Neurodevelopmental Disorders
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Response to ABAI Task Force on the Use of Contingent Electric Skin ShockIn this article, the authors provide their response to the Association for Behavior Analysis International (2022) position statement on the use of contingent electric skin shock (CESS). In this response, we address concerns raised by the task force regarding limitations of the Zarcone et al. (2020) review article in which both methodological and ethical concerns were raised about the quality of research in the use of CESS with people with disabilities in the treatment of challenging behavior. We note that with the exception of the Judge Rotenberg Center in Massachusetts, no state or country currently supports the use of CESS as it is not recognized as the standard of care in any other program, school, or facility.
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Easy read health information for people with intellectual disabilities: A linguistic discourse analysis. What happens to language when it is simplified?Introduction Easy Read health documents prepared for people with intellectual disabilities are often generated from Standard Texts. Language in Easy Read versions is typically assumed to be simpler. However, simplification of language may have unintended consequences. This study aimed to explore the differences in language used between Easy Read health material and the Standard Text versions of the same material produced for the general population. Methods Five Easy Read/Standard Text pairs were sampled and analysed using Systemic Functional Linguistics. This addressed: how people with intellectual disabilities and others were represented by language, the author stance in relation to the reader and the overall organisation of the text. Results The Easy Read versions often used language that was less empowering and inclusive. Conclusion Increased awareness of author power and better knowledge of the impact of language choice could help to redress these issues.
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Behavioural interventions to treat anxiety in adults with autism and moderate to severe intellectual disabilities: The BEAMS-ID feasibility studyBackground: The aim of this feasibility study was to adapt and model a behavioural intervention for anxiety with autistic adults with moderate to severe intellectual disabilities. Method: Twenty-eight autistic adults with moderate or severe intellectual disabilities, 37 carers, and 40 therapists took part in this single-group non-randomised feasibility study designed to test intervention feasibility and acceptability, outcome measures, and research processes. Results: The intervention was judged as feasible and acceptable by autistic adults with intellectual disabilities, carers, and therapists. Minor intervention revisions were suggested. Carers completed 100% of outcome measures and the missing data rate was low. Complying with legislation governing the inclusion of participants who lack capacity to decide whether they wanted to take part in this study led to an average 5-week enrolment delay. Conclusion: The intervention and associated study processes were judged to be feasible and acceptable and should now be tested within a larger randomised trial.
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Psychiatry and neurodevelopmental disorders: experts by experience, clinical care and researchPeople with neurodevelopmental disorders often present with challenging behaviours and psychiatric illnesses. Diagnosis and treatment require patients, families and healthcare professionals to work closely together in partnership, acknowledging their respective areas of expertise. Good treatment outcomes should also be underpinned by robust research evidence. Key research priorities are highlighted.
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The relationship between clinical presentation and the nature of care in adults with intellectual disability and epilepsy – national comparative cohort studyBackground: A quarter of People with Intellectual Disabilities (PwID) have epilepsy compared with 1% of the general population. Epilepsy in PwID is a bellwether for premature mortality, multimorbidity and polypharmacy. This group depends on their care provider to give relevant information for management, especially epilepsy. There is no research on care status relationship and clinical characteristics of PwID and epilepsy. Aim: Explore and compare the clinical characteristics of PwID with epilepsy across different care settings. Method: A retrospective multicentre cohort study across England and Wales collected information on seizure characteristics, intellectual disability severity, neurodevelopmental/biological/psychiatric comorbidities, medication including psychotropics/anti-seizure medication, and care status. Clinical characteristics were compared across different care settings, and those aged over and younger than 40 years. Results: Of 618 adult PwID across six centres (male:female = 61%:39%), 338 (55%) received professional care whereas 258 (42%) lived with family. Significant differences between the care groups existed in intellectual disability severity (P = 0.01), autism presence (P < 0.001), challenging behaviour (P < 0.001) and comorbid physical conditions (P = 0.008). The two groups did not vary in intellectual disability severity/genetic conditions/seizure type and frequency/psychiatric disorders. The professional care cohort experienced increased polypharmacy (P < 0.001) and antipsychotic/psychotropic use (P < 0.001/P = 0.008).The over-40s cohort had lower autism spectrum disorder (ASD) and attention-deficit hyperactivity disorder (ADHD) comorbidity (P < 0.001/P = 0.007), increased psychiatric comorbidity and challenging behaviour (P < 0.05), physical multimorbidity (P < 0.001), polypharmacy (P < 0.001) and antipsychotic use (P < 0.001) but reduced numbers of seizures (P = 0.007). Conclusion: PwID and epilepsy over 40 years in professional care have more complex clinical characteristics, increased polypharmacy and antipsychotic prescribing but fewer seizures.
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A Guide to Reasonable Adjustments for Autistic AdultsThe Guide to Reasonable Adjustments for Autistic Adults was co-produced by a number of autistic Experts by Experience and staff working in the Neuro-liaison and Adult Neurodevelopmental Teams. It has been adapted from the original mental health-based version, to include suggestions for implementing reasonable adjustments in a wider range of contexts. We hope that this toolkit will encourage you to think about how you can make some small but powerful changes, to help reduce some of the inequalities autistic people face when trying to access support services. Documentation included: Guidance, three editable profile examples, guidance for clients, and guidance for professionals.
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The relationship between psychopathy and autism: a systematic review and narrative synthesisBackground and methods: The aim of this systematic review was to synthesise research examining the relationship between autism and psychopathy to: (a) better understand the relationship between these two constructs, and (b) describe the clinical manifestation of the two when they co-occur. A systematic search of the literature returned 36 studies. Results: Across all ages, autistic individuals and those with elevated autistic traits but no autistic diagnoses appeared to have increased callous and unemotional traits or psychopathy relative to the general population. Several studies evidenced that although both constructs are associated with empathetic dysfunction, the underlying mechanisms differ. In adults, psychopathy/psychopathic traits were associated with diminished affective empathy and intact cognitive empathy, whilst the opposite was seen autistic adults and those with elevated autistic traits. In children, those with autistic traits or a diagnosis of autism had diminished cognitive empathy, but not affective empathy, while the relationship between callous and unemotional traits/psychopathy and empathy amongst children was less clear. The co-occurrence of autism and psychopathy was seen to lead to additional empathic and cognitive impairment, but findings were mixed making it challenging to clearly describe the clinical manifestation. Conclusion: There remains a paucity of research investigating the interaction between autism and psychopathy and included studies were characterised by multiple measurement difficulties. Attention should be directed toward developing better methods for identifying psychopathic traits in autistic individuals to advance our understanding of the relationship between autism and psychopathy to allow for the development of appropriate care pathways for this population.
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STOMP during COVID-19: use of psychotropic medication in intellectual disabilities community services – pilot QI projectPurpose A quantitative observational study was conducted. The purpose of this study is to examine the continuing adherence to the stopping over-medication of people with intellectual disability and/or autism guidelines for a cohort of outpatients seen in the outpatients’ clinics in the two teams who participated in this study to review the trend of psychotropic prescribing with a prescription indication along with the utilisation of non-pharmacological interventions. Design/methodology/approach Data was retrospectively collected over a period of one year for patients sampled conveniently in the outpatient’s clinic. The data was collected from two sites from psychiatric letters to the general practitioners (GPs), with the focus being psychotropic prescription indication and their adherence to British National Formulary limits, inclusion of a wider multi-disciplinary team or MDT (including nurses, psychologists and health support workers), use of Clinical Global Impression (CGI) scale for assessing medication side effects and response to treatment. Findings Most of the patients had at least one review in the previous six months. Antipsychotics were the highest prescribed medications without an indication for their use (13.3%) followed by anxiolytics and other medications. CGI recording was suboptimal, with 26% of the patient population did not have medication side effects and effectiveness monitored through this method. In total, 41% of patients were open to community nurses followed by other disciplines.
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Chronic constipation in people with intellectual disabilities in the community: cross-sectional studyBackground: One-third to half of people with intellectual disabilities suffer from chronic constipation (defined as two or fewer bowel movements weekly or taking regular laxatives three or more times weekly), a cause of significant morbidity and premature mortality. Research on risk factors associated with constipation is limited. Aims: To enumerate risk factors associated with constipation in this population. Method: A questionnaire was developed on possible risk factors for constipation. The questionnaire was sent to carers of people with intellectual disabilities on the case-loads of four specialist intellectual disability services in England. Data analysis focused on descriptively summarising responses and comparing those reported with and without constipation. Results: Of the 181 people with intellectual disabilities whose carers returned the questionnaire, 42% reported chronic constipation. Constipation was significantly associated with more severe intellectual disability, dysphagia, cerebral palsy, poor mobility, polypharmacy including antipsychotics and antiseizure medication, and the need for greater toileting support. There were no associations with age or gender. Conclusions: People with intellectual disabilities may be more vulnerable to chronic constipation if they are more severely intellectually disabled. The associations of constipation with dysphagia, cerebral palsy, poor mobility and the need for greater toileting support suggests people with intellectual disabilities with significant physical disabilities are more at risk. People with the above disabilities need closer monitoring of their bowel health. Reducing medication to the minimum necessary may reduce the risk of constipation and is a modifiable risk factor that it is important to monitor. By screening patients using the constipation questionnaire, individualised bowel care plans could be implemented.
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The experiences of adults with intellectual disabilities attending a mindfulness-based group interventionMindfulness helps us to “slow down” and notice how we are thinking and how we are feeling. When we notice our thoughts and our feelings, we can choose to do the things that help us to feel better. We wanted to know what people with learning disabilities thought of mindfulness. Nine people with learning disabilities told us what they thought about mindfulness. We found out that: People enjoyed mindfulness activities and the chance to socialise with other people People showed some understanding of mindfulness People could do the mindfulness activities 1.1 Background A growing body of research supports the efficacy of mindfulness-based intervention programmes (MBPs) for people with intellectual disabilities. Existing literature calls for focus on the experiences of people with intellectual disabilities participating in MBPs. 1.2 Materials and Methods This study explored the experiences of nine adults with intellectual disabilities attending an eight-week group MBP delivered within the community. Two audio-recorded group discussions and seven semi-structured interviews were thematically analysed. 1.3 Results Themes were as follows: participants’ experience of the group as a meaningful and enjoyable activity; opportunities for socialisation, sharing, friendship and support; the significance of participant–facilitator relationships; and how participants understood and experienced the mindfulness exercises and concepts. 1.4 Conclusions Some understanding of mindfulness was evident, and participants demonstrated an ability to engage in mindfulness exercises. Findings inform the development of effective MBPs for people with intellectual disabilities.
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Setting priorities for people with intellectual disability/intellectual developmental disorders across the lifespan: a call to action by the World Psychiatric AssociationPeople with DSM-5 intellectual disability/intellectual developmental disorder (ID/IDD) or ICD-11 disorders of intellectual development (DID) have multiple healthcare needs, but in many countries these needs are neither recognised nor managed effectively. This paper discusses the negative impact that stigma, discrimination and social exclusion have on the identification and care of persons with ID/IDD in low- and middle-income countries (LMICs). It also reviews different models of care for children, adolescents and adults. In discussing some initiatives in LMICs the emphasis is on early diagnosis, with success in providing locally sourced care for affected people and their families. This is where the medical, social and rights-based models of care intersect and is a premise of the person-centred biopsychosocial framework of the World Psychiatric Association's Presidential Action Plan 2020–2023. The plan invites psychiatrists to take a lead in changing the culture of care, as well as medical education, clinical training and research, with a renewed emphasis on workforce integration and service development in terms of community-based rehabilitation strategies.
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Comparing the Minimum Celeration Line and the Beat Your Personal Best Goal-Setting Approaches During the Mathematical Practice of Students Diagnosed with AutismThis study compared two goal-setting approaches found in the Precision Teaching literature, namely the minimum celeration line and the beat your personal best during the mathematical practice of three male students diagnosed with autism, aged 8–9. An adapted alternating treatments design with a control condition was embedded in a concurrent multiple baseline across participants design. Each approach was randomly allocated to either the multiplication/division (×÷) table of 18 or 19, while no approach was allocated to the ×÷14 table that acted as a control. Instruction utilized number families and consisted of (a) untimed practice, (b) frequency-building, (c) performance criteria, (d) graphing, and (e) a token economy. Upon practice completion, an assessment of maintenance, endurance, stability, and application (MESA) was conducted. Participants improved with both conditions and maintained their performance well, while improvements with the control condition were weak. The beat your personal best approach was highlighted as slightly more effective in terms of average performance and more efficient in terms of timings needed to achieve criterion. No differences were identified in terms of learning rate (i.e., celeration) or performance on the MESA. More research is warranted to identify which goal-setting procedure is more appropriate for students in special education.
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The Experiences of Carers of Adults with Intellectual Disabilities During the First COVID-19 Lockdown PeriodBackground The recent COVID-19 pandemic led to widespread international restrictions, severely impacting on health and social care services. For many individuals with an intellectual disability (ID) this meant reduced access to services and support for them and their carers. Aim The aim of this study was to gain insight into the ways parents of adults with ID coped during the first 2020 lockdown period. Methods Eight parents of adults with ID were interviewed. The recordings of these interviews were subjected to a thematic analysis. Results Four main themes were identified: powerless and unappreciated; coping under lockdown; support; and the impact of lockdown on well-being. Conclusions The parents of adults with ID who made up our sample reported that they received little support from services and experienced a sense of powerlessness. Nevertheless, they were open to accepting support from family and friends and showed remarkable resilience. These findings are discussed in the light of the Willner et al. (2020) survey results on parental mental health and coping, and suggestions for future service provision during pandemic conditions are proposed.
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COVID-19-related prescribing challenge in intellectual disabilityBackground: The COVID-19 pandemic and associated restrictions are expected to affect the mental health of the population, especially people with intellectual disability and/or autism spectrum disorder, because of a variety of biological and psychosocial reasons. Aims: This study aimed to estimate if COVID-19 restrictions are associated with a change in number of total consultations carried out by psychiatrists and prescription of psychotropic medication in people with intellectual disability and/or autism spectrum disorder, within a community intellectual disability service. Method: A quantitative observational study was conducted, involving retrospective and prospective data collection before and during lockdown. Data was collected on a spreadsheet and emailed to all psychiatrists working within the Coventry and Warwickshire Partnership NHS Trust-wide community intellectual disability service. Variables included total consultations, medication interventions, types of medications used, multidisciplinary team input and clinical reasons for medication interventions. Data was analysed separately for child and adolescent mental health services (CAMHS) and adult intellectual disability teams, and for the whole service. Results: During the lockdown period, total consultations in the community intellectual disability service increased by 19 per week and medication interventions increased by two per week. Multidisciplinary team input increased in CAMHS from 0.17 to 0.71 per week and in adult intellectual disability from 5.7 to 6.5 per week. Hypnotics and benzodiazepines were the most commonly prescribed psychotropic medications during the lockdown period. Conclusions: COVID-19-related lockdown resulted in an increase in medication interventions, total consultations and involvement of multidisciplinary teams to manage mental health and behavioural issues in people with intellectual disability and/or autism spectrum disorder.
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The experiences of mothers of children and young people with intellectual disabilities during the first COVID-19 lockdown periodBackground Recent COVID-19 lockdown restrictions resulted in reduced access to educational, professional and social support systems for children with intellectual disabilities and their carers. Aim The aim of this study was to gain insight into the ways mothers of children with intellectual disabilities coped during the first 2020 lockdown period. Methods Eight mothers of children with intellectual disabilities were interviewed. The recordings of these interviews were subjected to a thematic analysis. Results Three main themes were identified: carrying the burden; a time of stress; and embracing change and looking to the future. Conclusions All mothers experienced increased burden and stress. However, some also described some positive impact of lockdown conditions on them as well as on their child's well-being and behaviour. These findings are discussed in the light of the (Journal of Applied Research in Intellectual Disabilities, 33, 2020, 1523) survey results on parental coping and suggestions for future service provision during pandemic conditions are proposed.
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Prescribing antipsychotic medication for adults with intellectual disability: shared responsibilities between mental health services and primary careAims and method We conducted a secondary analysis of data from a Prescribing Observatory for Mental Health audit to assess the quality of requests from intellectual disability services to primary care for repeat prescriptions of antipsychotic medication. Results Forty-six National Health Service Trusts submitted treatment data on 977 adults with intellectual disability, receiving antipsychotic medication for more than a year, for whom prescribing responsibility had been transferred to primary care. Therapeutic effects had been monitored in the past 6 months in 80% of cases with a documented communication indicating which service was responsible for this and 72% of those with no such communication. The respective proportions were 69% and 42% for side-effect monitoring, and 79% and 30% for considering reducing/stopping antipsychotic medication. Clinical implications Where continuing antipsychotic medication is prescribed in primary care for people with intellectual disability, lack of guidance from secondary care regarding responsibilities for monitoring its effectiveness may be associated with inadequate review.
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Randomised controlled trials of antidepressant and anti-anxiety medications for people with autism spectrum disorder: systematic review and meta-analysisBackground Although widely used, the current evidence for the efficacy of antidepressant and anti-anxiety medications for people with autism spectrum disorder (ASD) is limited and conflicting. Aims We carried out a systematic review and meta-analysis of randomised controlled trials that assessed the effectiveness of these medications in people with ASD. Method We searched the following databases: Cochrane Library, Medline, EMBASE, CINAHL, PsycINFO, ERIC, DARE and ClinicalTrials.gov. Additionally, we hand-searched 11 relevant journals. We used the Cochrane risk-of-bias tool and Jadad score to assess the quality of each included study. We carried out a meta-analysis using a random effects model. Results We included 15 randomised controlled trials (13 on antidepressants and two on anti-anxiety medications) for a total of 958 people with ASD. Data showed contradictory findings among the studies, with larger studies mostly showing a non-significant difference in outcomes between the treatment and the placebo groups. Meta-analysis of pooled Yale-Brown Obsessive Compulsive Scale and Clinical Global Impression Scale data from nine studies (60%) did not show any statistically significant inter-group difference on either of the outcome measures. The adverse effects reported were mild and, in most studies, their rates did not show any significant inter-group difference. Conclusions Given the methodological flaws in the most included studies and contradictory findings, it is difficult to draw any definitive conclusion about the effectiveness of either antidepressant or anti-anxiety medications to treat either ASD core symptoms or associated behaviours. Robust, large-scale, randomised controlled trials are needed to address this issue.
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Social Media and Cyber-Bullying in Autistic AdultsSocial media can lead to rejection, cyber-bullying victimisation, and cyber-aggression, and these experiences are not fully understood as experienced by autistic adults. To investigate this, 78 autistic adults completed self-report measures of social media use, cyber-bullying victimisation, cyber-aggression, and self-esteem. High levels of social media use were found to be associated with an increased risk of cyber-victimisation; whereas self-esteem was positively correlated with feelings of belonging to an online community and negatively correlated with feelings of being ignored on social network sites and chat rooms. Future studies are needed to further investigate the experience of cyber-bullying victimisation of autistic adults.
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The Current Provision of Mental Health Services for Individuals with Mild Intellectual Disability: A Scoping ReviewObjective The objective of this scoping review is to explore the current evidence for the organization, structure, and delivery of mental health services for people with mild ID. Methods The PRISMA-SCr (Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews) checklist was followed. Online databases were used to identify systematic reviews, meta-analyses, scoping reviews, or guidelines published between 2003 and 2020. Articles were reviewed using Roever & Zoccai criteria for critical appraisal of systematic reviews and meta-analyses. Results 130 records were identified, of which 91 were longlisted. Of these, 28 articles were shortlisted after review of abstracts prior to review of full-text papers. The review included 11 studies: one meta-analysis, eight systematic reviews, and two scoping reviews. These studies approached the provision of mental health services for individuals with mild ID from various angles – including service organization and access, therapies, and patient feedback. Conclusions According to the Roever & Zoccai criteria, there was a lack of high-quality evidence, which limited the findings and conclusions. The available evidence suggested that despite higher levels of psychopathology there is not a corresponding consideration in care for individuals with mild ID in general psychiatric services. There was no conclusive evidence on better level of services or outcomes being provided either by the general psychiatric services or specialist ID psychiatric services. Some evidence was found for intensive case management and assertive outreach for individuals with mild ID, but this was not replicated in further studies. In terms of treatment, there was no high-quality evidence found for pharmacological interventions, with some limited evidence around psychological therapy for the treatment of depression in this vulnerable population. Overall, it was found that an increase in staff training would be beneficial in terms of timely access to services and appropriate treatment. There is a need for inclusive, evidence-based guidance as regards service development for people with mild ID and MH problems.
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An international field study of the ICD-11 behavioural indicators for disorders of intellectual developmentBackground: The World Health Organization (WHO) has approved the 11th Revision of the International Classification of Diseases (ICD-11). A version of the ICD-11 for Mental, Behavioural and Neurodevelopmental Disorders for use in clinical settings, called the Clinical Descriptions and Diagnostic Requirements (CDDR), has also been developed. The CDDR includes behavioural indicators (BIs) for assessing the severity of disorders of intellectual development (DID) as part of the section on neurodevelopmental disorders. Reliable and valid diagnostic assessment measures are needed to improve identification and treatment of individuals with DID. Although appropriately normed, standardised intellectual and adaptive behaviour assessments are considered the optimal assessment approach in this area, they are unavailable in many parts of the world. This field study tested the BIs internationally to assess the inter-rater reliability, concurrent validity, and clinical utility of the BIs for the assessment of DID. Methods: This international study recruited a total of 206 children and adolescents (5-18 years old) with a suspected or established diagnosis of DID from four sites across three countries [Sri-Lanka (n = 57), Italy (n = 60) and two sites in India (n = 89)]. Two clinicians assessed each participant using the BIs with one conducting the clinical interview and the other observing. Diagnostic formulations using the BIs and clinical utility ratings were collected and entered independently after each assessment. At a follow-up appointment, standardised measures (Leiter-3, Vineland Adaptive Behaviour Scales-II) were used to assess intellectual and adaptive abilities. Results: The BIs had excellent inter-rater reliability (intra-class correlations ranging from 0.91 to 0.97) and good to excellent concurrent validity (intra-class correlations ranging from 0.66 to 0.82) across sites. Compared to standardised measures, the BIs had more diagnostic overlap between intellectual and adaptive functioning. The BIs were rated as quick and easy to use and applicable across severities; clear and understandable with adequate to too much level of detail and specificity to describe DID; and useful for treatment selection, prognosis assessments, communication with other health care professionals, and education efforts. Conclusion: The inclusion of newly developed BIs within the CDDR for ICD-11 Neurodevelopmental Disorders must be supported by information on their reliability, validity, and clinical utility prior to their widespread adoption for international use. BIs were found to have excellent inter-rater reliability, good to excellent concurrent validity, and good clinical utility. This supports use of the BIs within the ICD-11 CDDR to assist with the accurate identification of individuals with DID, particularly in settings where specialised services are unavailable.