Autism spectrum disorder in sub‐saharan africa: A comprehensive scoping review
Open accessAbstract
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 inclusion criteria. Themes included the phenotype, genetics and risk factors for ASD in SSA, screening and diagnosis, professional knowledge, interventions for ASD, parental perceptions, and social‐cognitive neuroscience. No epidemiological, early intervention, school‐based or adult studies were identified. For each identified theme, we aimed to summarize results and make recommendations to fill the knowledge gaps. The quality of study methodologies was generally not high. Few studies used standardized diagnostic instruments, and intervention studies were typically small‐scale. Overall, findings suggest a substantial need for large‐scale clinical, training, and research programmes to improve the lives of people who live with ASD in SSA. However, SSA also has the potential to make unique and globally‐significant contributions to the etiology and treatments of ASD through implementation, interventional, and comparative genomic science. Autism Res 2017, 10: 723–749 . © 2017 International Society for Autism Research, Wiley Periodicals, Inc.
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Searches for scalable methods of identification and intervention with children and adults with autism have begun.
“searches for scalable methods of identification and perhaps intervention with children and adults [Au:OK? Yes] with autism 135,254 have begun”
From Autism spectrum disorder (2020) · cites this paper as [254]
In “Screening and Diagnosis – Knowledge Gaps in SSA,” the review says development of accessible autism screening and diagnostic tools is underway. “Interventions – Knowledge Gaps in SSA” says parent/caregiver-led interventions have made a small start, but scalable community interventions and interventions across the lifespan remain needs rather than established searches involving both children and adults. (LLM, conf=0.84)
Experimental — accuracy not yet measuredRelatively little research originates from low and middle income countries, which results in their underrepresentation in the broader ASD literature.
“Furthermore, relatively little research originates from these countries, which results in their underrepresentation in the broader ASD literature (Franz et al. 2017).”
From The Diagnosis of Autism: From Kanner to DSM-III to DSM-5 and Beyond (2021) · cites this paper as Franz et al. 2017
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Nice Guideline Updates Team (2017) · Cited by 82 · see citing works
Kakooza‐Mwesige, A., Ssebyala, K., Karamagi, C., Kiguli, S., Smith, K., Anderson, M., Croen, L., Trevathan, E., Hansen, R. L., Smith, D., et al. (2013) · Autism · doi:10.1177/1362361313475848 · Cited by 79 · cited 3× · see citing works
“…only 8% of the children who screened positive on the 23Q met criteria for ASD, suggesting that the majority of children who screened positive and were referred for in-depth clinical assessment (in a setting already challenged by limited resources) did not have ASD [Kakooza-Mwesige et al., 2014].”
BackgroundMethodAttitudes of the autism community to early autism research
Fletcher‐Watson, S., Apicella, F., Bonnie Auyeung, B., Beranová, Š., Bonnet‐Brilhault, F., Canal‐Bedia, R., Charman, T., Chericoni, N., Conceição, I. C., Davies, K., et al. (2016) · Autism · doi:10.1177/1362361315626577 · Cited by 79 · see citing works
Bakare, M. O., Agomoh, A. O., Ebigbo, P. O., Eaton, J., Okonkwo, K. O., Onwukwe, J. U., & Onyeama, G. M. (2009) · Annals of General Psychiatry · doi:10.1186/1744-859x-8-6 · Cited by 78 · see citing works
Igwe, M. N., Bakare, M. O., Agomoh, A. O., Onyeama, G. M., & Okonkwo, K. O. (2010) · The Italian Journal of Pediatrics/Italian journal of pediatrics · doi:10.1186/1824-7288-36-44 · Cited by 71 · see citing works
Sykes, N., Claudio Toma, A., Wilson, N., Volpi, E. V., Sousa, I., Pagnamenta, A. T., Tancredi, R., Battaglia, A., Maestrini, E., Bailey, A. J., et al. (2009) · European Journal of Human Genetics · doi:10.1038/ejhg.2009.47 · Cited by 69 · cited 2× · see citing works
“An increasing number of genetic causes of ASD have been identified, particularly as copy number variant [Sykes et al., 2009], and microdeletion/duplication syndromes [Miller et al., 2009].”
BackgroundMitchell, C., & Holdt, N. (2014) · Journal of Child and Adolescent Mental Health · doi:10.2989/17280583.2013.849606 · Cited by 67 · cited 3× · see citing works
“…papers on family perspectives have been published in SSA, seven from South Africa [Alli, Abdoola, & Mupawose, 2015; Du Toit & Kok, 1999; Fewster & Gurayah, 2015; Greeff & van der Walt, 2010; Kapp & Brown, 2011; Mitchell & Holdt, 2014; Olivier & Hing, 2009], and one from Kenya [Gona et al., 2015].”
BackgroundAutistic disorder in Nigeria: Profile and challenges to management
Lagunju, I. A., Bella-Awusah, T. T., & Omigbodun, O. O. (2014) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2014.08.020 · Cited by 66 · cited 6× · see citing works
“…studies reported that participants were diagnosed between the ages of 7 and 17 years [Bakare et al., 2012; Bakare & Ikegwuonu, 2008; Bello-Mojeed et al., 2011; Holford, 1994; Izuwah et al., 2015; Khan & Hombarume, 1996; Lagunju et al., 2014; Lotter, 1978; Springer et al., 2013; Szabo & Aber, 1992].”
BackgroundMethodResultInfluentialSpringer, P., van Toorn, R., Laughton, B., & Kidd, M. (2013) · South African Journal of Child Health · doi:10.7196/sajch.530 · Cited by 64 · cited 9× · see citing works
“…studies reported that participants were diagnosed between the ages of 7 and 17 years [Bakare et al., 2012; Bakare & Ikegwuonu, 2008; Bello-Mojeed et al., 2011; Holford, 1994; Izuwah et al., 2015; Khan & Hombarume, 1996; Lagunju et al., 2014; Lotter, 1978; Springer et al., 2013; Szabo & Aber, 1992].”
BackgroundMethodResultInfluentialMental health training for health workers in Africa: a systematic review
Liu, G., Jack, H. E., Piette, A., Mangezi, W. O., Machando, D., Rwafa, C., Goldenberg, M., & Abas, M. (2016) · The Lancet Psychiatry · doi:10.1016/s2215-0366(15)00379-x · Cited by 63 · cited 1× · see citing works
“Apart from knowledge, it is also important to consider skills and competencies [Liu et al., 2016].”
BackgroundEtiologies of Autism in a Case-series from Tanzania
Mankoski, R. E., Collins, M., Ndosi, N. K., Mgalla, E. H., Sarwatt, V. V., & Folstein, S. E. (2006) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-006-0143-9 · Cited by 59 · cited 2× · see citing works
“Three articles described potential risk factors for ASD in SSA [Claassen, Naud e, Pretorius, & Bosman, 2008; Mankoski et al., 2006; van Wijngaarden et al., 2013].”
BackgroundResilience in Families Adapting to Autism Spectrum Disorder
Kapp, L., & Brown, O. (2011) · Journal of Psychology in Africa · doi:10.1080/14330237.2011.10820482 · Cited by 58 · cited 2× · see citing works
“…papers on family perspectives have been published in SSA, seven from South Africa [Alli, Abdoola, & Mupawose, 2015; Du Toit & Kok, 1999; Fewster & Gurayah, 2015; Greeff & van der Walt, 2010; Kapp & Brown, 2011; Mitchell & Holdt, 2014; Olivier & Hing, 2009], and one from Kenya [Gona et al., 2015].”
BackgroundThe peopling of the African continent and the diaspora into the new world
Campbell, M., Hirbo, J., Townsend, J., & Tishkoff, S. (2014) · Current Opinion in Genetics and Development · doi:10.1016/j.gde.2014.09.003 · Cited by 56 · see citing works
Rohlwink, U. K., Donald, K. A., Gavine, B., Padayachy, L. C., Wilmshurst, J. M., Fieggen, G. A. G., & Figaji, A. A. (2016) · Developmental Medicine & Child Neurology · doi:10.1111/dmcn.13054 · Cited by 54 · see citing works
Lowe, J. K., Werling, D. M., Constantino, J. N., Cantor, R. M., & Geschwind, D. H. (2014) · American Journal of Psychiatry · doi:10.1176/appi.ajp.2014.14050576 · Cited by 53 · cited 2× · see citing works
“…as the International Molecular Genetics Study of Autism Consortium (IMGSAC) [Maestrini & IMGSAC, 2001]), Autism Genetics Research Exchange (AGRE) [Lowe et al., 2015], and others [Simons VIP, 2012] have allowed for large-scale and cutting-edge genetic and molecular studies of candidate genes,…”
BackgroundMethodAutism spectrum disorders in sub-Saharan Africa
Abubakar, A. A., Ssewanyana, D., de Vries, P. J., & Newton, C. R. J. C. (2016) · The Lancet Psychiatry · doi:10.1016/s2215-0366(16)30138-9 · Cited by 52 · cited 5× · see citing works
“We acknowledge the challenges of translation, validation, and cost of training on existing tools such as the ADI-R and ADOS (see comments by Durkin and colleagues and Abubakar and colleagues) [Abubakar et al., 2016; Durkin et al., 2015]).”
BackgroundMethodResultInfluentialBakare, M. O., Ebigbo, P. O., & Ubochi, V. N. (2012) · Journal of Health Care for the Poor and Underserved · doi:10.1353/hpu.2012.0056 · Cited by 50 · cited 2× · see citing works
“Speech delay was the most common initial symptom described by parents and eight of the 12 phenotype studies reported that participants were diagnosed between the ages of 7 and 17 years [Bakare et al., 2012; Bakare & Ikegwuonu, 2008; Bello-Mojeed et al., 2011; Holford, 1994; Izuwah et al., 2015; Khan & Hombarume, 1996;…”
BackgroundAutism spectrum disorder phenotypes and prenatal exposure to methylmercury
van Wijngaarden, E., Davidson, P. W., Smith, T. H., Evans, K., Yost, K., Love, T., Thurston, S. W., Watson, G. E., Zareba, G., Burns, C. M., et al. (2013) · Epidemiology · doi:10.1097/ede.0b013e31829d2651 · Cited by 49 · cited 1× · see citing works
“Three articles described potential risk factors for ASD in SSA [Claassen, Naud e, Pretorius, & Bosman, 2008; Mankoski et al., 2006; van Wijngaarden et al., 2013].”
BackgroundTravis, J., & Geiger, M. (2010) · Child Language Teaching and Therapy · doi:10.1177/0265659009349971 · Cited by 45 · cited 1× · see citing works
“Studies included single subject experimental designs [Akande, 2000; Travis & Geiger, 2010], pre-post quasi-experimental designs [Akande, 1998, 1999; Bunning, Gona, Newton, & Hartley, 2014; Pansegrouw & Alant, 1996; Silver, 1970], within-subjects design with repeated measures [Alant et al., 2013],…”
Bakare, M. O., Tunde-Ayinmode, M. F., Adewuya, A. O., Bello-Mojeed, M. A., Sale, S., James, B., Yunusa, M. A., Obindo, J. T., Igwe, M. N., Odinka, P. C., et al. (2015) · BMC Research Notes · doi:10.1186/s13104-015-1433-0 · Cited by 45 · cited 1× · see citing works
“Similar observations were made with medical professionals and health and life sciences students [Bakare et al., 2015; Eseigbe et al., 2015; Igwe, Bakare, Agomoh, Onyeama, & Okonkwo, 2010].”
ResultStrategies for Transitioning Preschoolers with Autism Spectrum Disorders to Kindergarten
Denkyirah, A. M., & Agbeke, W. K. (2010) · Early Childhood Education Journal · doi:10.1007/s10643-010-0407-z · Cited by 44 · see citing works
Early detection of autism spectrum disorder in young isiZulu-speaking children in South Africa
Chambers, N. J., Wetherby, A. M., Stronach, S. T., Njongwe, N., Kauchali, S., & GRINKER, R. R. (2016) · Autism · doi:10.1177/1362361316651196 · Cited by 42 · cited 1× · see citing works
“In some SSA settings, we may find that instruments can be used with high fidelity and validly with only minor modifications [Chambers et al., 2016; Smith, Malcolm-Smith, & de Vries, 2016].”
BackgroundSelf-citationPileggi, L.-A., Malcolm‐Smith, S., & Solms, M. (2014) · Laterality Asymmetries of Body Brain and Cognition · doi:10.1080/1357650x.2014.948449 · Cited by 40 · cited 1× · see citing works
“They again found that ASD diagnosis was the only significant predictor of atypical cradling preference and suggested that their results support the hypothesis that leftward cradling bias is associated with basic social-affective capacities [Pileggi et al., 2015].”
ResultBunning, K., Gona, J. K., Newton, C. R. J. C., & Hartley, S. D. (2014) · Augmentative and Alternative Communication · doi:10.3109/07434618.2014.970294 · Cited by 40 · see citing works
Theory of mind in autism spectrum disorder: Does DSM classification predict development?
Hoogenhout, M., & Malcolm‐Smith, S. (2014) · Research in Autism · doi:10.1016/j.rasd.2014.02.005 · Cited by 39 · cited 1× · see citing works
“…articles, all from South Africa, described research in various aspects of social-cognitive and developmental neuroscience in individuals with ASD [Hoogenhout & Malcolm-Smith, 2014; Noach, 1971; Pileggi, MalcolmSmith, Hoogenhout, Thomas, & Solms, 2013; Pileggi, Malcolm-Smith, & Solms, 2015; van…”
BackgroundEuropean clinical network: autism spectrum disorder assessments and patient characterisation
Ashwood, K. L., Buitelaar, J., Murphy, D., Spooren, W., & Charman, T. (2015) · European Child & Adolescent Psychiatry · doi:10.1007/s00787-014-0648-2 · Cited by 39 · see citing works
Smith, L., Malcolm-Smith, S., & de Vries, P. J. (2017) · Autism · doi:10.1177/1362361316648469 · Cited by 37 · see citing works
Parents’ journey into the world of autism
Alli, A., Abdoola, S., & Mupawose, A. (2015) · South African Journal of Child Health · doi:10.7196/sajch.7942 · Cited by 36 · cited 1× · see citing works
“Parents also noted that their child’s communicative skills were not generalized to all settings [Alli et al., 2015].”
BackgroundRefractive errors in children with autism in a developing country
Ezegwui, I. R., Lawrence, L., Aghaji, A. E., Okoye, O., Okoye, O., Onwasigwe, E., & Ebigbo, P. (2014) · Nigerian Journal of Clinical Practice · doi:10.4103/1119-3077.134042 · Cited by 35 · see citing works
Wong, A. Y. S., Hsia, Y., Chan, E. W., Murphy, D., Simonoff, E. A., Buitelaar, J. K., & Wong, I. C. K. (2014) · Autism Research · doi:10.1002/aur.1391 · Cited by 31 · cited 3× · see citing works
“…& Hartley, 2014; Pansegrouw & Alant, 1996; Silver, 1970], within-subjects design with repeated measures [Alant et al., 2013], nonexperimental descriptive group designs of medication use [Louw, Bentley, Sorsdahl, & Adnams, 2013; Wong et al., 2014], and one qualitative design [Geils & Knoetze, 2008].”
BackgroundConversations with Barney: A Conversation Analysis of Interactions with a Child with Autism
Geils, C., & Knoetze, J. J. (2008) · South African Journal of Psychology · doi:10.1177/008124630803800111 · Cited by 30 · see citing works
Childhood autism in a 13 year old boy with oculocutaneous albinism: a case report
Bakare, M. O., & Ikegwuonu, N. N. (2008) · Journal of Medical Case Reports · doi:10.1186/1752-1947-2-56 · Cited by 30 · cited 4× · see citing works
“…description, 12 articles (from Nigeria, South Africa, Kenya, and Zimbabwe) examined the phenotype of ASD in SSA [Bakare, Ebigbo, & Ubochi, 2012; Bakare & Ikegwuonu, 2008; BelloMojeed, Ogun, Omigbodun, Adewuya, & Ladapo, 2011; Dhadphale, Lukwago, & Gajjar, 1982; Ezegwui et al., 2014; Holford,…”
Influential5-HTTLPR Polymorphism: Analysis in South African Autistic Individuals
Arieff, Z., Kaur, M., Gameeldien, H., van der Merwe, L., & Bajić, V. B. (2010) · Human Biology · doi:10.3378/027.082.0303 · Cited by 28 · see citing works
McDonald, C. R., Elphinstone, R. E., & Kain, K. C. (2013) · Trends in Parasitology · doi:10.1016/j.pt.2013.03.005 · Cited by 26 · see citing works
First port of call: facing the parents of autism spectrum disorder
Fewster, D. L., & Gurayah, T. (2015) · South African Family Practice · doi:10.1080/20786190.2014.995917 · Cited by 24 · see citing works
Observation-centered Approach to ASD Assessment in Tanzania
Harrison, A. J., Zimak, E. H., Sheinkopf, S. J., Manji, K. P., & Morrow, E. M. (2014) · Intellectual and developmental disabilities · doi:10.1352/1934-9556-52.5.330 · Cited by 22 · cited 1× · see citing works
“…are available, from early intervention for infants and young children, to social skills training, special education and a growing support-base for services for adults with ASD [Dawson et al., 2010; Hedley et al., 2016; Laugeson, Frankel, Mogil, & Dillon, 2009; Spaulding, Lerner, & Gadow, 2016].”
BackgroundSpaulding, C. J., Lerner, M. D., & Gadow, K. D. (2016) · Autism · doi:10.1177/1362361316645428 · Cited by 22 · see citing works
Sharma, J. R., Arieff, Z., Gameeldien, H., Davids, M., Kaur, M., & van der Merwe, L. (2012) · Genetic Testing and Molecular Biomarkers · doi:10.1089/gtmb.2012.0212 · Cited by 21 · cited 2× · see citing works
“Two papers on the genetics of ASD in SSA were identified [Arieff, Kaur, Gameeldien, van der Merwe, & Bajic, 2010; Sharma et al., 2013], both from South Africa.”
BackgroundLate Identification of Autistic Disorder in Nigeria: An Illustration with 2 Case Reports
Bello-Mojeed, M., Ogun, O., Omigbodun, O., Adewuya, A. O., & Ladapo, H. (2011) · Nigerian Journal of Psychiatry · doi:10.4314/njpsyc.v9i2.69920 · Cited by 18 · cited 6× · see citing works
“…12 phenotype studies reported that participants were diagnosed between the ages of 7 and 17 years [Bakare et al., 2012; Bakare & Ikegwuonu, 2008; Bello-Mojeed et al., 2011; Holford, 1994; Izuwah et al., 2015; Khan & Hombarume, 1996; Lagunju et al., 2014; Lotter, 1978; Springer et al., 2013;…”
BackgroundMethodResultInfluentialDHADPHALE, M., Lukwago, M. G., & Gajjar, M. (1982) · PubMed · Cited by 18 · see citing works
Cradling bias is absent in children with autism spectrum disorders
Pileggi, L.-A., Malcolm‐Smith, S., Hoogenhout, M., Thomas, K. G. F., & Solms, M. (2013) · Journal of Child and Adolescent Mental Health · doi:10.2989/17280583.2013.767262 · Cited by 16 · cited 1× · see citing works
“They reported that children with ASD showed no preference for cradling side whereas typically developing children showed a strong left-sided preference [Pileggi et al., 2013].”
BackgroundTranslucency Ratings of Blissymbols over Repeated Exposures by Children with Autism
Alant, E., Zheng, W., Harty, M., & Lloyd, L. L. (2013) · Augmentative and Alternative Communication · doi:10.3109/07434618.2013.813967 · Cited by 16 · cited 2× · see citing works
“…[Akande, 1998, 1999; Bunning, Gona, Newton, & Hartley, 2014; Pansegrouw & Alant, 1996; Silver, 1970], within-subjects design with repeated measures [Alant et al., 2013], nonexperimental descriptive group designs of medication use [Louw, Bentley, Sorsdahl, & Adnams, 2013; Wong et al., 2014], and…”
MethodAutistic spectrum disorder (ASD): Parental challenges and strategies
Olivier, M. A. J., & Hing, A. D. A. (2009) · Vulnerable Children and Youth Studies · doi:10.1080/17450120802290572 · Cited by 14 · cited 4× · see citing works
“In South Africa parents reported lack of social support, limited knowledge about ASD, lack of practical assistance, and uncertainty about their child’s prognosis [Du Toit & Kok, 1999; Fewster & Gurayah, 2015; Olivier & Hing, 2009].”
BackgroundInfluentialDHADPHALE, M., Lukwago, M. G., & Gajjar, M. (1982) · The Indian Journal of Pediatrics · doi:10.1007/bf02914974 · Cited by 14 · see citing works
Clinical Pattern of Autism in N igeria
Izuwah, D. N., Okoh, B., & Alikor, E. A. D. (2015) · Autism Research · doi:10.1002/aur.1531 · Cited by 12 · cited 8× · see citing works
“…studies reported that participants were diagnosed between the ages of 7 and 17 years [Bakare et al., 2012; Bakare & Ikegwuonu, 2008; Bello-Mojeed et al., 2011; Holford, 1994; Izuwah et al., 2015; Khan & Hombarume, 1996; Lagunju et al., 2014; Lotter, 1978; Springer et al., 2013; Szabo & Aber, 1992].”
BackgroundMethodResultInfluentialConcept Formation in the Speaking Autistic Child
Noach, M. (1974) · International Journal of Mental Health · doi:10.1080/00207411.1974.11448648 · Cited by 11 · cited 3× · see citing works
“Social-Cognitive and Developmental Neuroscience of ASD Five articles, all from South Africa, described research in various aspects of social-cognitive and developmental neuroscience in individuals with ASD [Hoogenhout & Malcolm-Smith, 2014; Noach, 1971; Pileggi, MalcolmSmith, Hoogenhout, Thomas, & Solms, 2013; Pileggi…”
BackgroundInfluentialAutism among Primary School Pupils in Benin Metropolis: Implications for Counselling
Audu, E., & Egbochuko, E. (2011) · Edo Journal of Counselling · doi:10.4314/ejc.v3i2.63612 · Cited by 11 · see citing works
Louw, K.-A., Bentley, J., Sorsdahl, K. R., & Adnams, C. M. (2013) · Journal of Child and Adolescent Mental Health · doi:10.2989/17280583.2013.767265 · Cited by 11 · cited 2× · see citing works
“Finally, two studies described the use of medication for individuals with ASD [Louw et al., 2013; Wong et al., 2014].”
BackgroundLevels of autistic behaviour among the mentally handicapped children in Zimbabwe.
Khan, N., & Hombarume, J. (1996) · PubMed · Cited by 10 · see citing works
Autism — A Case in Early Childhood: A South African Investigation
Akande, A. (1999) · Early Child Development and Care · doi:10.1080/0030443991550107 · Cited by 10 · cited 2× · see citing works
“In two additional studies, Akande reported the impact of tutor’s self-monitoring of reinforcing statements on the frequency of play behaviors in children with ASD [Akande, 1998, 1999].”
Backgroundvan Schalkwyk, G. I., Beyer, C., & de Vries, P. J. (2016) · Springer eBooks · doi:10.1007/978-1-4614-6435-8_102111-1 · Cited by 10 · see citing works
Monozygotic twins with early infantile autism. A case report.
Wh, W., & Pompe van Meerdervoort, M. (1979) · PubMed · Cited by 9 · see citing works
Assessing Color Identification in Children with Autism
Akande, A. (2000) · Early Child Development and Care · doi:10.1080/0300443001640108 · Cited by 8 · cited 3× · see citing works
“Akande reported the differential effects of presentation mode on the acquisition of color labels in three children with ASD [Akande, 2000].”
BackgroundClaassen, M., Naudé, H., Pretorius, E., & Bosman, M. C. (2008) · Early Child Development and Care · doi:10.1080/03004430600851173 · Cited by 5 · see citing works
Immediate echolalia and the interactive behaviour of autistic children
van Zyl, I., Alant, E., & Uys, I. C. (1985) · South African Journal of Communication Disorders · doi:10.4102/sajcd.v32i1.330 · Cited by 5 · cited 1× · see citing works
“They reported that immediate echolalia was relevant, and displayed meaningful information that maintained social interaction [van Zyl et al., 1985].”
BackgroundASPERGER'S SYNDROME: A CLASSIFICATION STRUGGLE
Holford, L. E. (1994) · Southern African Journal of Child and Adolescent Mental Health · doi:10.1080/16826108.1994.9631533 · Cited by 3 · cited 1× · see citing works
“…articles, all from South Africa, described research in various aspects of social-cognitive and developmental neuroscience in individuals with ASD [Hoogenhout & Malcolm-Smith, 2014; Noach, 1971; Pileggi, MalcolmSmith, Hoogenhout, Thomas, & Solms, 2013; Pileggi, Malcolm-Smith, & Solms, 2015; van…”
BackgroundCommunication intervention in an adolescent with profound cognitive impairment and autistic features
Pansegrouw, I., & Alant, E. (1996) · South African Journal of Communication Disorders · doi:10.4102/sajcd.v43i1.239 · Cited by 3 · cited 2× · see citing works
“…designs [Akande, 2000; Travis & Geiger, 2010], pre-post quasi-experimental designs [Akande, 1998, 1999; Bunning, Gona, Newton, & Hartley, 2014; Pansegrouw & Alant, 1996; Silver, 1970], within-subjects design with repeated measures [Alant et al., 2013], nonexperimental descriptive group…”
BackgroundConcept formation in the speaking autistic child
Noach, M. (1971) · South African Journal of Communication Disorders · doi:10.4102/sajcd.v18i1.421 · Cited by 2 · see citing works
Autism Diagnostic Observation Schedule-2--Afrikaans Version
Smith, L., Malcolm‐Smith, S., & de Vries, P. J. (2017) · PsycTESTS Dataset · doi:10.1037/t64428-000 · Cited by 1 · see citing works
Flagged first, then by citations
2 of the 130 references couldn’t be matched to a known paper.
Research works printed but not linked: 5
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- Maestrini E IMGSAC 2001 Analysis of candidate genes for autism on chromosomes 7q, 2q and 16p American Journal of Human Genetics 69 548 548
- Schopler E Van Bourgondein ME Wellman GJ Love SR 2010 Childhood autism rating scale, second edition (CARS2) San Antonia, TX Pearson
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Cited by
Sorted by citations
Global prevalence of autism: A systematic review update
Zeidan, J., Fombonne, E., Scorah, J., Ibrahim, A., Durkin, M. S., Saxena, S., Yusuf, A., Shih, A., & Elsabbagh, M. (2022) · Autism Research · doi:10.1002/aur.2696 · Cited by 3,117 · see citing works
“Specifically, epidemiological estimates can reflect the state of identification, services, and supports offered to the affected population and signal to policymakers strategies for improvement (Fombonne, 2019; Franz et al., 2017; Raina et al., 2017).”
BackgroundLord, C., Brugha, T. S., Charman, T., Cusack, J., Dumas, G., Frazier, T., Jones, E. J. H., Jones, R. M., Pickles, A., State, M. W., et al. (2020) · Nature Reviews Disease Primers · doi:10.1038/s41572-019-0138-4 · Cited by 1,859 · see citing works
The Lancet Commission on the future of care and clinical research in autism
Lord, C., Charman, T., Havdahl, A., Carbone, P., Anagnostou, E., Boyd, B., Carr, T., de Vries, P. J., Dissanayake, C., Divan, G., et al. (2022) · The Lancet · doi:10.1016/s0140-6736(21)01541-5 · Cited by 924 · see citing works
Prevalence of Autism Spectrum Disorder in Preterm Infants: A Meta-analysis
Agrawal, S., Rao, S. C., Bulsara, M. K., & Patole, S. (2018) · PEDIATRICS · doi:10.1542/peds.2018-0134 · Cited by 332 · see citing works
The Diagnosis of Autism: From Kanner to DSM-III to DSM-5 and Beyond
Rosen, N. E., Lord, C., & Volkmar, F. R. (2021) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-021-04904-1 · Cited by 302 · see citing works
de Leeuw, A., Happé, F., & Hoekstra, R. A. (2020) · Autism Research · doi:10.1002/aur.2276 · Cited by 295 · see citing works
Divan, G., Bhavnani, S., Leadbitter, K., Ellis, C., Dasgupta, J., Abubakar, A. A., Elsabbagh, M., Hamdani, S. U., Servili, C., Patel, V., et al. (2021) · Journal of Child Psychology and Psychiatry · doi:10.1111/jcpp.13404 · Cited by 129 · see citing works
“…of care by capitalizing upon the local nonspecialist health-care workforce, or on ‘parent-champions’, to deliver community-based or home-based care (Franz et al., 2017; Lee & Meadan, 2020; Naveed et al., 2019; Patra & Kar, 2020), and that individual countries should identify the most appropriate…”
BackgroundMethodInfluentialHeunis, T.-M., Aldrich, C., Peters, J. M., Jeste, S., Şahin, M., Scheffer, C., & de Vries, P. J. (2018) · BMC Medicine · doi:10.1186/s12916-018-1086-7 · Cited by 107 · see citing works
Kumm, A. J., Viljoen, M., & de Vries, P. J. (2021) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-021-05084-8 · Cited by 99 · see citing works
Parent Education and Training for autism spectrum disorders: Scoping the evidence
Dawson-Squibb, J.-J., Davids, E. L., Harrison, A. J., Molony, M. A., & de Vries, P. J. (2019) · Autism · doi:10.1177/1362361319841739 · Cited by 90 · see citing works
“…in LMIC are increasingly attentive towards implementation, dissemination and related factors currently not included in the majority of research in ASD PET-related work (Franz et al., 2017; Kouimtsidis et al., 2017; Lemmi et al., 2015; Nakimuli-Mpungu et al., 2014; Singla et al., 2015).”
BackgroundThe importance of context in early autism intervention: A qualitative South African study
Guler, J., de Vries, P. J., Seris, N., Shabalala, N., & Franz, L. (2017) · Autism · doi:10.1177/1362361317716604 · Cited by 71 · see citing works
“…health challenge and the majority of individuals with ASD live in low- and middle-income countries (LMICs), such as South Africa, and receive limited services from health or social care systems (Abubakar et al., 2016; De Vries, 2016; De Vries and Bölte, 2016; Franz et al., 2017; Khan et al., 2012).”
InfluentialSelf-citationLate diagnosis of autism: exploring experiences of males diagnosed with autism in adulthood
Lupindo, M. B., Maw, A., & Shabalala, N. (2022) · Current Psychology · doi:10.1007/s12144-022-03514-z · Cited by 63 · see citing works
Tilahun, D., Fekadu, A., Tekola, B., Araya, M., Roth, I., Davey, B., Hanlon, C., & Hoekstra, R. A. (2017) · Autism · doi:10.1177/1362361317730298 · Cited by 62 · see citing works
“The prevalence of autism in sub-Saharan Africa is unknown (Elsabbagh et al., 2012; Franz et al., 2017), but prevalence studies of general mental health problems and intellectual disability in low- and middle-income countries (LMIC) suggest that these problems are at least as prevalent as in high-income countries (Maul…”
BackgroundChilaka, C. A., & Mally, A. (2020) · Foods · doi:10.3390/foods9111585 · Cited by 57 · see citing works
Schmengler, H., Cohen, D., Tordjman, S., & Melchior, M. (2021) · Frontiers in Psychiatry · doi:10.3389/fpsyt.2021.566368 · Cited by 48 · see citing works
“Regarding developmental disorders of speech and language, academic skills or coordination, Lehti et al. (6) found higher odds in children of women born in the former Soviet Union and former Yugoslavia, Sub-Saharan Africa, North Africa and the Middle East, Asia, and Latin America, but not other Western countries.”
InfluentialLovelace, T. S., Comis, M., Tabb, J., & Oshokoya, O. (2021) · Behavior Analysis in Practice · doi:10.1007/s40617-021-00654-9 · Cited by 56 · see citing works
The Oral health status of children with autism Spectrum disorder in KwaZulu-Nata, South Africa
Naidoo, M., & Singh, S. (2018) · BMC Oral Health · doi:10.1186/s12903-018-0632-1 · Cited by 55 · see citing works
“The scarcity of this data has been attributed to the rarity of epidemiological surveys on ASD in this geographical area [7].”
BackgroundAderinto, N., Olatunji, G. D., & Idowu, O. (2023) · Annals of Medicine and Surgery · doi:10.1097/ms9.0000000000001107 · Cited by 52 · see citing works
“However, there remains a paucity of knowledge about ASD in Africa([2]).”
BackgroundFranz, L., Adewumi, K., Chambers, N. J., Viljoen, M., Baumgartner, J. N., & de Vries, P. J. (2018) · Journal of Child and Adolescent Mental Health · doi:10.2989/17280583.2018.1525386 · Cited by 51 · see citing works
“…build a sustainable early ASD screening system, work on translation and validation of screening and diagnostic tools needs to occur (de Vries, 2016; Franz et al., 2017) as well as efforts towards open-access screening and diagnostic tools and technologies that could help facilitate cost-effective…”
BackgroundInfluentialSelf-citationPillay, S., Duncan, M., & de Vries, P. J. (2020) · Autism · doi:10.1177/1362361320978042 · Cited by 50 · see citing works
“There may be many potential reasons for the lower rates of ASD reported in LMIC to date, including lack of awareness, stigma, diagnostic overshadowing, access barriers to care and limited research (de Vries, 2016; Franz et al., 2017).”
BackgroundInfluentialRethinking autism spectrum disorder assessment for children during COVID ‐19 and beyond
Zwaigenbaum, L., Bishop, S. L., Stone, W. L., Ibañez, L. V., Halladay, A. K., Goldman, S., Kelly, A. M., Klaiman, C., Lai, M., Miller, M. R., et al. (2021) · Autism Research · doi:10.1002/aur.2615 · Cited by 55 · see citing works
“In fact, clinical diagnosis by experienced clinicians based on DSM criteria was the criterion against which these research tools were calibrated, validated, and refined (Gotham et al., 2007; Lord et al., 1994; Risi et al., 2006).”
MethodMushroom Nutrition as Preventative Healthcare in Sub-Saharan Africa
Fernandes, T. H., Garrine, C. M. L. P., Ferrão, J., Bell, V., & Varzakas, T. H. (2021) · Applied Sciences · doi:10.3390/app11094221 · Cited by 50 · see citing works
“Indeed, maternal and child mental health services have not been a priority, since child mortality and malnutrition are more urgent concerns [206,207].”
BackgroundGlobal Data on Autism Spectrum Disorders Prevalence: A Review of Facts, Fallacies and Limitations
Onaolapo, A. Y., & Onaolapo, O. J. (2017) · Universal Journal of Clinical Medicine · doi:10.13189/ujcm.2017.050202 · Cited by 47 · see citing works
Lee, J. D., Meadan, H., Sands, M. M., Terol, A. K., Loya, M. R. M., & Yoon, C. D. (2023) · International Journal of Developmental Disabilities · doi:10.1080/20473869.2023.2176966 · Cited by 48 · see citing works
“The ‘ 90 – 10 ’ divide in global mental health also illustrates a similar picture and indicates that only 10% of research is performed in low-to middle-income countries where 90% of the world ’ s children live (Franz et al. 2017, Kieling et al. 2011).”
Stathopoulos, S., Gaujoux, R., Lindeque, J. Z., Mahony, C., Colff, R. V. D., van der Westhuizen, F. H., & O’Ryan, C. (2020) · Autism Research · doi:10.1002/aur.2310 · Cited by 45 · see citing works
“This bias [Franz et al., 2017] is exacerbated by the absence of a centralized ASD biobank for African populations.”
BackgroundOduyemi, A. Y., Okafor, I. P., Eze, U. T., Akodu, B. A., & Roberts, A. A. (2021) · BMC Psychology · doi:10.1186/s40359-021-00687-3 · Cited by 44 · see citing works
Amaral, D. G., Anderson, G. M., Bailey, A. J., Bernier, R., Bishop, S. L., Blatt, G. J., Canal‐Bedia, R., Charman, T., Dawson, G., de Vries, P. J., et al. (2019) · Autism Research · doi:10.1002/aur.2101 · Cited by 40 · see citing works
“Research, on the whole, was of relatively poor quality [Franz et al., 2017].”
BackgroundInfluentialKang, L., Liu, J., Liu, Y., Liang, W., Yang, F., & Liu, M. (2022) · Asian Journal of Psychiatry · doi:10.1016/j.ajp.2022.103359 · Cited by 40 · see citing works
Astrocytes and Microglia in Stress-Induced Neuroinflammation: The African Perspective
Olude, M. A., Mouihate, A., Mustapha, O. A., Farina, C., Quintana, F. J., & Olopade, J. O. (2022) · Frontiers in Immunology · doi:10.3389/fimmu.2022.795089 · Cited by 37 · see citing works
Yoro, A. J., Fourie, J. V., & van der Merwe, M. (2020) · African Journal of Disability · doi:10.4102/ajod.v9i0.561 · Cited by 38 · see citing works
“The number of learners with autism disorder, for instance, in the USA is considered to be 1in every 68, whilst the numbers in low- and middle-income countries are considered to be much higher as 90% of children with autism disorder are found in these contexts (Franz et al. 2017).”
BackgroundBordini, D., Paula, C. S., da Cunha, G. R., Caetano, S. C., Bagaiolo, L., Ribeiro, T. C., Martone, M. C. C., Portolese, J., Moya, A. C., Brunoni, D., et al. (2020) · Journal of Intellectual Disability Research · doi:10.1111/jir.12759 · Cited by 39 · see citing works
The experiences of parents raising children with developmental disabilities in Ethiopia
Tekola, B., Kinfe, M., Bayouh, F. G., Hanlon, C., & Hoekstra, R. A. (2022) · Autism · doi:10.1177/13623613221105085 · Cited by 44 · see citing works
Genovesi, E., Jakobsson, C., Nugent, L., Hanlon, C., & Hoekstra, R. A. (2022) · Autism · doi:10.1177/13623613221096208 · Cited by 50 · see citing works
“However, research on autism is limited in this region (Abubakar et al., 2016; Bakare et al., 2022; Divan et al., 2021; Franz et al., 2017).”
BackgroundSchlebusch, L., & Dada, S. (2018) · Research in Autism · doi:10.1016/j.rasd.2018.04.005 · Cited by 27 · see citing works
Pervin, M. M., Ahmed, H. U., & Hagmayer, Y. (2022) · Frontiers in Psychiatry · doi:10.3389/fpsyt.2022.834783 · Cited by 26 · see citing works
Zerihun, T., Kinfe, M., Koly, K. N., Abdurahman, R., Girma, F., WHO Team, Hanlon, C., de Vries, P. J., & Hoekstra, R. A. (2023) · Autism · doi:10.1177/13623613231162155 · Cited by 26 · see citing works
“However, access to, and availability of, services to support their needs is highly limited in SSA (de Vries, 2016; Franz et al., 2017; Lord et al., 2022) and in Ethiopia, in particular (Tekola et al., 2016).”
BackgroundMakombe, C. B. T., Shabalala, N., Viljoen, M., Seris, N., de Vries, P. J., & Franz, L. (2019) · Pediatric Medicine · doi:10.21037/pm.2019.07.08 · Cited by 27 · see citing works
“%) were non-verbal at diagnosis, as compared to Caucasian children (42”
BackgroundInfluentialSelf-citationViljoen, M., Mahdi, S., Shelly, J., & de Vries, P. J. (2020) · Autism · doi:10.1177/1362361320950055 · Cited by 24 · see citing works
“Differences between LMIC and HIC were mostly related to contextual factors such as later diagnosis, inadequate referral from primary health care workers, poor access and availability of services, and lack of trained health care workers (de Vries, 2016; Malcolm-Smith et al., 2013; Franz et al., 2017).”
BackgroundDevelopmental disabilities in Africa: A scientometric review
Lim, M., Carollo, A., Neoh, M. J. Y., Sacchiero, M., Azhari, A., Balboni, G., Marschik, P. B., Nordahl‐Hansen, A., Dimitriou, D., & Esposito, G. (2022) · Research in Developmental Disabilities · doi:10.1016/j.ridd.2022.104395 · Cited by 24 · see citing works
Schmengler, H., Lesueur, F. E.-K., Yermachenko, A., Taine, M., Cohen, D., Peyre, H., Saint-Georges, C., Thierry, X., & Melchior, M. (2019) · Autism Research · doi:10.1002/aur.2181 · Cited by 22 · see citing works
Autism Assessment in Low- and Middle-Income Countries: Feasibility and Usability of Western Tools
Bauer, K., Morin, K. L., Renz, T. E., & Zungu, S. P. (2022) · Focus on Autism and Other Developmental Disabilities · doi:10.1177/10883576211073691 · Cited by 22 · see citing works
“Autism spectrum disorder (ASD) is considered a global health concern; however, nearly everything we know about autism comes from research in high-income countries (Franz et al., 2017).”
BackgroundThe Unmasking of Autism in South Africa and Nigeria
Adams, S. N. (2024) · Neuropsychiatric Disease and Treatment · doi:10.2147/ndt.s461650 · Cited by 21 · see citing works
“3,16 All studies reported more males than females being diagnosed and that children from middle-high income families had an improved likelihood of being evaluated for an autism diagnosis.”
BackgroundDevelopmental disorders among Norwegian-born children with immigrant parents
Hansen, T. M., Qureshi, S. A., Gele, A. A., Hauge, L. J., Biele, G. P., Surén, P., & Kjøllesdal, M. K. R. (2023) · Child and Adolescent Psychiatry and Mental Health · doi:10.1186/s13034-022-00547-x · Cited by 21 · see citing works
“These numbers do not correspond to reported rates of ASD among children in Eastern Africa [28], which could be due to several environmental factors including underdiagnosis in countries of origin, different environmental factors in Norway and stressors associated with growing up in an immigrant context.”
Implementing early intervention for autism spectrum disorder: a global perspective
Franz, L., & Dawson, G. (2019) · Pediatric Medicine · doi:10.21037/pm.2019.07.09 · Cited by 21 · see citing works
“However, ASD research has disproportionately low representation from populations outside of the United States and Europe (7).”
Self-citationButler, L. K., Valle, C. L., Schwartz, S., Palana, J., Liu, C., Peterman, N., Shen, L., & Tager-Flusberg, H. B. (2022) · Frontiers in Communication · doi:10.3389/fcomm.2022.820564 · Cited by 21 · see citing works
“ethnicity, sex, gender), as well as feasible across cultures (Franz et al., 2017; Dash et al., 2021).”
BackgroundChansa-Kabali, T., Nyoni, J., & Mwanza, H. (2019) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-019-04044-7 · Cited by 20 · see citing works
Fewster, D. L., Govender, P., & Uys, K. (2019) · Journal of Child and Adolescent Mental Health · doi:10.2989/17280583.2019.1659146 · Cited by 20 · see citing works
Shifting the centre of gravity: Towards a truly global representation in autism research
Divan, G., Chiang, C., Villalobos, M., Bakare, M. O., & Hoekstra, R. A. (2023) · Autism · doi:10.1177/13623613231214644 · Cited by 20 · see citing works
“The vast majority of autism research papers published in the international peer-reviewed literature are conducted in high-income countries (HIC), particularly in North America and Europe (Franz et al., 2017).”
BackgroundWashington‐Nortey, M., & Serpell, Z. N. (2021) · Research in Developmental Disabilities · doi:10.1016/j.ridd.2021.103989 · Cited by 19 · see citing works
Cardon, A., & Marshall, T. C. (2020) · Transcultural Psychiatry · doi:10.1177/1363461520953342 · Cited by 18 · see citing works
Pillay, S., Duncan, M., & de Vries, P. J. (2022) · Autism · doi:10.1177/13623613211067324 · Cited by 19 · see citing works
“Acknowledging that diagnostic and interventional systems and services are highly diverse around the world, the majority of research on autism comes from high-income countries (Franz et al., 2017; Tekola et al., 2016).”
BackgroundSoeker, M. S. (2020) · Work · doi:10.3233/wor-203127 · Cited by 17 · see citing works
“The findings of a systematic review completed by Abubakar, Ssewanyan and Newton [6], as well as a scoping review conducted by Franz, Chambers, von Isenberg and de Vries [7], did not reveal a single study that focused on Adults living with ASD in sub-Saharan Africa (including South Africa).”
Schlebusch, L., Chambers, N. J., Dawson-Squibb, J.-J., Harty, M., Franz, L., & de Vries, P. J. (2020) · Elsevier eBooks · doi:10.1016/b978-0-12-819749-3.00005-1 · Cited by 18 · see citing works
Self-citationViljoen, M., Mahdi, S., Griessel, D., Bölte, S., & de Vries, P. J. (2019) · Autism · doi:10.1177/1362361319829868 · Cited by 17 · see citing works
“Differences between highand low-socioeconomic status (SES) communities relating to ASD include later diagnosis, inadequate referral from primary health care workers, poor access and availability of diagnostic and intervention services and lack of trained health care workers (de Vries, 2016; Franz et al., 2017; Malcolm…”
BackgroundSex differences in age of diagnosis of autism spectrum disorder: Preliminary evidence from Uganda
Bonney, E., Abbo, C., Ogara, C., Villalobos, M., & Elison, J. T. (2021) · Autism Research · doi:10.1002/aur.2645 · Cited by 18 · see citing works
“Though there is currently no epidemiological data on the prevalence of ASD in Africa, clinical observations suggest that the proportion of children presenting with clinical impairments in social communication has increased substantially over the past few years (Abubakar et al., 2016; Durkin et al., 2015; Franz et al.,…”
BackgroundAssessing Autism Knowledge Across the Global Landscape Using the ASK-Q
Harrison, A. J., Naqvi, N. C., Smit, A. K., Kumar, P. N., Muhammad, N. A., Saade, S., Yu, L., Cappe, É., Low, H. M., Chan, S.-J., et al. (2023) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-023-05936-5 · Cited by 21 · see citing works
“Similarly, knowledge levels remain low in multiple regions of Africa (for reviews see, Bakare et al., 2022; Franz et al., 2017; Wireko-Gyebi & Ashiagbor, 2018).”
InfluentialEngstrand, R. Z., & Yakubova, G. (2023) · Autism · doi:10.1177/13623613231170553 · Cited by 18 · see citing works
“A study by Franz et al. (2017) found that autism research conducted in the countries of sub-Saharan Africa revealed the low number of peer-reviewed studies and the absence of studies reporting prevalence of ASD, early intervention, or studies examining any aspects of autism in adults, among others.”
BackgroundEnfrentando al Covid-19: situación de las personas con autismo y sus familias en Latinoamérica
Valdez, D., Montiel‐Nava, C., Paula, C. S., Rattazzi, A., Rosoli, A., Barrios, N., Cukier, S., García, R. N., Manrique, S., Liz, G. P., et al. (2021) · Siglo Cero: Revista Española sobre Discapacidad Intelectual · doi:10.14201/scero202152e119140 · Cited by 16 · see citing works
Sefotho, M. M., & Onyishi, C. N. (2021) · Perspectives in Education · doi:10.18820/2519593x/pie.v39.i2.20 · Cited by 14 · see citing works
Ramseur, K., de Vries, P. J., Guler, J., Shabalala, N., Seris, N., & Franz, L. (2019) · Pediatric Medicine · doi:10.21037/pm.2019.03.04 · Cited by 15 · see citing works
“There is limited literature on caregiver-child interactions, particularly when the child has a developmental delay or disability, in sub-Saharan Africa (3).”
BackgroundSelf-citationA grassroots investigation of ASD knowledge and stigma among teachers in Luang Prabang, Lao PDR
Low, H. M., Wong, T. P., Lee, L. W., Makesavanh, S., Vongsouangtham, B., Phannalath, V., San, S., Ahmad, A. C., & Lee, A. S. S. (2020) · Research in Autism · doi:10.1016/j.rasd.2020.101694 · Cited by 15 · see citing works
Rieder, A. D., Viljoen, M., Seris, N., Shabalala, N., Ndlovu, M., Turner, E. L., Simmons, R., de Vries, P. J., & Franz, L. (2023) · Child and Adolescent Psychiatry and Mental Health · doi:10.1186/s13034-023-00611-0 · Cited by 15 · see citing works
“Although 95% of the global population of children and adolescents reside in LMIC, only 10% of mental health research - and even less on neurodevelopmental conditions—has been conducted in these settings [3, 4, 6].”
BackgroundSelf-citationKatakis, P., Estrin, G. L., Wolstencroft, J., Sayani, S., Buckley, E., Mirzaei, V., Heys, M., & Skuse, D. (2023) · Review Journal of Autism and Developmental Disorders · doi:10.1007/s40489-023-00408-z · Cited by 14 · see citing works
“This would particularly benefit families living in LMICs or rural areas, where professionals qualified to administer ‘gold standard’ tools are limited (Sukiennik et al., 2022).”
InfluentialOdunsi, R., Preece, D., & Garner, P. (2017) · Disability CBR & Inclusive Development · doi:10.5463/dcid.v28i3.637 · Cited by 14 · see citing works
“Research into ASD in Nigeria in particular, and Sub-Saharan Africa in general, has been identified as being limited (Franz et al, 2017), and has largely been undertaken within a medical or healthcare context.”
BackgroundResultInfluentialPicture of Autism Spectrum Disorder (ASD) Research in West Africa—A Scoping Review
Bakare, M. O., Onu, J. U., Bello-Mojeed, M. A., Okidegbe, N., Onu, N. N., & Münir, K. (2021) · Research in Autism · doi:10.1016/j.rasd.2021.101888 · Cited by 14 · see citing works
Adaptation and validation of two autism-related measures of skills and quality of life in Ethiopia
Borissov, A., Bakolis, I., Tekola, B., Kinfe, M., Ceccarelli, C., Girma, F., Abdurahman, R., Zerihun, T., Hanlon, C., & Hoekstra, R. A. (2021) · Autism · doi:10.1177/13623613211050751 · Cited by 14 · see citing works
“…with large knowledge gaps in many areas of research, such as prevalence and risk factors (Abubakar et al., 2016), the influence of culture and context on identification and diagnosis (de Leeuw et al., 2020) and what types of interventions may work best in low-resource settings (Franz et al., 2017).”
BackgroundNamuli, J. D., Nakimuli‐Mpungu, E., Mwesiga, E. K., & Joyce, N. S. (2020) · PubMed · Cited by 14 · see citing works
Bastable, K., Klopper, S., Samuels, A. E., & Dada, S. (2021) · American Journal of Speech-Language Pathology · doi:10.1044/2020_ajslp-20-00182 · Cited by 13 · see citing works
Awareness and risk factors of autism spectrum disorder in an Egyptian population
Meguid, N. A., Nashaat, N. H., Elsaeid, A., Peana, M., Elnahry, A., & Bjørklund, G. (2021) · Research in Autism · doi:10.1016/j.rasd.2021.101781 · Cited by 13 · see citing works
Vorster, C., Kritzinger, A., Coetser, L. E., & van der Linde, J. (2021) · South African Journal of Communication Disorders · doi:10.4102/sajcd.v68i1.831 · Cited by 12 · see citing works
Segre, G., Cargnelutti, C., Bersani, C., Njogu, W., Roberti, E., Campi, R., Vita, M. V. D., Morino, G., Canevini, M. P., & Bonati, M. R. (2023) · BMJ Paediatrics Open · doi:10.1136/bmjpo-2023-002117 · Cited by 14 · see citing works
The Evolution of Services for Children with Autism and Developmental Disabilities in Nigeria
Hill, D. A., Fayemi, A., & Ostrowski, S. R. (2024) · International Journal of Disability Development and Education · doi:10.1080/1034912x.2023.2291570 · Cited by 11 · see citing works
“Consistent accreditation bodies, standardisation of curriculum, private vs public schools, discriminate allocation of resources, availability of relevant special education courses at the higher education level were topics explored and addressed by Franz, Chambers, von Isenburg, and deVries (2017).”
InfluentialDigitalization and Exclusion—Digital Divides and Development
Shaban, A. (2024) · Springer eBooks · doi:10.1007/978-981-97-4734-4_4 · Cited by 11 · see citing works
Understanding daily parenting stresses in caring for children with autism spectrum disorders
Simelane, A. P. (2020) · South African Journal of Child Health · doi:10.7196/sajch.2020.v14i3.1596 · Cited by 11 · see citing works
“Franz et al.[32] note that population-based prevalence studies are absent in sub-Saharan Africa, but suggest that the SA incidence could be comparable to global statistics.”
BackgroundResultAdams, S. N., Seedat, J., & Neille, J. (2022) · Child Care Health and Development · doi:10.1111/cch.12996 · Cited by 12 · see citing works
Pillay, S., Duncan, M., & de Vries, P. J. (2022) · Frontiers in Psychiatry · doi:10.3389/fpsyt.2022.907093 · Cited by 11 · see citing works
“In a scoping review of all autism research in sub-Saharan Africa, Franz and colleagues identified that less than 1% of the world’s autism research had taken place in Africa, and that no studies had examined health or education systems for children with autism (15).”
BackgroundFeasibility of utilizing autism navigator® for primary care in South Africa
Chambers, N. J., de Vries, P. J., Delehanty, A. D., & Wetherby, A. M. (2018) · Autism Research · doi:10.1002/aur.2018 · Cited by 10 · see citing works
“It is also important to consider whether the early detection and referral approach advocated in the course can be appropriately implemented within current health and education service delivery models [Guler, de Vries, Seris, Shabalala, & Franz, 2017].”
BackgroundResultSelf-citationPerceptions of autism spectrum disorder among the Swahili community on the Kenyan coast
Greer, J. M. H., Sood, S. S. M., & Metcalfe, D. (2022) · Research in Developmental Disabilities · doi:10.1016/j.ridd.2022.104370 · Cited by 11 · see citing works
Baloyi, O. B., Jarvis, M. A., Chironda, G., Mbeje, P. N., Ngcobo, S. J., Gqaleni, T. M., Mhlongo, E. M., Cele, W. B., & Brysiewicz, P. (2024) · Nursing and Health Sciences · doi:10.1111/nhs.13123 · Cited by 9 · see citing works
Appiah, S., & Osei, E. A. (2023) · International Journal of Africa Nursing Sciences · doi:10.1016/j.ijans.2023.100536 · Cited by 9 · see citing works
Autism spectrum disorder in a rural community in Bangladesh: A mid‐childhood assessment
Ali, H., Rahman, H., Lee, L., Khan, N. Z., Wu, L. S., Mehra, S., Mitra, M., Labrique, A. B., West, K. P., & Christian, P. S. (2021) · Autism Research · doi:10.1002/aur.2651 · Cited by 10 · see citing works
“(Franz et al., 2017) In South Asia, a similar situation prevails; few community-based studies with varied methodology (Chauhan et al.”
BackgroundGuler, J., Stewart, K. A., de Vries, P. J., Seris, N., Shabalala, N., & Franz, L. (2022) · Autism · doi:10.1177/13623613221117012 · Cited by 9 · see citing works
“For example, a recent estimate suggested that 1% of autism research has been conducted in sub-Saharan Africa (Franz et al., 2017).”
BackgroundSelf-citationValidation of the social communication questionnaire amongst Nigerian adolescents
Nwokolo, E. U., Murphy, G. H., & Langdon, P. E. (2023) · Autism Research · doi:10.1002/aur.3038 · Cited by 8 · see citing works
“…practice; however, this has not been the norm in Nigeria, as most individuals with ASD are not diagnosed until after 5 years of age, and many are never diagnosed (Franz, Chambers, von Isenburg & de Vries, 2017; Bello-Mojeed, Bakare & Munir, 2013; Bello-Mojeed, Omigbodun, Bakare & Adewuya, 2017).”
BackgroundPillay, S., Duncan, M., & de Vries, P. J. (2022) · Autism · doi:10.1177/13623613221142111 · Cited by 8 · see citing works
“In South Africa, there is an urgent need for attention to policy design and implementation (de Vries, 2016; Franz et al., 2017, 2018; Pillay et al., 2021, 2022).”
BackgroundInfluentialFamily Roles in Developing Resilience Skills in School Children with Autism Spectrum Disorders
Onyishi, C. N., & Sefotho, M. M. (2019) · Global Journal of Health Science · doi:10.5539/gjhs.v11n14p81 · Cited by 8 · see citing works
Explaining parents’ experiences of raising children with autism spectrum disorders in Lesotho
Mosia, P. A., & Tseeke, M. (2021) · African Identities · doi:10.1080/14725843.2021.2018990 · Cited by 8 · see citing works
“With approximately one in every 160 persons living with ASD, the syndrome is recognised by World Health Organisation as a global health concern (Abubakar et al., 2016; Franz et al., 2017).”
BackgroundInfluentialShehata, L. A. O., Ibrahim, O., Elkammash, T., & Gad, A. A. (2023) · The Egyptian Journal of Radiology and Nuclear Medicine · doi:10.1186/s43055-023-00985-3 · Cited by 8 · see citing works
Experiences of siblings of individuals with autism spectrum disorders
Oti-Boadi, M., Yendork, J. S., Omari, E. B., & Oppong, S. A. (2023) · International Journal of Developmental Disabilities · doi:10.1080/20473869.2023.2246764 · Cited by 7 · see citing works
“These figures may represent an underestimation since prevalence of ASD on the African continent and other low and lower-middle-income countries (LMICS) are equivocal (Bakare and Munir, 2011, Franz et al. 2017, WHO, 2013).”
Pillay, S., Duncan, M., & de Vries, P. J. (2024) · Child and Adolescent Mental Health · doi:10.1111/camh.12704 · Cited by 7 · see citing works
The Experiences of Families Raising an Autistic Child: A Rapid Review
Phetoe, B. K., Coetzee, H., Erasmus, P., & Tsabedze, W. F. (2023) · The Open Psychology Journal · doi:10.2174/18743501-v16-e230419-2022-100 · Cited by 7 · see citing works
Brian, J. A., Dowds, E., Bernardi, K., Velho, A., Kantawalla, M., & de Souza, N. (2024) · Frontiers in Rehabilitation Sciences · doi:10.3389/fresc.2024.1214009 · Cited by 7 · see citing works
“While most interventions have been developed in high-income countries [with only 5% having been developed in Africa, South America, or India (7)], there remains a limited but growing understanding of the transportability of western-developed interventions for use in LMICs (8).”
BackgroundGenovesi, E., Yao, Y. I., Mitchell, E., Arad, M., Diamant, V., Panju, A., Hanlon, C., Tekola, B., & Hoekstra, R. A. (2024) · International Journal of Mental Health Systems · doi:10.1186/s13033-024-00627-9 · Cited by 10 · see citing works
“This finding mirrors the burgeoning research field on DD in LMIC, where research is steadily growing, but as yet is still concentrated in specific LMICs (Franz et al. 2017) [39] For a few resources, peer-reviewed articles reporting evaluation studies were available.”
BackgroundChildhood autism spectrum disorder: insights from a tertiary hospital cohort in Kenya.
Samia, P., Kanana, M., King, J. N., Donald, K. A., Newton, C. R. J. C., & Denckla, C. A. (2020) · PubMed · Cited by 7 · see citing works
Snyman, C., van Eeden, C., & Heyns, M. M. (2023) · South African Journal of Childhood Education · doi:10.4102/sajce.v13i1.1311 · Cited by 7 · see citing works
“…Gray’s social stories, the picture exchange communication system (PECS), and treatment and education of autistic and related communication handicapped children (TEACCH) (Bejarano-Martín et al. 2020; Francis 2005; Franz et al. 2017; Makombe et al. 2019; Steinbrenner et al. 2020; Weiss et al. 2008).”
BackgroundTadesse, H., Desie, Y., Zeleke, W., & Habtamu, K. (2024) · International Journal of Adolescence and Youth · doi:10.1080/02673843.2024.2436058 · Cited by 6 · see citing works
“Studies have noted the critical need for ASD research and psychosocial intervention in LMIC contexts (Cherewick et al., 2023; Franz et al., 2017) in general and in Ethiopia in particular (Burton, 2016; Tekola et al., 2016, 2020; Zeleke et al., 2020; Zeleke, Chitiyo, et al., 2018).”
Young Children with Autism Spectrum Disorder in Early Education and Care
Maich, K., Davies, A., Penney, S., Butler, E., Young, G. D., & Philpott, D. (2019) · Exceptionality Education International · doi:10.5206/eei.v29i3.9388 · Cited by 6 · see citing works
Franz, L., Viljoen, M., Askew, S., Brown, M., Dawson, G., Martino, J. M. D., Sapiro, G., Sebolai, K., Seris, N., Shabalala, N., et al. (2024) · PLoS ONE · doi:10.1371/journal.pone.0291883 · Cited by 7 · see citing works
Self-citationDawson-Squibb, J.-J., & de Vries, P. J. (2020) · Autism · doi:10.1177/1362361320942988 · Cited by 6 · see citing works
“…in low-resource environments where PET may be especially empowering to families, we set out to perform a head-tohead comparison of two PET programmes with lowresourced families in South Africa, where little research on ASD has been performed to date (de Vries, 2016; Franz et al., 2017).”
MethodNwokolo, E. U., Murphy, G. H., Mensink, A., Moonen, X., & Langdon, P. E. (2023) · Journal of Policy and Practice in Intellectual Disabilities · doi:10.1111/jppi.12466 · Cited by 5 · see citing works
Evaluation of the Psychometric Properties of the Social Communication Questionnaire in Rural Kenya
Kipkemoi, P., Savage, J. E., Gona, J., Rimba, K., Kombe, M. Z., Mwangi, P. M., Kipkoech, C., Danielle Posthuma, B., Newton, C. R. J. C., & Abubakar, A. A. (2024) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-024-06380-9 · Cited by 5 · see citing works
“The prevalence estimate of autism in Kenya and much of Africa is not well known, hindering proper care and intervention planning (Abubakar et al., 2016; Franz et al., 2017; Ruparelia et al., 2016).”
- Authors
- Franz, L., Chambers, N., von Isenburg, M., & de Vries, P. J.
- Affiliations
- Duke University (US)
- University of Cape Town (ZA)
- Medical Center Library, Duke University Durham North Carolina
- Division of Child and Adolescent Psychiatry University of Cape Town Cape Town South Africa
- Venue
- Autism Research
- Publisher
- Wiley
- Published
- 2017-03-07
- Volume
- 10
- Issue
- 5
- Pages
- 723-749
- ISSN
- 1939-3792 (ISSN-L)
- 1939-3806
- PMC
- PMC5512111
- OpenAlex
- W2594393242
- Cited by
- 189
- References
- 130
- Citations by year
- 2026: 20 · 2025: 17 · 2024: 24 · 2023: 25 · 2022: 25 · 2021: 29 · 2020: 23 · 2019: 12 · 2018: 9 · 2017: 5
- FWCI
- 1.50
- Type
- journal article
- Language
- en
- Open access
- green
- europepmc.org
- Locations
- Autism Research (publishedVersion)
- PubMed (publishedVersion)
- Europe PMC (PubMed Central) (acceptedVersion)
- PubMed Central (acceptedVersion)
- Funders
- National Research Foundation
- University of Capetown
- National Institute of Mental Health (K01‐MH‐104370)
- Duke Global Health Institute, Duke University
- Topics
- Life Sciences › Neuroscience › Cognitive Neuroscience › Autism Spectrum Disorder Research
- Social Sciences › Psychology › Clinical Psychology › Family and Disability Support Research
- Health Sciences › Medicine › Psychiatry and Mental health › Child Nutrition and Feeding Issues
- Keywords
- autism spectrum disorder, sub-Saharan Africa, knowledge gaps, ASD risk factors, parental attitudes, social cognitive neuroscience
- MeSH terms
- Autism Spectrum Disorder, Brain, Child, Child, Preschool, Humans, Longitudinal Studies, Male, Organ Size, Phenotype, Reference Values, Risk Factors, Cohort Studies, Africa South of the Sahara, Body Size, Megalencephaly
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