191 research outputs found
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The Sensory Perception Quotient (SPQ): development and validation of a new sensory questionnaire for adults with and without autism
Background
Questionnaire-based studies suggest atypical sensory perception in over 90% of individuals with autism spectrum conditions (ASC). Sensory questionnaire-based studies in ASC mainly record parental reports of their child’s sensory experience; less is known about sensory reactivity in adults with ASC. Given the DSM-5 criteria for ASC now include sensory reactivity, there is a need for an adult questionnaire investigating basic sensory functioning. We aimed to develop and validate the Sensory Perception Quotient (SPQ), which assesses basic sensory hyper- and hyposensitivity across all five modalities.
Methods
A total of 359 adults with (n = 196) and without (n = 163) ASC were asked to fill in the SPQ, the Sensory Over-Responsivity Inventory (SensOR) and the Autism-Spectrum Quotient (AQ) online.
Results
Adults with ASC reported more sensory hypersensitivity on the SPQ compared to controls (P < .001). SPQ scores were correlated with AQ scores both across groups (r = .-38) and within the ASC (r = -.18) and control groups (r = -.15). Principal component analyses conducted separately in both groups indicated that one factor comprising 35 items consistently assesses sensory hypersensitivity. The SPQ showed high internal consistency for both the total SPQ (Cronbach’s alpha = .92) and the reduced 35-item version (alpha = .93). The SPQ was significantly correlated with the SensOR across groups (r = -.46) and within the ASC (r = -.49) and control group (r = -.21).
Conclusions
The SPQ shows good internal consistency and concurrent validity and differentiates between adults with and without ASC. Adults with ASC report more sensitivity to sensory stimuli on the SPQ. Finally, greater sensory sensitivity is associated with more autistic traits. The SPQ provides a new tool to measure individual differences on this dimension
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Genetic and environmental covariation between autistic traits and behavioral problems
Objective: To examine the overlap between autistic traits and other behavioral problems in a general population sample, and explore the extent to which this overlap is due to genetic or environmental factors. Method: Youth Self Report (YSR) data were collected in a general population sample of 424 twin pairs at 18 years of age, and their non twin siblings. In 197 of these twin families, self-report ratings on the Autism-spectrum Quotient (AQ) were collected. Results: Stepwise backward regression analyses revealed that of all 8 YSR syndrome scales, the Withdrawn Behavior (WB) and Social Problems (SOC) scale were the most important predictors of AQ scores, and together with sex, explained 23% of the variance in AQ scores. Genetic structural equation modeling showed that the overlap between AQ and WB and SOC was mainly due to genetic effects. About half of the genetic variance in AQ scores was specific to the AQ, with the remaining half shared with genetic variance in WB and SOC. Conclusions: Endorsement of autistic traits in a general population sample is associated with social and withdrawn behavioral problems and these problems partly share a common genetic etiology with autistic traits. However, most of the variance in AQ scores remains unexplained by YSR scores, and half of the genetic variance in AQ is unshared with WB and SOC. These results indicate that autistic traits have specific characteristics that are substantially genetically independent from other common but related behavioral domains such as social problems and withdrawn behavior
Caregiver-centred empowerment for families raising autistic children: a qualitative case study from Argentina
Autistic children and their caregivers in Argentina often lack access to information, resources and evidence-based interventions. Caregiver empowerment may help support families to uphold their child’s rights and access suitable education and support. This study aimed to examine the perceptions on empowerment of caregivers of autistic children in Argentina. This was a phenomenological, qualitative study. We conducted 32 semi-structured individual interviews remotely. Participants included caregivers, health service providers, non-governmental organisation representatives, special education teachers and policy representatives. Data were analysed thematically. We developed three main themes: Caregiver agency: from intuitive coping strategies to entrepreneurship; ‘I had to cut down on therapy’: Economic instability and inequality affecting service access; and Equipping caregivers to be empowered. Both caregivers and professionals talked about the contribution of socio-economic inequalities to caregivers’ sense of disempowerment. Caregivers identified coping strategies and discussed their experiences with advocacy. They expressed that in-person and online support groups have an empowering effect. Based on participant views, strategies supporting caregiver empowerment may involve: interventions are co-designed by professionals and caregivers; focusing on caregiver mental health; and addressing the profound impact of poverty on the quality of life of families
Heritability of testosterone levels in 12-year-old twins and its relation to pubertal development
The aim of this study was to estimate the heritability of variation in testosterone levels in 12-year-old children, and to explore the overlap in genetic and environmental influences on circulating testosterone levels and androgen dependent pubertal development. Midday salivary testosterone samples were collected on two consecutive days in a sample of 183 unselected twin pairs. Androgen induced pubertal development was assessed using self report Tanner scales of pubic hair development (boys and girls) and genital development (boys). A significant contribution of genetic effects to the variance in testosterone levels was found.
Heritability was approximately 50% in both boys and girls. The remaining proportion of the variance in testosterone levels could be explained by non-shared environmental influences. The relatively high correlation between testosterone levels of opposite sex dizygotic twins suggests that sex differences in genes influencing variation in testosterone levels have not yet developed in pre- and early puberty. Variance in pubertal development was explained by a large genetic component, moderate shared environmental influences, and a small non-shared environmental effect. Testosterone levels correlated moderately (r = .31) with pubertal development; the covariance between testosterone levels and pubertal development was entirely accounted for by genetic influences
Stakeholder experiences, attitudes and perspectives on inclusive education for children with developmental disabilities in sub-Saharan Africa:A systematic review of qualitative studies
In sub-Saharan Africa, there are few services for children with developmental disabilities such as autism and intellectual disability. One way to support these children is to include them in mainstream schools. However, currently, African children with developmental disabilities are often excluded from mainstream education opportunities. People involved (e.g. teachers, families and children) can offer information on factors that could ease or interfere with inclusion. This article discusses the findings of published studies that explored the views of relevant groups on including children with developmental disabilities in mainstream schools in sub-Saharan Africa. We systematically searched the literature and identified 32 relevant articles from seven countries in sub-Saharan Africa. We found that unclear policies and insufficient training, resources and support for teachers often blocked the implementation of inclusive education. Factors in favour of inclusive education were the commitment of many teachers to include pupils with developmental disabilities and the work of non-governmental organisations (NGOs), which provided resources and training. This review suggests that motivated teachers should be provided with appropriate training, resources and support for inclusive education, directly and by promoting the work of NGOs
Conceptualising the empowerment of caregivers raising children with developmental disabilities in Ethiopia:a qualitative study
BACKGROUND: Caregivers of children with developmental disabilities (DDs) in Ethiopia experience stigma and exclusion. Due to limited existing services and substantial barriers to accessing care, they often lack support. Caregiver empowerment could help address injustices that hinder their capacity to support their child as they would like. The aim of this study was to explore the meaning and potential role of empowerment for caregivers raising a child with a DD and how empowerment was situated in relation to other priorities in service development.METHODS: This was a qualitative phenomenological study. Semi-structured interviews were conducted in Amharic and English with caregivers of children with a DD (n = 15), clinicians (n = 11), community-based health extension workers (n = 5), representatives of non-governmental organisations working with families with DDs (n = 17), and representatives of local authorities in health, education, and social care (n = 15). Data were analysed thematically.RESULTS: Three main themes were developed: "Barriers to exercising caregivers' agency"; "Whose decision is it to initiate empowerment?"; and "Supporting caregivers through support groups". Caregiver capacity to do what they thought was best for their child was undermined by poverty, a sense of hopelessness, experience of domestic abuse and multiple burdens experienced by those who were single mothers. Caregivers were nonetheless active in seeking to bring about change for their children. Caregivers and professionals considered support groups to be instrumental in facilitating empowerment. Participants reflected that caregiver-focused interventions could contribute to increasing caregivers' capacity to exercise their agency. A tension existed between a focus on individualistic notions of empowerment from some professionals compared to a focus on recognising expertise by experience identified as vital by caregivers. Power dynamics in the context of external funding of empowerment programmes could paradoxically disempower.CONCLUSION: Caregivers of children with DDs in Ethiopia are disempowered through poverty, stigma, and poor access to information and resources. Shifting power to caregivers and increasing their access to opportunities should be done on their own terms and in response to their prioritised needs
Conceptualising the empowerment of caregivers raising children with developmental disabilities in Ethiopia: a qualitative study
Background Caregivers of children with developmental disabilities (DDs) in Ethiopia experience stigma and exclusion. Due to limited existing services and substantial barriers to accessing care, they often lack support. Caregiver empowerment could help address injustices that hinder their capacity to support their child as they would like. The aim of this study was to explore the meaning and potential role of empowerment for caregivers raising a child with a DD and how empowerment was situated in relation to other priorities in service development. Methods This was a qualitative phenomenological study. Semi-structured interviews were conducted in Amharic and English with caregivers of children with a DD (n = 15), clinicians (n = 11), community-based health extension workers (n = 5), representatives of non-governmental organisations working with families with DDs (n = 17), and representatives of local authorities in health, education, and social care (n = 15). Data were analysed thematically. Results Three main themes were developed: “Barriers to exercising caregivers’ agency”; “Whose decision is it to initiate empowerment?”; and “Supporting caregivers through support groups”. Caregiver capacity to do what they thought was best for their child was undermined by poverty, a sense of hopelessness, experience of domestic abuse and multiple burdens experienced by those who were single mothers. Caregivers were nonetheless active in seeking to bring about change for their children. Caregivers and professionals considered support groups to be instrumental in facilitating empowerment. Participants reflected that caregiver-focused interventions could contribute to increasing caregivers’ capacity to exercise their agency. A tension existed between a focus on individualistic notions of empowerment from some professionals compared to a focus on recognising expertise by experience identified as vital by caregivers. Power dynamics in the context of external funding of empowerment programmes could paradoxically disempower. Conclusion Caregivers of children with DDs in Ethiopia are disempowered through poverty, stigma, and poor access to information and resources. Shifting power to caregivers and increasing their access to opportunities should be done on their own terms and in response to their prioritised needs
Exploring contextual adaptations in caregiver interventions for families raising children with developmental disabilities
There are increasing efforts to scale up services globally for families raising children with developmental disabilities (DDs). Existing interventions, often developed in high income, Western settings, need substantial adaptation before they can be implemented in different contexts.The aim of this study was to explore perspectives on the role that context plays in the adaptation and implementation of interventions targeting caregivers of children with DDs across settings. The study question was applied to the Caregiver Skills Training (CST) programme of the World Health Organization specifically, as well as to stakeholder experiences with caregiver interventions more broadly. Two focus group discussions (FGDs; n=15 participants) and 25 individual semi-structured interviews were conducted. Participants were caregivers of children with DDs and professionals involved in adapting or implementing the CST across five continents and different income settings. Data were analysed thematically.Four main themes were developed: 1) Setting the scene for adaptations; 2) Integrating an intervention into local public services; 3) Understanding the reality of caregivers; 4) Challenges of sustaining an intervention. Informants thought that contextual adaptations were key for the intervention to fit in locally, even more so than cultural factors. The socio-economic context of caregivers, including poverty, was highlighted as heavily affecting service access and engagement with the intervention. Competing health priorities other than DDs, financial constraints, and management of long-term collaborations were identified as barriers. This study validates the notion that attention to contextual factors is an essential part of the adaptation of caregiver interventions for children with DDs, by providing perspectives from different geographical regions. We recommend a stronger policy and research focus on contextual adaptations of interventions and addressing unmet socio-economic needs of caregivers.
Ethiopian community health workers’ beliefs and attitudes towards children with autism: impact of a brief training intervention
There is a severe shortage of services for children with autism in Ethiopia; access to services is further impeded by negative beliefs and stigmatising attitudes towards affected children and their families. To increase access to services, care provision is decentralised through task-shifted care by community health extension workers (HEWs).
This study aimed to examine the impact of a brief training (Health Education and Training; HEAT) for Ethiopian rural HEWs and comprised three groups: i) HEWs who completed a basic mental health training module (HEAT group, N=104); ii) HEWs who received enhanced training, comprising basic HEAT as well as video-based training on developmental disorders and a mental health pocket guide (HEAT+ group, N=97); iii) HEWs untrained in mental health (N=108). All participants completed a questionnaire assessing beliefs and social distance towards children with autism. Both the HEAT and HEAT+ group showed fewer negative beliefs and decreased social distance towards children with autism compared to the untrained HEW group, with the HEAT+ group outperforming the HEAT group.
However, HEAT+ trained HEWs were less likely to have positive expectations about children with autism than untrained HEWs. These findings have relevance for task-sharing and scale up of autism services in low-resource settings worldwide
Quotas, and Anti-discrimination Policies Relating to Autism in the EU: Scoping Review and Policy Mapping in Germany, France, Netherlands, United Kingdom, Slovakia, Poland, and Romania.
The low employment rates of persons with Autism Spectrum Conditions in the European Union (EU) are partly due to discrimination. Member States have taken different approaches to increase the employment rate in the recent decades, including quota and anti-discrimination legislation, however, the implications for people with autism are unknown. The purpose of this scoping review was to provide a comprehensive overview of the history of these employment policies, from seven EU Member States (Germany, France, the Netherlands, the United Kingdom [prior to exit], Slovakia, Poland, and Romania), exploring the interdependence on international and EU policies, using a path dependency analysis. The results indicate that internationally a shift in focus has taken place in the direction of anti-discrimination law, though employment quotas remained in place in six out of the seven Member States as a means to address employment of people with disability in combination with the new anti-discrimination laws. LAY SUMMARY: Discrimination is partially responsible for the low employment of people with autism. Several approaches have been taken in recent years, such as anti-discrimination laws and setting a mandatory number of people with disabilities that need to be employed. This study finds that, internationally and in the European Union, the focus was initially on the use of quotas and gradually moved to anti-discrimination, with both being used simultaneously. Autism Res 2020, 13: 1397-1417. © 2020 The Authors. Autism Research published by International Society for Autism Research published by Wiley Periodicals, Inc
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