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Background: Speech in individuals with cleft lip and/or palate (CLP) is a complex myriad of presenting symptoms. It is uniquely associated with the structural difference of velopharyngeal insufficiency (VPI), together with a wide and heterogeneous range of other aetiologies which often co-occur. The nature of the speech sound disorder (SSD) including VPI may also change over the course of an individual's care pathway. Differences in terminology and approaches to analysis are currently used, resulting in confusion internationally. Additionally, current diagnostic labels and classification systems in SSD do not capture the complexity and full nature of speech characteristics in CLP. Aims: This paper aims to explore the different aetiologies of cleft palate/VPI speech and to relate aetiology with speech characteristic(s). In so doing, it attempts to unravel the different terminology used in the field, describing commonalities and differences, and identifying overlaps with the speech summary patterns used in the United Kingdom and elsewhere. The paper also aims to explore the applicability of current diagnostic labels and classification systems in the non-cleft SSD literature and illustrate certain implications for speech intervention in CLP. Methods and Procedures: The different aetiologies were identified from the literature and mapped onto cleft palate/VPI speech characteristics. Different terminology and approaches to analysis are defined and overlaps described. The applicability of current classification systems in SSD is discussed including additional diagnostic labels proposed in the field. Outcomes and Results: Aetiologies of cleft palate/VPI speech identified include developmental (cognitive-linguistic), middle ear disease and fluctuating hearing loss, altered oral structure, abnormal facial growth, VPI-structural (abnormal palate muscle) and VPI-iatrogenic (maxillary advancement surgery). There are four main terminologies used to describe cleft palate/VPI speech: active/passive and compensatory/obligatory, which overlap with the four categories used in the UK speech summary patterns: anterior oral cleft speech characteristics (CSCs), posterior oral CSCs, non-oral CSCs and passive CSCs, although not directly comparable. Current classification systems in non-cleft SSD do not sufficiently capture the full nature and complexity of cleft palate/VPI speech. Conclusions and Implications: Our attempt at identifying the heterogeneous range of aetiologies provides clinicians with a better understanding of cleft palate/VPI speech to inform the management pathway and the nature and type of speech intervention required. We hope that the unravelling of the different terminology in relation to the UK speech summary patterns, and those used elsewhere, reduces confusion and provides more clarity for clinicians in the field. Diagnostic labels and classification require international agreement.

Background: The publication of phase 2 of the CATALISE project in 2017 clarified terminology for children with developmental language disorder (DLD) or delay but unintentionally muddied the water for children with unintelligible speech. A diagnostic label of DLD (phonology) indicates poor prognosis and phonological disorder that persists into middle childhood. However, in contrast to other diagnostic labels that fall under the overarching term of speech sound disorder (SSD), DLD (phonology) does not elucidate the characteristics of the child's speech nor does it point us in the direction of appropriate intervention. Aims: The aim of this paper is to discuss terminology in SSD leading to an evidence-based model which builds on the model of DLD developed in CATALISE, supports descriptive diagnosis and signposts intervention. Methods: Following a focused review of literature proposing or describing terminology for SSD, an expert group of researchers in developmental SSD proposed a revised model of existing terminology. Groups of UK speech and language therapists (SLTs) who provide services for children with SSD were asked to comment on its acceptability and feasibility. Discussion: A three-level terminology model was developed. This comprised an overarching Level 1 term; Level 2 terms that differentiated SSD of unknown origin from SSD with associated or underlying conditions; and specific diagnostic terms at Level 3 to support further assessment and intervention decisions. Consulted SLTs generally expressed agreement with the proposed terminology and a willingness to adopt it in practice. Conclusions: Existing terminology for childhood SSD provides a good basis for clinical decision-making. A modified version of Dodd's (2005) terminology was found to be acceptable to UK SLTs. There is an evident overlap of SSD with CATALISE terminology. However more detailed and specialist terminology than 'DLD (phonology)' is required to support clinical decision-making. It is proposed that endorsement by the UK Royal College of Speech and Language Therapists would obviate the need for a Delphi process.

Autistic people diagnosed in adulthood often report that the experience can be life-changing, but there are issues with the diagnostic pathway. Few studies consider the views of people "currently" seeking diagnosis or contextualise the experience of diagnosis around developing an autistic identity. In this qualitative participatory study, we explored experiences of navigating an autism diagnosis in adulthood in the UK. We recruited six women (aged 21-46 years) who were seeking diagnosis, who worked with the academic researchers across four sessions to develop the study, share their experiences and analyse the themes. In one session, they completed a semi-structured interview alongside photovoice, a community-based action method, to explain and reflect on their experiences. We used reflexive thematic analysis to identify patterns, with four key themes identified: (1) 'everything shattered', (2) 'being seen', (3) 'understanding not judgement, please' and (4) 'here's a leaflet, off you go'. The themes reflected a desire for change and improved support for both diagnosis and developing autistic identity. Following photovoice methodology, together we identified actions to improve adult diagnosis, including involving autistic people in making improvements to the diagnostic criteria, for key professional and community groups to listen more to autistic people and for diagnostic support services to be flexible and appreciative of wider neurodivergence and intersectionality.

Recent statistics found the prevalence of dyslexia in UK medical schools to be 7%, sitting below the national prevalence of 10%. The factors contributing to this discrepancy are currently unknown, but may result from an interplay of individual and systemic barriers to entering medicine. This collaborative, analytic autoethnography aimed to use the experiences of 'Meg', a fourth-year medical student who was diagnosed as dyslexic whilst at medical school, to explore how the lack of a diagnosis during the admissions process may have impacted her journey into medicine. The data were collected using reflective writing and an interview before conducting a thematic analysis. Our analysis resulted in the construction of two meta-themes, relating to the negative emotional impact of not having a diagnosis and feelings of inferiority. Seven themes were also constructed. Some explored how Meg's personal experience of undiagnosed dyslexia acted as a barrier to entering medicine. Others explored the impact of external factors, such as socio-economic background and the provision of support, on an individual's chance of successfully applying to medical school. Finally, we explored the inadvertent impact undiagnosed (and unrecognised) dyslexia had on Meg's life course, including how medicine-specific aptitude tests, such as the BMAT and UKCAT, may have contributed to this. These results provide a unique window into the culture of applying to medical school as an undiagnosed dyslexic person, whilst discussing the need for medical schools to consider how their admissions processes may inadvertently disadvantage undiagnosed dyslexic applicants.

This paper examines, from a psychological perspective, why some young people may diagnose themselves with a mental health condition or neurodevelopmental difference after engaging with TikTok content. The article joins the discourse around TikTok self-diagnosis among adolescents, which has circulated since 2022, and offers alternative considerations and perspectives. The reasons a young person may self-diagnose are complicated and multifaceted, extending beyond any explanation of naivety or attention-seeking. In this paper the phenomenon is approached through an application of social psychological theories relating to identity, belonging, and self-labelling. The broader context is considered against the backdrop of the neurodiversity movement and corresponding cultural shift, with reference to the intersecting systemic barriers faced by young people which impede the availability and accessibility of adequate support. Opportunities for future research and suggestions for how educational psychologists may consider online environments within professional practice are discussed.

This research explores the experiences of Beth, a university student in the UK, as she comes to be labelled as 'dyslexic', and as she has her diagnosis taken away. Through use of Interpretative Phenomenological Analysis (IPA) and discourse analysis, the research seeks to understand how Beth made sense of these experiences, and to explore the discursive 'life' of dyslexia within this sense-making. The discussion in this paper proceeds chronologically through Beth's story, from 'struggle', to 'legitimation' to 'derogation', and concludes with a call to recognise the role of diagnosis in the field of special educational needs (SEN) from a social constructionist and relational perspective.

Extreme demand avoidance (EDA) is increasingly described as part of the autism spectrum and is sometimes diagnosed as Pathological Demand Avoidance (PDA). Yet little is known, about the educational experiences of children with and without EDA behaviours. Using an online survey collecting both quantitative and qualitative data, 211 parents reported on the school experiences of their autistic children. 57 parents had a child with an additional diagnosis of PDA (AUT-PDA); 91 had a child with no diagnosis of PDA but, according to parent report, displayed EDA behaviours (AUT-EDA); and 63 had a child with neither a PDA diagnosis nor EDA behaviours (AUT). Results demonstrated that there were few group differences in terms of the frequency of failed school placements and exclusions. However, children in the AUT-EDA/-PDA groups had higher levels of behaviour that challenges, which were particularly high in those with a PDA diagnosis. There were no significant differences in school exclusions, but the fact that these occurred across all groups is of concern. Qualitative results suggested overwhelmingly negative school experiences for all groups but especially the AUT-EDA and AUT-PDA groups. Parents attributed such experiences to misunderstanding of their children's diagnoses and a lack of targeted support.

Post-diagnostic support for autistic adults in the United Kingdom is geographically inequitable and, in general, considered inadequate. This results in autistic adults facing unnecessary challenges and wide-ranging poor outcomes. A modified Delphi study sought to establish autistic adults' priorities for optimal provision of post-diagnostic support. The study was co-designed with 10 autistic adults across a series of three online workshops. Forty-three autistic adults, who had received their diagnosis in adulthood, completed a series of three online questionnaires through which 153 support priorities were identified. In a fourth questionnaire round, completed by 139 autistic adults, 24 priorities reached or exceeded a consensus threshold of 80% agreement that the item specified an important element of post-diagnostic support. Participants ranked "access to support where they live, training of professionals, support to process the impact of a late diagnosis, use of their preferred mode of contact and an individualised support plan" as their key priorities for post-diagnostic support. The whole priority list provides a clear and practical articulation of what autistic adults want from post-diagnostic support. This should be used by policymakers and service providers in the United Kingdom to ensure that post-diagnostic support for autistic adults is fit for purpose.

It was recently reported that learning one is autistic earlier in life is associated with greater quality of life and well-being in university students. In a pre-registered extension of this work, we addressed several limitations of this study by: (1) recruiting a larger sample of more diverse ages and education levels; (2) distinguishing between learning about and receiving an autism diagnosis; (3) accounting for additional confounding variables; and (4) studying different quality of life dimensions. Autistic adults (N = 300) reported when they first learned they were autistic, as well as when they actually received an autism diagnosis, and provided detailed socio-demographic information. Participants also completed measures of their autistic traits, as well as well-being and quality of life across multiple domains. In contrast to recent research, we found the age participants first learned they were autistic did not significantly and uniquely predict their quality of life and well-being. Rather, having more autistic traits was the strongest predictor of poorer quality of life and well-being, while other socio-demographic factors were also relevant. We discuss the implications of these findings for understanding and improving outcomes in autistic adults and call for higher quality open science on this important topic.

The UK government identified 'improving support within the criminal justice systems' as a priority for autistic people. There is a lack of quantitative research to enable policymakers to make evidence-based decisions on how to improve access to justice for autistic people. This study used a case-comparison design to compare the experiences of 145 autistic and 116 non-autistic adults who had been arrested at some point in their life. Autistic participants were nearly five times more likely to state that they were not given an appropriate adult even though they believed they needed one and felt less able to communicate with the police. Autistic participants felt less able to cope with stress, twice as likely to have experienced meltdowns and five times more likely to have experienced shutdowns because of their criminal justice involvement. We conclude that there are inequalities that autistic people face when navigating the criminal justice system and the degree to which they can participate effectively in the justice process. This has an impact on their mental health. Policy recommendations are discussed based on this evidence.

Clinical judgement is a crucial part of autism and attention deficit hyperactivity disorder (ADHD) assessments. This study aims to harness insights from psychology and sociology to explore clinical perspectives and assessment practices of autism and attention deficit hyperactivity disorder. Qualitative interviews were conducted with health care professionals (n = 17). Interviews were conducted between January and May 2019. Data were analysed using a thematic approach. Themes were sorted into two interrelated categories (1) approaches to diagnosis (2) elements of diagnosis. Approaches to diagnosis were comprised of the following subthemes: nature of diagnosis, application of diagnosis: natural and pragmatic, revisiting conceptualisations: sub-optimal practice & unhelpful diagnoses, autism and attention deficit hyperactivity disorder. Elements of diagnosis contained three related subthemes: contextualising standardised assessments, triangulating material, organisational factors. There is sometimes a pragmatic as well as nosological dimension to diagnosis. Competing desires for consistency and utility add further complexity to neurodevelopmental assessment.

Limited access to screening and evaluation for autism spectrum disorder in children is a major barrier to improving outcomes for marginalized families. To identify and evaluate available digital autism spectrum disorder screening resources, we simulated web and mobile app searches by a parent concerned about their child's likelihood of autism spectrum disorder. Included digital autism spectrum disorder screening tools (a) were on Internet or mobile app; (b) were in English; (c) had a parent user inputting data; (d) assigned likelihood category to child <9 years; and (e) screened for autism spectrum disorder. Ten search terms, developed using Google Search and parent panel recommendations, were used to search web and app tools in the United States, the United Kingdom, India, Australia, and Canada using Virtual Private Networks. Results were examined for attributes likely to benefit parents in marginalized communities, such as ease of searching, language versions, and reading level. The four terms most likely to identify any tools were "autism quiz," "autism screening tool," "does my child have autism," and "autism toddler." Three out of five searches contained autism spectrum disorder screening tools, as did one of 10 links or apps. Searches identified a total of 1475 websites and 919 apps, which yielded 23 unique tools. Most tools required continuous Internet access or offered only English, and many had high reading levels. In conclusion, screening tools are available, but they are not easily found. Barriers include inaccessibility to parents with limited literacy or limited English proficiency, and frequent encounters with games, advertisements, and user fees.

There is widely growing recognition of autism in girls, and both researchers and community members have called for improvements in the diagnostic process. What is not yet known is whether these recommendations are being taken up by professionals. In this study, nine semi-structured interviews were conducted with a variety of professionals involved in the autism diagnostic process. The collected data were analyzed using thematic analysis. Three main themes were identified: gendered differences; lack of services; and informal change. Our study found that diagnostic professionals are aware of gender differences in presentation, and they make a range of informal adaptations to their processes for girls. While this is positive for those girls who interact with knowledgeable professionals, our data highlight the need for more systematic changes to ensure equality of access to diagnosis and post-diagnostic support.

Opportunities for adults to access support following a clinical diagnosis of autism are limited. This study investigated perspectives of autistic adults, relatives and clinicians regarding characteristics of optimal adult autism post-diagnosis support and services. In Stage 1, key stakeholders were surveyed about recent experiences of UK adult autism post-diagnostic services immediately following assessment/up to 12 months afterwards. Information gathered from Stage 1 was used to devise a set of statements describing optimal post-autism diagnostic support/service characteristics. In Stage 2 statements were presented to clinicians in a modified Delphi process. Data analyses were non-parametric and descriptive. Three hundred forty-three autistic adults and 45 relatives completed the Stage 1 surveys. Thirty-five clinicians completed a parallel survey. Just over half of adults and relatives reported receiving a follow-up appointment. Fewer than 40% of autistic people received support/services 12 months after diagnosis. Eleven statements describing optimal post-autism diagnostic support/service provision were developed and consensus among clinicians was reached on all. Autistic adults, relatives and clinicians described some aspects of post-autism diagnosis support and services positively; however, there were significant opportunities for improvement. The study findings can be used to develop current UK post-diagnosis support and services and may be relevant internationally.

A recent UK study found that 28% of autistic children were diagnosed with autism after starting secondary school, a stage where self-concept and social identity are the main developmental tasks. This study uses Foucauldian Discourse Analysis to explore the discourses ten girls with a diagnosis of autism use in their constructions of self-concept and social identity in interviews and written journals. The actions that are made possible through the discourses employed are considered. Three discourses which participants draw upon are: a diagnostic discourse; an individualistic discourse; and a normativity discourse. These discourses were used to construct the self as a "legitimised autistic", as "a person with support needs", as "uniquely individual", as a person "in the process of becoming" and as a "self in hiding from a hostile world". Social identities based around constructs of "fitting in" and "sticking out" were identified. Implications for practice are suggested.

Background: Extensive variation in the terminology used for paediatric diagnoses across the speech and language therapy research literature is an internationally recognized problem. Little is known, however, about how and how often diagnoses are given in a clinical context. In the UK, speech and language therapists (SLTs) identify and support children who have speech and language needs. To understand and address clinically rooted terminological issues that may directly impact clients and families, there is a need for exploration of how the diagnostic process is operationalized in practice. Aim: To identify, from the perspective of SLTs, areas that present as enabling and obstructive factors to conducting diagnosis in clinical practice. Methods & Procedures: Taking a phenomenological approach, 22 paediatric SLTs were interviewed using a semi-structured format. Thematic analysis revealed a number of factors that were either classified as 'enabling' or 'obstructive' to their diagnostic processes. Outcomes & Results: Participants were often hesitant to provide a diagnosis to families and universally reported the need for targeted guidance, which accounts for the demands of current clinical practice, to guide their diagnostic process. Four enabling factors were identified from participant data: (1) working to a medical model, (2) the availability of collegiate support, (3) recognizing the benefits of diagnosis,, and (4) relating to the needs of the family. Seven themes portrayed obstructive factors in practice: (1) the complex presentation of clients, (2) the risk of giving a 'wrong' diagnosis, (3) participants' uncertainty about diagnostic criteria, (4) insufficient training, (5) service models, (6) concerns about stigma and (7) not having enough clinical time. The obstructive factors created dilemmas for participants and resulted in hesitancy to give a diagnosis, potentially contributing to delays in diagnosis experienced by families as reported in previous literature. Conclusions & Implications: Of paramountcy to SLTs were the individual needs and preferences of their clients. Practical barriers and areas of uncertainty increased hesitance to diagnose, which may inadvertently preclude families from accessing resources. Recommendations include more widely accessible training in diagnostic practice, guidelines to support clinical decision-making, and a greater understanding of client preferences with regard to terminology and its potential relationship with social stigma.

Background: In 2016/17, the CATALISE Consortium published the results of a multinational and multidisciplinary Delphi consensus study, representing agreement among professionals about the definition and process of identification of children with Developmental Language Disorder (DLD) (Bishop et al., 2016, 2017). The extent to which the current clinical practice of UK speech and language therapists (SLTs) reflects the CATALISE consensus statements is unknown. Aims: To investigate how UK SLTs' expressive language assessment practices reflect the CATALISE documents' emphasis on the functional impairment and impact caused by DLD, by examining: whether multiple sources of assessment information are gathered; how standardised and non-standardised sources are combined in clinical decision-making, and how clinical observation and language sample analysis are utilised. Methods and Procedures: An anonymous, online survey was carried out between August 2019 and January 2020. It was open to UK-based paediatric SLTs who assess children up to age 12 with unexplained difficulties using language. Questions probed different aspects of expressive language assessment which are referred to in the CATALISE consensus statements and supplementary comments, and asked about participants' familiarity with the CATALISE statements. Responses were analysed using simple descriptive statistics and content analysis. Outcomes and Results: The questionnaire was completed by 104 participants, from all four regions of the United Kingdom, working in a range of clinical settings with different levels of professional experience of DLD. The findings indicate that clinical assessment practices broadly align with the CATALISE statements. Although clinicians carry out standardised assessments more frequently than other types of assessment, they also gather information from other sources and use this alongside standardised test scores to inform clinical decisions. Clinical observation and language sample analysis are commonly utilised to evaluate functional impairment and impact, along with parent/carer/teacher and child report. However, asking about the child's own perspective could be more widely utilised. The findings also highlight a lack of familiarity with the details of the CATALISE documents among two thirds of the participants. Conclusions and Implications: Assessment practices broadly align with the CATALISE statements, but there is a need for greater clarity regarding terminology and the assessment of functional language impairment and impact. This research should prompt discussion in the profession about how to further develop and adopt expressive language assessment practices which reflect the CATALISE consensus and support effective assessment.

Background: Developmental language disorder (DLD) is a condition which affects an individual's ability to use and understand language. Terminological confusion, and the use of non-evidence-based diagnostic criteria has impacted access to services for this population for several decades. Changes in terminology and diagnosis were proposed as part of a UK-based consensus study, Criteria and Terminology Applied to Language Impairments (CATALISE), in 2016 and 2017. Since the publication of the recommendations, there have been active efforts across several English-speaking countries to support uptake of these recommendations into policy and practice. Aims: The aim of the study was to explore the experiences of individuals who have been leading the dissemination of the CATALISE recommendations since their publication in 2017. The study was undertaken to inform future implementation efforts aimed at facilitating the adoption of the recommendations into policy and practice. Methods & Procedures: Researchers, practitioners and parents from nine countries were recruited to the study (n = 27). Online focus groups and semi-structured interviews were conducted using topic guides informed by the Consolidated Framework for Implementation Research. Inductive thematic analysis was undertaken. Preliminary findings were member-checked prior to completion of the analysis. Outcomes & Results: CATALISE recommendations were described as partially adopted by participants. Dissemination strategies included building a coalition, conducting educational meetings, and developing educational materials. Common barriers to implementation related to the complexity and compatibility of the recommendations, and practitioner confidence. Four themes were identified across the data set to guide future implementation efforts: (a) ride the wave, craft the narrative (b) reach across the divide, be brave (c) create space for multiple voices and, (d) support for speech and language therapists on the front line. Conclusions & Implications: Individuals with DLD and their families should be included in future implementation planning. Engaged leadership is essential to address issues of complexity, compatibility, sustainability and practitioner confidence if CATALISE recommendations are to be integrated into service workflow and processes. Implementation science can provide a useful lens to progress future research in this area.

Accessing adult autism diagnostic pathways can be difficult. This study explored perspectives of UK autistic adults, relatives and clinicians regarding the characteristics of optimal adult autism assessment and diagnostic services. In stage 1, three key stakeholder groups were surveyed about experiences of adult autism diagnostic services (pre-assessment/assessment): 343 autistic adults, 45 relatives and 35 clinicians completed parallel surveys. Information from stage 1 surveys was used to devise statements for a modified Delphi process in stage 2 seeking consensus among clinicians on optimal diagnostic service characteristics. Data analyses were non-parametric and descriptive. Over half of adults were in contact with mental health services prior to autism diagnosis. Clinicians reported that multidisciplinary diagnostic teams lacked key professionals. Thirteen statements describing optimal autism diagnostic service provision were developed. There was consensus from clinicians on 11 statements relating to clear assessment pathways, updates for people while waiting, pre-assessment information gathering/provision, co-occurring condition identification and training/networking. Some autistic adults, relatives and clinicians were positive about services, all stakeholders identified improvements were needed. The findings describing optimal service provision are relevant for UK clinicians, managers and commissioners to improve diagnostic assessments for autistic adults, and have international relevance for similar health systems.

Aim: While there is increasing awareness of best practice in LGBT-inclusive education, little is known about the specific educational issues facing intersex individuals, and how the education system could be improved for this marginalised group. Method: This paper reports an empirical study involving semi-structured interviews with two young intersex adults, to understand their retrospective, lived educational experiences and ascertain their views on improving educational practice around intersex issues. Findings: Relevant themes identified were knowledge and understanding, impact of diagnosis, information sharing, journey of identity acceptance, protective factors, and wellbeing. Implications: Recommendations are made regarding how schools and professionals might support intersex children and young people during their education.

Much of Western media has promoted the idea that we are facing an epidemic of mental illness and psychiatric emergencies in contemporary Western society and worldwide, and that young people are a particularly vulnerable group. Schools have become a prominent site of concern and focus for this discourse as mental health problems are said to start early in life; thus, targeting intervention at people in their early years and greater mental health awareness amongst staff and pupils are perceived as important mental disorder prevention strategies. However, the belief that mental disorders can be classified and investigated using the same tools as physical health has led to a system of knowledge that lacks validity being constructed. This ideology, far from leading to enlightened progress that will prevent and/or ameliorate future mental health problems, inadvertently sets young people on a path towards alienation from, and suspicion of, their emotional lives and a lack of curiosity about, or tolerance of, suffering. This article explores how a lack of understanding about what sort of 'thing' a mental health problem/disorder/diagnosis/illness is leads to confusion about the meaning and consequences of experiencing mental distress and/or mental difference. Interviews with secondary school teachers carried out by one of the authors (ZT) show how awareness of mental health and mental disorder has increased in UK secondary schools over the last decade and how this has led to an expansion in the numbers of students thought to have mental health problems that required professional intervention. As a result, teachers now identify many behaviours and experiences they previously deemed ordinary and/or understandable as likely mental health problems that required professional expertise they lacked. Rather than preventing mental health problems, it is likely that this ideology, and the resulting practices it encourages, are creating them.

The prevalence of autism/autism spectrum disorder (ASD) has been increasing across the world. Previous studies in Norway reported, that the prevalence rate for 0-10-year-old children is 1 in 166, and in the case of 11-year-old children it is 1 in 125. Moreover, another nationwide study discovered that 1 in 192 males and 1 in 695 females between the ages of 1-16 years had autism in Norway in the year 2016. This study is underpinned by the data from the National Patient Registry (NPR) for registered incidences of autism/ASD (ICD-10: F84.0 Childhood autism and F84.5 Asperger syndrome). The results show that the prevalence rates of autism/ASD in the capital city of Oslo increased from 2012 to 2016 and the number of children with autism/ASD doubled during this period. Furthermore, in 2016 the results revealed that that 1 in 349 males and 1 in 1594 females between the ages of 1-5 years old had Autism/ASD. Similarly, among the age group of 6-16 years, 1 among 157 males and 1 among 544 females had autism/ASD in the capital city of Oslo in 2016. These findings suggest a 'school-age-effect' in the increase of prevalence rates among the school-age children compared to the preschool-age children. In the following study, the results are presented and discussed along with some suggestions for the educational and healthcare authorities.

For people with symptoms that could indicate cancer, prompt presentation to a health care practitioner facilitates early diagnosis, improves survival, and is encouraged by public health agencies and cancer charities. Nevertheless, time to presentation from symptom onset (the patient interval) is known to vary widely. We report findings from a mixed-methods study examining help-seeking among people with symptoms of lung or colorectal cancer. Patients referred for urgent investigation were invited to complete a questionnaire about their symptoms and help-seeking experiences; 26 of these participants then took part in a semi-structured interview. Discrepant accounts of help-seeking were reported through the different research methods, with longer 'patient intervals' reported in interviews. We use the concept of 'public and private accounts' to reflect upon why socially conforming accounts of early presentation were presented in the questionnaires, whilst accounts of longer 'patient intervals' tended to be presented within an interview encounter.

This study aims to explore the perceptions of foundation doctors (FDs) in the United Kingdom (UK) surrounding raising concerns in the workplace. An online survey was sent to all FDs in the UK between February and March 2018. Respondents were asked what they had observed or experienced that had been ethically challenging during their foundation training. The qualitative responses were coded into themes. Reasons why FDs wished to raise concerns in the workplace included disagreements about clinical decisions within the team, insufficient availability of resources, lack of senior colleague support and having to work beyond their competencies. Challenges faced by FDs when raising concerns included organisational resistance to change, difficulties in communicating ideas to those higher up in the hierarchy and the emotional stress of whistleblowing regarding senior colleagues. Perceived consequences of raising concerns included negative impact on FDs' reputation and career, and fear of bullying. To overcome these barriers, changes within organisations at all levels must take place in order to provide an environment where FDs are encouraged to raise concerns and thus make positive changes to their work environments for themselves, their colleagues and patients.

Autism Spectrum Disorder (ASD) is a highly heterogeneous set of neurodevelopmental disorders with the global prevalence estimates of 2.20%, according to DSM5 criteria. With the advancements of technology and availability of huge amount of data, assistive tools for diagnosis of ASD are being developed using machine learning techniques. The present study examines the possibility of automating the Autism diagnostic tool using various machine learning techniques on a dataset of 701 samples that contains 10 fields from AQ-10-Adult and 10 from individual characteristics. It takes two scenarios into consideration. First one is ideal case, where there are no missing values in the test cases. In this case Artificial Neural Network (ANN), Support Vector Machine (SVM) and Random Forest (RF) classifiers are trained and tested on the pre-processed dataset. To reduce computational complexity Recursive Feature Elimination (RFE) based feature selection algorithm is applied. To deal with the real-world data, in the second case missing values are introduced in the test dataset for the fields' 'age', 'gender', 'jaundice', 'autism', 'used_app_before' and their three combinations. Support Vector Machine, Random Forest, Decision Tree and Logistic Regression based RFE algorithm is introduced to handle this scenario. ANN, SVM and RF classifier based learning models are trained with all the cases. Twelve classification models were generated with RFE, out of which best performing models specific to missing value were evaluated using test cases and suggested for ASD Diagnosis.

The purpose of this literature review was to analyze and synthesize the most current research about the experiences of young adults with autism spectrum disorder (ASD) without co-occurring intellectual disability (ID). Based on the inclusion and exclusion criteria, 10 empirical research studies from 2009-2019 were selected for review including quantitative, qualitative, and mixed methods studies. The research questions for this review involved identifying themes regarding the academic, non-academic and gendered experiences of young adults with ASD without ID. After analysis and synthesis, 12 subthemes emerged. The results indicate that the transition from high school, mental health, and misdiagnosis are some of the factors that contribute to this population's ability for success, among others discussed in the review. The findings of this review indicate that these individuals can often be overlooked as being someone in need of intervention because of their perceived academic success; however, they still require supports in other domains in order to ensure a higher quality of life.

From a purely educationist perspective, gaining a deeper understanding of several aspects related to the prevalence of autism/ASD in a given population is of great value in planning and improving educational and psychological intervention for treatment, training, and teaching of children with this disorder. In this article, I present and discuss numerous facets of prevalence studies, beginning with assessing the changes in diagnostic manuals (DSM and ICD) over time. Based on the existing available research literature and empirical studies published during 2000 to 2016, I address the geographical-dimension and age-dimension of prevalence of autism/ASD. Over 50 studies from 21 countries reveals that prevalence rates of autism/ASD among children are on rise. There are inter-national and intra-national, regional/territorial variations with regard to prevalence rates, and I present and discuss possible factors/factor-groups that can explain these variations. Regardless of their geographic location, children with autism/ASD can be treated, trained, and taught, but to do so effectively requires reliable prevalence studies that can properly inform policy makers and higher institutions about the steps that must be taken in the field in order to improve the learning conditions of these children with special needs. Moving forward, it's essential that studies of geographical dimension and age dimension of prevalence of autism/ASD must be supplemented by other (i.e. gender, socio-economic, ethnic, cultural, and language) dimensions to help give us the perspective we need to grapple with this increasingly common disorder.

This exploratory study aimed to explore the association between depression and self-harming behaviour in adolescence and the timing of diagnosis for autism spectrum disorder. We analysed data on 11,320 14 year olds, including 396 children with autism spectrum disorder, from the UK Millennium Cohort Study. Exposures were the timing of diagnosis for autism spectrum disorder confirmed by parental report at ages 5, 7, 11 and 14. Outcomes were depression measured by the Short Mood and Feelings Questionnaire (scores [greater than or equal to] 12) and self-report of self-harming behaviour, both assessed at age 14. Data were analysed using multivariable regression analysis. 91% of the autism spectrum disorder group had within-typical-range cognitive ability. After adjusting for child and family confounders, there was a positive linear trend between diagnostic age and depression, with children diagnosed between ages 7 and 11 and children diagnosed after age 11 showing increased symptoms (odds ratio=2.21 and 3.58, respectively). A similar trend was observed for self-harming behaviour, with children diagnosed after age 11 showing the strongest association (odds ratio=3.16). These results suggest the importance of earlier diagnosis in preventing secondary mental health problems in this population, particularly among those without cognitive delays. Further studies replicating across a wider intellectual spectrum and clarifying the underlying mechanism are warranted.

Background: There is a need to better understand the experiences and support needs of paid and family carers of people with an intellectual disability and dementia, and the role of Intellectual Disability Dementia Care Pathways (IDDCPs). This study explored the experiences of carers, and IDDCPs and other support structures within those experiences. Methods: A constructivist grounded theory methodology was implemented. Data were obtained through 23 semi-structured interviews with two family carers, eight paid carers and eight healthcare professionals. Findings: The study's theory produced five interrelated categories: Impact of Dementia, Challenging the Diagnosis Process, Continuum of Support, Continuity and Continuum of Understanding. Conclusions: Findings have demonstrated the importance of planning and supporting carers' holistic needs; the role of an IDDCP in the post-diagnostic support (or lack of it) for carers; and the importance of a timely diagnosis of dementia. Recommendations for practice are offered.

Autistic people are at high risk of dropping out of university, but little research has examined this issue. Fourteen autistic people participated in semi-structured interviews examining their experiences at university and the reasons they had dropped out. Thematic analysis identified patterns in participants' responses. Themes were categorised as systemic issues, challenges within university or life after dropping out. Systemic issues centred around accessing diagnosis, autism understanding, mental health and outsider status. Challenges at university included culture shock, becoming disengaged, lack of proactive support and perceived inevitability of dropping out. Finally, life after dropping out was characterised by processing of trauma and shame, and realisation of doing 'what's right for you'. Together, these themes suggest that many improvements could be made at universities, such as more proactive support and creating more accessible environments. Societal-level change is also needed to improve educational opportunities for autistic people.

More adults are undergoing autism assessment due to recent changes in awareness, diagnostic criteria and professional practices. This scoping review aimed to summarise research on autism diagnosis in adulthood and identify any gaps for future study. The authors searched for studies involving first-time assessment and diagnosis of autism in adults, which identified 82 studies from 13 countries using various methodologies. Six themes of (1) prevalence, (2) diagnostic pathways and processes, (3) gender, (4) psychosocial characteristics, (5) co-occurring conditions and (6) experiences of diagnosis were identified across the studies. Findings suggest that receiving an autism diagnosis has a significant emotional impact on adults, but accessibility and processes are inconsistent, and formal support services are lacking. More research is needed on autism diagnosis in adults with intellectual disability, consequences of the timing of diagnosis, and support after diagnosis.

This study aimed to identify determinants of a late autism spectrum disorder diagnosis, including diagnoses made 'very late' (i.e., in adolescence), using the Millennium Cohort Study, a nationally representative population-based cohort in the United Kingdom. Children diagnosed with autism spectrum disorder by age 14 (N = 581) were included and grouped by the parent-reported timing of diagnosis: before school (up to age 5), during primary school (age 5-11) and during secondary school (age 11-14). Predictors of diagnostic timing, at the child, family and school levels, were investigated using multinomial logistic regression. Most (79%) children with autism spectrum disorder were diagnosed after school entry, and 28% were not diagnosed until secondary school. Among those not diagnosed until secondary school, 75% had been identified at age 5 years by a parent and/or teacher as having socio-behavioural difficulties. Being diagnosed after starting school was predicted by living in poverty (adjusted relative risk ratio: primary = 1.90, 95% confidence interval: 1.03-3.53; secondary = 2.15, 1.05-4.42) and/or having no initial parental concerns (primary = 0.32, 0.15-0.70; secondary = 0.19, 0.09-0.43). Having typical-range intelligence also predicted diagnosis during secondary school. The result indicates that those without cognitive delays and poorer children were at risk of 'very late' (i.e. adolescent) diagnosis. Strategies to promote earlier identification, targeting age at primary school entry, could help those more likely to be diagnosed late.

Females often receive autism spectrum condition diagnoses later than males, leaving needs misunderstood. This study aimed to explore the lived experiences of female adults diagnosed with an autism spectrum condition in middle to late adulthood. Eleven autistic females diagnosed over the age of 40 years completed semi-structured interviews, analysed using Interpretative Phenomenological Analysis. Four superordinate themes emerged: "A hidden condition" (pretending to be normal and fitting in; mental health and mislabelling), "The process of acceptance" (initial reactions and search for understanding; re-living life through a new lens), "The impact of others post-diagnosis" (initial reactions; stereotyped assumptions), and "A new identity on the autism spectrum" (negotiating relationships, connections and community; changing well-being and views of the self; the meaning of diagnosis). Findings highlight several factors not previously identified that affect late diagnosis in females, including widespread limited understandings of others. Diagnosis was experienced by several participants as facilitating transition from being self-critical to self-compassionate, coupled with an increased sense of agency. Participants experienced a change in identity that enabled greater acceptance and understanding of the self. However, this was painful to adjust to at such a late stage.

To develop the Chinese version of Clinical Outcomes in Routine Evaluation-Outcome Measure (CORE-OM) and examine its psychometric properties, we investigated a sample of 689 non-clinical and 309 clinical participants and found this measurement had good acceptability, internal reliability, test-retest reliability and convergent validity; it had moderate correlations with the Schwartz Outcome Scale and Symptom Check List-90, which showed an acceptable concurrent validity. Specifically, we explored the cut-off line of clinical criterion and found a g factor plus three-factor solution better than original four-domain model in Chinese context. The CORE-OM is a valid tool with referenced cut-offs to measure clinical outcomes, which can bridge the gap in routine clinical evaluation in China.

The way an autism diagnosis is disclosed to parents has been found to play a crucial role in their acceptance of, and the way they cope with, their child's diagnosis. Yet, research into parents' subsequent experiences of disclosing a diagnosis to their children, and talking to their families about autism more generally, is limited. Using an online survey, the current study examined 558 parents' experiences of talking about autism with their autistic and non-autistic children. Results demonstrated that most parents (n = 379, 67.9%) had told their autistic children about their diagnosis. Despite few parents (n = 163, 20.4%) receiving advice or support regarding the disclosure of the diagnosis, those that had disclosed felt satisfied with the process (n = 319, 84.2%) and felt confident in talking about autism with their children (n = 339, 92.4%). Those who had not told their autistic children about the diagnosis largely planned to discuss this with their child in the future (n = 100, 73.5%), felt confident in doing so (n = 95, 70.9%) and were satisfied with their decision (n = 95, 70.4%). Analysis of open-ended data, using thematic analysis, highlighted the importance of openness and the need to tailor explanations to individual children's needs, while acknowledging that disclosure could often be challenging for parents.

The purpose of this article is to systematically identify, appraise and synthesise qualitative research concerning UK parents' experiences of their child receiving a diagnosis of autism spectrum disorder. In total, 11 articles were located through a systematic search of five databases, reference lists, citations and grey literature. These were critically appraised and their results synthesised using meta-ethnography. The quality scores given to included studies were variable, so suggestions are made to improve reporting of future research. Three third-order constructs were developed: (1) emotional needs, (2) informational needs and (3) relational needs. Each relates to parents' needs as they navigate the process of making sense of their child by seeking and adjusting to a diagnosis of autism spectrum disorder. Parents' experiences of assessment and diagnosis of their children varied, but these needs were evident across the course of the process. Fathers seemed to find it more difficult than mothers to reconcile having a child with autism spectrum disorder, which may have been grounded in a sense of exclusion from the assessment process. The findings should be considered by professionals working with children, particularly those directly involved in diagnosing autism spectrum disorder. Clinical implications emphasise the need for consideration of parents' emotional needs, provision of information to aid understanding, and strong relationships with professionals. Future clinical research, which should be informed by quality standards, might develop and evaluate standards of assessment and diagnosis, including post-diagnostic support.

Objectives: To understand the views of qualified medical practitioners regarding "reasonable adjustments" and the quality of the care and treatment provided to adults with intellectual disabilities when admitted to acute hospitals as inpatients. Methods: Semi-structured interviews took place with 14 medical practitioners, seven from each of two acute hospitals, with a thematic analysis of the resulting data. Results: All 14 medical practitioners reported problems in the diagnosis and treatment of patients with intellectual disabilities. Most participants attributed these difficulties to communication problems and/or behaviours that, in the context of a hospital ward, were non-conforming. However, a minority reported that, because they were likely to have multiple comorbid health conditions, patients with intellectual disabilities were more complex. In addition, half of all these respondents reported making little use of "reasonable adjustments" introduced to improve the quality of the care received by this group of patients. Conclusions: Medical practitioners should make better use of the "reasonable adjustments" introduced in the UK to address inequities in care and treatment received by patients with intellectual disabilities. However, training should also focus on the biomedical complexities often presented by these men and women.

Anecdotal evidence suggests that autistic people experience an elevated risk of homelessness, but systematic empirical research on this topic is lacking. As a step towards filling this gap in knowledge, we conducted a preliminary investigation of the prevalence of "Diagnostic and Statistical Manual of Mental Disorders" (5th ed.) autism symptoms in a group of long-term homeless people. The entire caseload (N = 106) of a UK homeless outreach team was screened (excluding individuals born outside of the United Kingdom or Republic of Ireland) using an in-depth, semi-structured interview with keyworkers, based on "Diagnostic and Statistical Manual of Mental Disorders" (5th ed.) diagnostic criteria. This showed adequate inter-rater reliability, as well as evidence of criterion and construct validity. Of the sample, 13 people (12.3%, 95% confidence interval (7.0, 20.4)) screened positive, meeting "Diagnostic and Statistical Manual of Mental Disorders" (5th ed.) autism criteria by keyworker report. A further nine people (8.5%, 95% confidence interval (4.5, 15.3)) were 'marginal', having autistic traits that were not quite sufficient to meet "Diagnostic and Statistical Manual of Mental Disorders" (5th ed.) criteria. Those with elevated autistic traits, compared to those without, tended to be more socially isolated and less likely to use substances. This study has provided initial evidence that autistic traits are over-represented among homeless people and that autistic homeless people may show a distinct pattern of characteristics and needs. Further investigation is required to build upon these provisional findings.

There has been recent interest in the relationship between socioeconomic status and the diagnosis of autism in children. Studies in the United States have found lower rates of autism diagnosis associated with lower socioeconomic status, while studies in other countries report no association, or the opposite. This article aims to contribute to the understanding of this relationship in the United Kingdom. Using data from the Born in Bradford cohort, comprising 13,857 children born between 2007 and 2011, it was found that children of mothers educated to A-level or above had twice the rate of autism diagnosis, 1.5% of children (95% confidence interval: 1.1%, 1.9%) compared to children of mothers with lower levels of education status 0.7% (95% confidence interval: 0.5%, 0.9%). No statistically significant relationship between income status or neighbourhood material deprivation was found after controlling for mothers education status. The results suggest a substantial level of underdiagnosis for children of lower education status mothers, though further research is required to determine the extent to which this is replicated across the United Kingdom. Tackling inequalities in autism diagnosis will require action, which could include increased education, awareness, further exploration of the usefulness of screening programmes and the provision of more accessible support services.

Seeking young people's perspectives is integral to delivering effective mental health care. This systematic review aimed to synthesise the qualitative research exploring the life experiences of young people diagnosed with ADHD. Four electronic databases (CINAHL, MEDLINE, PsycInfo and SCOPUS) were searched in February 2017 for peer-reviewed, qualitative English language studies exploring the perspectives of adolescents formally diagnosed with ADHD. Eleven studies were included and appraised for methodological quality and a thematic synthesis was undertaken. Participants' stories highlighted both positives and challenges within five analytical themes: Differing perspectives of the problem, Societal pressures, Sense of self, Feelings about medication, and Maturational shift from passive to active. The findings suggested that interpersonal conflict, stigma, and invalidation have a negative psychological impact upon young people's self-esteem and identity. Support strategies are needed to maximise adolescents' resilience, autonomy and abilities.

Introduction: Post-traumatic stress disorder (PTSD) may be under-recognized in people with intellectual disabilities (PWID) and reviews on appropriate screening tools and prevalence are lacking. This review aims to identify PTSD screening tools for PWID and estimate the prevalence of PTSD within this population. Method: Medline, PubMed, Embase, PsycINFO, Cochrane, Global Health, and Web of Science databases were searched (inception to October 2017) to identify eligible literature. Papers were also found via manual searches of the references of eligible studies. Studies were reviewed in accordance with the Preferred Reporting Items for Systematic reviews and Meta-analyses (PRISMA) guidelines, subjected to exclusion criteria and quality appraised using STROBE criteria for observational studies and an adapted form of the Newcastle-Ottawa scale for cross-sectional studies. Seven studies were identified. Meta-analysis was carried out on the prevalence studies and heterogeneity quantified using I[superscript 2]. Results: Three tools for screening PTSD in PWID were found: two for use in adults (the Lancaster and Northgate Trauma Scale and the Impact of Event Scale -- Intellectual Disabilities) and the Adapted Anxiety Disorders Interview Schedule for Children with PTSD. Five studies reported PTSD prevalence in PWID. The weighted pooled prevalence of PTSD in PWID was found to be 10%, 95% CI [0.4%, 19.5%], toward the upper limit of estimated PTSD prevalence in the general population (5-10%). Conclusion: PTSD can be diagnosed in PWID but may go unrecognized by health-care professionals. The identified tools should be further compared and assessed for acceptability and efficacy to improve the identification of PTSD in PWID.

Accessing an autism diagnosis is a key milestone, both for an individual and their family. Using a qualitative methodology, the current study examined the views and experiences of ten autistic adults, ten parents of children on the autism spectrum, and ten professionals involved in autism diagnosis, all based in the United Kingdom (UK). Interviewing these 30 respondents about the diagnostic process and subsequent support options, the goal was to identify aspects of the diagnostic process that are working well, and areas in which improvements are needed. Using thematic analysis, three key themes were identified: the process of understanding and accepting autism; multiple barriers to satisfaction with the diagnostic process; and inadequate post-diagnostic support provision.

Research on the experience of growing older with autism is very limited. In this study, 13 people with autism aged over 50 years participated in semi-structured interviews about their experiences of diagnosis, social support and getting older. Interviews were analysed using thematic analysis. Three overarching themes were generated: difference, life review and longing for connection. Prior to diagnosis, individuals had awareness of their difficulties, attributed these to intrinsic difference and engaged in a deliberate process of reducing the visibility of this difference. Diagnosis prompted a process of life review and externalisation, whereby past negative experiences were reattributed to autism as opposed to the self. Loneliness, isolation and yearning for interpersonal connection were ubiquitous and longstanding. Autism support and social groups were highly valued, offering opportunities for belonging, acceptance and social comparison. Results highlight the similarity to younger age groups in terms of lived experience and need for greater support, particularly with respect to reducing isolation and improving access to diagnosis.

Background: An increasing number of genetic causes of intellectual disabilities (ID) are identifiable by clinical genetic testing, offering the prospect of bespoke patient management. However, little is known about the practices of psychiatrists and their views on genetic testing. Method: We undertook an online survey of 215 psychiatrists, who were contacted via the Royal College of Psychiatrist's Child and Adolescent and Intellectual Disability Psychiatry mailing lists. Results: In comparison with child and adolescent psychiatrists, intellectual disability psychiatrists ordered more genetic tests, referred more patients to genetic services, and were overall more confident in the genetic testing process. Respondents tended to agree that genetic diagnoses can help patient management; however, management changes were infrequently found in clinical practice. Conclusions: Differences are apparent in the existing views and practices of child and adolescent and intellectual disability psychiatrists. Developing training and collaboration with colleagues working in genetic services could help to reduce discrepancies and improve clinical practice.

Background: Dementia prevalence rates are higher amongst people with learning disabilities than the general population. People with Down's syndrome are at even greater risk of developing dementia and of developing dementia at an earlier age. This study, conducted as part of a wider service evaluation, explored community learning disability team perspectives on screening, pathways, training, information and supports developed to improve services for people with learning disabilities and dementia. Methods: A focus group was held with health and social care professionals working in community learning disability services. Thematic analysis was used to analyse the data. Results: The dementia screening, pathways and processes had become embedded in practice, leading to a common framework, an efficient, multidisciplinary, proactive approach, earlier detection and diagnosis of dementia and identification of other health needs and issues. This avoided crisis situations supporting people to remain at home longer. Training and information were felt to improve care quality and reduce caregiver anxiety. People with learning disabilities and caregivers were involved to varying extents. External influences impacting on support included the availability, appropriateness, cost and effectiveness of different models of service provision. Conclusions: Service developments have been made as a result of the findings which suggest that dementia pathways and supports improve service provision and outcomes for people with learning disabilities. It is important to develop the evidence base on the effectiveness of different service models for people with learning disabilities and dementia. Future studies need to gather views of people with learning disabilities and carers.

"Institutional autism" is understood as a "learned behavior" produced by an institutional environment such as an orphanage. Some autistic-like behaviors may be adaptive in an institution, but become mal-adaptive after the child's adoption into a family. A differential diagnosis between autism as a medical condition and learned autistic-like post-institutional behaviors is to be made. A conclusion is drawn that "institutional autism" is merely a description of certain patterns of post-institutionalized behavior that may appear similar to what is observed in children with autism. Abrupt native language attrition, typical for the majority of international adoptees, could contribute to "autistic-like" behavior.