Lead Researcher: Erin Campbell
Project: The majority of autistic children live in low- and middle-income countries (LMIC), yet most research related to autism is conducted in high-income countries (HIC). The cultural, linguistic and socio-economic profile of populations in LMIC are vastly different to those in HIC where most of the existing screening and diagnostic tools were developed. This contextual incongruity could impact instruments when implemented in LMIC. Moreover, access to these tools is limited by financial and proprietary barriers. These challenges are further compounded by delayed access to assessments due to the scarcity of specialists who can provide testing in our setting. In this study, we aim to develop a suite of open-access screening and diagnostic tools that are acceptable, appropriate, and effective for global use to improve accessibility to assessments at primary care level, thus enabling non-specialists to perform initial evaluations.
Lead Researcher: Aubrey Kumm
Project: More than 90% of children with autism spectrum disorder (ASD) live in low- and middle-income countries (LMIC) where there is a great need for culturally appropriate, scalable and effective early identification and intervention tools. Smart phone technology and application (‘apps’) may potentially play an important role in this regard. The Autism&Beyond iPhone App was designed as potential screening tool for autism risk in children, aged 12-72 months. Here we investigated the feasibility of a mobile application that elicits and quantifies social referencing and positive emotional behaviours in young children to detect risk for ASD. The results from this pilot study suggested the App to be technically accurate, accessible and culturally acceptable to families from a low-resource environment in South Africa. Given that there were differences in positive emotional response between the South African and United States groups, careful consideration should be given to identify suitable stimuli if % time smiling is to be used as a global marker for ASD risk across cultures and environments.
Lead Researcher: Nola Chambers
Project: Symptoms of autism spectrum disorder (ASD) can be detected reliably between 18 and 24 months of age. However, the typical age of detection is much later, and valuable years for early intervention are lost. There is an urgent need for training in the early red flags of ASD. This study examined the feasibility of the Autism Navigator® for Primary Care professional development course in South Africa. This is a web-based course designed for health professionals to raise awareness of the early red flags for ASD and thus lower the age of detection of children at risk for ASD and facilitate earlier referral to intervention. A mixed methods approach was used. Sixty-two providers completed the course on-line with a 94% course completion rate. Built-in learner assessment pass rates ranged from 88-100%. Second-language English speakers took longer to complete the learner assessments, and providers with less access to the internet spent less time in the course. Participants’ perceptions of the acceptability, demand and practicality of the course were overwhelmingly positive with some suggestions made for local conditions. Results support the feasibility of the course in SA with some supports required pertaining to language and internet access. Current activities include adaptations to the course and further feasibility testing with targeted sevice providers, specifically nurses, medical officers, and creche teachers.
Lead Researcher: Tosca Heunis
Project: Autism spectrum disorder (ASD) is a neurodevelopmental disorder that responds to early treatment, but most people are diagnosed late. We therefore need biomarkers for ASD that do not require highly trained professionals. Electroencephalography (EEG) might help the search for early biomarkers. In this interdisciplinary project, recurrence quantification analysis of 5-second segments of resting state EEG data was used to identify a potential biomarker for ASD. In three studies, the biomarker was able to differentiate between ASD and typically developing children, ASD and non-ASD within a genetic syndrome, and between non-syndromal ASD and syndromal ASD, all with greater than 90% accuracy.
Lead Researcher: Lesia Smith
Project: Gold standard diagnostic measures such as the Autism Diagnostic Observation Schedule-2 were developed in the US. We do not know if this measure is appropriate to use with Afrikaans-speaking South African children. The ADOS-2 was translated into Afrikaans and we investigated the cultural appropriateness of the tool for the "coloured" (mixed ancestry) population from low to middle socioeconomic backgrounds residing in the Western Cape of South Africa. Three components associated with method bias were examined 1) the language used in the Afrikaans-translated ADOS-2, 2) the social interactions and activities in the ADOS-2, and 3) the ADOS-2 materials. With culturally sensitive administration (we provided guidelines), we found the Afrikaans ADOS-2 to be culturally appropriate for Afrikaans-speaking, coloured individuals from low socioeconomic backgrounds in the Western Cape.
Lead Researcher: Loren Leclezio (Late)
Project: Tuberous Sclerosis Complex (TSC) is an autosomal dominant genetic disorder affecting 1 in 5800 individuals. TSC is a multisystem disorder and is also associated with a range of learning, behavioural, neurodevelopmental and psychiatric difficulties, known as TAND (TSC-Associated Neuropsychiatric Disorders). Given the seemingly uniqueness of each individual’s TAND, diagnosis and treatment can be extremely complex. In order to address the perceived overwhelming uniqueness (which leads to treatment paralysis), this project set out to identify natural clusters of TAND (combinations of behaviours across multi-dimensional levels including age and ability) to simplify further evaluations and treatment. The study was performed in three phases using a mixed-methods approach over a period of 36 months. Findings indicated that natural TAND clusters can be identified and used to inform the development of a TAND toolkit to assist clinicians and families/individuals with TSC in early identification of TAND.
Closed
Autism Caregiver Coaching in Africa: ACACIA (ONGOING)
Can ASD specific parenting programmes work in South Africa? (COMPLETED)
Pilot Study to Improve Access to Early Intervention for Autism in Africa (COMPLETED)
Autism Caregiver Coaching in Africa: ACACIA (ONGOING)
Lead Researcher: Lauren Franz
Co-Lead Researcher: Petrus de Vries
Project Manager: Marisa Viljoen
Project Clinicians and Staff: Noleen Seris, Nokuthula Shabalala, Marisa Viljoen, Katlego Sebolai, Musaddiqah Brown
Project Description: Globally there is a growing need to implement community-based services that support improvements in quality of life of autistic people. Early autism intervention is critical because it can significantly improve both child and family outcomes, but implementation gaps exist worldwide. These gaps are starkest in Africa, where by 2050, forty percent of the world’s children will live. Given the lack of specialists in Africa, task shifting early autism intervention to non-specialists will be a key implementation strategy. Naturalistic Developmental Behavioral Interventions (NDBI), are a class of early autism intervention approaches, that can be effectively delivered by caregivers. Through a partnership between Duke University and the University of Cape Town, our team laid the groundwork for an innovative and scalable coaching intervention for young autistic children. We systematically adapted a caregiver coaching NDBI for the South African context in which coaching is effectively delivered by non-specialist Early Childhood Development practitioners employed by the Education Department. In the proposed study we will build on our foundational work by conducting a type 1 hybrid effectiveness implementation trial of the coaching intervention, delivered by non-specialists, within an existing system of care in South Africa. Our goal is to implement a feasible, scalable early autism intervention model in Africa by conducting research with culturally and linguistically diverse participants in community-based settings, that is inclusive of diverse stakeholder perspectives and incorporates task-shifting. In the proposed study, we will build on our current relationships with families, practitioners, and policy makers by formalizing these relationships and including other key stakeholder groups such as South African autistic self-advocates through a community-academic partnership, a key bridging factor in the EPIS implementation framework. The proposed project has three main objectives. First, to evaluate the real-world effectiveness of non-specialist delivered NDBI caregiver coaching for improving patterns of caregiver-child interaction and child developmental outcomes, and assess the cost-effectiveness of this approach. Second, to identify implementation determinants to inform scale-up. Third, to expand African autism research capacity to enhance scalability. This project also offers a unique opportunity to study variability in autism-related behaviors and phenomenology. We will therefore assess the degree to which response to intervention is moderated by caregiver and dimensional child characteristics. In addition, using an innovative digital assessment method, changes in dimensional quantitative measures of autism-related behaviors will be examined. Finally, cross-cultural differences in dimensional autism-related behaviors will be evaluated via comparison with existing quantitative phenotypic data gathered in U.S. studies. This study is timely and innovative and will inform scale-up of autism early intervention in Africa. Assessing the impact of a scalable intervention in an environment like South Africa which faces significant contextual challenges, increases the ecological validity and relevance of findings for many regions of the world that face with similar challenges.
Lead Researcher: Liezl Schlebusch
In this 3-year project, a group of international researchers (from South Africa, United Kingdom, and Russia) has formed a partnership with an international non-profit disability-support organisation to develop and evaluate a new autism-specific family support programme fit for global use. This programme will be designed to support families with information about autism, skills for supporting their child’s development, and support the emotional wellbeing of caregivers and their families. This multi-year, multi-country study will use participatory methods to develop the content of the programme and an implementation science framework to ensure the programme has global implementation potential. We plan to evaluate the programme in an iterative manner in two contexts, Russia and South Africa.
Lead Researcher: Liezl Schlebusch
Project:The Caregiver Skills Training (CST) programme was developed by the World Health Organisation and international partners to make available a caregiver education program (for caregivers of children 2-9 years old with developmental disabilities) that can be delivered by non-specialist providers in low- and middle-income countries. In collaboration with the World Health Organisation, the South African Department of Social Development, and Autism South Africa, this pilot project will investigate whether the CST Programme is acceptable, feasible, and effective in two South African provinces. Dr Schlebusch and her team will be working together with families of children with developmental disabilities and other key national and local stakeholders. The collaborative research partnerships will ensure that the programme materials and strategies are adapted to be culturally acceptable, responsive to the local socioeconomic and political context, and delivered in a way that meets the needs of families affected by childhood disability issues. The pilot project will provide preliminary evidence of the impact of the intervention and contribute to the global goal of investigating affordable, sustainable, and scalable interventions for families who are raising children with developmental disabilities.
Lead Researcher: Michal Harty
The project: Enhanced Milieu Teaching (EMT) has been used in over 50 research studies to help many children with developmental disabilities, like autism, learn new language. Trained adults use play and everyday routines to teach children new vocabulary. We are exploring the effectiveness of EMT, in a developing country context, like South Africa. Together with EMT developer Prof Ann Kaiser and her team at Vanderbilt University, this project will determine how we need to adapt EMT so it is appropriate to use in South Africa.
In 2016 the first three South African children with autism received EMT intervention. After 10 hours of intervention, all children showed improvements in the number of different words they used correctly in play activities. In 2018, we asked parents and speech-language therapists, what adaptations they think we need to make, so they are comfortable using the intervention with children with developmental disabilities. In 2019, we explored how we can use a Distance-Supported Coaching Model to train local therapists to implement EMT for children with Autism. We also piloted home-based EMT sessions for families who are not able to access clinic-based intervention services. Next steps include evaluating the Coaching Model to coach parents to implement EMT with their children.
Lead Researcher: Nola Chambers
Project: It is the purpose of this study to explore the feasibility of the Autism Navigator JumpStart to Coaching online course in South Africa. This web-based professional development course is designed to train providers to coach parents / caregivers to actively engage their young toddlers in their everyday routines at home. Each provider will complete the web-based training and invite a family with a young child with red flags for ASD to receive the intervention. Supervision will be provided to determine whether this evidence-based service delivery model can be administered with fidelity in the South African context. As this is a feasibility study conducted within an implementation science framework, a set of quantitative and qualitative process measures will be collected throughout the study to investigate various aspects of feasibility of the training course and supervision model, as well as implementation with families in the providers’ specific working contexts.
Can ASD specific parenting programmes work in South Africa? (COMPLETED)
Lead Researcher: John-Joe Dawson-Squibb
Project: The main purpose of this study was to assess the feasibility and appropriateness of two training programmes in South Africa. The EarlyBird programme was designed in the U.K. in 1997 for parents of children newly diagnosed with ASD and has now extended to 14 countries internationally, reaching well over 20000 families. Autism Cares, developed by local NPO, Autism Western Cape, is a psychoeducational programme for both parents of children with ASD and professionals and its impact not previously been formally evaluated. A comparison of the programmes using an evaluation framework assessed their relative stages of development. The outcomes of this study were published in three peer-reviewed papers listed on the Publications page.
Pilot Study to Improve Access to Early Intervention for Autism in Africa (COMPLETED)
Lead Researcher: Lauren Franz
Project Manager: Marisa Viljoen
Project Clinicians: Noleen Seris, Nokuthula Tshabalala, Marisa Viljoen, Minkateko Ndlovu
Project: With the support of an early career development award from the National Institute of Mental Health, the team aims to adapt and implement the Early Start Denver Model (ESDM) intervention for children with autism and their families in South Africa. ESDM is an early intervention with a strong developmental focus that can be used in children 12 to 60 months of age. It is a model that can be delivered in multiple ways: one-on-one with a therapist, through parent coaching, in a group preschool setting, and through telehealth. ESDM strategies increase child motivation for social engagement and sensitize adult caregivers to child communication attempts. ESDM can promote the child’s social, cognitive, and language development.
Closed
Lead Researcher: Stella Mokitimi
Project: There are gaps in knowledge about the needs, barriers and facilitators in child and adolescent mental health services. Further research and robust data are required to understand current policy and services, and to identify key stakeholders for child & adolescent mental health services. It is also crucial to engage key stakeholders, particularly policy development and implementation staff, to increase the likelihood of meaningful policy development and policy implementation. In this PhD project a policy, situational and stakeholder analysis of child and adolescent mental health (CAMH) services, and an exploration of perspectives of users and providers is being done. The study will be conducted in three sequential phases will focus only on the health sector, on primary, secondary and tertiary care services and on formal CAMH services. Policy analysis will be conducted in all nine provinces and the situational analysis will be conducted in the Western Cape only. A Theory of Change framework will be used to synthesise findings and develop a service delivery model in collaboration with policy makers to facilitate effective policy implementation.
Lead Researchers: Dr Simphiwe Simelane & Dr Stella Mokitimi
Project: The majority of children and adolescents with mental health problems live in low- and middle-income countries (LMIC) such as South Africa, where access to diagnosis and treatment is very limited. There is, therefore, an urgent need for research on how child and adolescent mental health (CAMH) services and systems can be strengthened in LMIC. To do this, multi-level information is required to understand the landscape of needs. In this ongoing project, we are focusing on the Western Cape Province of South Africa. Research to date has investigated the policy landscape, the resource landscape, and the perspectives of senior stakeholders, providers, and service users. These steps have identified a range of knowledge gaps and barriers to service strengthening. To ensure research with real impact on the communities we serve, such research must be participatory with the full range of stakeholders throughout the research process. With the paucity of specialist child and adolescent mental health (CAMH) skills in most LMIC, research should aim to strengthen CAMHS across levels of care, with a particular focus on the primary healthcare level. The next steps in this project include further stakeholder identification; the use of a Theory of Change (ToC) framework to map out an ideal CAMHS plan, and specific health systems strengthening actions.
Lead Researcher: Sarosha Pillay
Project: The Western Cape Province is often viewed as one of the better resourced provinces in the country in terms of services for children with Autism Spectrum Disorder (ASD). However more children being identified and referred to educational services in recent times has placed increasing demands on existing resources. Early intervention is essential for children with ASD yet a large number of these children wait long periods before educational services become available to them. There is an urgent requirement to establish current levels of needs, to determine the capacity for children with ASD in the education system and to generate solutions to this major problem.This study will aim to describe and explain the nature and extent of service needs for children with ASD in the Western Cape Province and make recommendations for future ASD service delivery for children with ASD and their families.
Lead Researcher: Marisa Viljoen
Project: Due to very little ASD-related research from low- and middle-income countries we have a limited understanding of the impact of contextual factors on the functioning of individuals with ASD. Knowledge about the role of social and cultural factors on functioning in ASD will help us understand the relationship between genetic and environmental factors better and ultimately enable us to develop and adjust clinical tools and strategies for low-resource settings to better support the majority of individuals living with ASD. This project explored the impact of context/environmental factors on the functioning of individuals with Autism Spectrum Disorder (ASD) in two obviously different socio-economic settings as seen from a family perspective. Perspectives from Sweden as an example of a high-income country (HIC) and South Africa as an example of a low-middle income country (LMIC) were compared in order to identify similarities and differences between functional themes presented by families in these two obviously different socio-economic settings.
Closed
The TANDem Project: Empowering Families Through Technology (ONGOING)
The TANDem Project: Empowering Families Through Technology (ONGOING)
TSC-associated neuropsychiatric disorders (TAND) represent the number one concern to families around the globe, yet they are highly under-identified and under-treated – we refer to these as an ‘identification gap’ and a ‘treatment gap’. In 2012 we introduced the term ‘TAND’ and in 2015 we created the TAND Checklist to reduce the ‘identification gap’. Research using the TAND Checklist showed that we could identify seven natural TAND Clusters that may be useful to reduce both the identification and treatment gaps for TAND further. Following our earlier research, community-based participatory research with families and a range of TSC stakeholders identified three next steps for action:
- Creation of a self-report and quantified version of the TAND Checklist
- Creation of a digital tool such as an app for the TAND Checklist
- Generation of evidence-based guidelines and a toolkit for next-step management of TAND Clusters
The TANDem project was a direct result of the feedback from our TSC stakeholders, and has three aims:
- AIM 1: Development and validation of a quantified, self-report TAND Checklist (TAND-SQ), built as a mobile app
- AIM 2: Generation of consensus clinical guidelines for identification and treatment of TAND Clusters, to be incorporated as a toolkit into the app
- AIM 3: Establishment of a global TAND Consortium through a range of networking, capacity-building and public engagement activities
For more information, see our website at https://tandconsortium.org
Lead Researcher: Aubrey Kumm
Project: More than 90% of children with autism spectrum disorder (ASD) live in low- and middle-income countries (LMIC) where there is a great need for culturally appropriate, scalable and effective early identification and intervention tools. Smart phone technology and application (‘apps’) may potentially play an important role in this regard. The Autism&Beyond iPhone App was designed as potential screening tool for autism risk in children, aged 12-72 months. Here we investigated the feasibility of a mobile application that elicits and quantifies social referencing and positive emotional behaviours in young children to detect risk for ASD. The results from this pilot study suggested the App to be technically accurate, accessible and culturally acceptable to families from a low-resource environment in South Africa. Given that there were differences in positive emotional response between the South African and United States groups, careful consideration should be given to identify suitable stimuli if % time smiling is to be used as a global marker for ASD risk across cultures and environments.
Lead Researcher: Nola Chambers
Project: Symptoms of autism spectrum disorder (ASD) can be detected reliably between 18 and 24 months of age. However, the typical age of detection is much later, and valuable years for early intervention are lost. There is an urgent need for training in the early red flags of ASD. This study examined the feasibility of the Autism Navigator® for Primary Care professional development course in South Africa. This is a web-based course designed for health professionals to raise awareness of the early red flags for ASD and thus lower the age of detection of children at risk for ASD and facilitate earlier referral to intervention. A mixed methods approach was used. Sixty-two providers completed the course on-line with a 94% course completion rate. Built-in learner assessment pass rates ranged from 88-100%. Second-language English speakers took longer to complete the learner assessments, and providers with less access to the internet spent less time in the course. Participants’ perceptions of the acceptability, demand and practicality of the course were overwhelmingly positive with some suggestions made for local conditions. Results support the feasibility of the course in SA with some supports required pertaining to language and internet access. Current activities include adaptations to the course and further feasibility testing with targeted sevice providers, specifically nurses, medical officers, and creche teachers.
Lead Researcher: Tosca Heunis
Project: Autism spectrum disorder (ASD) is a neurodevelopmental disorder that responds to early treatment, but most people are diagnosed late. We therefore need biomarkers for ASD that do not require highly trained professionals. Electroencephalography (EEG) might help the search for early biomarkers. In this interdisciplinary project, recurrence quantification analysis of 5-second segments of resting state EEG data was used to identify a potential biomarker for ASD. In three studies, the biomarker was able to differentiate between ASD and typically developing children, ASD and non-ASD within a genetic syndrome, and between non-syndromal ASD and syndromal ASD, all with greater than 90% accuracy.
Closed