Rosa Anna Hoekstra

Rosa Anna Hoekstra
King's College London | KCL · Department of Psychology

MSc, PhD

About

116
Publications
63,347
Reads
How we measure 'reads'
A 'read' is counted each time someone views a publication summary (such as the title, abstract, and list of authors), clicks on a figure, or views or downloads the full-text. Learn more
6,066
Citations

Publications

Publications (116)
Article
Full-text available
Despite an estimated population of 10 million autistic individuals, there is still a significant lack of research on autistic adults in China. This study aimed to investigate the extent and factors influencing community integration (employment, independent living and friendship) and life satisfaction among young autistic adults in China, and compar...
Article
Full-text available
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 A...
Article
African children with developmental disabilities (DD), including autism and intellectual disability, are often excluded from mainstream schools. We systematically reviewed 28 qualitative studies conducted in Africa, aiming to synthesize stakeholders’ perspectives on inclusive teaching strategies for supporting children with DD in mainstream classes...
Article
Full-text available
Background Most children with developmental disabilities (DD) live in low- and middle-income countries, but access to services is limited, impacting their ability to thrive. Pilot study findings of the World Health Organization’s Caregiver Skills Training (WHO CST) intervention, which equips caregivers with strategies to facilitate learning and ada...
Preprint
Full-text available
Introduction Globally, families with children with developmental disabilities (DDs) may experience several challenges, including social isolation, stigma, and poverty especially in low-income settings in Africa. Most children with DDs in Africa remain unidentified and receive no formal support. Caregiver interventions focusing on education and trai...
Article
Full-text available
Children with developmental disabilities (DD) including intellectual disability and autism, experience exclusion from social life and education in Ethiopia. Including children with DD in mainstream inclusive classes has potential to expand access to education and uphold their right to learn alongside typically developing peers. However, inadequate...
Preprint
Central sensitivity syndromes (CSS) are a group of conditions thought to include an underlying sensitisation of the central nervous system. Evidence suggests autistic adults may be more vulnerable to developing CSS, and that autistic traits, sensory sensitivity and anxiety all contribute to this association. This study aimed to explore the relation...
Article
Full-text available
Background Many autistic people, particularly women, do not receive an autism diagnosis until adulthood, delaying their access to timely support and clinical care. One possible explanation is that autistic traits may initially be misinterpreted as symptoms of other psychiatric conditions, leading some individuals to experience misdiagnosis of other...
Article
Full-text available
Most children with developmental disabilities (DD), such as intellectual disabilities and autism, live in low- and middle-income countries (LMICs), where services are usually limited. Various governmental, non-governmental and research organisations in LMICs have developed awareness-raising campaigns and training and education resources on DD in ch...
Preprint
Central sensitivity syndromes (CSS) are a group of related conditions thought to include an underlying sensitisation of the central nervous system. Evidence suggests autistic adults experience more physical health symptoms than the general population and could be more vulnerable to developing CSS. This study examined CSS diagnoses and symptoms in a...
Article
Full-text available
Autism and other developmental disabilities are common in low- and middle-income countries. The World Health Organization developed the caregiver skills training programme to address the needs of families having children with developmental disabilities globally. This study explored the acceptability and feasibility of the caregiver skills training...
Article
Full-text available
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 o...
Article
Background: While most autism research is conducted in White Western samples, culture may affect perceptions and reporting of autistic traits. We explored how UK-based British and Egyptian/Sudanese communities perceive autism features. Methods and procedures: Nineteen participants self-identifying as British and 20 as Egyptian/Sudanese participa...
Preprint
African children with developmental disabilities (DD), including autism and intellectual disability, are often excluded from mainstream schools. We systematically reviewed 28 qualitative studies conducted in sub-Saharan Africa, with the aim to synthesise stakeholders’ perspectives on inclusive teaching strategies for supporting children with DD in...
Preprint
Most children with developmental disabilities (DD), such as intellectual disabilities and autism, live in low- and middle-income countries (LMICs), where services are usually limited. Various governmental, non-governmental and research organisations in LMICs have developed awareness-raising campaigns and training and education resources on DD in ch...
Preprint
Full-text available
Most children with developmental disabilities (DD), such as intellectual disabilities and autism, live in low- and middle-income countries (LMICs), where services are usually limited. Various governmental, non-governmental and research organisations in LMICs have developed awareness-raising campaigns and training and education resources on DD in ch...
Article
Full-text available
The experiences of parents raising children with developmental disabilities have been widely researched, although most of this research comes from Western, high-income countries. In comparison, little is known about the lived experiences of parents of children with developmental disabilities in low- and middle-income countries and in Africa in part...
Article
Full-text available
Inclusive education is a key strategy in addressing the needs of children with autism and other developmental disabilities in sub-Saharan Africa, who rarely access specialist care or quality education. We aimed to systematically review qualitative research on stakeholder experiences, attitudes and perspectives on inclusive education for pupils with...
Article
Full-text available
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...
Preprint
Background: While most autism research is conducted in White Western samples, culture may affect perceptions and reporting of autistic traits. We explored how UK-based British and Egyptian/Sudanese communities perceive autism features. Methods and Procedures: Nineteen participants self-identifying as British and 20 as Egyptian/Sudanese participated...
Article
Full-text available
Introduction Empowerment of families raising children with developmental disabilities (DDs) is essential to achieving rights‐based service development. Methods In this qualitative study, we investigated stakeholder perceptions on the role of advocacy and empowerment in developing caregiver interventions for families of children with DDs in a globa...
Article
Full-text available
Background Autistic adults, particularly women, are more likely to experience chronic ill health than the general population. Central sensitivity syndromes (CSS) are a group of related conditions that are thought to include an underlying sensitisation of the central nervous system; heightened sensory sensitivity is a common feature. Anecdotal evide...
Article
Full-text available
The likelihood of a newborn child dying before their fifth birthday (under-5 mortality rate) is universally acknowledged as a reflection of the social, economic, health, and environmental conditions in which children (and the rest of society) live, but little is known about the likelihood of a newborn child having a lifelong disability before their...
Article
Full-text available
Background Neurodevelopmental disorders (NDDs) are conditions affecting a child's cognitive, behavioural, and emotional development. Appropriate and validated outcome measures for use in children with NDDs in sub-Saharan Africa are scarce. The aim of this study was to validate the Communication Profile Adapted (CP-A), a measure developed in East Af...
Preprint
Development of including education (IE) is a key strategy in addressing the needs of children with autism and other developmental disabilities (DD) in sub-Saharan Africa, who rarely access specialist care or quality education. We aimed to systematically review qualitative research on stakeholder experiences, attitudes and perspectives on IE for pup...
Article
Full-text available
Although most children with autism and other neurodevelopmental disorders live in low- and middle-income countries, assessment tools are lacking in these settings. This study aims to culturally adapt and validate two questionnaires for use in Ethiopia: the Autism Treatment Evaluation Checklist and the Pediatric Quality of Life Inventory™ Family Imp...
Article
Full-text available
Autism spectrum disorders are diagnosed globally, but recognition, interpretation and reporting may vary across cultures. To compare autism across cultures it is important to investigate whether the tools used are conceptually equivalent across cultures. This study evaluated the factor structure of the parent-reported Autism Spectrum Quotient Short...
Article
This scoping review synthesises previous research on caregivers' experiences and perspectives of caring for a child with a mental health or neurodevelopmental condition while living in low-income and middle-income countries (LMICs). 35 studies done across 15 LMICs were included in this Series paper. Most studies were done in the Africa region. Chil...
Preprint
Full-text available
Background Autistic adults, particularly women, are more likely to experience chronic ill health than the general population. Central sensitivity syndromes (CSS) are a group of related conditions that are thought to include an underlying sensitisation of the central nervous system; heightened sensory sensitivity is a common feature. Anecdotal evide...
Poster
Full-text available
Background: Most autism research is conducted in White participants in high-income Western countries. A few studies have reported that culture influences autism detection and interpretation of symptoms, but these have mainly been conducted in families of children with autism. However, views held in families who have no previous experience of raisin...
Article
Full-text available
Background The social domain of autism has been studied in depth, but the relationship between the non-social traits of autism has received less attention. The Diagnostic and Statistical Manual of Mental Disorders (DSM-5) outlines four criteria that make up the non-social domain including repetitive motor movements, insistence on sameness, restrict...
Article
Full-text available
Sensory symptoms were recently added to the diagnostic criteria of autism spectrum disorder and may be a mechanism underlying the broad phenotype of autism spectrum disorder. To measure sensory symptoms based on perceptual rather than affective, regulative, or attention components, the Sensory Perception Quotient (SPQ) measuring five modalities of...
Article
Full-text available
Autism spectrum disorder and anxiety are highly comorbid conditions. Understanding the underlying traits of anxiety in autism spectrum disorder is crucial to prevent and treat it efficiently. Hence, this study determined whether social communication difficulties or restricted repetitive behaviors are stronger risk factors for anxiety symptoms in au...
Article
Full-text available
BACKGROUND: Estimates of children and adolescents with disabilities worldwide are needed to abstract inform global intervention under the disability-inclusive provisions of the Sustainable Development Goals. We sought to update the most widely reported estimate of 93 million children,15 years with disabilities from the Global Burden of Disease Stud...
Article
Full-text available
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 p...
Article
Full-text available
Although stigma related to developmental disorders (DD) has been associated with poor mental health among caregivers, an in-depth understanding of factors that influence internalisation of stigma by caregivers is missing. The aim of our study was to explore perceptions and experiences of stigma among parents of children with DD in Ethiopia and exam...
Article
Full-text available
Autism research is heavily skewed toward western high‐income countries. Culturally appropriate screening and diagnostic instruments for autism are lacking in most low‐ and middle‐income settings where the majority of the global autism population lives. To date, a clear overview of the possible cultural and contextual factors that may affect the pro...
Article
Full-text available
The World Health Organization’s Caregiver Skills Training programme for children with developmental disorders or delays teaches caregivers strategies to help them support their child’s development. Ethiopia has a severe lack of services for children with developmental disorders or delays. This study explored the perspectives of Ethiopian caregivers...
Article
Full-text available
Introduction: In recent years, the universal right to education has been emphasised by the Universal Declaration on Human Rights and the Convention on the Rights of Persons with Disabilities. In this paper, we mapped policies relevant to special education needs and parental involvement of children with autism at an international level and in the N...
Preprint
Full-text available
Autism research is heavily skewed towards western high-income countries. Culturally appropriate screening and diagnostic instruments for autism are lacking in most low- and middle-income settings where the majority of the global autism population lives. To date, a clear overview of the possible cultural and contextual factors that may affect the pr...
Article
Full-text available
Background: There is a global need for brief screening instruments that can identify key indicators for autism to support frontline professionals in their referral decision-making. Although a universal set of conditions, there may be subtle differences in expression, identification and reporting of autistic traits across cultures. In order to asses...
Article
Full-text available
Background: There is a global need for brief screening instruments that can identify key indicators for autism to support frontline professionals in their referral decision-making. Although a universal set of conditions, there may be subtle differences in expression, identification and reporting of autistic traits across cultures. In order to asse...
Article
Full-text available
Our current understanding of autism and other developmental disorders is primarily based on research conducted in high-income countries, predominantly in North America and Europe. Even within high-income countries, White participants are overrepresented in autism research. There is now increased recognition that a more global and diverse research r...
Article
Full-text available
Lay summary: Autistic adults reported having special interests in a range of topics, including computers, music, autism, nature and gardening. Special interests were associated with a number of positive outcomes for autistic adults. They were also related to subjective wellbeing and satisfaction across specific life domains including social contac...
Chapter
Toen autisme voor het eerst werd beschreven, dacht men te maken te hebben met een zeldzame oftewel laagprevalente aandoening.
Article
Full-text available
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. This study ai...
Article
Full-text available
Research has highlighted potential differences in the phenotypic and clinical presentation of autism spectrum conditions across sex. Furthermore, the measures utilised to evaluate autism spectrum conditions may be biased towards the male autism phenotype. It is important to determine whether these instruments measure the autism phenotype consistent...
Article
Background: Autism Spectrum Disorders (ASD) are highly heritable, but the exact etiological mechanisms underlying the condition are still unclear. Methods: Using a multiple rater twin design in a large sample of general population preschool twins, this study aimed to (a) estimate the contribution of genetic and environmental factors to autistic...
Poster
Full-text available
Autim Spectrun Disorders prevalence in a large european sample
Article
Full-text available
Background Community health workers can help to address the substantial unmet need for child mental health care in low and middle income countries. However, little is known about their training needs for this potential role. The aim of this study was to examine training needs and perspectives of community health extension workers (HEWs) in relation...
Article
Full-text available
Background Little has been reported about service provision for children with autism in low-income countries. This study explored the current service provision for children with autism and their families in Ethiopia, the existing challenges and urgent needs, and stakeholders’ views on the best approaches to further develop services. Methods A situ...
Article
Full-text available
Background Understanding the perspectives of caregivers of children with developmental disorders living in low-income countries is important to inform intervention programmes. The purpose of this study was to examine the stigma experiences, explanatory models, unmet needs, preferred interventions and coping mechanisms of caregivers of children with...
Article
Clinical observations and first person accounts of living with autism suggest that individuals with autism are highly motivated to engage in special interests, and that these interests remain important throughout life. Previous research assessing special interests has mainly focused on parental reports of children with autism spectrum conditions (A...
Article
Full-text available
Most research into the epidemiology, etiology, clinical manifestations, diagnosis and treatment of autism is based on studies in high income countries. Moreover, within high income countries, individuals of high socioeconomic status are disproportionately represented among participants in autism research. Corresponding disparities in access to auti...
Article
Background Autism research has previously focused on either identifying a latent dimension or searching for subgroups. Research assessing the concurrently categorical and dimensional nature of autism is needed.AimsTo investigate the latent structure of autism and identify meaningful subgroups in a sample spanning the full spectrum of genetic vulner...
Article
Full-text available
Autism spectrum disorder (ASD) and attention deficit/hyperactivity disorder (ADHD) often occur together. To obtain more insight in potential causes for the co-occurrence, this study examined the genetic and environmental etiology of the association between specific ASD and ADHD disorder dimensions. Self-reported data on ASD dimensions social and co...
Article
Full-text available
Background Empathy is a vital component for social understanding involving the ability to recognise emotion (cognitive empathy) and provide an appropriate affective response (emotional empathy). Autism spectrum conditions have been described as disorders of empathy. First-degree relatives may show some mild traits of the autism spectrum, the broade...
Conference Paper
Full-text available
Background: In rural Ethiopia basic health services are provided by 39,000 community-based health extension workers (HEWs) serving a population of 73 million. Most HEWs only received basic health training not encompassing mental health. Recently a first cohort of HEWs upgraded their training using the Health Education And Training (HEAT) programme...
Conference Paper
Background: Improving access to health care for people with autism in Ethiopia is highly dependent on the awareness and attitudes of frontline community-based health extension workers (HEWs). The Ethiopian Federal Ministry of Health is upgrading the skills of HEWs through the Health Education And Training (HEAT) programme in collaboration with The...
Article
Full-text available
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 senso...
Chapter
Researchers continue to pursue a better understanding of the symptoms, comorbidities, and causes of autism spectrum disorders. In this chapter, we review the twin studies of autism spectrum disorders (ASDs) and autistic traits that have contributed to this endeavor. These twin studies have reported on the heritability of ASDs and autistic traits in...
Article
Full-text available
The search for genes involved in autism spectrum conditions (ASC) may have been hindered by the assumption that the different symptoms that define the condition can be attributed to the same causal mechanism. Instead the social and nonsocial aspects of ASC may have distinct causes at genetic, cognitive, and neural levels. It has been posited that t...