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Neuroimaging research in autism often excludes individuals with co-occurring intellectual impairment or minimally verbal status, limiting the generalisability of findings. Understanding magnetic resonance imaging (MRI) scan success predictors in a representative autistic sample is crucial for equitable research.
Aims
This study identified factors predicting successful brain MRI acquisition and data quality in diverse autistic individuals, focusing on including those with intellectual impairment or minimally verbal status.
Method
A total of 122 participants (83 autistic individuals (27 with intellectual impairment, 19 with minimally verbal status) and 39 typically developing controls) received multi-modal brain MRI scans (including structural, resting-state functional and diffusion MRI). Scan success, assessed using both binary criteria and quantitative data-quality metrics, was related to participant characteristics.
Results
Although overall scan success was high, specific factors differentiated success within subgroups. Key factors contributing to scan success included age, non-verbal intelligence and attention-deficit hyperactivity disorder (ADHD) symptoms. Older participants, those with fewer ADHD symptoms and those with higher non-verbal intelligence were more likely to achieve successful scans, regardless of autism diagnosis. Higher data quality, particularly in structural and functional MRI, was associated with higher intelligence, better adaptive functioning, fewer autistic and ADHD symptoms, and fewer behavioural problems.
Conclusions
Identifying these factors is key to designing more inclusive and effective neuroimaging protocols. This work paves the way for more comprehensive research into the neurobiology of the full autism spectrum, and offers insights for improving the clinical MRI experience for autistic individuals with diverse support needs. Individualised strategies may also be useful in clinical settings, helping to improve the experience of MRI scanning for autistic individuals.
We explore the unique considerations surrounding menopause, periods and contraception for people with intellectual disability (ID), the barriers they face and how to achieve ‘equal outcomes of care’. A complex interplay of communication differences, societal assumptions and stigma, diagnostic overshadowing, physical accessibility challenges, and gaps in healthcare providers’ understanding of ID, create these barriers. Aspiring to achieve equal outcomes of care requires early and adapted communication about menopause, periods and sexual health. Clinicians need to adapt clinical care to embed enquiry about menstruation and menopause and use systematic tracking tools to understand a woman’s periods and associated psychological and behavioural changes and then offer the whole range of treatment options. The responsibility lies with professionals to be aware of the barriers, provide reasonable adjustments to overcome them, and to advocate for equal outcomes around menopause, periods and contraceptive health for people with ID. The chapter includes insight from ‘experts by experience’, and each section provides practical suggestions for professionals working with people with ID.
Supported decision-making presents a promising avenue to address tensions between the benefits of clinical research for persons with intellectual disability (PWIDs) and the potential exploitation of PWIDs in research. However, while much has been written about supported decision-making with PWIDs in clinical practice, there has been little attention to its possible use in clinical research, especially for PWIDs whose capacity to benefit from support may be uncertain or disputed. In this article, we will interrogate three challenges that arise in this context: communication, influence, and speculation and displacement. Through examples adapted from ethics consultations and cases in the literature, we aim to provide guidance on how to address these challenges.
People with intellectual disabilities experience higher rates of mental disorders, contributing to restrictive practices and premature mortality. Prevalence data are essential to understanding the patterns of disease, and for the development of tailored interventions.
Aims
To systematically examine the burden and pattern of mental disorders in people with intellectual disabilities across the lifespan.
Method
We searched six databases (inception to 17 October 2024), and conducted a manual search up to 15 December 2024, for systematic reviews on the prevalence of mental disorders in people with intellectual disabilities with or without neurodevelopmental conditions. We conducted a narrative synthesis of prevalence rates, including those stratified by intellectual disability level, sex, age and autism, where available, and compared these with published prevalence rates in people without intellectual disabilities (International Prospective Register of Systematic Reviews, no. CRD42024610611).
Results
We included 26 systematic reviews: 7 meta-analyses and 19 narrative reviews. Compared with the general population, the prevalence of schizophrenia (3.55–4.80%), anxiety (5.4–5.5%) and obsessive–compulsive disorders (2.4%) appeared higher, whereas that of mood (6–7%), personality and post-traumatic stress disorders appeared lower. Study quality was moderate to critically low. For syndromic intellectual disabilities we noted high anxiety rates in fragile-X, Williams and 22q11.2 deletion syndromes, and in those with co-occurring autism. We found gaps on dementia, bipolar, substance use and eating disorders, and limited data stratified by intellectual disability level, sex and age.
Conclusions
This umbrella review confirms the high prevalence of mental disorders among people with intellectual disabilities, and highlights limited evidence for several conditions and population subgroups, including for minoritised ethnic groups. Standardised, high-quality epidemiological research is needed to shape clinical care and public mental health policy.
Adults with intellectual disabilities who display behaviours that challenge (BtC) are more prone to poor health.
Aims
This study seeks to evidence the long-term health outcomes for those who display BtC.
Method
We conducted a longitudinal cohort study of adults with intellectual disabilities aged ≥18 years in England, using data from the Clinical Practice Research Datalink Aurum (January 2003 to December 2023) linked to Hospital Episode Statistics and Office for National Statistics. Main outcome measures were annual health checks, general practitioner referrals, emergency visits, out-patient attendance, in-patient admissions and mortality.
Results
Among 83 166 adults with intellectual disabilities (mean age 38.6 years), 18.5% had a record of BtC, with similar sociodemographic distributions to those without BtC, but higher rates of physical and mental health comorbidities and uptake of annual health checks. A total of 72.5% of participants with BtC were receiving psychotropic medication(s). Adults with BtC had higher rates of mental health out-patient attendance (odds ratio: 1.42, 95% CI 1.33–1.52) and in-patient admissions (incidence rate ratio (IRR): 1.19, 95% CI 1.09–1.29), but consistently lower rates of physical health out-patient attendance (IRR = 0.81, 95% CI 0.78–0.84) and in-patient admissions (IRR = 0.77, 95% CI 0.74–0.79), after adjusting for demographic and clinical characteristics. BtC were not associated with mortality after adjustment for comorbidities (hazard ratio: 0.97, 95% CI 0.93–1.00).
Conclusions
This longitudinal study not only corroborated the markedly elevated burden of physical and mental health comorbidities among individuals displaying BtC, but also indicated that repeated efforts to improve health outcomes have yielded minimal measurable benefit over time. The apparent absence of progress is likely underpinned by a combination of insufficiently effective or poorly tailored interventions and wider systemic constraints that limit the capacity of services to respond to the complex needs of this population.
A new service for adults with intellectual disabilities and mental health problems was developed in Qatar. However, numerous challenges were identified. In this paper, we reflect on the service development project, model of service delivery and achievements during the initial phases. The collaboration between government agencies to achieve improvement in the quality of life for this population was highlighted. Investment in training mental health staff to enhance their knowledge and skills in intellectual disability helped to facilitate improvement in care needs. An assessment was conducted on the service provision, and the results were reviewed to determine key priorities and offer recommendations. Local social and cultural perspectives highlighted requirements for improved understanding of the needs of the intellectual disability population and future service plans.
People with intellectual disability experience substantial health inequities, including higher multimorbidity, increased healthcare utilisation and markedly reduced life expectancy. High-quality research is essential to address these disparities. The National Institute for Health and Care Research (NIHR) funded Research Delivery Network provides the infrastructure/expertise/support needed to deliver NIHR-funded studies, and supports studies funded by a non-commercial/industry partner. However, the effectiveness of NIHR-funded studies versus those supported in driving impactful intellectual disability research remains unclear.
Aims
To evaluate and compare the outcomes of NIHR-funded and supported intellectual disability research.
Method
All NIHR studies (funded/supported) relating to intellectual disability (2010–2020) were identified through systematic register searches. Primary outcomes included publication rates and impact on local, national and international clinical guidelines. Data collection was supplemented with a questionnaire to chief investigators and literature searches. Quantitative analyses examined associations between funding status, study design, publication and guideline impact, whereas qualitative responses explored implementation challenges.
Results
In total, 88 projects were identified, and 42% (37/88) were NIHR-funded. Overall, 81% of studies generated at least one publication and 28% informed clinical guidelines. NIHR funding was not significantly associated with publication or guideline impact. Randomised controlled trials (RCTs) were significantly more likely to be published and more likely to influence non-UK national and international guidelines than non-RCTs. The amount of funding showed no association with impact. Qualitative findings highlighted funding constraints, staff capacity and stakeholder engagement as key determinants of implementation.
Conclusions
NIHR-funded intellectual disability research was no more likely than NIHR-supported studies to result in publications or guideline impact.
All doctors will encounter patients with intellectual disabilities and neurodevelopmental disorders, but most medical subspecialty training does not explicitly cover the needs of this population. This can leave doctors feeling underskilled and lacking in confidence to assess and manage these patients. It can also increase the risk of diagnostic overshadowing, adversely affecting patients’ health outcomes. This article reviews the current state of medical education in the psychiatry of intellectual disability and associated neurodevelopmental disorders in the UK. It follows the medical training pathway from undergraduate through to postgraduate level, highlighting the expected learning outcomes. Key challenges and gaps in training at each level are discussed, along with potential solutions. Looking more widely, the article finishes with a short description of the paediatric neurodisability specialty training pathway, and a description of the UK’s contribution to international medical training in intellectual disability.
Edited by
Liz McDonald, East London NHS Foundation Trust,Roch Cantwell, Perinatal Mental Health Service and West of Scotland Mother & Baby Unit,Ian Jones, Cardiff University
Women with intellectual disabilities have children more frequently than in the past. This is partly a result of changes in attitudes towards people with intellectual disabilities. Institutional care in many parts of the world is less common and sterilisation of women with intellectual disabilities is less frequent. However, women with intellectual disabilities experience greater social disadvantage than other women, negative attitudes towards their having children, and judgements about their abilities to parent successfully. They have poorer pregnancy and neonatal health outcomes due to health inequalities and socio-economic deprivation and are more likely to have their children removed from their care. The rate of mental disorders in women with intellectual disabilities is high leading to increased utilisation of healthcare services during the perinatal period and after delivery. Recognising perinatal mental disorders in women with intellectual disabilities can be challenging for clinicians because of communication difficulties in the woman and a lack of training for the clinician. Assessment and support to women with intellectual disabilities and mental disorders has to be adapted to take account of their individual needs. Training of clinical staff in understanding intellectual disabilities is essential in enhancing the care they receive and ensuring equity of access to services.
Scientific discoveries and precision medicine research, especially efforts to identify individually tailored approaches to healthcare considering individual variability in genetics, environmental, and lifestyle factors, have the potential to transform health. This goal is especially critical for those who experience social injustices and substantial health disparities. Yet the inclusion of adults with intellectual disability in precision medicine research, a growing field in clinical and translational genomic research, raises ethical, social, and legal concerns about their ability to make informed decisions to participate, and subsequently whether this population should be excluded altogether or enrolled only via proxy consent. Both practices demand scrutiny and are sometimes without legal or ethical justification. Supported decision-making, a reasonable accommodation and relatively recent legal and ethical construct, can facilitate first-person consent and maintain the prospective participant’s position as the decision-maker. As such, supported decision-making is a promising development with critical implications for consent to precision medicine research. Using findings from our national survey with adults with intellectual disability and a legal analysis, our academic-community research partnership developed recommendations and a tool for using supported decision-making for enrollment in precision medicine research. We conclude with persistent challenges that need resolving to ensure the responsible inclusion of adults with intellectual disability in precision medicine research, and clinical research more generally.
People with intellectual and other cognitive disabilities often face barriers to participating in clinical research, particularly related to the informed consent process. Recent federal policy and legal efforts have advanced strategies to address these challenges, including using supported decision-making. This article discusses this recent progress and the risks and potential opportunities to continuing it in a shifting federal landscape.
Long-term segregation (LTS) is used in mental health hospitals in England to manage individuals perceived to pose a sustained risk of harm to others. Increasing evidence indicates that LTS causes significant psychological and physical harm and may breach international human rights standards. The HOPE(S) programme (2022–2025) was introduced nationally to reduce, and ultimately end, the use of LTS for autistic people, individuals with learning disabilities and children and young people.
Aims
To explore the experiences of LTS from different perspectives and to examine its impact through a human rights lens.
Method
Qualitative data were collected from 73 participants, including people with lived experience of LTS, family members, HOPE(S) practitioners, clinical staff, commissioners and regulators. Reflexive thematic analysis was conducted as part of a wider, mixed-methods evaluation of the HOPE(S) programme.
Results
LTS was described by most participants as harmful, dehumanising and lacking in therapeutic value. Four interrelated themes emerged: (a) dehumanisation and erosion of personhood; (b) safeguarding and systemic failure; (c) psychological and relational harm; and (d) loss of hope and systemic inertia. These experiences reflected breaches of the Convention on the Rights of Persons with Disabilities, and of the Convention on the Rights of the Child.
Conclusions
LTS is not a therapeutic intervention and is associated with profound psychological harm and human rights violations. Systemic reform and implementation of rights-based, trauma-informed alternatives, such as the HOPE(S) model, are urgently required to safeguard well-being and dignity in mental healthcare.
In its 2025 medical training review, National Health Service (NHS) England highlighted the urgent need to modernise postgraduate medical education in England to meet NHS population needs while supporting doctors’ professional aspirations. The psychiatry of intellectual disability, a subspecialty marked by declining recruitment, uneven service provision and limited research capacity, provides a critical test case for these reforms. This article applies the 11 recommendations from the review to doctors training in this subspecialty. Drawing on recent evidence, it advocates for equitable, flexible and academically grounded reforms that embed psychiatry of intellectual disability within mainstream medical education, workforce planning and national health policy transformation.
Parental prenatal mood and anxiety disorders (PMADs) are linked to child neurodevelopmental disorders (NDDs), but evaluations of the magnitude and mechanisms of this association are limited. This study estimates the strength of the association and whether it is impacted by genetic and environmental factors.
Methods
A systematic search of PubMed, CENTRAL, PsycINFO, OVID, and Google Scholar was performed for articles published from January 1988 to September 2025. Of 2,420 articles screened, 74 met the inclusion criteria. Meta-analyses were conducted on 21 studies, and 53 were included in the narrative synthesis. We conducted random-effects meta-analyses, along with tests for heterogeneity (I2) and publication bias (Egger’s test). The review followed PRISMA and MOOSE guidelines.
Results
Maternal PMADs were associated with a significantly increased risk of attention-deficit/hyperactivity disorder (ADHD; odds ratio [OR] 1.91, 95% confidence interval [CI] 1.45–2.52) and autism spectrum disorder (ASD; OR 1.75, 95% CI 1.43–2.14) in children. Paternal PMADs were also associated with the risk of NDDs, with combined odds for ASD and ADHD (OR = 1.23, 95% CI 1.14–1.33). Several studies suggested that the link between parental PMADs and offspring NDDs might be impacted by both genetic and environmental factors, including the impact of ongoing parental depression on child behavior.
Conclusions
Parental PMADs are associated with increased risk of NDDs in children. These findings likely reflect a combination of inherited liability and environmental processes; clarifying mechanisms will require genetically informed designs. Regardless of mechanism, offering optional, family-centered developmental support may help promote child well-being in families where a parent is experiencing PMADs.
Adults with intellectual disability (ID) experience marked mental health inequities, yet population-wide estimates that capture both primary- and specialist-care diagnoses remain scarce.
Methods
Using nationwide Swedish registries, including primary care, specialist, inpatient, prescription drug, criminal, and suspicion registers, we included all individuals born in Sweden between 1958 and 1997 (N = 3,970,600), including 38,818 individuals with ID diagnoses (0.98%; 49.1% mild, 13.3% moderate, and 9.6% severe/profound). Hazard ratios (HR) were calculated using Cox proportional hazards regression to estimate the relative risk of lifetime diagnoses of major depression, anxiety disorders (ANX), obsessive-compulsive disorder (OCD), bipolar disorder (BD), attention-deficit/hyperactivity disorder (ADHD), drug use disorder, alcohol use disorder, schizophrenia, and other nonaffective psychosis. Additionally, cohort effects on psychiatric diagnosis risks in adults with intellectual disabilities versus the general population were evaluated.
Results
People with ID were at higher risk for all psychiatric and substance use disorders, with HRs ranging from 1.7–2.0 for major depression and anxiety, drug and alcohol use disorders, 3.5–5.8 for BD, OCD and ADHD, and 10.9–12.7 for schizophrenia and other nonaffective psychosis. Higher prevalence was consistently seen among those with mild versus moderate or severe/profound intellectual disability. Relative risks narrowed modestly in successive birth cohorts, although absolute differences remained substantial.
Conclusions
Across six decades of follow-up, adults with ID faced markedly higher psychiatric and substance-use morbidity – most pronounced for psychotic disorders – than the general population. Whole-system mental-health screening and tailored interventions are required to address this persistent disparity.
Welfare assessments can harm the mental health of neurodivergent individuals and people with intellectual disabilities, yet this remains under-recognised in clinical practice. This article integrates three perspectives: media reporting on private profit in UK disability assessments; a clinical case of an autistic man whose deterioration was triggered by Personal Independence Payment and Universal Credit reassessment; and research on the experiences of people with learning disabilities. Common themes include fear, shame, loss of agency and reactivated trauma. Psychiatrists should view welfare systems as determinants of mental health, adopt trauma-informed, neurodiversity-aware approaches and support patients through advocacy and interdisciplinary collaboration.
Easy Language (EL) presents information in a simplified way and benefits people who have difficulty understanding standard language. The present study evaluates the effects of visual support inclusion, as it is a recurring recommendation in EL guidelines. We examined 52 adults (23 men and 29 women; mean age of 39.9; 26 with intellectual disabilities [ID], 26 neurotypical) in a mixed design study. They read EL texts that presented either no visual support, photographs or illustrations. Their eye movements were recorded, and they answered comprehension, text difficulty and style preference questions. The inclusion of visual support had no effect on comprehension, nor did the type of visual support (photographs/illustrations). The group (ID/neurotypical) and the type of visual support also showed no effects on the perceived difficulty of the text. Neurotypical participants showed a preference for illustrations. Photographs may be more difficult to interpret than illustrations due to longer fixations and shorter saccades in both groups. The group with an ID showed more and longer fixations, especially on text and whitespace, while the neurotypical group tended to explore the image more. Results prompt a discussion on the potential improvements of EL guidelines and highlight the need for similar empirical studies in the area.
Early Positive Approaches to Support (E-PAtS) is a co-produced group intervention supporting family carers of children (0–5 years) with additional developmental needs. This study compared online (n = 10) and in-person (n = 11) groups to investigate whether mode of delivery was associated with different outcomes. Participants were 98 family carers reporting on their mental well-being, self-efficacy, child symptoms and knowledge pre and post intervention. Generalised estimating equations compared outcomes between groups, controlling for group cluster effects.
Results
Mental well-being improved significantly across both groups (d = 0.47, 95% CI: 0.30, 0.63), as did an in-session measure concerning mechanisms of change (d = 1.28, 95% CI: 0.97, 1.59) and all other assessed outcomes. There were no significant differences in measured outcomes between online and in-person groups.
Clinical implications
Establishing the equivalence of in-person with online groups is an important first step for improving service reach and support access for families of children with additional developmental needs.
To assess satisfaction and pain-related knowledge levels following an inclusive Pain Neuroscience Education (PNE) programme in improving pain-related knowledge and perceived satisfaction among adolescents with and without intellectual disabilities, and to assess its applicability in digital health education settings. Methods: A multicentre, cross-sectional study was conducted in 15 public schools. A total of 373 students (5th–6th grade), including those with intellectual disabilities, participated in a hybrid-format PNE programme delivered in two 90-minute sessions. Satisfaction and knowledge were assessed using an adapted, easy-to-read questionnaire, with exploratory factor analysis identifying three core domains: activity format, teacher evaluation, and SDG-related training. Results: Overall satisfaction and knowledge gains were high across all participants. No significant differences were found between students with and without intellectual disabilities or between urban and rural schools in satisfaction and teacher evaluation. However, rural students reported greater awareness of the SDG-related content (p < 0.05). Conclusion: The adapted PNE programme was well-received and associated with high levels of pain-related knowledge across diverse educational contexts. Its inclusive and hybrid design supports its potential scalability through digital health strategies, promoting equity in pain education.