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The differential impact of young adult diagnosis on families during the period of transition from school to adult life was examined. Participants were parents of 246 young adults with severe learning disability aged 18‐26. Young adults were classified into four diagnostic groups: autism (N = 30), Down's syndrome (N = 68), cerebral palsy (N = 95) and an undifferentiated learning disability group (N = 53). Research questions pertained to parent expectations about their young adults' transition to living and working environments post high school. Parental satisfaction and worries were also assessed. The results indicated more community expectations of work for young adults with Down's syndrome, and more restrictive expectations for young adults with autism, including more expectations that young adults with autism would move out of the family home into a residential environment. Parents of young adults with autism also worried significantly more about various aspects of transition than other parent groups.

Autistic young people have health and care needs that may benefit from a multi-agency intervention. The “Current View” tool is routinely used in England to profile the needs of young people referred to mental health services. This study aims to examine associations between comorbidities and complex needs in autistic and non-autistic young people to assess the multifaceted needs of autistic young people.

A cohort study was conducted using data from the electronic patient record, comparing autistic and non-autistic young people to see which items in the four “Current View” tool categories were associated with autistic young people.

Issues associated with autistic young people were: “community issues”, “attainment issues” and “deemed child in need” (all p < 0.001). Autistic young people scored significantly more items (p < 0.05) in the categories complexity/contextual/educational factors. Comorbidities associated with autistic young people included anxiety, “behavioural difficulties”, “peer relationship difficulties” and “self-care issues” (all p < 0.001). There was an association with increased comorbidities and complexity factors in autistic young people which suggests increased support from agencies may be beneficial.

Few studies have used data in the “Current View” tool to assess young people referred to services. More use could be made of this data for planning and delivering services.

The purpose of this study is to investigate the information-seeking behavior of Egyptian parents of autistic children.

The study sample consists of 61 parents across Egypt, divided into six focus groups, as equal as possible, to represent Northern, Middle and Southern Egypt.

Dmographically, of the 61 parents, 32 (52.5%) were fathers, and 29 (47.5%) were mothers. A large number of parents' ages ranged from 31 to 45 years old. The highest percentage of them was holding a BA, followed by a high school/diploma, and the highest percentage was found to be married. The parents of autistic children followed many methods and channels to obtain supportive information related to their children's disease. They used many types of information, which varied between formal and informal sources. While just over a quarter of Egyptian parents prefer to use formal sources (books, newspapers, magazines, health publications, pamphlets, as well as specialized libraries), more than three-quarters of them used informal sources, such as mobile/smartphones, the Web, social media and social networking sites. The information related to the search for institutions supporting autistic people came in the first place, then that information related to searching for specialized centers in treating autistic children, then information related to rehabilitation, integration and psychological support centers for these children and then information related to the search for financial aid provided by charitable or even government agencies. Some parents were found to have limited awareness of their children's treatment mechanism, as some of them do not consider the need to treat their children in a systematic, continuous, and systematic manner. Similarly, the lack of basic services and shortage of government centers specializing in the treatment of these children. Parents also emphasized the lack of government support, as well as the lack of curative research centers. Some also pointed out that there was a shortage of workshops for the rehabilitation of their children and themselves as well.

This research is considered to be the first research of its kind at the local and Arab levels, which is also one of the few studies at the regional level that is interested in this community of information seekers. The findings of this research can raise awareness about the information behavior of Egyptian parents of autistic children among those who are interested in the role of the information and its use by specific groups of the information society, as well as decision makers.

The peer review history for this article is available at: https://publons.com/publon/10.1108/OIR-11-2020-0494

Parents whose children have undergone an autism assessment often describe the process as extremely stressful. This affects how parents engage with services post-diagnosis, meaning less likelihood of using subsequent service support despite struggling to cope. Since parents already report many barriers to accessing services, e.g. long waiting lists, lack of co-ordination and limited resources (Sapiets et al. 2023), negative experiences during assessment should not pose another potential barrier to engagement. This study aimed to address how families’ needs can be better met during the assessment process.

In this qualitative study, the author conducted semi-structured interviews with 11 parents whose child had undergone an autism assessment in the last five years. Thematic analysis determined key themes.

The six themes were: clarity and communication, access to support and resources, aftercare, recognition of parent concerns, personalisation of the assessment process and concerns around the use of personal protective equipment/online assessments. These themes led to criteria to assess the quality of autism assessment services in line with parent perspectives.

These parent-informed criteria could facilitate the consideration of parents’ views into service evaluations of autism assessment services across the UK.

Previous research indicates that the autism assessment experience is often extremely stressful and overwhelming for families (Crane et al., 2016). Despite this, guidance to improve autism services rarely prioritises the opinions and experiences of service-users and their families. The criteria presented here were derived from themes identified by interviewing parents on their experiences of the autism assessment process, thus shifting the focus onto service-users.

The purpose of this paper is to recognise communication as a central challenge between autistic and non-autistic individuals as the autistic voice is not silent, but lacks involvement at any level other than that of the observed participant (Milton and Bracher, 2013; NAS and Ask Autism, 2014; Parsons et al., 2009). The main research question, therefore, explores data to understand how some autistic individuals conceptualise their experiences.

The research design, informed by autistic people, used a flexible methodology to accommodate their communication preferences. Methods contextualised autistic narratives regarding support requirements and service provision and located power within these, acknowledging autistic individuals as the expert “insider”. This is critical in tackling access to services and social barriers to inclusion impacting negatively on well-being. Visual and written data were gathered using collage and narrative diary methods, and presented and analysed as three individual case studies (anonymised as Michael, Sophie and Peter) and as a meta-analysis providing a broad picture of themes.

Findings showed similarities and differences in a number of key areas, so highlighting the importance of the smaller narratives within the broad picture of autism.

This study’s key contribution to autism research is that it blends IPA, narrative analysis and discourse analysis with distinct sites of analysis (narrative process, images of autism, audiencing, turning points and discourse). Furthermore, the flexible methodology employed facilitates inclusion of autistic voices by embracing their diverse communication preferences.

The purpose of this investigation is to gain insight into parents' perceptions of benefits vs burdens (value) of educational and healthcare service received for their child with ASD. Parents are the main integrators of long-term educational and healthcare service for their child with ASD.

Design/methodology/approach included (1) a sentiment analysis of discussion forum posts from an autism message board using a rule-based sentiment analysis tool that is specifically attuned to sentiments expressed in social media and (2) a qualitative content analysis of one-on-one interviews with parents of children diagnosed with ASD, complemented with interviews with experienced educators and clinicians.

Findings reveal the link between customized service integration and long-term benefits. Both parents and service providers emphasize the need to integrate healthcare and educational service to create holistic long-term care for a child with ASD. Parents highlight the benefits of varied services, but availability or cost are burdens if the service is not publicly provided, or covered by insurance. Service providers' lack of experience with ASD and people's ignorance of the challenges of ASD are burdens.

Ensuring health outcomes for a child with ASD requires an integrated service system and long-term, customer-centric service process because the scope of service covers the child's entire childhood. Customized educational and healthcare service must be allocated and budgeted early in order to reach the goal of a satisfactory service output for each child.

This is the first service research to focus on parents' challenges with obtaining services for their child with ASD. This paper provides service researchers and managers insight into parents' perceptions of educational and healthcare service value (i.e. benefits vs. burdens) received for their child with ASD. These insights into customer-centric perceptions of value may be useful to research and may help service providers to innovate and provide integrated service directly to parents, or indirectly to service providers, who serve children with ASD.

Social media use in autistic people has been identified as a potential avenue for less pressured social contact. Given shifts towards online socialisation, this study aims to systematically review the available literature on how autistic people experience and use social media.

A systematic review was carried out using the preferred reporting items for systematic reviews and meta-analyses system, with relevant literature reviewed and synthesised using a narrative approach. Inclusion criteria included adults and/or adolescents as the sole sample, a focus on autism and social media use as the sole/main topic.

A total of 1,278 research studies were initially identified; following screening, 15 papers were reviewed. Studies demonstrated some support for the positive role social media can play and presented its use as a smart adaptation for the challenges of neurotypical socialising. For autistic people, social media may provide a balance between meeting the need to be connected to people without the pressure of managing aspects, such as tone of voice or body language.

Most studies were questionnaire-based with substantial threats to validity. Samples were self-selecting, with autism status not always confirmed. Individual studies used a broad approach to the definition of social media, including online gaming and other online activities, precluding firm conclusions being made.

There may be a Goldilocks “just right” level of social media contact that could maximise connectedness to others without impacting negatively on mental health, offline relationships and activities of daily living.

This paper presents a novel account of research from case studies and larger scale questionnaire studies.

Autistic women and girls have received comparatively less attention within clinical practice and research. Research suggests women tend to be diagnosed later than men, and are more likely to experience misdiagnosis.

This paper aims to report a narrative literature review that examines research on the presentation, recognition, and diagnosis of autistic women and girls.

Findings suggest that autistic females present differently to males and highlight low recognition of the female presentation of autism among the general public, in social spheres, educational, clinical and forensic settings. This lack of recognition appears to affect the likelihood of females being referred for diagnosis, the reliability of diagnostic assessments and subsequent access to support.

Recommendations for clinical practice focus on initiatives to increase awareness of the female presentation of autism, improving the diagnostic process for females, increasing female representation within autism training and for future research to support these goals.

This study aims to investigate the psychometric properties of the social communication questionnaire (SCQ) in Iran by identifying children with autism spectrum disorder (ASD) who had Persian-speaking parents.

A case–control study was performed from June to August 2021 in Hamadan, Iran. The case group consisted of children who were examined by clinicians who used a coding scheme based on the DSM-V criteria for ASD by a psychiatrist. The control group consisted of non-ASD children who were asked to participate in the study. This study conducted the reliability, content and face validity to evaluate the psychometric properties of the tool. In the first step, Kaiser–Meyer–Olkin and Bartlett’s test were used to determine sampling adequacy and appropriateness of correlation matrix. In the second step, the exploratory factor analysis approach was used. The method of extracting the factors is done by using the varimax rotation method and selecting the number of factors using an eigenvalue and scree plot. Statistical analysis was performed using Software Package for Social Sciences 21 with the statistical significance set at level less than 0.05.

The quantitative content validity analysis revealed that the mean of content validity ratio and content validity index were 0.92 and 0.91, respectively. Mean score ± standard deviation in the two groups of ASD and control were 14.23 ± 3.84 and 7.83 ± 4.80, respectively. With cut-off point >12.5, sensitivity, specificity and misclassification error values were 73.33%, 80.0% and 23%, respectively.

The results showed that the internal consistency of the SCQ is desirable. Also, the internal consistency of its five subscales was obtained between 0.700 and 0.87. The findings showed that SCQ questionnaire is highly reliable in reciprocal social interaction (Factor 1) and the total score, while other factors were relatively reliable.

To the best of the authors’ knowledge, this is the first paper on psychometric properties of SCQ in ASD children in Iran.

The purpose of this paper is to present new empirical data on the experiences of 120 teachers and professionals working with autistic children and young people across different settings in Poland where autism research on inclusive education is scarce. It explores the relationship of inclusive education to the social and neurodiversity models of disability. It makes evidence-based recommendations for good practice and modelling and evaluating future education and inclusion practices.

It uses a survey approach involving a combination of qualitative and quantitative data collection and embeds practical findings in theory, including the relationship of inclusive education to the social and neurodiversity models of disability.

The findings include the barriers teachers and related professionals experience in facilitating inclusive teaching and learning and how the following would be useful to autistic students: opportunities to exercise responsibilities and take leadership roles; social as well as educational inclusion; provision of a safe environment; regular funded autism training in work time; and appropriate use of additional classroom teachers.

A survey-based approach has limitations.

Opportunities to exercise responsibilities and take leadership roles; social as well as educational inclusion; provision of a safe environment; regular funded autism training in work time; and appropriate use of additional classroom teachers.

This study can be useful in the development of social skills and communication, social and educational inclusion.

Polish teachers’ attitudes, experiences and support needs, including some previously overlooked issues, are related to the broader international context beyond Poland. Analysis of the findings is used to derive evidence-based recommendations for good practice and modelling, and evaluating future education and inclusion practices.