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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.
Behaviours that challenge are highly prevalent in children with an intellectual disability and can be detrimental to their quality of life and opportunities.
Aims
The systematic review aimed to investigate the effectiveness of current interventions in reducing behaviours that challenge in children with an intellectual disability (≤18 years-old).
Method
We searched five databases (PsychINFO, MEDLINE, Embase, Web of Science and CINAHL) on 26 April 2022 and 1 July 2024, and identified 18 randomised controlled trials (1443 participants) eligible for inclusion since 2014 – 11 investigated non-pharmacological and 9 investigated pharmacological interventions. Risk of bias was assessed using the Cochrane Risk of Bias 2 tool.
Results
Non-pharmacological interventions (mostly psychosocial) were significantly effective (Hedges’ g = −0.20; 95% CI [−0.35, −0.05]), whereas pharmacological interventions (including a wide range of drug classes and substances) were not (g = 0.03; 95% CI [−0.17, 0.24]). Studies using the Child Behaviour Checklist reported significant reductions (g = −0.18; 95% CI [−0.34, −0.02]), whereas studies using the Aberrant Behaviour Checklist did not (g = 0.04; 95% CI [−0.16, 0.25]). A random-effects meta-analysis indicated no overall significant reduction in behaviours that challenge (g = −0.12; 95% CI [−0.24, 0.00]).
Conclusions
It is important to note that most studies included were conducted in Western countries and had small sample sizes, and findings may be due to the outcome measures used. Findings support current recommendations that non-pharmacological interventions should be first-line treatment for behaviours that challenge in this population. Evidence highlighted the need for better quality, adequately powered randomised controlled trials.
Off-licence psychotropic use in people with intellectual disability and/or autism, in the absence of psychiatric illness, is a major public health concern in England.
Aims
To ascertain and compare views of psychiatrists and non-psychiatrists working with people with intellectual disability and/or autism on psychotropic medication optimisation for this population.
Method
A cross-sectional survey of 13 questions was disseminated online among psychiatrists and other health professionals working with people with intellectual disability and/or autism across England, using a non-discriminatory exponential snowballing technique leading to non-probability sampling. The questionnaire covered demographic characteristics, perceived barriers/benefits of psychotropic optimisation (including ethnicity) and views on implementation of a national medicine optimisation programme. Quantitative analysis used chi-squared, Mann–Whitney and unpaired t-tests, with significance taken as P < 0.05. Thematic analysis of free-text responses was undertaken with Braun and Clarke’s methodology.
Results
Of 219 respondents, significant differences in attitudes to most issues emerged between psychiatrists (n = 66) and non-psychiatrists (n = 149). Psychiatrists had less optimism of a successful national medication optimisation programme if commissioned, or achieving 50% reduction in psychotropic overprescribing and inappropriate psychotropic prescribing generally. Perceived barriers to reducing overmedication differed significantly between the psychiatrists and non-psychiatrists, Thematic analysis identified five themes (system issues, resources, medication challenges, family and carers, and training and alternatives/structure).
Conclusions
This is the first study to highlight important differences between psychiatrists and non-psychiatrists’ attitudes to psychotropic optimisation despite respondents overall being broadly supportive of its need. A major finding is the hitherto unquantified concerns of patient ethnicity and its impact on psychotropic optimisation principles.
Health and mental health professionals often lack knowledge and confidence to provide quality healthcare to people with intellectual disability and those on the autism spectrum. Educational interventions are proposed as solutions, but their effectiveness and optimal characteristics remain unclear.
Aims
To evaluate the effectiveness of educational interventions in improving health professionals’ knowledge, skills, attitudes, confidence and/or self-efficacy in providing care to people with intellectual disability and those on the autism spectrum.
Method
A mixed-methods systematic review was conducted searching six major databases, adhering to PRISMA guidelines (PROSPERO CRD42022309194). Studies were included if they assessed outcomes of educational interventions aimed at improving health professionals’ capacity to provide care to people with intellectual disability and/or those on the autism spectrum.
Results
We identified 34 studies: five focused on intellectual disability, two on intellectual and developmental disabilities, and 27 on autism. All reported positive findings, although heterogeneity of measures limited synthesis. Most studies (30 out of 34) employed single group pre-test/post-test designs, with only nine using validated outcome measures. Only eight studies reported co-design or co-delivery involving people with lived experience.
Conclusions
Educational interventions demonstrate positive effects on heath professionals’ capacity to provide care. Significant gaps include limited evidence for adult-focused interventions, uncertainty about optimal delivery modes and duration, and minimal inclusion of people with lived experience in intervention design and delivery. Future interventions should involve people with lived experience in design and delivery, and incorporate validated outcome measures to enhance evidence quality.
The NHS 2025 Health Plan aims for radical reform but overlooks people with intellectual disability. This editorial highlights critical omissions in policy, services, research and rights protections. Without intentional inclusion, digital and community shifts risk deepening inequality. True progress demands co-produced strategies to ensure equitable care for this vulnerable population.
Howard CH Khoe, National Psychiatry Residency Programme, Singapore,Cheryl WL Chang, National University Hospital, Singapore,Cyrus SH Ho, National University Hospital, Singapore
Chapter 24 covers the topic of autism spectrum disorder (ASD) and intellectual developmental disorder. Through a case vignette with topical MCQs for consolidation of learning, readers are brought through the diagnosis to management of a patient with ASD. Topics covered include symptoms and diagnosis of autism, Asperger’s syndrome, common co-morbidities, intellectual developmental disorder, risk factors, pharmacological and non-pharamacological management of autism.
Intellectual disability is defined as an IQ of 70 or below. Women with intellectual disability frequently experience menstrual distress leading to the use of hormonal medications such as depot medroxyprogesterone acetate (DMPA). Despite risks such as reduced bone mineral density (BMD) and weight gain, DMPA is widely used in this cohort, prompting investigation into its suitability and risks.
Aims
A narrative review and local service evaluation were conducted to determine whether clinical management reflected recommendations in the literature.
Method
PsycINFO and Medline were searched for articles post-1995 on contraception in menstruating women with intellectual disability. Contraceptive use in 100 randomly selected women was evaluated. Data were collected on physical health issues, general practitioner records were reviewed for contraceptive administration and risk discussions, and surveys assessed risk understanding and satisfaction.
Results
The review identified 27 papers with higher DMPA use in the intellectual disability population compared to the general population, and specific BMD risks. The case series found 23 women with intellectual disability using DMPA, and revealed knowledge gaps in risk and monitoring, inappropriate use given individual risk, and poor proactive risk management.
Conclusions
Findings indicate disproportionate DMPA use in women with intellectual disability, with inadequate clinical justification and risk awareness. Many women and carers were unaware of BMD risks, and DMPA alternatives were rarely considered. Individualised contraceptive management and closer review of DMPA use in this cohort is needed. Monitoring could include dual X-ray absorptiometry (DEXA) scans, vitamin D and calcium supplementation, and weight management. Further research is needed into higher DMPA use and risks within this population.
Group cognitive stimulation therapy (CST) has been shown to improve cognition and quality of life of people with dementia in multiple trials, but there has been scant research involving people with intellectual disability and dementia. This study aimed to assess the feasibility of conducting a randomised controlled trial of group CST for this population.
Aims
To assess the feasibility of participant recruitment and retention, the appropriateness of outcome measures, and the feasibility of group CST (adherence, fidelity, acceptability), as well as the feasibility of collecting data for an economic evaluation.
Method
Participants were recruited from six National Health Service trusts in England and randomised to group CST plus treatment as usual (TAU) or TAU only. Cognition, quality of life, depression, and use of health and social care services were measured at baseline and at 8–9 weeks. Qualitative interviews with participants, carers and facilitators were used to explore facilitators of and barriers to delivery of CST. Trial registration number: ISRCTN88614460.
Results
We obtained consent from 46 participants, and 34 (73.9%) were randomised: 18 to CST and 16 to TAU. All randomised participants completed follow-up. Completion rates of outcome measures (including health economic measures) were adequate; 75.7% of sessions were delivered, and 56% of participants attended ten or more. Fidelity of delivery was of moderate quality. CST was acceptable to all stakeholders; barriers included travel distance, carer availability and sessions needing further adaptations. The estimated cost per participant of delivering CST was £602.
Conclusions
There were multiple challenges including recruitment issues, a large dropout rate before randomisation and practical issues affecting attendance. These issues would need to be addressed before conducting a larger trial.
This chapter explores legislative time limits on the prosecution of crime in civil and common law jurisdictions. It addresses the rationales for barring the prosecution of old crimes and undertakes a comparative analysis of three jurisdictional groupings: Continental Europe (with a focus on Germany and France), the Commonwealth (with a focus on England and Wales) and the United States (with a focus on federal law). The analysis identifies comparable features in limitation doctrine across jurisdictions while revealing how the theory and practice of statutes of limitation differs markedly in different legal systems. In broad terms, Continental systems codify general and categorical time limits on the prosecution of offences; Commonwealth systems tend not to have any statutory time bars on the prosecution of offences other than minor offences; and in the United States, most offences, other than the most serious, are subject to statutory limitation periods. The chapter concludes by drawing together the points of comparison between the three jurisdictional groupings, commenting on their distinctions and similarities.