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Publications (29)
In low-resource settings, non-profit organisations play an essential role in providing services and support for families with young children with autism. However, resource constraints limit access to quality training in evidence-based interventions. Web-based training may help fill this gap. This study examined the feasibility, acceptability and ap...
Background
Tuberous sclerosis complex (TSC) is associated with a wide range of physical manifestations for which international clinical recommendations for diagnosis and management have been established. TSC is, however, also associated with a wide range of TSC-Associated Neuropsychiatric Disorders (TAND) that are typically under-identified and und...
Background:
Tuberous sclerosis complex-associated neuropsychiatric disorders (TAND) are often present but underidentified and undertreated in individuals with tuberous sclerosis complex (TSC). The clinician-completed TAND-Lifetime Checklist (TAND-L) was developed to address this identification and treatment gap. Stakeholder engagement identified t...
Caring for children with developmental delays or disabilities places significant stress on caregivers, which is often exacerbated in low-resource settings. The World Health Organization developed a caregiver skills training for families of children with developmental delays or disabilities, which includes a three-session caregiver well-being module...
Introduction
Tuberous Sclerosis Complex (TSC) is a multi-system genetic disorder with various TSC-Associated Neuropsychiatric Disorders (TAND) that significantly impact the mental health and wellbeing of individuals with TSC and their caregivers. TAND represents the number one concern to families worldwide, yet is highly under-identified and under-...
Background
Tuberous sclerosis complex (TSC)–associated neuropsychiatric disorders (TAND) is an umbrella term for the behavioural, psychiatric, intellectual, academic, neuropsychological and psychosocial manifestations of TSC. Although TAND affects 90% of individuals with TSC during their lifetime, these manifestations are relatively under-assessed,...
This is the preprint of our chapter in the book 'STARTING AT THE BEGINNING: LAYING THE FOUNDATION FOR LIFE'. In this chapter we outline a range of challenges and opportunities for implementing and evaluating early autism spectrum disorder (ASD) services in resource-limited contexts. The term ‘resource-limited’ was purposefully selected given that t...
In this chapter, we discuss the challenges of providing early identification and intervention services for autism spectrum disorders (ASD) in resource-limited contexts. We also highlight opportunities and potential solutions that may address such challenges. To address the need of providing sustainable and scalable services for children with ASD, w...
Developing and implementing evidence-based interventions for autism in low- resource settings is a challenging endeavour. A group of researchers at the Centre for Autism Research in Africa (CARA) are focusing on various caregiver education and caregiver coaching interventions. Instead of researchers working in isolation, a decision was made to esta...
We set out to examine key stakeholder perspectives on early detection and intervention for autism spectrum disorder (ASD) in South Africa. Early detection and intervention improves child and family outcomes and lessens long-term costs. We focused on stakeholders in the Western Cape province, one of the better-resourced in terms of healthcare. Eight...
There is a significant research‐to‐practice gap in early detection of young children with autism spectrum disorder (ASD) worldwide but particularly in low‐ and middle‐income countries (LMICs) where expertise is limited and high‐quality training is difficult to access. Autism Navigator® for Primary Care is a web‐based course designed to increase awa...
Autism spectrum disorder (ASD) is recognized as a global public health concern, yet almost everything we know about ASD comes from high-income countries. Here we performed a scoping review of all research on ASD ever published in sub-Saharan Africa (SSA) in order to identify ASD knowledge gaps in this part of the world. Fifty-three publications met...
Culturally appropriate tools are needed for detecting symptoms of autism spectrum disorder in young South African children. The objectives of this study were to (1) adapt and translate into isiZulu existing measures for detecting early signs of autism spectrum disorder, (2) use the measures to characterize and compare behavioural profiles of young...
Background:
Substantial development in social communication skills occurs in the first two years of life. Growth should be evident in sharing emotion and eye gaze; rate of communication, communicating for a variety of functions; using gestures, sounds and words; understanding language, and using functional and pretend actions with objects in play....
Little research has been conducted on behavioral characteristics of children with autism spectrum disorder (ASD) from diverse cultures within the US, or from countries outside of the US or Europe, with little reliable information yet reported from developing countries. We describe the process used to engage diverse communities in ASD research in tw...
The present study extended the findings of Watt et al. (J Autism Dev Disord 38:1518-1533, 2008) by investigating repetitive and stereotyped behaviors (RSB) demonstrated by children (n = 50) and typical development (TD; n = 50) matched on developmental age, gender, and parents' education level. RSB were coded from videotaped Communication and Symbol...
There is extensive experimental evidence that altered auditory feedback (AAF) can have a clinically significant effect on the severity of speech symptoms in people who stutter. However, there is less evidence regarding whether these experimental effects can be observed in naturalistic everyday settings particularly when using the telephone. This st...
Background: Repetitive and stereotyped behaviors (RSB) are frequently interpreted in clinical settings in terms of their apparent functions. However, few studies have systematically examined the functions of RSB in children with ASD. Therefore, there is a clear need to conduct comprehensive studies of the phenomenology of repetitive behaviors seen...
This study examined repetitive and stereotyped behaviors (RSB) in children with autism spectrum disorders (ASD, n = 50), developmental delays without ASD (DD; n = 25) and typical development (TD, n = 50) between 18 and 24 months of age. Children with ASD demonstrated significantly higher frequency and longer duration of RSB with objects, body, and...
This study examined social communication profiles from behavior samples videotaped between 18 and 24 months of age in three groups of children: 50 with autism spectrum disorders (ASD), 23 with developmental delays (DD), and 50 with typical development (TD). The ASD group scored significantly lower than the DD group on 5 social communication measure...
Purpose
The purpose of this study was to examine the predictive validity of a collection of prelinguistic skills measured longitudinally in the 2nd year of life to language outcome in the 3rd year in children with typical language development.
Method
A collection of prelinguistic skills was assessed in 160 children early (M = 14.31 months; SD = 1....
This study investigated verbal fluency abilities in a sub-group of Zulu-English bilingual speakers (n=35). Subjects were required to generate a list of animal names in English-only, Zulu-only, and then in bilingual mode, where both languages could be used. Results were analysed in terms of raw scores and the influence of language mode factors, as w...
The apparently predictable occurrence of stuttering in English-speaking stutterers has been well documented and has revealed a number of rules regarding stuttering loci known as the language factors. This study investigated the presence of these language factors (the phonetic, grammatic, word and sentence locus, word length and syllabic stress fact...
Traumatic brain injury (TBI) affects a substantial portion of the South African population every year. However, there is little empirical evidence available regarding eventual outcome after injury in South Africa. In particular, there is little information regarding the ability of head injured individuals to return to their places of employment fol...
This study aimed to assess the changes in speech behaviors and attitudes of a group of stutterers who attended an intensive stutter modification program, using measures specifically designed to reflect the aims of the program. These included a measure of “clean” stuttering to quantify overt secondary behaviors and a quantitative measure of speech c...
This paper addresses the communicative outcome of a group of closed head injured (CHI) subjects in South Africa. Communicative outcome is evaluated on one test battery currently used for medico-legal assessments in South Africa. It was found that a number of the tests were sensitive to breakdown in this sample, but that the demographic factors of f...