Professor Raja Mukherjee MBE

Prenatal alcohol exposure (PAE) and traumatic childhood experiences (trauma) such as abuse or neglect can each cause central nervous system neurobiological changes or structural damage which can manifest as cognitive and behavioural dysfunction. In cases where both exposures have occurred, the risk of neurodevelopmental impairment may be greater, but this interaction has not been well studied. Here we present a systematic review that identified five primary research studies which investigated either the impact of trauma in children with PAE, or of PAE in children with trauma. Due to the heterogeneity of studies, narrative analysis was applied. Children in these cohorts with both exposures were more likely to show deficits in language, attention, memory and intelligence, and exhibit more severe behavioural problems than children with one exposure in absence of the other. However, the current literature is scarce and methodologically flawed. Further studies are required that: assess dual exposure in other neurodevelopmental domains; feature developmentally impaired yet non exposed controls; and account for the wide spectrum of effects and different diagnostic criteria associated with PAE.

Aims: Research has shown varying results regarding safe consumption levels of alcohol during pregnancy. We argued in 2005 that an individual's inability to accurately predict her alcohol consumption may be one factor influencing risk. In order to re-evaluate within the England, this study sought to assess the current knowledge of the public and of healthcare practitioners. Design: Both alcohol-knowledge questionnaires and pouring tasks were conducted using standardised ethical-committee-approved methods. Settings: Different sites across England, including Surrey, London, Oxford and Wigan, where FASD support groups are based. Participants: Health professionals and the general public, self-selecting in response to advertisement. Measurements: Frequency data and categorical data was collected and analysed using SPSS version 18. Findings: In total, 1,265 questionnaires were completed (688 public and 577 professionals). One hundred-forty people completed the pouring task. People's ability to calculate accurately from strength and volume was within 20% of the accurate figure for units, although with a wide range. Conclusions: These findings support the hypothesis that when pouring their own drinks, individuals are poor at estimating each drink's alcohol content. This has implications for public health strategies. Glass size and the level of alcohol concentration have different implications in different countries. For those drinking during pregnancy, however, the message that "no exposure is no risk" remains true.

Alcohol readily crosses the placenta and may disrupt fetal development. Harm from prenatal alcohol exposure (PAE) is determined by the dose, pattern, timing and duration of exposure, fetal and maternal genetics, maternal nutrition, concurrent substance use, and epigenetic responses. A safe dose of alcohol use during pregnancy has not been established. PAE can cause fetal alcohol spectrum disorders (FASD), which are characterized by neurodevelopmental impairment with or without facial dysmorphology, congenital anomalies and poor growth. FASD are a leading preventable cause of birth defects and developmental disability. The prevalence of FASD in 76 countries is >1% and is high in individuals living in out-of-home care or engaged in justice and mental health systems. The social and economic effects of FASD are profound, but the diagnosis is often missed or delayed and receives little public recognition. Future research should be informed by people living with FASD and be guided by cultural context, seek consensus on diagnostic criteria and evidence-based treatments, and describe the pathophysiology and lifelong effects of FASD. Imperatives include reducing stigma, equitable access to services, improved quality of life for people with FASD and FASD prevention in future generations. Fetal alcohol spectrum disorders (FASD) are characterized by neurodevelopmental impairment with or without facial dysmorphology, congenital anomalies and poor growth. This Primer discusses the epidemiology, pathophysiology, diagnosis and treatment of FASD.

Screening children for developmental disorders presents unique ethical and methodological challenges, particularly with disorders associated with high levels of shame and stigma. Fetal alcohol spectrum disorder (FASD) is a neurodevelopmental condition resulting from prenatal alcohol exposure. The potential distress caused by informing parents that their child may have FASD has been cited as a significant barrier to conducting such studies. However, limited research has investigated the impact of screening for FASD on parents and children. This exploratory study aimed to examine the experiences of a small sample of parents participating in an active case ascertainment prevalence study screening for FASD in Greater Manchester, UK (ADD-GM study). Interviews were conducted with six parents, whose children aged 8–10 years, underwent screening (including three cases of FASD). Thematic analysis was performed on the collected data to identify key themes and patterns. The analysis revealed that parents perceived participation in the study as worthwhile, and their children either enjoyed or were indifferent to the process of data collection. Parents of children identified with FASD reported that although the results were surprising, they did not find the experience overly distressing. The findings suggest that parents generally view participation positively and perceive limited negative impact. These insights contribute to a better understanding of the challenges and benefits associated with screening children for FASD. •Six parents, who took part in a study screening for developmental disorders in mainstream schools were interviewed.•Parents perceived participation in the study as worthwhile.•Children either enjoyed or were indifferent to their part in data collection.•Parents of children identified with FASD reported they did not find the experience overly distressing.•These insights contribute to a better understanding of the challenges and benefits associated with screeningfor FASD.

The next 2 years will see radical changes to the way medical training is delivered. In order to begin meeting the complex problems linked with these changes, the Royal College of Psychiatrists has developed higher specialist competencies, and will begin to address basic specialist competencies. Assessment forms are a core component of this. The College examination as it currently exists may need radical re-evaluation to meet these changes. In response to this, the Collegiate Trainees' Committee requested a document be produced to facilitate discussion within the Committee and the wider College about changing training needs. Summarises the main areas of that document. Includes a response. (Quotes from original text)

Purpose COVID-19 has been challenging for many in the UK. This is no different to many with autism spectrum disorder. Based on the experiences and issues raised by a small group of autistic women in an ongoing support group, consideration if this holds true for the wider adult autistic community across further lockdowns and restrictions to public life was explored. Design/methodology/approach An online questionnaire was created based on the issues raised. Participants indicated the degree to which they agreed or disagreed with each statement. Findings Autistic adults experienced an increase in anxiety and poor mental health, which in turn has exacerbated autistic features, such as rigidity. The data indicates that autistic adults can adapt to change provided there is support in maintaining routines. Research limitations/implications The research is limited due to the small number of participants (N = 120), as well as national variations in service provision. Practical implications Our data raises wider questions about the nature of support for autistic adults without cognitive impairments during times of crises and how services can respond and may even be shaped in the future to provide support that is cost-effective and relevant to autistic adults. Social implications To ensure that services have an awareness of how crises impact on autistic adults and how relatively simple changes may avert poor mental health. Originality/value That the creation of local support networks, and the ability to access these, is a key feature of autism-specific support.

Extant literature is sparse with regards to the relationship between caregiver reports and neuropsychological tests of executive functioning in Fetal Alcohol Spectrum Disorders (FASD). The goal of this paper was determining the clinical utilities of executive functioning measures used in the United Kingdom national FASD clinic. We examined relationships between outcomes on the Behavior Rating Inventory of Executive Function (BRIEF) and the Delis-Kaplan Executive Function System (D-KEFS), as part of an ongoing service evaluation. Profiles of executive functioning measures were reported in order to contribute to delineating a profile of executive dysfunction in FASD. Caregivers of 49 people with FASD completed the Parent BRIEF, and 61 people with FASD were administered the D-KEFS. Pearson's Correlations between all 11 BRIEF scales and the 18 selected D-KEFS subscales showed little relationship. The BRIEF showed a profile of clinically significant elevations in all three Index scores and seven out of the eight Scale scores. Several D-KEFS tests showed below average executive functioning. Both executive function measures have separate clinical utility in demonstrating executive function deficits in FASD. The sample population used in this study also show a similar pattern to FASD populations internationally, suggesting a similar neuropsychological profile is seen in the United Kingdom. However, caregiver reports display little relationship to neuropsychological tests. These measures likely monitor different aspects of executive functioning in different settings. Future research should focus on identifying tests that better relate findings from clinical settings to behavior in daily life.

FASD has changed in terms of recognition and management in the UK over the last two decades. While the UK has always had a strong history of working and recognizing neurodevelopmental conditions such as ASD and ADHD, the same could not be said for FASD. In the last 20 years there has been increasing recognition, investment, and development of both research and service. This chapter will explore the development of FASD services and how its traditions with wider neurodevelopmental disorders helped understand FASD with that background context and look finally at the progress made in terms of clinical and research in this field.

Estimates for the UK suggest that alcohol consumption during pregnancy and prevalence of fetal alcohol spectrum disorder (FASD)—the most common neurodevelopmental condition—are high. Considering the significant health and social impacts of FASD, there is a public health imperative to prioritise prevention, interventions and support. In this article, we outline the current state of play regarding FASD knowledge and research in the UK, which is characterised by a lack of evidence, a lack of dedicated funding and services, and consequently little policy formulation and strategic direction. We highlight progress made to date, as well as current knowledge and service gaps to propose a way forward for UK research.

Background Despite high levels of prenatal alcohol exposure in the UK, evidence on the prevalence of fetal alcohol spectrum disorders (FASD) is lacking. This paper reports on FASD prevalence in a small sample of children in primary school. Methods A 2-phase active case ascertainment study was conducted in 3 mainstream primary schools in Greater Manchester, UK. Schools were located in areas that ranged from relatively deprived to relatively affluent. Initial screening of children aged 8-9 years used prespecified criteria for elevated FASD risk (small for age; special educational needs; currently/previously in care; significant social/emotional/mental health symptoms). Screen-positive children were invited for detailed ascertainment of FASD using gold standard measures that included medical history, facial dysmorphology, neurological impairment, executive function, and behavioral difficulties. Results Of 220 eligible children, 50 (23%) screened positive and 12% (26/220) proceeded to Phase 2 assessment. Twenty had a developmental disorder, of whom 4 had FASD and 4 were assessed as possible FASD. The crude prevalence rate of FASD in these schools was 1.8% (95% CI: 1.0%, 3.4%) and when including possible cases was 3.6% (2.1%, 6.3%). None of these children had previously been identified with a developmental diagnosis. Conclusions FASD was found to be common in these schools and most of these children's needs had not previously been identified. A larger, more definitive study that uses a random sampling technique stratified by deprivation level to select schools is needed to make inferences regarding the population prevalence of FASD.

Introduction Fetal Alcohol Spectrum Disorder (FASD) is one of the leading non-genetic causes of developmental disability worldwide and is thought to be particularly common in the UK. Despite this, there is a lack of data on FASD in the UK. Objective To conduct public and professional involvement work to establish stakeholder views on the feasibility, acceptability, key purposes, and design of a national linked longitudinal research database for FASD in the UK. Methods We consulted with stakeholders using online workshops (one for adults with FASD [and their supporters] N = 5; one for caregivers of people with FASD (N=7), 1:1/small-team video calls/email communication with clinicians, policymakers, data-governance experts, third-sector representatives, and researchers [N=35]), and one hybrid clinical workshop (N = 17). Discussions covered data availability, benefits, challenges, and design preferences for a national pseudonymised linked database for FASD. We derived key themes from the notes and recordings collected across all involvement activities. Results Our tailored, multi-method approach generated high levels of stakeholder engagement. Stakeholders expressed support for a pseudonymised national linked database for FASD. Key anticipated benefits were the potential for: increased awareness and understanding of FASD leading to better support; new insights into clinical profiles leading to greater diagnostic efficiency; facilitating international collaboration; and increased knowledge of the long-term impacts of FASD on health, social care, education, economic and criminal justice outcomes. Given the rich data infrastructure established in the UK, stakeholders expressed that a national linked FASD database could be world-leading. Common stakeholder concerns were around privacy and data-sharing and the importance of retaining space for clinical judgement alongside insights gained from quantitative analyses. Conclusions Multi-method and multidisciplinary public and professional involvement activities demonstrated support for a national linked database for FASD in the UK. Flexible, diverse, embedded stakeholder collaboration will be essential as we establish this database.

Purpose - Over the last few years increasing numbers of Autism Spectrum Disorder (ASD) services have been established across the country. The different services use varying models and the level of complexity seen in each is unclear. The paper aims to discuss this issue. Design/methodology/approach - In order to facilitate the development of the next phase of service provision the three geographical areas covered by SABP ASD services were compared. Modified Global Assessment of Functioning (mGAF) scores were calculated for 75 patients from each area before being compared across various domains to identify the complexities in each area covered. Findings - Overall high levels of complexity were seen, with 85 per cent presenting with a serious or major functional difficulty based on, mGAF scores. Originality/value - This has planning implications both for commissioners and future service development as previously not identified at a time when services are continuing to expand.

Purpose Fetal alcohol spectrum disorder (FASD) is an umbrella term for a range of conditions that may occur in an individual whose mother drank alcohol during pregnancy. There has been little research into the experience of birth mothers of children with FASD and no published work of this kind in the UK. This is in contrast to a number of studies that have been conducted on foster/adoptive parents. In light of the recent publication in the UK of a mixed methods study on adoptive carers, it is timely to conduct research on birth mothers in the UK. The purpose of this paper is to explore the experiences of birth mothers following a diagnosis of FASD in their children. Design/methodology/approach An interpretive phenomenological analytical approach was used to generate themes from individual semi-structured interviews of five women who are birth mothers of children with FASD. Findings Four superordinate main themes and various subthemes were identified. To blame or not to blame captures the tension the mothers experience when considering the cause of their child's condition. Life is a series of battles which describes the struggles the women experience on a crusade with a renewed sense of purpose that captures the process of transformation that occurs, which helps describe the internal and external factors that help the mothers cope. Originality/value FASD is often described in the literature as being completely preventable with the implication that it is the mother's fault because they drank alcohol during pregnancy. However, a statement like this fails to portray the complexities of the phenomenon of women drinking during pregnancy. Life is difficult for the women for a number of different reasons, yet a sense of hope is present. The mothers have a renewed sense of purpose to do the best they can for their child and to raise awareness of FASD. Understanding their experiences can help service providers better meet the needs of parents and children affected by FASD.

The UK's services for adult attention-deficit hyperactivity disorder (ADHD) are in crisis, with demand outstripping capacity and waiting times reaching unprecedented lengths. Recognition of and treatments for ADHD have expanded over the past two decades, increasing clinical demand. This issue has been exacerbated by the COVID-19 pandemic. Despite an increase in specialist services, resource allocation has not kept pace, leading to extended waiting times. Underfunding has encouraged growth in independent providers, leading to fragmentation of service provision. Treatment delays carry a human and financial cost, imposing a burden on health, social care and the criminal justice system. A rethink of service procurement and delivery is needed, with multiple solutions on the table, including increasing funding, improving system efficiency, altering the service provision model and clinical prioritisation. However, the success of these solutions hinges on fiscal capacity and workforce issues.

Background: Internationally, 0.97 per 1,000 live births are affected by foetal alcohol syndrome (FAS). However, prevalence intelligence has been limited in the UK, hindering the development of appropriate services. This analysis compares hospital admissions over time, between regions and with alcohol-related admissions for adult females to assess whether established patterns (such as the North experiencing elevated harms) can be identified. Methods: A retrospective analysis of hospital admissions data (April 2002 to March 2008) for foetal alcohol spectrum disorder (FASD)-related conditions: foetal alcohol syndrome (dysmorphic) (n = 457); foetus and newborn affected by maternal use of alcohol (n = 157); maternal care for (suspected) damage to foetus from alcohol (n = 285); and 322,161 women admitted due to alcohol-related conditions. Results: Whilst the rate of admission for alcohol-related conditions in women aged 15-44 years increased significantly by 41% between 2002/03 and 2007/08 (p < 0.0001), no such increases were seen in the numbers of FASD-related conditions (all p < 0.05). Established regional rates of admission for alcohol-related conditions in women aged 15-44 years old were not associated with admission for FASD-related conditions. Conclusions: It would be expected that the North West and North East regions, known to have higher levels of alcohol harm would have higher levels of FASD-related conditions. However, this was not reflected in the incidence of such conditions, suggesting under-reporting. With incomplete datasets, intelligence systems are severely limited, hampering efforts to develop targeted interventions. Improvements to intelligence systems, practitioner awareness and screening are essential in tackling this.

Background: The association of attention deficit/hyperactivity disorder (ADHD) and fetal alcohol spectrum disorders (FASD) results in a complex constellation of symptoms that complicates the successful diagnosis and treatment of the affected individual. Current literature lacks formal guidelines, randomized control trials, and evidence-based treatment plans for individuals with ADHD and associated FASD. Therefore, a meeting of professional experts was organized with the aim of producing a consensus on identification and treatment guidelines that will aid clinicians in caring for this unique patient population. Methods: Experts from multiple disciplines in the fields of ADHD and FASD convened in London, United Kingdom, for a meeting hosted by the United Kingdom ADHD Partnership (UKAP; www.UKADHD.com) in June 2015. The meeting provided the opportunity to address the complexities of ADHD and FASD from different perspectives and included presentations, discussions, and group work. The attendees worked towards producing a consensus for a unified approach to ADHD and associated FASD. Results: The authors successfully came to consensus and produced recommended guidelines with specific regards to identification and assessment, interventions and treatments, and multiagency liaisons and care management, highlighting that a lifespan approach to treatment needs to be adopted by all involved. Included in the guidelines are: 1) unique 'red flags', which when identified in the ADHD population can lead to an accurate associated FASD diagnosis, 2) a treatment decision tree, and 3) recommendations for multiagency care management. Conclusions: While clinically useful guidelines were achieved, more research is still needed to contribute to the knowledge base about the diagnosis, treatment, and management of those with ADHD and associated FASD.

In comparison to the neurotypical population, individuals with fetal alcohol spectrum disorders (FASD) are over-represented in the criminal justice system (CJS). This study explores the perspectives of a small sample of individuals with FASD regarding the factors that predispose them to encounters with the CJS, and their experiences during investigative interviews. Semi-structured interviews were conducted with ten individuals with FASD, aged between 12 and 46 years old (mean age 20.1 years). Interviews were a combination of remote audio-recorded, video-recorded, and face-to-face interviews administered by parents/carers. NVivo was used to collate, organise, and explore data. Data were analysed by reflexive thematic analysis. Three over-arching themes were generated from seven sub-themes: “personality/individual triggers to CJS encounters” which described vulnerabilities, such as a tendency to be impulsive and to accept suggestions, “encounters ‘fuelled’ by society” where examples of exploitation, police's aggressive approach and lack of knowledge were given. The final theme of “sense of self-awareness” demonstrated that participants had a sense of appreciation of their strengths and abilities. Individuals with FASD are highly vulnerable to, and within, encounters with the CJS. Procedural justice will benefit by employing alternative methods in dealing with situations where individuals with FASD may be involved, and in obtaining information via interviews from the FASD population.

Chromosomal copy-number variations (CNVs) are a class of genetic variants highly implicated in the aetiology of neurodevelopmental disorders, including intellectual disabilities (ID), schizophrenia and autism spectrum disorders (ASD). Yet the majority of adults with idiopathic ID presenting to psychiatric services have not been tested for CNVs. We undertook genome-wide chromosomal microarray analysis (CMA) of 202 adults with idiopathic ID recruited from community and in-patient ID psychiatry services across England. CNV pathogenicity was assessed using standard clinical diagnostic methods and participants underwent comprehensive medical and psychiatric phenotyping. We found an 11% yield of likely pathogenic CNVs (22/202). CNVs at recurrent loci, including the 15q11-q13 and 16p11.2-p13.11 regions were most frequently observed. We observed an increased frequency of 16p11.2 duplications compared with those reported in single-disorder cohorts. CNVs were also identified in genes known to effect neurodevelopment, namely NRXN1 and GRIN2B. Furthermore deletions at 2q13, 12q21.2-21.31 and 19q13.32, and duplications at 4p16.3, 13q32.3-33.3 and Xq24-25 were observed. Routine CMA in ID psychiatry could uncover similar to 11% new genetic diagnoses with potential implications for patient management. We advocate greater consideration of CMA in the assessment of adults with idiopathic ID presenting to psychiatry services.

Whilst much has been written about understanding the diagnostic and underlying pathological processes related to prenatal alcohol exposure, far less has been directed at the management of affected individuals. We undertake a review of the literature focusing on a range of interventions including psychological, social, educational, pharmacological as well recent advances and directions. This paper is designed to give an overview on the management of this complex disorder.

Aim: To describe the neurodevelopmental phenotype of older children and adults with a diagnosis of Fetal Valproate Spectrum Disorder (FVSD).Methods: In this cross-sectional study, 90 caregivers were recruited and completed a series of questionnaires regarding the neurodevelopmental outcomes of 146 individuals aged 7-37 years (M = 18.1), includingdividuals with a formal diagnosis of FVSD (n = 99), individuals exposed to Valproate but without an FVSD diagnosis (n = 24), and individuals not exposed to Valproate (N = 23). The mean dose of valproate exposure for individuals with an FVSD diagnosis was 1470 mg/day.Results: Individuals with a diagnosis of FVSD showed significantly higher levels of moderate (43.4%) and severe (14.4%) cognitive impairment than other groups (p = 0.003), high levels of required formal educational support (77.6%), and poorer academic competence than individuals not exposed to Valproate (p = 0.001). Overall psychosocial problems (p = 0.02), internalising problems (p = 0.05) and attention problems (p = 0.001), but not externalising problems, were elevated in individuals with a diagnosis of FVSD. Rates of neurodevelopmental disorders, particularly autistic spectrum disorders (62.9%) and sensory problems (80.6%) are particularly central to the FVSD phenotype. There was no evidence of a statistical dose-dependent effect, possibly due to the high mean dose of exposure having a uniformly negative impact across the sample. Individuals with FVSD had required a significant number of health and child development services.Interpretation: Children and young adults with a diagnosis of FVSD are at an increased risk of a range of altered neurodevelopmental outcomes, highlighting the need for a multidisciplinary approach to clinical management across the lifespan.

Individuals with foetal alcohol spectrum disorders (FASD) are estimated to be 19 times more likely to encounter the criminal justice system (CJS) in comparison to individuals without FASD. During encounters with the CJS, investigative interviews are employed to obtain accurate information from suspects, victims or witnesses of crime. A systematic search using PRISMA guidelines was performed to identify empirical studies published that have explored the questioning of the FASD population within the CJS and the vulnerabilities of FASD-impacted individuals during investigative interviewing. A total of 383 studies were identified from the databases searched and 7 further studies were identified from Google Scholar. After deduplication, abstract and title screening, the full text of 23 studies were assessed for inclusion and 5 were included in the narrative synthesis of results. Two papers were empirical studies focussed on the performance of FASD-impacted individuals during investigative interviewing. Whilst the first study found the FASD population susceptible to suggestions, the second (a case study), identified the ploys employed during investigative interviewing to obtain a confession. Three papers studied the wider vulnerabilities of FASD-impacted individuals and found diminished psycho-legal abilities, increased risk of recidivism and biological, psychological and social factors that render FASD-impacted individuals vulnerable to CJS encounters. Despite the greater likelihood of CJS encounters, the result of this review highlights the slim evidence base useful to establish the vulnerabilities of FASD-impacted individuals within the CJS.

Neurobehavioral Disorder associated with Prenatal Alcohol Exposure (ND-PAE) was proposed as a diagnostic formulation intended to capture the range of mental health problems occurring in alcohol-affected individuals with a history of prenatal alcohol exposure. The proposed criteria for the disorder are reviewed as well as various factors considered in the development of the disorder and its associated criteria. The taxonomic research related to the disorder is reviewed with preliminary analyses indicating that clinicians are readily able to agree when applying the diagnostic criteria but that the adaptive functioning criteria may need to be modified to expand its coverage of alcohol-affected individuals and to aid in discriminating these individuals from others not alcohol-affected. Finally, the challenges with translating the diagnosis into European medical and mental healthcare systems are discussed and recommendations for facilitating implementation are made.

Disentangling the relative developmental impact of prenatal alcohol exposure from postnatal neglect is clinically valuable for informing future service provision. In this study, developmental outcomes across groups are compared in a 'natural experiment'. Methods: Clinical data from 99 persons with fetal alcohol spectrum disorder (FASD) diagnoses were audited. Developmental outcomes (diagnosis of attention deficit hyperactivity disorder, ADHD; social and communication disorder, SCD; or Autistic Spectrum Disorder, ASD; Short Sensory Profile, SSP; Vineland II Adaptive Behaviour Scales) were compared across two exposure groups: prenatal alcohol only; and mixed prenatal alcohol and neglect. Results: ADHD (74%) and ASD/SCD (68%) were common, with no significant difference between groups (ADHD, p = 0.924; ASD, p = 0.742). Vineland age equivalence scores were lower than chronological age (11.1 years - prenatal alcohol only, and 12.7 years - neglect) across all domains, especially receptive language (3.7 years for both groups). Age equivalence did not differ between groups, with the exception of domestic daily living (neglect: 7.7 years vs. prenatal alcohol only: 5.8 years, p = 0.027). A probable/definite difference on SSP was more common in the prenatal alcohol only (96% vs. 67%, p = 0.006). For the individual subscales of SSP, there were no significant differences by neglect category. Discussion: Postnatal neglect in this group did not make the developmental outcome any worse, suggesting that prenatal alcohol influences these outcomes independently. Professionals who support families looking after a child with both FASD and a history of neglect should be aware that the behavioral difficulties are likely to be related to prenatal alcohol exposure and not necessarily reflective of parenting quality. (C) 2018 The Authors. Published by Elsevier Inc.

(1) It might be implied that those with Fetal Alcohol Spectrum Disorder (FASD) with fewer sentinel facial features have a "milder" neuropsychological presentation, or present with fewer impairments than those with more sentinel facial features. The aim of this service evaluation was to compare the neuropsychological profile of people with FASD with varying numbers of sentinel facial features. (2) A clinical sample of 150 individuals with FASD, aged between 6 and 37 years, completed various standardised assessments as part of their diagnostic profiling. These included the documented level of risk of prenatal alcohol exposure (4-Digit Diagnostic Code), sensory needs (Short Sensory Profile), cognition (Wechsler Intelligence Scale for Children-4th Edition; WISC-IV), and communication and socialisation adaptive behaviours (Vineland Adaptive Behavior Scale-2nd Edition; VABS-II). As FASD has high comorbidity rates of Autism Spectrum Disorder (ASD) and Attention Deficit Hyperactivity Disorder (ADHD), these were also reviewed. The profiles of the 'FASD with 2 or 3 sentinel facial features' group (n = 41; 28 male, 13 female) were compared with the 'FASD with 0 or 1 sentinel facial features' group (n = 109; 50 male, 59 female) using Chi(2) tests, independent sample t-tests, and Mann-Whitney U analyses (where appropriate). (3) There were no significant differences between the two comparison groups across any measure included in this service evaluation. (4) Whilst sentinel facial features remain an important aspect in recognising FASD, our service evaluation indicates that there is no significant relationship between the number of sentinel facial features and the neuropsychological profile of people with FASD in terms of severity of presentation.

Fetal alcohol spectrum disorders (FASDs) are lifelong disabilities caused by prenatal alcohol exposure. Prenatal alcohol use is common in the UK, but FASD prevalence was unknown. Prevalence estimates are essential for informing FASD prevention, identification and support. We applied novel screening algorithms to existing data to estimate the screening prevalence of FASD. Data were from a population-based cohort study (ALSPAC), which recruited pregnant women with expected delivery dates between 1991 and 1992 from the Bristol area of the UK. We evaluated different missing data strategies by comparing results from complete case, single imputation (which assumed that missing data indicated no exposure and no impairment), and multiple imputation methods. 6.0% of children screened positive for FASD in the analysis that used the single imputation method (total N = 13,495), 7.2% in complete case analysis (total N = 223) and 17.0% in the analysis with multiply imputed data (total N = 13,495). A positive FASD screen was more common among children of lower socioeconomic status and children from unplanned pregnancies. Our analyses showed that the complete case and single imputation methods that are commonly used in FASD prevalence studies are likely to underestimate FASD prevalence. Although not equivalent to a formal diagnosis, these screening prevalence estimates suggest that FASD is likely to be a significant public health concern in the UK. Given current patterns of alcohol consumption and recent changes in prenatal guidance, active case ascertainment studies are urgently needed to further clarify the current epidemiology of FASD in the general population of the UK. •Up to 79% of women consumed alcohol while pregnant.•Up to 17% of children screened positive for a fetal alcohol spectrum disorder (FASD).•Alcohol-related neurodevelopmental disorder was the most common FASD subtype.•Screening is not equivalent to formal diagnosis. Follow-up studies required.•A positive FASD screen was more common following unplanned pregnancy.

A growing number of evidence-based services are available for fetal alcohol spectrum disorder (FASD), but few focus on caregiver psychoeducation. Despite new guidance in the UK requiring FASD services, the evidence base for effective interventions is currently lacking. An FASD caregiver training program would be a novel and valuable addition to service provision. SPECIFiC (Salford parents and carers education course for improvements in FASD outcomes in children) was developed using an evidence-based logic model with input from clinicians, families, and the charity sector. The course was delivered online to a small number ( n  = 9) of families in a mixed-methods, exploratory pre-feasibility study. Families were represented by either one or two caregivers, all of whom were adoptive parents or special guardians of a child with FASD. Parent perceptions were assessed using semi-structured interviews. The performance of proposed outcome measures (stress, psychological functioning, parenting self-efficacy, knowledge of FASD, and child behavioral difficulties) was evaluated. Pre- and post-measures were acceptable and showed promise as outcome measures for a future trial. Participants spoke positively about the course, welcomed the opportunity to discuss their own situations with other FASD caregivers, found the advice to be immediately useful, and described the course as therapeutic. Suggestions for improvements tended to focus on timing and technical issues. Based on a small sample, SPECIFiC was shown to be an acceptable and feasible psychoeducation program. Further evidence from a randomized controlled trial is needed to evaluate whether SPECIFiC can lead to reduced stress in parents, improved parenting self-efficacy, and ultimately a reduction in children’s behavioral difficulties. Highlights New psychoeducation program for caregivers of children with FASD Dual delivery by professional trainer and experienced caregiver Small pre-feasibility study ( n  = 9) suggests the program is acceptable and feasible Participants responded positively to the program

Fetal alcohol syndrome and its wider spectrum of presentation fetal alcohol spectrum disorders represent a range of disorders that are sometimes difficult to recognise as they may present in a way that overlaps with other conditions. This makes identification and recognition challenging, which increases the burden associated with the disorder. When considering the reduction in morbidity, both prevention of exposure to alcohol by the fetus and early identification of cases are required. This selective review seeks to highlight some of the complexities involved as well as highlighting the challenges. By considering populations particularly at risk to exploring the reality of alcohol risk it will seek to offer some solutions to begin the process of change.

Three of the most prevalent developmental disorders (DDs) are autism spectrum disorder (ASD), attention‐deficit/hyperactivity disorder (ADHD) and fetal alcohol spectrum disorder (FASD). As part of a study screening for DDs in Greater Manchester, UK, a unique opportunity was taken to explore parents' experiences of receiving reports about their child's previously unrecognised DD. Six parents out of a possible 16 took part in interviews, which were analysed thematically. Findings drawn from parental responses revealed a number of barriers to accessing support for their child's additional needs, including perceived resistance from schools, particularly for quiet, well‐behaved girls, and difficulty in accessing assessment or referrals. There needs to be greater awareness of additional needs in children without externalising behaviours, the presence of gender‐specific differences in the presentation of DDs, and FASD as a commonly occurring DD. Ultimately, better support for children with DDs would reduce the burden of unmet needs for the children and their families, and for wider services.

FASD is a complex neurodevelopmental disorder related to prenatal alcohol exposure. A diagnosis of both inclusion and exclusion it is one that has been frequently missed due to the complexity of the overlap in symptoms with other conditions. It is only by careful evaluation of features, ruling out and ruling in symptoms that a confident diagnosis can be made. Whilst FASD remains one of the most common causes of developmental delay, having been first recognized in 1973, many aspects remain unclear and under investigation. The rates of the disorder have been recognized to be as high as 3–8% of the population depending on the group studied. When considering poor understanding and recognition of the disorder alongside uncertain individual exposure risk prevention of the disorder remains a challenge. The article will focus on the background, exposure risk, pathology and clinical evaluation and management of this disorder.

This review is based in part on Dr Mukherjee's lecture at the RCPE Mental Health Needs of Children and Young People Symposium held in Edinburgh on 29 September 2011.

Associations between fetal alcohol syndrome (FAS) and other conditions have been reported, but the links between FAS and autistic spectrum disorders (ASD) remain unclear. This study explored the relationship between FAS and ASD in individuals attending a specialist diagnostic clinic. Consecutive referrals over 24 months to a specialist neurodevelopmental clinic were evaluated using gold standard methods for FAS diagnosis and ASD. The first 18-month cohort who met criteria for ASD were compared with controls attending the same clinic but who had not experienced prenatal alcohol exposure (nested data). Data for the whole group were also collected. Twenty-one fetal alcohol spectrum disorder (FASD) individuals were assessed and 16 (72%) met ICD-10 criteria for childhood autism. Further significant differences between the prenatally exposed and non-exposed group with ASD were found in the nested study. The research shows an association between heavy prenatal alcohol exposure and ASD. As this is a small sample in a specialist clinic; the study suggests that a larger; more population-based study of those exposed to heavy prenatal alcohol is warranted.

PurposeRecent research has proposed a specific female phenotype within autism spectrum disorder (ASD). It suggests females exhibit differences in social communication styles with higher levels of camouflaging and compensatory strategies, as well as variance in restrictive repetitive behaviours (RRBs); however, many existing studies have been based on either small, disproportionate or child and adolescent samples, leaving questions about the specific phenotype. This study aims to explore the sex difference and phenotype in a clinic sample of individuals diagnosed with autism.Design/methodology/approachA service evaluation of sex/ gender differences on 150 historical ASD assessment reports (75 males, 75 females) using a 103-item questionnaire developed from a quantitative review of existing literature was undertaken.FindingsFemales camouflaged more significantly than males in five different areas (thinking how to act next, preparing conversation in advance, making lists of prompts/social responses, wearing a mask/acting, less monotone voice); however, these were not maintained in post-analysis correction.Originality/valueThis study points the evidence towards a different phenotype of Autism that is more common in women than men rather than a unique female phenotype.

Purpose The purpose of this paper is to explore the profiles of behaviours and adaptive functioning in the UK children and young people with fetal alcohol spectrum disorders. Design/methodology/approach Data of 106 participants registered from 2005 to 2015 were extracted from a clinic database. In total, 99 individuals with confirmed prenatal alcohol exposure (PAE), aged from 5 to 25 years, were analysed using scaled scores of the Vineland Adaptive Behavior Scales-Second Edition (VABS-II), and the Developmental Behaviour Checklist-Primary Carer Version (DBC-P) and Teacher Version (DBC-T). Differences due to age, gender, IQ and family structure (adopted/living with birth parents) were also explored. Findings The mean composite adaptive behaviour score on the VABS-II was classified as "low" at 68.2 (SD=8.5), with the socialisation domain being the most impaired. Significantly lower VABS-II composite scores were found in individuals with lower IQ's, older ages and in males. Disruptive behaviours were the most commonly observed on the DBCs, whereas primary carers scored significantly higher than teachers across all subscales. IQ, age and gender were not associated with the total percentile scores of both DBCs. Adoption made no differences compared to living with birth parents. Research limitations/implications - Future studies would replicate these findings in a larger sample size including individuals without PAE and those living with birth parents. Originality/value - This study is the first UK report that examines this issue.

Research suggests that caring for a child with Fetal Alcohol Spectrum Disorders (FASD) creates unique challenges for carers. To investigate this, three focus groups and education sessions, attended by 66 people, were held in the UK. Knowledge about FASD and its impact on families was evaluated using the focus groups, the Parental Stress Index and knowledge questionnaire. Eight broad themes were identified from thematic analysis of the focus groups. The findings suggest more support is needed for carers of children with FASD, especially as carers grow older. The implication for current practice should be further evaluated in this group.

While information from other countries suggests varying degrees of knowledge about foetal alcohol spectrum disorders (FASD), understanding of the condition among UK health professionals is unclear. This mixed methodology study aims to ascertain the UK picture. It comprised a standardised FASD questionnaire completed by 505 professionals and focus groups using semi-structured interviews. Among those professionals who attended focus groups, five broad themes were identified: lack of knowledge: need for consistent guidance; stigma: need for early intervention; and need for support services. The study highlights a need for training and improved recognition by professionals. Reluctance to diagnose could be due to associated stigma and therefore not merely reflect lack of knowledge. As an avoidable disorder the importance of prevention, as well as early identification of FASD to avert secondary disabilities such as mental health issues, highlights the need for specialist diagnostic and support services.

BackgroundSelective serotonin reuptake inhibitors (SSRIs) are commonly prescribed to manage anxiety in adults with an autism diagnosis. However, their effectiveness and adverse effect profile in the autistic population are not well known. This trial aims to determine the effectiveness and cost-effectiveness of the SSRI sertraline in reducing symptoms of anxiety and improving quality of life in adults with a diagnosis of autism compared with placebo and to quantify any adverse effects.MethodsSTRATA is a two-parallel group, multi-centre, pragmatic, double-blind, randomised placebo-controlled trial with allocation at the level of the individual. It will be delivered through recruiting sites with autism services in 4 regional centres in the United Kingdom (UK) and 1 in Australia. Adults with an autism diagnosis and a Generalised Anxiety Disorder Assessment (GAD-7) score >= 10 at screening will be randomised 1:1 to either 25 mg sertraline or placebo, with subsequent flexible dose titration up to 200 mg. The primary outcome is GAD-7 scores at 16 weeks post-randomisation. Secondary outcomes include adverse effects, proportionate change in GAD-7 scores including 50% reduction, social anxiety, obsessive-compulsive symptoms, panic attacks, repetitive behaviours, meltdowns, depressive symptoms, composite depression and anxiety, functioning and disability and quality of life. Carer burden will be assessed in a linked carer sub-study. Outcome data will be collected using online/paper methods via video call, face-to-face or telephone according to participant preference at 16, 24 and 52 weeks post-randomisation, with brief safety checks and data collection at 1-2, 4, 8, 12 and 36 weeks. An economic evaluation to study the cost-effectiveness of sertraline vs placebo and a QuinteT Recruitment Intervention (QRI) to optimise recruitment and informed consent are embedded within the trial. Qualitative interviews at various times during the study will explore experiences of participating and taking the trial medication.DiscussionResults from this study should help autistic adults and their clinicians make evidence-based decisions on the use of sertraline for managing anxiety in this population.Trial registrationISRCTN, ISRCTN15984604. Registered on 08 February 2021. EudraCT 2019-004312-66. ANZCTR ACTRN12621000801819. Registered on 07 April 2021.

Fetal alcohol spectrum disorder (FASD) is a common disorder, yet one that is still under recognised in the UK. Both the public and professionals in the UK have a limited amount of knowledge about the subject, with the neuropsychological profiles and subtleties of presentation causing confusion. This often means that many people are mislabelled or not diagnosed. We report findings from the UK National FASD behavioural clinic and how these presentations lead to challenges in improving the clinical and research situation in the UK. The UK has the potential to improve research, recognition, provision and behavioural management strategies for this group quickly; however, this will need a more structured approach than is currently in existence.

Fetal alcohol spectrum disorder (FASD) is one outcome from prenatal alcohol exposure. Social workers are likely to encounter children with the condition, due to the greater likelihood of prenatal alcohol exposure among children in social services settings. This study explores the experiences of social workers in working with children suspected of having FASD and the support offered to social workers, the children and their families. Semi-structured interviews followed by qualitative framework analysis were conducted with seven child and family social workers along with one child protection solicitor who had experience of handling FASD cases. The two main themes that emerged from the data were a lack of knowledge about FASD and the paucity of diagnosis. Lack of knowledge among the social workers was linked to difficulty in managing children suspected to have the condition, feelings of frustration and normalisation of challenging behaviours. The paucity of diagnosis led to an under-emphasis of FASD in assessments, a dearth of specialist services and confusion about its specific effects in contexts of multiple substance misuse and harmful socio-environmental factors. The need for increased FASD awareness within social services and the development of FASD-targeted support for children and families is highlighted. Social workers would benefit from the inclusion of FASD-focused training in their curricula and professional development plans. Improving the diagnostic capacities of health institutions would address the paucity of diagnosis and raise the profile of FASD, especially in the social services setting.

Foetal alcohol spectrum disorders describes a group of disorders caused by the consumption of prenatal alcohol. The range of outcomes and the clinical management of these disorders vary in both the complexity of their presentations, associated disorders and management outcomes. This article seeks to review the literature around some of the more difficult areas associated with the condition and present some insights into possible ways of managing the psychiatric and neurodevelopmental disorders seen in the context of the UK system and the NHS.

Medical research literature is increasingly reporting high levels of stress among carers of children with Fetal Alcohol Spectrum Disorders (FASD). However, while there are a growing number of evidence-based innovations around the world for carer stress generally, there are no programmes in the UK for those looking after children with FASD. The aim of this study, therefore, is to provide an up-to-date profile of stress faced by these carers, to explore its sources and suggest directions for service development. Seventy-one carers and their child with FASD participated in a study designed for this purpose. Parental stress levels were assessed using the Parental Stress Index (PSI) and the characteristics of their children – cognition, adaptive behaviour, sensory processing and externalising behaviour function – by a battery of measures. Further correlational and regression analyses were carried out to explore the nature and source of the carer stress identified. When the levels of stress in families was measured, all six Child Domains on the PSI showed results that were above the clinically significant cut-off for high stress, while all seven Parent Domains were below this threshold. Significant associations were found between the PSI and child behaviours, but generally the Parent Domain and Child Behaviours were not correlated. Regression analysis found executive functioning difficulties in children to be the main predictors of carer stress but sensory difficulties were not significant, despite 83% of the children having elevated problems of this kind. Total stress scores among carers of children with FASD were elevated and far exceeded the threshold score on the PSI, suggesting a need for ‘further professional consultation’. Consideration of parental needs and the development of evidenced-based interventions specific for these carers are highlighted as areas for future development.

It has been claimed that mothers' drinking during pregnancy may affect the neurodevelopment of around 1% of all children. If this is true, then prenatal alcohol exposure represents an important risk factor for neurodevelopmental problems, giving rise to a large burden of disability which could be potentially preventable. Evidence to support this idea has come from animal experiments and human observational studies. However, such findings need to be supported by more robust research designs. Because randomized controlled trials in this area are neither feasible nor ethical, suggestions are made for further research making more use of natural experiments.

Fetal alcohol spectrum disorder (FASD) is related to many comorbidities because of the permanent effects of prenatal alcohol exposure on the fetus. We aimed to identify the comorbid conditions that co-occur in individuals with FASD and estimate the pooled prevalence of comorbid conditions occurring in individuals with fetal alcohol syndrome (FAS). We did a systematic literature search of studies reporting on the comorbidity and cause of death in individuals with FASD using multiple electronic bibliographic databases, searching for studies published up to July, 2012. We included original research published in a peer-reviewed journal in the English language. We used the following criteria for determining study quality: use of an established FASD diagnostic guideline, study setting, method of data collection, and sample size. All comorbid disease conditions were coded according to the International Classification of Diseases, tenth revision (ICD-10). To estimate the pooled prevalence of comorbid conditions found to co-occur in individuals with FAS, we did meta-analyses assuming a random-effects model. Of 5068 studies found, 127 met eligibility criteria for data extraction. From those studies, we identified 428 comorbid conditions co-occurring in individuals with FASD, spanning across 18 of 22 chapters of the ICD-10. The most prevalent disease conditions were within the sections of congenital malformations, deformities, and chromosomal abnormalities, and mental and behavioural disorders. 33 studies reported data for frequency in a total of 1728 participants with FAS. The five comorbid conditions with the highest pooled prevalence (between 50% and 91%) included abnormal results of function studies of peripheral nervous system and special senses, conduct disorder, receptive language disorder, chronic serous otitis media, and expressive language disorder. The high prevalence of comorbid conditions in individuals with FASD highlights the importance of assessing prenatal alcohol exposure as a substantial clinical risk factor for comorbidity. The harmful effects of alcohol on a developing fetus represent many cases of preventable disability, and thus, alcohol use during pregnancy should be recognised as a public health problem globally. Public Health Agency of Canada.

IntroductionFoetal alcohol spectrum disorders (FASD) are a set of preventable conditions where the foetus is exposed to alcohol in utero and as a result suffers adverse consequences. To develop a public health strategy related to FASD, it is important to first establish what is known by the public about this condition. This study aimed to assess the current level of knowledge about FASD in the UK general population. MethodsA mixed methodology study was conducted using a 17-item questionnaire and focus group sessions. Four focus groups were held with an average of 10 people in each group. Semi-structured questions and thematic analysis of interviews alongside quantitative analysis of the questionnaire data was completed. The research was approved by an National Health service (NHS) research ethical committee. ResultsA total of 674 people responded to the questionnaire and a majority (86.7%) had heard about FASD, with most receiving their information from the media (26.2%) or from their work (27.7%). Four broad themes emerged. Overall these were: a general lack of knowledge about the subject; information about the subject needed to be personally relevant; there was a need for further education; and there was a lack of clarity in the current guidance on alcohol use in pregnancy. Discussion and conclusionsCurrently there appears to be a superficial level of knowledge about FASD in the UK general public. More detailed work in subgroups, such as young women, to identify their specific needs may be necessary before targeted public health and educational interventions can be developed to meet the needs of the general public.

PurposeWhilst recruitment and retention of high-quality staff is vital to providing a good service, at the time of the evaluations, Kent, Surrey and Sussex (KSS) was the only area of the UK without a Higher Specialist Training (HST) scheme in intellectual disability (ID). The purpose of this project was to identify barriers to recruitment and support the need for change. Design/methodology/approachThis evaluation included conducting interviews with 16 practitioners in the region with links to ID to consider the gaps in training and find solutions. FindingsFour themes were identified, namely, good experiences are important to recruiting people into the ID field; bad experiences or lack of exposure to people with ID are likely to prevent engagement with this field; there is an ongoing need for specialist psychiatrists in ID services; and there is a developing need for specialists in neurodevelopmental disorders. Finally, the challenge means we need to think differently about developing a workforce. Seven recommendations to support workforce delivery in KSS were developed. Originality/valueThis paper highlights an important rationale for ongoing need for HST in ID work and also reasons to engage people in this field. This has not been undertaken in the ID field in this way previously.

Purpose of review Our understanding of the diagnosis and management of Foetal Alcohol Spectrum Disorders (FASD), has been increasingly refined in the last 45 years: This review highlights current understanding and identifies future areas for research. Recent findings Newer techniques such as three-dimensional facial recognition and advanced brain imaging, have advanced our understanding. Despite this, there remain areas, such as the relationship with other neurodevelopmental disorders, that have been insufficiently explored. Understanding the unique management approaches required is still in its infancy. However, progress is being made to treat specific aspects in FASD. Summary Foetal alcohol syndrome has progressed from identification primarily through recognition of physical stigmata, to a broad understanding of neurocognitive function in the full spectrum of alcohol exposure. Understanding of neurocognitive functioning has helped to define a specific phenotype to delineate FASD from other neurodevelopmental disorders. This review explores some of these areas and demonstrates how the field has changed since its recognition 45 years ago.

It is now recognised that autism spectrum disorder (ASD) and personality disorders (PDs) have a variety of factors in common. However, the exact nature of the relationship between ASD and the PDs remains unclear. The overlapping symptom profiles of ASD and PDs can lead to diagnostic uncertainty - features of ASD and PD can be misattributed and easily lead to misdiagnosis of ASD patients. Since differentiating between ASD and PD is such a complex task, it has been argued that there is a need for additional understanding and markers for facilitating diagnostic procedures. There is an urgent need to explore, first, how clinicians make diagnostic decisions and, second, how to effectively deal with the challenges and difficulties they face when making decisions. Also, where there are clear overlaps, how do clinicians choose how to attribute labels in order to understand the person.