Promoting identification of people with autism: Developing a behavioural screen for people with learning disability

Autism is a lifelong developmental condition, diagnosed on the basis of persistent social communication deficits and repetitive, restrictive patterns of behaviour. Autistic people form a heterogenous group, but many experience challenges compared to non-autistic people. Identifying and diagnosing autistic people can be beneficial in helping them to better understand themselves, and to access support and interventions. Not all autistic people are diagnosed however, and one group which is disproportionately affected is people with learning disability. Screening tools have the potential to facilitate and speed up diagnosis by highlighting those who should be assessed in more detail. Many existing screening tools are largely inaccessible to people with learning disability due to the level of language required to complete them. The overall aim of the thesis is to facilitate the diagnosis and support of people with autism, in particular those with learning disability, by developing more accessible screening tools. Chapter One provides an overview of the main issues to consider in the screening and diagnosis of autism, in those with and without learning disability. Chapter Two outlines the adaption of the Autism- Spectrum Quotient (AQ), with the aim of developing a more accessible version (AccAQ). The language of the AQ is simplified, and line drawings are added to enhance understanding. The results indicate that the original AQ and the adapted versions are equivalent in many ways, but the AccAQ still requires the person completing it to have some verbal communication, comprehension, and literacy skills. Chapter Three reports on a systematic review into the psychometric properties of autism screening tools used with people with learning disability. The review found that the majority of tools were lacking comprehensive validity and reliability data, were not specifically designed for use with people with learning disability, and required the input of an informant. Chapters Four to Six discuss the development of a new autism screening tool, which was designed specifically for people with learning disability and does not require the input of a third-party informant. Chapter Four reports on the results of interviews with stakeholders about the current autism diagnostic pathway, the role of screening as a part of the diagnostic process and the properties that would be desirable in a new screening tool to ensure it is both accessible and useful. Overall, this study highlighted the need for such a tool to have good psychometric properties, be clinically useful, user friendly, cost-effective, and minimize demands on users and those being screened. Chapter Five explored the literature that provided a theoretical basis for the inclusion of particular items within a behavioural screening tool. These are items that will prompt reactions which are indicative of the presence or absence of autistic traits: the concepts of empathy, mimicry, and contagion. These ideas are operationalised in a series of pilot studies which use existing video clips as stimuli and ask participants to self-report their responses to the videos. The results of a machine learning analysis, using cforest, showed that the self-reported responses were broadly predictive of the person’s AQ score and provided proof of concept of the idea of a behavioural screening tool. Chapter Six extended this work. Here a set of custom stimuli were created and were viewed by autistic and non-autistic participants, with and without learning disability. Their reactions to these were self-reported and video recorded, and subsequently coded. The results indicated that, while scores on the behavioural screen could not discriminate between autistic and non-autistic participants, or predict self-reported AQ score, they did predict informant AQ scores. Overall, the thesis makes a novel and significant contribution to the literature by identifying tools which are currently available to screen for autism in people with learning disability, alongside adapting the AQ to be more accessible to a wider range of people. It provides proof of concept for a behavioural screening tool for autism, which is specifically designed for people with learning disability, that integrates stakeholder views and theoretical literature during its initial development and testing

A quantitative evaluation of a regional Positive Behavioural Support workforce development approach

Background: Research suggests that providing staff with input in relation to Positive Behavioural Support (PBS) can have beneficial outcomes. Much of this research, however, fails to take account of systemic issues and does not include a control group. Method: We used a non-randomised, controlled group design to evaluate accredited PBS programmes, delivered as part of a systemic, regional and workforce development approach. We compared outcomes of those attending the programmes (n = 240) with a control group (n = 54), pre- and post-intervention and at 3-months follow-up. Results: The programme and its wider impact were rated positively. Significant intervention effects were found for staff practice and retention, but not for staff knowledge and attributions, or behaviours that challenge and quality of life of those being supported. Conclusions: The results are discussed in the context of the study limitations and restrictions resulting from the Covid-19 pandemic

Exploring the relative importance of factors that influence the job retention of social care staff working in intellectual disability services

We wanted to find out what would help care staff to stay in their jobs. The most important thing for them was getting on well with the person they supported. The next most important thing was their pay. These results can be used to find ways to help staff stay in their jobs. This is important to make sure that people with a learning disability get good support. Abstract: Background: High staff turnover presents a challenge to the provision of good quality community-based support to people with an intellectual disability. While recent research has identified factors that are thought to be important for staff retention, their relative importance to social care staff is unknown. The aim of this study was to address this gap. Methods: 205 social care staff who worked in intellectual disability services completed an online questionnaire that asked them to: rank factors that had been previously identified as influencing staff retention in order of importance; identify the extent to which their most important factor was met by their organisation (fulfilment score); and rate their recent job-seeking intentions. Findings: The most important factor overall was the relationship of the staff member with the person they supported. This was also identified as the most important factor by the most participants, followed by pay. All of the factors, with the exception of “benefits” (such as pensions), were rated by at least one person as the most important factor. A significant negative relationship was found between fulfilment score and job-seeking score; that is, the lower the former, the more the person agreed that they had been seeking a new job. Conclusion: The results suggest that interventions to improve staff retention should take account of differences in staff views about which work-related factors are most important to them; use multi-component approaches where possible; prioritise staff pay; and help ensure that staff relationships with those they support are positive and fulfilling

Screening for intellectual disability in autistic people: A brief report

Background: There is high co-occurrence between intellectual disability and Autism Spectrum Disorder (ASD). It is important to identify people who have both conditions for clinical and research reasons. This study explored if the Child and Adolescent Intellectual Disability Screening Questionnaire (CAIDS-Q) and Learning Disability Screening Questionnaire (LDSQ) could accurately identify intellectual disability in autistic children and adults respectively. Method: Pre-existing CAIDS-Q data for 40 autistic children and LDSQ data for 27 autistic adults were used. The participants were classified as likely to have an intellectual disability or not based on the age-appropriate cut-off score on the relevant screening tools. This was compared with their clinical diagnosis of intellectual disability. Results: The sensitivity, specificity, and positive and negative predictive values, for the CAIDS-Q were 93.1%, 88.5%, 90% and 92% respectively. The corresponding figures for the LDSQ were 75%, 95.6%, 75%, and 95.6%. Conclusions: The values for the CAIDS-Q were broadly consistent with figures found in previous research. The sensitivity and PPV figures for the LDSQ, were somewhat lower. The specificity and sensitivity values for both measures were above the threshold for levels that are generally considered to be acceptable for a developmental screening tool. The results suggest that the CAIDS-Q and LDSQ may be appropriate measures to screen for intellectual disability in autistic people

Screening tools for Autism Spectrum Disorder, used with people with an Intellectual Disability: A systematic review

Background A diagnosis of autism spectrum disorder (ASD) can be beneficial in ensuring the person receives appropriate support. People with intellectual disability often have undiagnosed co-occurring ASD, due to the specific diagnostic challenges that having intellectual disability can present. Screening tools can be useful to indicate those who are likely to require full diagnostic assessment of ASD. Method We conducted a systematic review of the literature. The databases ProQuest, PsycArticles, PubMed, and Web of Science were searched for articles published before July 2019. When duplicates were removed 3068 articles were retained. Articles were removed in stages and were retained if there was a possibility that the content was relevant. In total, 14 articles were reviewed fully. Results The articles covered eight ASD screening instruments and were reviewed in respect of the quality of the available reliability and validity data when used with people with intellectual disability. Conclusion A few tools have psychometric properties that indicate they have potential to screen for ASD in people with intellectual disability, but overall research with this group is limited, particularly in terms of reliability. The implications for screening and diagnosis of ASD in people with intellectual disability are discussed

“Look, all our hard work is paying off”: A qualitative evaluation of a system‐wide, workforce development model to promote positive behavioural support

Background: Positive behavioural support (PBS) has been identified as a means of improving the quality of life and support of people with an intellectual disability. This qualitative study explored the views of service providers about a regional PBS programme, that was underpinned by a workforce development approach. Method: Semi-structured interviews were conducted with senior staff (n = 42), from organizations which provided services to people with an intellectual disability, about their views about, and perceived impact of, the PBS programme, Data were analysed using thematic analysis. Results: Two themes were identified: “It's what PBS is about, isn't it?” emphasized the importance of the programme being systemic- and evidence-based; “Macro to micro” highlighted the different points in the systems of care at which the programme was seen to impact. Conclusions: We discuss the results in the context of the study limitations

ACCESS II: A Complete Census of Star Formation in the Shapley Supercluster - UV and IR Luminosity Functions

We present panoramic Spitzer/MIPS mid- and far-infrared and GALEX ultraviolet imaging of the the most massive and dynamically active system in the local Universe, the Shapley supercluster at z=0.048, covering the 5 clusters which make up the supercluster core. We combine these data with existing spectroscopic data from 814 confirmed supercluster members to produce the first study of a local rich cluster including both ultraviolet and infrared luminosity functions (LFs). This joint analysis allows us to produce a complete census of star-formation (both obscured and unobscured), extending down to SFRs~0.02-0.05Msun/yr, and quantify the level of obscuration of star formation among cluster galaxies, providing a local benchmark for comparison to ongoing and future studies of cluster galaxies at higher redshifts with Spitzer and Herschel. The GALEX NUV and FUV LFs obtained have steeper faint-end slopes than the local field population, due largely to the contribution of massive, quiescent galaxies at M_FUV>-16. The 24um and 70um galaxy LFs for the Shapley supercluster instead have shapes fully consistent with those obtained for the Coma cluster and for the local field galaxy population. This apparent lack of environmental dependence for the shape of the FIR luminosity function suggests that the bulk of the star-forming galaxies that make up the observed cluster infrared LF have been recently accreted from the field and have yet to have their star formation activity significantly affected by the cluster environment. We estimate a global SFR of 327 Msun/yr over the whole supercluster core, of which just ~20% is visible directly in the UV continuum and ~80% is reprocessed by dust and emitted in the infrared. The level of obscuration (L_IR/L_FUV) in star-forming galaxies is seen to increase linearly with L_K over two orders of magnitude in stellar mass.Comment: 19 pages, 17 figures. Accepted for publication in MNRA

Spitzer and ISO Galaxy Counts in the Mid-Infrared

Galaxy source counts that simultaneously fit the deep mid-infrared surveys at 24 microns and 15 microns made by the Spitzer Space Telescope and the Infrared Space Observatory (ISO) respectively are presented for two phenomenological models. The models are based on starburst and luminous infrared galaxy dominated populations. Both models produce excellent fits to the counts in both wavebands and provide an explanation for the high redshift population seen in the longer Spitzer 24 micron band supporting the hypothesis that they are luminous-ultraluminous infrared galaxies at z=2-3, being the mid-infrared counterparts to the sub-mm galaxy population. The source counts are characterized by strong evolution to redshift unity, followed by less drastic evolution to higher redshift. The number-redshift distributions in both wavebands are well explained by the effect of the many mid-infrared features passing through the observation windows. The sharp upturn at around a milliJansky in the 15 micron counts in particular depends critically on the distribution of mid-infrared features around 12 microns, in the assumed spectral energy distribution.Comment: 6 pages, 2 figures, accepted for publication MNRA