We report the effect of quality of therapy delivery on outcomes in a randomized, controlled trial of behavioural activation (BA) and guided self-help (GSH) for depression in adults with intellectual disabilities. Open access article - no login required
In this study, we interviewed autistic mothers and professional midwives, living and working across the United Kingdom and Ireland. Open access article - no login required
This study adopted a qualitative method to develop themes arising from online forum discussions, using the words of autistic adults talking about how they experience and understand their self-harming behaviours. Open access article - no login required
Tabletop role-playing games (TTRPGs) are popular hobbies that may offer specific social benefits for autistic people. This study investigated the ability of TTRPGs to provide a safe space where autistic adults could develop relationships with other autistic adults while engaging in character and world-building. Open access article - no login required
In this study, we asked 60 autistic adults with varying degrees of face recognition ability to complete two tests of face recognition, a questionnaire about social anxiety and a bespoke survey which asked participants about their experiences of face recognition and social interaction. Open access article - no login required
The Autism Stigma and Knowledge Questionnaire (ASK-Q) was developed to assess autism knowledge across cultural contexts. The current study aimed to examine cultural equivalence of the measure using a large, international database. To read the full article, choose Open Athens “Institutional Login” and search for “Midlands Partnership”.
...the aims of this study were to investigate the feasibility of resting ECG recording, to study the prevalence of ECG abnormalities, and to compare the frequency of ECG abnormalities with medical records in older adults with ID. Open access article - no login required
Correlates of inactivity among the general and ID populations were identified through a literature scoping review. Open access article - no login required
We assessed drug burden in a cohort of sequential referrals to a national memory service for people with ID. To read the full article, choose Open Athens “Institutional Login” and search for “Midlands Partnership”.
The current study aimed to compare the effectiveness of training in IVR and a non-immersive virtual environment for improving real-world skills in people with ID. Open access article - no login required
Current scales are often lengthy and redundant, leading to exhaustion and response burden. The goal is to use machine learning techniques, specifically item-reduction methods and selection algorithms, to develop shorter and more efficient scales. To read the full article, choose Open Athens “Institutional Login” and search for “Midlands Partnership”.
...assessments required to diagnose constipation in a person with a learning disability accurately. To read the full article, choose Open Athens “Institutional Login” and search for “Midlands Partnership”.
This article identifies some of the barriers to effective service provision for people with learning disabilities in primary care. It describes how learning disability nurses and learning disability support workers can assist staff in primary care to improve the experiences of people with learning disabilities when attending healthcare appointments such as annual health checks, blood tests, cancer screening and other routine investigations. To read the full article, choose Open Athens “Institutional Login” and search for “Midlands Partnership”.
People with learning disabilities are more likely than the general population to develop type 2 diabetes, but are less likely to receive appropriate care.... To read the full article, choose Open Athens “Institutional Login” and search for “Midlands Partnership”.
Nearly one in three NHS trusts in England (29%) does not have a specific acute learning disability liaison service with a learning disability registered nurse, according to our exclusive investigation. This means that for many of the estimated 1.5 million people with learning disabilities in England, when they attend an acute hospital for treatment there will not be a clinician with specialist skills on hand to help meet their healthcare and communication needs. To read the full article, choose Open Athens “Institutional Login” and search for “Midlands Partnership”.
Of the 2,054 deaths in people with a learning disability, 853 (42%) were avoidable. The report... To read the full article, choose Open Athens “Institutional Login” and search for “Midlands Partnership”.
This study aims to identify a consensus among experts regarding what conditions are conducive to successful sexual support and education for adults with mild IDs. Open access article - no login required
This article represents a quantitative synthesis of the current state of the literature on emotion dysregulation, with a specific focus on how the severity of emotion dysregulation differs across autistic and non-autistic people across the lifespan. To read the full article, choose Open Athens “Institutional Login” and search for “Midlands Partnership”.
In this study, we explored a model that included several individual psychological factors (such as fear of being negatively judged, self-esteem and autistic identity) and broader social and cultural factors (such as perceived stigma, negative life events, cultural emphasis on conformity and desire to fit in or stand out). Open access article - no login required
This codesigned review consolidated the evidence on the healthcare experiences of individuals and their carers from ethnic minority backgrounds with a learning disability. Open access article - no login required
Research has shown that not everyone can easily access digital content, particularly people with intellectual disabilities. Despite internet access being recognised as a human right in the United Nations' Conventions on the Rights of Persons with Disabilities, this group faces significant disadvantages... Open access article - no login required
This umbrella review aims to establish whether the passport is an effective reasonable adjustment, identify barriers to its use and make recommendations to alleviate these barriers. Open access article - no login required
The aim of this scoping review was to understand stressful life events and their relationship with PTSD symptoms, other mental health and/or behavioural problems in individuals with ID-BIF. Open access article - no login required
This study aimed to identify the nature of supports provided to people with intellectual disability and dysphagia when eating and drinking in different environments, as described in the published literature. Open access article - no login required.
This study examines the characteristics of young people with intellectual/developmental disabilities transitioning from a residential educational setting in England, describes post-transition placement characteristics, and identifies factors that predict post-transition placement location. Open access article - no login required.
This article supports these healthcare professionals to improve the quality of life of service users and those around them by understanding neurodivergence better and developing appropriate strategies for responding to distressed behaviour. To read the full article, choose Open Athens “Institutional Login” and search for “Midlands Partnership”.
When people with learning disabilities show behaviour that challenges, nurses should try to understand why it is happening and explore ways to divert from it
When people with learning disabilities and/or autism display behaviour that challenges it can be difficult for carers to provide the support the person needs – and it is also damaging to the individual’s quality of life. To read the full article, choose Open Athens “Institutional Login” and search for “Midlands Partnership”.
To learn about the principles of behaviour change theories and how they can be used to promote physical activity in people with learning disabilities. To read the full article, choose Open Athens “Institutional Login” and search for “Midlands Partnership”.
People with learning disabilities face distinct challenges as they age. We know that people with a learning disability are at risk of developing the same age-related conditions as the general population but diagnostic overshadowing is still a big problem... To read the full article, choose Open Athens “Institutional Login” and search for “Midlands Partnership”.
This study aimed to investigate if a 6-month SIT or a continuous aerobic programme could enhance physical performance and cardiac autonomic modulation at rest, during physical activity (PA) and after it in older adults with an ID. Open access article - no login required
Play is often included in autism diagnostic assessments. These tend to focus on ‘deficits’ and non-autistic interpretation of observable behaviours. In contrast, a neurodiversity-affirmative assessment approach involves centring autistic perspectives and focusing on strengths, differences and needs. Accordingly, this study was designed to focus on autistic perspectives of diagnostic assessments that incorporate play. Open access article - no login required
Movement of the body is an essential way to characterise autism, according to diagnostic criteria. However, qualifying descriptions of what autistic movements are, their functions and personal value, are missing from academic literature and clinical guidance. We systematically searched for autistic adults’ descriptions of their body and its movement within autobiographical narratives in blog data. Open access article - no login required
In this study, we employed a bidirectional two-sample Mendelian randomization framework, leveraging genome-wide association study data from the UK Biobank (n = 85,670) and FinnGen (n = 377,277). Open access article - no login required
The purpose of this case report is to report the clinical experience of the use of gabapentin in the management of problem behaviors in a person with autism spectrum disorder and comorbid intellectual disability. To read the full article, choose Open Athens “Institutional Login” and search for “Midlands Partnership”.
The purpose of this paper is to report on a review of people’s experiences of residential and secure in-patient services in Norfolk for those with learning disabilities and autistic people. To read the full article, choose Open Athens “Institutional Login” and search for “Midlands Partnership”.
Eye-tracking technology could be used as a tool to allow RTT children and adults to communicate and learn in an easier way as well as for the detection of their feelings. Using eye-tracking technology as a method to complement cognitive assessment of children has a lot of potential not just for children with RTT but also for other individuals with limited communication skills.
Our study used video clips of autistic and non-autistic people recounting emotional events to test if participants from the general population could: track the intensity of the narrators’ emotions; name and feel the same emotion; match where the narrator felt the emotion and indicate how intensely they felt the emotion using a body map. Open access article - no login required.
This article describes and reflects on the first six meetings of a newly established Autistic community council, founded to steer a participatory, longitudinal qualitative study investigating the reproductive health of Autistic people with wombs. Open access article - no login required.
The overarching aim of this exploratory study was to learn about autonomy from the perspective of autistic adults with intellectual disability, including what autonomy meant and how participants wanted to be supported to be autonomous. Open access article - no login required.
Autistic children often have comorbid somatic problems. However, in adulthood, this has been much less studied. We investigated the associations between autistic symptoms and irritable bowel syndrome, food allergy, pain, and fatigue in adulthood and examined sex and life-course differences herein. Open access article - no login required.
There is an increasing focus on research exploring autistic communication and community. In this review, we systematically collate and analyse how autistic adults describe their experiences of other autistic people and the relationship this has with their Quality of Life (QoL). Open access article - no login required.
This study explores the experiences and identities of nonbinary autistic people, an under-researched population. To read the full article, choose Open Athens “Institutional Login” and search for “Midlands Partnership”.
This international study examines the implementation characteristics of the BIs and compares them to standardised measures for assessing the severity of intellectual impairment and adaptive behaviours in disorders of intellectual development and autism spectrum disorder (ASD). The clinical utility of the ICD-11 and the fidelity of its application in international clinical settings were also assessed. Open access article - no login required
This study aims to investigate the prevalence of problem behaviours, characterise the behavioural phenotype and use well-validated measures to explore variables that maintain the behaviours. Open access article - no login required.
This is the first study to interview autistic adults about their personal experiences of differentiating between obsessive-compulsive disorder symptoms and repetitive behaviours related to autism. Open access article - no login required.
...The conditions co-occur frequently, they share some cognitive features, and they have a marked overlap in underlying genetic and environmental influences (1). Perhaps surprisingly, we know much less about the overlap in brain function, particularly when the brain is actively engaged in psychological processes. This knowledge gap is partly addressed by a meticulously conducted and conceptually elegant meta-analysis of brain function in ADHD and ASD... To read the full article, choose Open Athens “Institutional Login” and search for “Midlands Partnership”.
Commentary on Barriers to healthcare and a ‘triple empathy problem’ may lead to adverse outcomes for autistic adults: A qualitative study. Autism, 2023.
Implications for practice and research:
Implementing waiting-list interventions, offering regular updates on queue position and estimated wait times, and providing information about support services can alleviate the uncertainty of prolonged waits and mitigate dropouts among individuals with learning disabilities and comorbid mental conditions.
To read the full article, choose Open Athens “Institutional Login” and search for “Midlands Partnership”.
The objective of this study was to explore the role that Autistic identity, sensory processing and camouflaging behaviours have on eating disorder symptomology in Autistic adults. To read the full article, choose Open Athens “Institutional Login” and search for “Midlands Partnership”.
This study asks how autistic people experience menopause and how they can better access services, support and information; autistic Community Research Associates played an important role in each stage of the research. To read the full article, choose Open Athens “Institutional Login” and search for “Midlands Partnership”.
This paper presents two real-life examples of attempted coproduction with a group of men with learning disabilities in England. To read the full article, choose Open Athens “Institutional Login” and search for “Midlands Partnership”.
This paper aims to detail the process of developing a risk stratification tool to identify those individuals who are higher risk of premature mortality. To read the full article, choose Open Athens “Institutional Login” and search for “Midlands Partnership”.
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. To read the full article, choose Open Athens “Institutional Login” and search for “Midlands Partnership”.
This preliminary study aims to examine the use of a co-designed immersive virtual reality intervention programme in improving access to health care for people with intellectual disability. To read the full article, choose Open Athens “Institutional Login” and search for “Midlands Partnership”.
We wanted to find out what support and information is available to girls and women with learning disabilities about periods (also called ‘menstruation’) over a lifetime. To read the full article, choose Open Athens “Institutional Login” and search for “Midlands Partnership”.
The aim of this retrospective study was to investigate the impact of the ED approach on the prescription of psychotropic medication during inpatient psychiatric treatment. To read the full article, choose Open Athens “Institutional Login” and search for “Midlands Partnership”.
We invited participants ...to take part in the current study on sleep–wake rhythm, mood and behaviour in older adults with IDs 1 year after installing environmental dynamic light installations in the common living rooms of six group homes. To read the full article, choose Open Athens “Institutional Login” and search for “Midlands Partnership”.
The main objective of this study was to evaluate gait parameters in people with intellectual disability (ID) and without intellectual disability (WID) in two different walking conditions [single task vs. dual task (DT)]. A secondary aim was to evaluate the dual-task cost (DTC) that the DT causes in each group. To read the full article, choose Open Athens “Institutional Login” and search for “Midlands Partnership”.
The purpose of this quasi-experimental study was to evaluate the changes in gait deviations and walking speed in adults with DS after a DS-specific exercise programme. To read the full article, choose Open Athens “Institutional Login” and search for “Midlands Partnership”.
We tried to find out why some older adults with intellectual disability may have poor bone health and are at risk of breaking bones. To read the full article, choose Open Athens “Institutional Login” and search for “Midlands Partnership”.
Sometimes women with learning disabilities do not go for these checks, and we wanted to find out why. To read the full article, choose Open Athens “Institutional Login” and search for “Midlands Partnership”.
We studied three separate autistic samples, each of which differed in how they were diagnosed and how they were recruited. To read the full article, choose Open Athens “Institutional Login” and search for “Midlands Partnership”.
We asked 33 autistic adults from two industry-led employment programmes about their experiences in the programmes. To read the full article, choose Open Athens “Institutional Login” and search for “Midlands Partnership”.
Little is known about the parenting experiences of autistic mothers, especially those who have daughters who are not on the autism spectrum. In this study, we interviewed seven autistic mothers who have raised or are currently raising non-autistic teenage daughters. To read the full article, choose Open Athens “Institutional Login” and search for “Midlands Partnership”.
We co-produced an online self-guided self-compassion program based on evidence-based self-compassion practices for autistic adults called the Self-compassion Program for Autistic Adults. To read the full article, choose Open Athens “Institutional Login” and search for “Midlands Partnership”.
We examined the use of person- and identity-first language (PFL, IFL) in scholarly writing about autism by reviewing 12,962 journal abstracts from 11 autism research journals (mostly covering the years 2001–2022). To read the full article, choose Open Athens “Institutional Login” and search for “Midlands Partnership”.
This study uses a qualitative approach to investigate the healthcare experiences of autistic adults. To read the full article, choose Open Athens “Institutional Login” and search for “Midlands Partnership”.
This study aimed to analyse the blood lipid profile of a large DS cohort to establish a baseline for evaluating health risk parameters. To read the full article, choose Open Athens “Institutional Login” and search for “Midlands Partnership”.
This review focuses on community and in-patient approaches to meeting a complexity of need. To read the full article, choose Open Athens “Institutional Login” and search for “Midlands Partnership”.
We aim to determine the effectiveness of lifestyle modification interventions and their components in targeting health risk behaviours in adults with IDs. To read the full article, choose Open Athens “Institutional Login” and search for “Midlands Partnership”.
This study aimed to understand how lifestyle modification interventions for adults with intellectual disabilities work, for whom they work and in what circumstances. To read the full article, choose Open Athens “Institutional Login” and search for “Midlands Partnership”.
Individuals with intellectual disabilities (IDs) often present deficiencies in motor, balance and postural control. On the other hand, the practice of physical activity and dance usually reduces these deficiencies. Therefore, in this study, we aimed to compare the control of the centre of pressure (COP) in people with Down syndrome (DS) or other causes of ID in relation to people without disabilities and to observe the influence of vision and the practice of dance. To read the full article, choose Open Athens “Institutional Login” and search for “Midlands Partnership”.
The project is dedicated to finding and sharing healthcare practices that enhance the lives of people with learning disabilities. As part of our ethics applications to access National Health Service study sites for fieldwork, we worked together to write guiding principles for co-producing research ethics with researchers with learning disabilities. In this paper, we introduce these Participatory Ethics Good Practice Guidelines and reflect on our collaboration. To read the full article, choose Open Athens “Institutional Login” and search for “Midlands Partnership”.
We piloted a person-centred method to enable one young person's (Dominic) voice to be included in his transition to adult services. To read the full article, choose Open Athens “Institutional Login” and search for “Midlands Partnership”.
Here, we present the first revisions of the International Classification of Functioning, Disability and Health Core Sets for autism, based on research, development results, and community feedback. To read the full article, choose Open Athens “Institutional Login” and search for “Midlands Partnership”.
...we explored the gender dysphoria experiences of 15 Japanese autistic transgender adults... To read the full article, choose Open Athens “Institutional Login” and search for “Midlands Partnership”.
A meta-ethnographic approach was used to review the existing research on autistic adults’ experiences of accessing healthcare. To read the full article, choose Open Athens “Institutional Login” and search for “Midlands Partnership”.
This study investigated the experiences of 39 autistic adults who participated in an autism-specific online self-compassion program. To read the full article, choose Open Athens “Institutional Login” and search for “Midlands Partnership”.
The broad autism phenotype refers to a group of behaviors related to autism spectrum disorder, but that appear to a lesser extent. Its assessment has been performed through outdated broad autism phenotype/autism spectrum disorder definitions and tests. To address this problem, this study presents the development of a new test, the Broad Autism Phenotype–International Test... To read the full article, choose Open Athens “Institutional Login” and search for “Midlands Partnership”.
This study suggested that social media can provide important information about autism to autistic people. We interviewed 12 autistic adults (aged 18–49 years) and talked to them about the use of social media to find both general information and content specifically about autism, autism identity and online autistic communities. To read the full article, choose Open Athens “Institutional Login” and search for “Midlands Partnership”.
In this preregistered study, we developed a task to investigate whether autistic adolescents and adults with limited or no phrase speech (N = 31) have learned English orthographic conventions. To read the full article, choose Open Athens “Institutional Login” and search for “Midlands Partnership”.
For this review, autistic and non-autistic researchers looked at research on the experience of receiving a diagnosis of autism spectrum disorder as an adult. To read the full article, choose Open Athens “Institutional Login” and search for “Midlands Partnership”.
This article explains the importance of using a systematic approach to health assessment and describes various elements of communication involved in this process. To read the full article, choose Open Athens “Institutional Login” and search for “Midlands Partnership”.
This study included people with intellectual disability who had ever had a PEG inserted and who presented to the specialist Speech and Language Therapy team in one Greater Manchester borough... To read the full article, choose Open Athens “Institutional Login” and search for “Midlands Partnership”.
People with intellectual disability die from some illnesses that could be avoided. This is a bigger problem in people with intellectual disability than in people without intellectual disability. We searched for evidence about what we could do to prevent these illnesses. To read the full article, choose Open Athens “Institutional Login” and search for “Midlands Partnership”.
We aimed to investigate the perspectives of clients and their carers on clients’ treatments with psychotropic drugs. To read the full article, choose Open Athens “Institutional Login” and search for “Midlands Partnership”.
Special attention is required when considering any educational intervention aimed at its promotion and development. Our objective is to conduct an umbrella review of systematic reviews that gather evidence from relationships and sex education programmes tailored for individuals with intellectual disabilities. To read the full article, choose Open Athens “Institutional Login” and search for “Midlands Partnership”.
What has happened to people's health and healthcare as we move beyond the pandemic? To read the full article, choose Open Athens “Institutional Login” and search for “Midlands Partnership”.
In this two-part study, electronic medical records (EMRs) were leveraged to examine co-occurring health conditions... To read the full article, choose Open Athens “Institutional Login” and search for “Midlands Partnership”.
In a published systematic review, we reported evidence about the process of deprescribing psychotropic medicines... To read the full article, choose Open Athens “Institutional Login” and search for “Midlands Partnership”.
This study explored the accuracy of two commonly used autism screening surveys for adults: the RAADS-R and the RAADS-14. To read the full article, choose Open Athens “Institutional Login” and search for “Midlands Partnership”.
We wanted to find out which topics autistic people in Scotland want to see research on. To read the full article, choose Open Athens “Institutional Login” and search for “Midlands Partnership”.
In the past 40 years, accumulating evidence suggested that autistic individuals are at an increased risk of suicidal thoughts and behaviors. This study examined the occurrence of various potential risk factors for lifetime suicidal behavior and suicidal thoughts in the past month in a Dutch cohort (Netherlands Autism Register) of autistic individuals... To read the full article, choose Open Athens “Institutional Login” and search for “Midlands Partnership”.
‘Who, When, How to Share’ is a new programme that aims to support autistic adults in making decisions around sharing their autistic identity with others. The programme involves working through a self-help guide independently over 3 weeks with optional peer support. To read the full article, choose Open Athens “Institutional Login” and search for “Midlands Partnership”.
Prospective memory helps us to remember to perform tasks in the future... The goal of this study was to determine time- and event-based prospective memory in autistic adults across the life span. To read the full article, choose Open Athens “Institutional Login” and search for “Midlands Partnership”.
In our study, we looked at experiences of people currently seeking an autism diagnosis in the UK. To read the full article, choose Open Athens “Institutional Login” and search for “Midlands Partnership”.
Advice for non-specialist nurses on adapting practice for people with a learning disability and autistic people
To read the full article, choose Open Athens “Institutional Login” and search for “Midlands Partnership”.
The aims of this review were to synthesise the outcomes of sensory approaches for adults with a severe or profound and multiple learning disabilities and describe the key intervention components. To read the full article, choose Open Athens “Institutional Login” and search for “Midlands Partnership”.