Interventions: Manual-assisted face-to-face PBS training to therapists and treatment as usual (TAU) compared with TAU only in the control arm. Main outcome measures: Carer-reported changes in challenging behaviour as measured by the ABC-CT over 12 months. Secondary outcomes included psychopathology, community participation, family and paid carer burden, family carer psychopathology, costs of care and quality-adjusted life-years (QALYs). Data on main outcome, service use and health-related quality of life were collected for the 36-month follow-up. Results: A total of 246 participants were recruited from 23 teams, of whom 109 were in the intervention arm (11 teams) and 137 were in the control arm (12 teams). The difference in ABC-CT between the intervention and control arms [mean difference –2.14, 95% confidence interval (CI) –8.79 to 4.51; p = 0.528] was not statistically significant. No treatment effects were found for any of the secondary outcomes. The mean cost per participant in the intervention arm was £1201. Over 12 months, there was a difference in QALYs of 0.076 in favour of the intervention (95% CI 0.011 to 0.140 QALYs) and a 60% chance that the intervention is cost-effective compared with TAU from a health and social care cost perspective at the threshold of £20,000 per QALY gained. Twenty-nine participants experienced 45 serious adverse events (intervention arm, n = 19; control arm, n = 26). PBS plans were available for 33 participants. An independent assessment of the quality of these plans found that all were less than optimal. Forty-six qualitative interviews were conducted with service users, family carers, paid carers and service managers as part of the process evaluation. Service users reported that they had learned to manage difficult situations and had gained new skills, and carers reported a positive relationship with therapists. At 36 months’ follow-up (n = 184), the mean ABC-CT difference between arms was not significant (–3.70, 95% CI –9.25 to 1.85; p = 0.191). The initial cost-effectiveness of the intervention dissipated over time. Limitations: The main limitations were low treatment fidelity and reach of the intervention. Conclusions: Findings from the main study and the naturalistic follow-up suggest that staff training in PBS as delivered in this study is insufficient to achieve significant clinical gains beyond TAU in community ID services. Although there is an indication that training in PBS is potentially cost-effective, this is not maintained in the longer term. There is increased scope to develop new approaches to challenging behaviour as well as optimising the delivery of PBS in routine clinical practice. Trial registration: This study is registered as NCT01680276. Funding: This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 22, No. 15. See the NIHR Journals Library website for further project information.

Research on the experience of growing older with autism is very limited. In this study, 13 people with autism aged over 50 years participated in semi-structured interviews about their experiences of diagnosis, social support and getting older. Interviews were analysed using thematic analysis. Three overarching themes were generated: difference, life review and longing for connection. Prior to diagnosis, individuals had awareness of their difficulties, attributed these to intrinsic difference and engaged in a deliberate process of reducing the visibility of this difference. Diagnosis prompted a process of life review and externalisation, whereby past negative experiences were reattributed to autism as opposed to the self. Loneliness, isolation and yearning for interpersonal connection were ubiquitous and longstanding. Autism support and social groups were highly valued, offering opportunities for belonging, acceptance and social comparison. Results highlight the similarity to younger age groups in terms of lived experience and need for greater support, particularly with respect to reducing isolation and improving access to diagnosis.

Introduction: The Resident Choice Assessment Scale (RCAS) is used to assess choice availability for adults with intellectual disabilities (ID). The aim of the study was to explore the factor structure, construct validity, and internal consistency of the measure in community settings to further validate this tool. Method: 108 paid carers of adults with ID living in supported accommodation and residential care facilities in urban, rural, and semirural areas in England completed the RCAS. Exploratory factor analyses were performed and the construct validity and internal consistency of the emerging factors were assessed. Results: Principal axis factoring with oblique rotations suggested a scale with two factors (Everyday Choices and Participation in Household Activities) which explained 45% of the variance; the factors showed favorable construct validity as they identified significant differences between those living in residential care homes compared with supported living; the factors also differentiated between people with different levels of intellectual impairment with less choice and participation in domestic activities for those with more severe ID compared to their counterparts with moderate and mild impairment. Five items did not load onto any factor, suggesting that these could be dropped from the scale when administered in community settings, thus resulting in an 18-item measure (RCAS-18). Conclusion: The RCAS-18 may provide a useful measure to assess choice availability for people with ID supported by paid carers in the community. The revised measure may be more suitable in capturing choice than the original version for use in community samples.