To save content items to your account,
please confirm that you agree to abide by our usage policies.
If this is the first time you use this feature, you will be asked to authorise Cambridge Core to connect with your account.
Find out more about saving content to .
To save content items to your Kindle, first ensure no-reply@cambridge.org
is added to your Approved Personal Document E-mail List under your Personal Document Settings
on the Manage Your Content and Devices page of your Amazon account. Then enter the ‘name’ part
of your Kindle email address below.
Find out more about saving to your Kindle.
Note you can select to save to either the @free.kindle.com or @kindle.com variations.
‘@free.kindle.com’ emails are free but can only be saved to your device when it is connected to wi-fi.
‘@kindle.com’ emails can be delivered even when you are not connected to wi-fi, but note that service fees apply.
We evaluated proportions of autism screening outcomes among adults accessing crisis mental health services in Sussex, UK, and examined associations with quality of life and joint hypermobility as an indicator of physiological complexity. Fifty-five participants (mean age 35.7 years, 56% male, 85% White) completed autism and hypermobility screening questionnaires and the Mental Health Quality of Life Questionnaire. Forty-three participants (78%) scored above screening threshold for autism, although only eight had a prior diagnosis, and 27% scored above the published autistic median. Higher Ritvo Autism and Asperger Diagnostic Scale (RAADS-14) scores were associated with lower quality of life (p < 0.001) and poorer well-being (p < 0.01). Those screening positive for hypermobility also had higher RAADS-14 scores (p = 0.01), suggesting a possible biological contribution to distress. Findings indicate high frequency of possible autism in crisis services and a need for tailored, biopsychosocially informed support.
The National Health Service England’s Learning from Lives and Deaths of People with a Learning Disability and Autistic People programme is the world’s only national mortality review system for people with intellectual disability. Abandoning national mortality surveillance risks making preventable deaths less visible, with profound consequences for equity in healthcare.
Philosopher Ian Hacking noted that people respond to being placed in categories – setting up an iterative process that leads to (sometimes radical) changes in the features used to diagnose group membership. Hacking called this process making up people, and the interactions that were its underlying mechanism he called looping effects, which he saw as an important means both to advocacy and overdiagnosis. Hacking was sceptical of the idea of an autistic spectrum, not least because it carried a risk of overdiagnosing people with few symptoms. These are important messages for the current debate about diagnosis in autism.
Over the past few decades, English health policy for people with intellectual disability has been shaped by legitimate concerns regarding care standards and the need for an inclusive health agenda. However, policies may be driven more by ideology than by empirical evidence. This editorial critically examines this premise using seven topical examples: (a) reduction of specialist in-patient beds, (b) mainstreaming healthcare, (c) specialist services challenges exemplified by children and forensic pathways for intellectual disability, (d) absence of application of outcome measures, (e) lack of a coordinated research agenda, (f) changes to mental health legislation and (g) the conflation of autism and intellectual disability. We highlight the risks of implementing large-scale system transformation without adequate evidence or evaluation of the impact of policy initiatives. We argue and provide recommendations for a rebalancing of policy towards evidence-based service design, investment in research and maintenance and development of specialist expertise.
Neurodevelopmental and psychiatric disorders differ in onset and course but comorbidity between groupings is high. Diagnostically siloed services risk fragmented care, misdiagnosis, inefficiency and clinical risk. Such services also deskill clinicians and intensify waiting list pressures and budget competition. We propose more person-centric systems to reduce risk and improve outcomes.
Autistic people are at high risk of mental health problems, yet psychiatrists report limited training and confidence with respect to autism. The National Autism Training Programme for Psychiatrists aimed to improve recognition and earlier diagnosis of autism and to promote reasonable adjustments and autism-informed practice. Over 1500 psychiatrists completed the foundation course, and over 250 undertook the enhanced course. Substantial improvements were observed in ten core autism-related competencies, alongside widespread reports of changes to individual clinical practice. The programme is among the largest autism training initiatives ever delivered to psychiatrists and provides important lessons for future programmes.
Autism spectrum disorder (ASD) is a lifelong neurodevelopmental condition with substantial functional and societal burden. However, national data on ASD burden remain limited in many middle-income countries, including Jordan.
Aims
This study aimed to quantify temporal trends in the prevalence, incidence and disability burden of ASD in Jordan from 1990 to 2023, using estimates from the Global Burden of Disease (GBD) study 2023.
Method
This population-based longitudinal study used GBD 2023 estimates to quantify the burden of ASD in Jordan from 1990 to 2023. As national epidemiological data are limited, estimates were generated with GBD’s Bayesian meta-regression modelling based on regional covariates. Annual prevalence, incidence and years lived with disability (YLDs) were extracted as counts and rates per 100 000 population with 95% uncertainty intervals, and analysed by age, gender and temporal trends.
Results
Between 1990 and 2023, the burden of ASD in Jordan increased substantially, with estimated point-prevalence cases rising from 23 919 to 97 056, and YLDs increasing from 4541 to 18 399. Point estimates of age-standardised prevalence, incidence and YLD rates increased over time, with consistently higher burdens among males and the highest rates observed in early childhood, particularly ages 2–9 years. However, wide and frequently overlapping 95% uncertainty intervals suggest that temporal changes should be interpreted with caution.
Conclusions
This study describes modelled trends in ASD burden in Jordan from 1990 to 2023, showing an overall increase in prevalence, incidence and disability-related measures. These findings should be interpreted cautiously given the reliance on GBD modelled estimates, but they may support Jordanian and similar countries’ future planning of health services and research priorities.
This opinion article looks at how autism services for children and young people are organised within child development and child and adolescent mental health services. Although both play vital roles, their responsibilities often overlap, which can lead to delays and uncertainty for families. Rising demand, limited resources and differing pathways have added further pressure, especially since the COVID-19 pandemic. The article highlights key challenges, including age cut-offs, gaps in continuity, the need for a collaborative integrated model, the impact of stigma and the difficulties faced by children whose main needs relate to developmental delay. It argues for clearer pathways and more coordinated care.
The management of attention-deficit hyperactivity disorder (ADHD) continues to burden healthcare systems globally. This challenge is compounded by fragmented care pathways and escalating waiting times. In England, the NHS commissioned an independent taskforce to review existing ADHD services, understand the challenges in care and make recommendations for system-wide reform. It furnished its final report in 2025, documenting a comprehensive vision for reform. The report stresses substantial unmet needs, persistent underdiagnosis, variation in service provision and the wider implications of untreated ADHD. This paper examines the taskforce’s recommendations and how they are relevant to ADHD care. It highlights its key strengths, such as advocacy for a needs-led, cross-sector approach covering healthcare, education, employment, justice systems and data infrastructure. Several challenges, including sustained funding commitments, poor consistency around diagnostic standards and limited guidance on National Health Service and private sector integration, are also discussed. It points out crucial areas such as medication oversight and the role of emerging technologies. Although the taskforce offers a credible reform framework overall, a consistent, well-resourced and measurable effort is required before the vision can be materialised. The lessons outlined may also be relevant internationally in addressing gaps in ADHD care and improving long-term outcomes.
There has been much recent debate about diagnosis in neurodevelopmental disorders, both within and outside of psychiatry. Using the examples of attention-deficit hyperactivity disorder and autism spectrum disorder, we argue for the virtues of the clinical diagnostic hierarchy to improve formulation and make better decisions about treatment.
Lennox-Gastaut syndrome (LGS) is characterized by drug-resistant seizures, cognitive impairment, and significant comorbidities, requiring lifelong care. Despite therapeutic advances, real-world management and system-level barriers in Canada are not well defined. A national survey was conducted to examine Canadian practices in LGS diagnostic approaches, therapies, comorbidity management, counseling practices, and transition services, aiming to identify gaps and guide quality improvement initiatives.
Methods:
Following a literature review, a 41-item web-based survey was developed and distributed to neurologists and allied health workers via the Canadian League Against Epilepsy and the Canadian Neurological Sciences Federation.
Results:
Among 111 respondents (77% physicians; 79% academic practice), diagnostic confidence was limited: 46% believed LGS is both over- and underdiagnosed, and only 5% felt most patients are accurately identified. Adult diagnosis was considered particularly challenging (46%). Genetic testing for unknown etiologies was routine for 67% and, however, was more common among pediatric than adult neurologists (81% vs 41%, p < 0.001). Valproic acid (98%), clobazam (82%), and lamotrigine (75%) were the most common first-line anti-seizure medications (ASMs), yet 67% rated available treatments as inadequate. Reported treatment barriers included limited ASM efficacy (68%), adverse effects (38%), and comorbidity management challenges (37%). Corpus callosotomy was perceived as underutilized (71% overall), suggesting access disparities. Time and resource limitations hindered comorbidity screening. Only 23% reported access to formal transition programs.
Conclusions:
Significant gaps remain in the diagnosis and management of LGS in Canada, particularly in treatment, comorbidity screening, and transition care. National guidelines, standardized pathways, and improved access to multidisciplinary services are needed to enhance outcomes.
Attention-deficit hyperactivity disorder (ADHD) is a common neurodevelopmental disorder that substantially affects behaviour, social functioning and daily performance. However, long-term population-based evidence on its burden in Jordan remains limited.
Aims
This study aimed to assess trends in incidence, prevalence and years lived with disability (YLDs) due to ADHD in Jordan from 1990 to 2023.
Method
A population-based descriptive analysis was conducted using data from the Global Burden of Disease (GBD) 2023 study. ADHD incidence, prevalence and YLDs in Jordan from 1990 to 2023 were extracted and stratified by gender and age group (2–9, 10–19 and 20–69 years). Estimates were reported as rates per 100 000 population, and absolute numbers with 95% uncertainty intervals, following standard GBD methods.
Results
ADHD burden was observed across all age groups in Jordan. Among children aged 2–9 years, incidence ranged from 279.9 to 352.3 per 100 000, prevalence exceeded 5000 per 100 000 in both 1990 and 2023 and YLD rates ranged from 214.8 to 262.8 per 100 000. In adolescents, the burden was concentrated among those aged 10–14 years, with prevalence around 526 per 100 000 and YLDs of 21 per 100 000 in both years; no estimates were reported for ages 15–19 years. In adults aged 20–69 years, although no incident cases were recorded, prevalence remained notable in 2023, ranging from 1626.8 per 100 000 (20–49 years) to 535.2 per 100 000 (50–69 years), with YLD rates between 69.1 and 22.4 per 100 000. Males consistently showed higher burden estimates than females across all age groups.
Conclusions
ADHD is a prevalent and a major source of non-fatal health loss in Jordan from early childhood through adulthood. These findings provide a comprehensive, long-term assessment of ADHD burden in Jordan and establish a robust evidence base for national, regional and global comparisons.
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.
This editorial examines the current debate surrounding attention-deficit hyperactivity disorder prevalence, the perceived surge in diagnoses and the growing pressure on healthcare services. It discusses the wide methodological variation in recent studies, the limited pool of high-quality evidence and the challenges this creates when trying to understand true population rates. The article highlights the gap between stable epidemiological estimates and the marked rise in referrals, waiting lists, private assessments and prescribing. It explores how increased awareness, evolving diagnostic criteria and improved detection of previously unrecognised cases contribute to the overall picture, along with the role of social media and shifting societal attitudes. Implications for policy and clinical practice are outlined, emphasising the need for efficient clinical pathways, better-quality data and more comprehensive, multi-informant assessments.
Perinatal depression and/or anxiety (depression–anxiety) have been associated with developmental disruptions. Less attention has been paid to preconception mental health, which could also contribute to adverse outcomes.
Aims
To examine whether preconception mental health is associated with developmental vulnerability in children who were either exposed or unexposed to prenatal depression.
Method
A population-based, retrospective cohort including 130 631 births to 108 340 pregnant people from British Columbia (Canada) between 1 January 2001 and 31 December 2012, with child development data in the form of the Early Development Instrument (EDI). Logistic regression using cluster-robust standard errors was used to compare the odds of vulnerability on EDI domains.
Results
Children born to pregnant people in all groups with depression–anxiety preconception history were more likely to be considered vulnerable on all developmental domains, except for communication skills and general knowledge, than those without prenatal depression and no preconception depression–anxiety. After adjusting for confounders, effect size was largest for children born to a person with prenatal depression who had persistent depression–anxiety before they conceived on the domains of physical health and well-being (adjusted odds ratio 1.73 [95% CI: 1.56–1.92]). Children born to people with prenatal depression but no preconception depression–anxiety were probably more vulnerable on social competence and emotional maturity domains than those without prenatal depression and no preconception depression–anxiety.
Conclusions
Preconception mental health is associated with child development, even after accounting for depression in pregnancy. We hypothesise that it is picking up on different experiences of mental illness through the life course and represents slightly different fetal exposures.
Females are less likely than males to be diagnosed with attention–deficit hyperactivity disorder (ADHD). When diagnosed, females are older than males.
Aims
In this study, we examined the childhood antecedents of later ADHD diagnosis and its impact on adolescent/emerging adult outcomes, with a focus on females.
Method
In this cohort study, we used data from a Welsh nation-wide electronic cohort of 13 593 individuals (n = 2680 (19.7%) females) diagnosed with ADHD and 578 793 individuals (n = 286 734 (49.5%) females) without ADHD. We compared females with later diagnoses (ages 12–25) to those with earlier, timely diagnoses (ages 5–11) and no diagnosis, in terms of childhood (ages 5–11) antecedents and adolescent/adult (ages 12–25) outcomes. We also tested for sex differences.
Results
Although females with earlier ADHD diagnosis showed more health and educational difficulties in childhood than those with later diagnosed ADHD (odds ratios ranged from 0.18 to 0.92), there was clear evidence of these difficulties in females with later diagnosed ADHD, compared with females without ADHD (odds ratios: 1.07–9.02). In adolescence/early adulthood, females with later diagnosed ADHD used more healthcare services and had worse mental health, educational and socioeconomic outcomes than females diagnosed earlier (odds ratios: 1.39–4.96) and those without ADHD (odds ratios: 1.54–23.98). Many of these outcomes were exacerbated in females compared with males.
Conclusions
The results demonstrate that later ADHD diagnosis is associated with significant negative outcomes by adolescence and disproportionately disadvantages females. Despite later diagnosis, there was clear evidence of childhood mental health and educational difficulties when compared with females without ADHD. Therefore, timely childhood ADHD diagnosis may help to mitigate later risks, especially for females.