Behavioural Neurology / 2016 / Article / Tab 1

Review Article

A Systematic Review of Research on Autism Spectrum Disorders in Sub-Saharan Africa

Table 1

A summary of empirical studies from sub-Saharan Africa.

First authorYearCountrySample description Summary of results

Adaptation and validation of screening and diagnostic tools

1Chambers [14]2016South Africa26 children (15 children with no reported developmental concerns and 11 referred for suspected autism spectrum disorder)Several measures such as early screening for autism and communication disorders and the systematic observation of red flags were translated, adapted, and evaluated for potential use among isiZulu speakers in South Africa. It was observed that children with autism presented with significantly more red flags than those without ASD. According to the authors, these results provided initial evidence that the measures are feasible for use in isiZulu speakers in South Africa.

2Smith [15]2016South Africa47 children and their caregiversThe study examined the potential impact of cultural factors on the use of Autism Diagnostic Observation Schedule-2 administration in South Africa. The authors noted potential linguistic and semantic related biases which led to the development of guidelines for using ADOS in their setting.

3Harrison [16]2014Tanzania41 children referred to psychiatric clinicsInitial results indicated that an observational approach utilizing the Childhood Autism Rating Scales may present a potentially sensitive approach to autism diagnosis in an African setting.

4aKakooza-Mwesige [17]2013Uganda1169 children in a community surveyThe study modified and extended the Ten-Question Questionnaire so as to be used to screen for ASD and other neurodevelopmental disorders in Uganda.

Prevalence

5Lagunju [18]2014Nigeria2,320 patients were seen at a paediatric neurological clinic and 54 of them had ASDThe study reported 2.3% ASD prevalence.

4bKakooza-Mwesige [17]2013Uganda1169 children in a community surveyAn unadjusted prevalence rate of 6.8/1000 was reported.

6Bakare [19]2012Nigeria44 children had intellectual disability and 5 of them had ASDFive (11.4%) of the children studied met the diagnostic criteria for childhood autism. Male/female ratio was 4 : 1.

7Lotter [6] 19786 African countries1312 were surveyed at psychiatric hospitals, schools for children with special needs, daycare centres, and homes for motherless babies and 30 met the criteria for ASDThe study observed quite a number of similarities in the presentation of ASD in African children compared to British children (e.g., higher prevalence among boys and its existence across a wide range of IQ). Additionally, the authors also observed marked differences in the prevalence of certain symptoms such as lower rates in occurrence of ritualistic and repetitive behaviour.

Risk factors and markers

8Ezegwui [20]2014Nigeria21 children with ASDSignificant refractive error, mainly astigmatism, was noted in the children with autism.

9Sharma [21]2013South Africa136 children with ASD and 208 controlsThe aim of the study was to find the genetic association of intronic rs736707 and exonic rs362691 (single-nucleotide polymorphisms [SNPs] of the RELN gene) with autism in a SA population. A significant association of SNP rs736707, but not for SNP rs362691, with autism in the SA population was observed.

10Arieff [22]2010South Africa109 children with ASDAllele frequencies and genotypes of the South African autistic populations (African, mixed, and Caucasian) were compared with matching South African ethnic control populations. The study showed significant differences in allele and genotype frequencies of 5-HTTLPR polymorphic region and provides impetus for investigating the role of transmission of the L and S alleles in families with autism in South Africa.

11Bakare [23]2008NigeriaOne child with ASDObserved ASD in a child with oculocutaneous albinism.

12Claassen [24]2008South AfricaA pair of twin siblings (1 had infantile autism; the other is a control)Using data from a dizygotic set of twins, the author concluded that prenatal stress may be a salient contributor to the pathogenesis of autism.

13Mankoski [11]2006Tanzania20 children recruited from a special needs primary school and from families having a child with clinically diagnosed autismThe study aimed at investigating the association between malaria and autism. Using a case series approach, the study observed 14 children who met the criteria for ASD among whom 3 had onset of autism after recovery from malaria and 4 cases had a temporal relationship between ASD and malaria though it seemed spurious, while in seven cases the onset of ASD was unrelated to malaria.

Psychosocial aspects

14Schlebusch [25]2016South Africa180 families of children with ASDIn families where there was higher frequency of regular family routines, there was also a higher satisfaction level of family quality of life (FQOL). Moreover, the cognitive appraisal of impact of ASD mediated the relationship between family routines and FQOL.

15Tilahun [26]2016EthiopiaParticipants comprised caregivers () of children with developmental disorders: 66.7% () had a diagnosis of intellectual disability while 34 children (33.3%) had ASD as their primary diagnosisStigma was commonly reported (43.1%) by participants. Moreover, a significant number were ashamed of their children and some made an effort to keep their children’s condition a secret. Caregivers gave a mixture of biomedical explanations (e.g., head injury (30.4%) or birth complications (25.5%)) and supernatural explanations (e.g., spirit possession (40.2%) or sinful act (27.5%)) for their child’s condition. The biggest reported unmet need was educational provision for their child (74.5%), followed by treatment by a health professional (47.1%). Many caregivers also used support from friends (76.5%) and prayer (57.8%) as coping mechanisms.

16Harrison [27]2016Tanzania44 Tanzanian families of children diagnosed with ASD or general developmental delays (12 families in phase I and 29 in phase II)The study focuses on the development of an intervention designed to inform parents about ASD and empirically supported behavioural strategies.

17Majoko [28]2016Zimbabwe21 regular teachers with experience in teaching children with ASDThis study examined barriers to including children with ASD in mainstream classes in Zimbabwe. Some of the key barriers were social rejection, communication impairments, and behavioural challenges of children with ASD. The authors proposed further training for regular teachers, collaborations with stakeholders, and enhanced social support services as strategies for encouraging inclusion of children with ASD.

18Gona [29]2016Kenya103 participants (60 parents of children with ASD and 43 professionals)The study examined the challenges and coping strategies of parents of children with ASD. Some of the common challenges included stigma, lack of appropriate health services, and financial and heavy caregiver burden. Coping strategies applied by parents comprised problem-focused aspects that involve diet management and respite care and emotion-focused aspects that consist of beliefs in supernatural powers, prayers, and spiritual healing.

19Meiring [30]2016South Africa14 (7 parents and 7 professionals)The study examined some of the challenges experienced by adolescents transitioning into adulthood highlighting some of the challenges such as lack of planning and the absence of service facilities for adolescents with autism after school. Other issues arising from the study included feelings of fear and uncertainty. It was also noted that this was a challenging and stressful time for parents and professionals alike.

20Van Biljon [31]2015South AfricaRetrospective review of 141 children diagnosed with ASD attending a special needs school comparing two periods: 1992–2002 and 2003–2014No significant differences in age of onset of autistic symptoms, diagnosis, sex ratio, and person who referred the child to the school.
More children were likely to attend nursery schools prior to starting at the special needs school.

21Pileggi [32]2015South Africa93 children with typical developing, intellectual disability, and ASDThe researchers investigated the side of cradling infants and observed that typically developing children and children with intellectual disability had a bias towards left side cradling while children with ASD did not have this bias. They attributed the lack of left side cradling bias in children with ASD to deficits in social-affective attachment.

22Bakare [33]2015Nigeria757 final year medical studentsThese students had high mean scores indicating a fairly good knowledge of ASD although there were still important knowledge gaps observed.

23Gona [34]2015Kenya103 parents of children with ASD, special needs teachers, clinicians, and social workersPreternatural causes were mentioned and included evil spirits, witchcraft, and curses. Biomedical causes comprised infections, drug abuse, birth complications, malnutrition, and genetic related problems. Treatment varied from traditional and spiritual healing to modern treatment in health facilities and included consultations with traditional healers, offering prayers to God, and visits to hospitals.

24Eseigbe [35]2015Nigeria167 medical doctorsThe study aimed at evaluating the knowledge of ASD among healthcare providers and identifying challenges associated with its management. This was done using a self-administered tool, the Knowledge about Childhood Autism among Health Workers (KCAHW) questionnaire. It was observed that paediatricians and psychiatrists had a better knowledge of ASD. The highest knowledge gap was associated with onset of ASD and its comorbidities while the least one was concerning communication impairments. Some of the major challenges encountered in ASD management were the dearth of specialist services, cost of evaluation, and poor caregiver perspectives of ASD.

25Mitchell [36]2014South Africa7 parents of children with ASDThe study highlights the difficulties parents face in getting their children diagnosed with ASD partly due to the reluctance of professionals to label children as having ASD.

26Hoogenhout [37]2014South Africa86 children with ASD The study observed that children who experienced high-functioning ASD, Asperger’s syndrome, and PDD-NOS displayed delayed Theory of Mind (ToM) onset compared to a typically developing group (), but normal ToM developmental rates and sequences.

27Louw [38]2013South Africa65 children with ASDA high frequency of medication, at least 24.6% of the sample, was noted in the group; additionally, around 40% of the sample reported using complementary and alternative therapies.

28Springer [39]2013South Africa58 children with pervasive developmental disorderThe study aimed at describing the demographics, history, clinical features, comorbidity, and yield of aetiological investigations in children diagnosed with a pervasive developmental disorder. The authors observed that the median age at diagnosis was 42 months. Forty percent had complex autism (dysmorphism with or without microcephaly), and 12.1% were macrocephalic. Moreover, there was high prevalence of behavioural problems (89%) and a significant proportion of the children (72.4%) were nonverbal.

29Alant [40]2013South Africa22 children with ASD from a school for individuals with ASD in South AfricaThe aim of this investigation was to describe the translucency ratings of graphic symbols by a group of children with autism over repeated exposures. Although the difference between ratings on days 1 and 3 was statistically significant (medium effect size), this difference represents an overall pattern rather than significant differences on ratings of specific symbols.

30Pileggi [41]2013South Africa40 children (20 children with ASD and 20 typically developing children)This study investigated relations among empathy and cradling bias in children diagnosed with autism spectrum disorders (ASDs). It was reported that children with ASD did not show cradling bias and it was concluded that the results support the hypothesis that leftward cradling characterized enhanced quality of caregiver-infant interaction and bonding.

31Grinker [42]2012South Africa/South KoreaFrom South Korea: 47 participants (parents of children with ASD and teachers from regular and special education schools)
From South Africa: unspecified number of clinicians, parents, daycare centre managers, traditional healers, and managers of children’s homes participated
It was observed that, both in South Africa and in Korea, ASD was underdiagnosed and hardly ever reported in clinical or educational records. Additionally, both settings experienced limited resources for families of children with ASD. To be able to set up a successful programme of research, the authors heavily depended on local knowledge to solve some of the practical problems experienced.

32Igwe [43]2011Nigeria80 health workers (40 paediatric and 40 psychiatric nurses)The authors examined knowledge about childhood ASD among paediatric and psychiatric nurses and observed a deficit in ASD knowledge among these professionals.

33Kapp [44]2011South Africa19 mothers of children with ASDThe study investigated the challenges of families with children with ASD and factors that promote resilience in these families. Some of the factors identified as promoting resilience included having a supportive family, good spousal relationship, and adequate approaches to problem-solving within the family.

34Greeff [45]2010South Africa34 parents of children with ASDThe authors investigated the factors conveying resilience in families of children with ASD and observed that higher social economic status (SES), social support, and a supportive home environment were some of the factors that contributed to resilience in the context of ASD.

35Travis [46]2010South Africa2 children with ASDThe study reports enhanced communication abilities among children with ASD who have undergone an intervention using the Picture Exchange Communication System.

36Igwe [47]2010Nigeria300 final undergraduate studentsThe study aimed to evaluate how much undergraduate students knew about autism in Nigeria. Results indicated that medical students were the most knowledgeable and that attendance on psychiatry and paediatric wards significantly enhanced knowledge of ASD.

37Bakare [48]2009Nigeria134 health workersThe study noted that a significant percentage of healthcare workers in Nigeria still held negative or false beliefs on the aetiology, treatability, and preventability of ASD, leading to the conclusion that part of the efforts to improve services for families of children with ASD need to focus on improving knowledge among healthcare providers.

38Olivier [49]2009South Africa8 parents of children with ASDThe study reported that some of the key challenges faced by parents of children with ASD include the denial of the diagnosis, lacking proper guidance having received the diagnosis, and a lack of adequate parenting and coping skills among other challenges.

39Bakare [50]2009Nigeria134 health workersThis study assessed the baseline knowledge about childhood ASD and opinion among Nigerian healthcare workers on availability of facilities and law caring for the needs and rights of children with childhood ASD and other developmental disorders. The workers had a moderate amount of knowledge of childhood ASD; the most salient knowledge gaps were about symptoms of obsessive behaviour and those of impairments in social interaction.

40Bakare [51]2008Nigeria50 psychiatric nursesThe study aimed to examine the psychometric properties of the Knowledge about Childhood ASD among Health Workers questionnaire. It was observed that the measure had excellent internal consistency and adequate test-retest reliability.

41Geils [52]2008South Africa One child with ASDThis case study carried out a conversational analysis of the conversations between the participant and his/her coparticipants with the aim of understanding some of the potentially useful points of intervention to enhance communication skills among children with ASD.

42Akande [53]2000South Africa3 children with ASDThis study investigated colour learning and observed the need for a highly individualized approach to teaching children with ASD since the authors observed a significant variability in the approach to learning.

43Akande [54]1999South Africa7 children with ASDThis study evaluated the efficacy of the “self-monitoring intervention” and observed that the success rates were very similar to what has been reported in other parts of the world.

44Khan [7]1996Zimbabwe18 childrenThe authors noted that, in the Zimbabwean context, the DSM III-R categories were supported by empirical evidence. However, they recommended the inclusion of characteristics such as abnormal responses to sensory stimuli and disturbances to cater for nonclassical autism.

45Dhadphale [55]1982Kenya3 children with infantile ASDThe study noted that there were no differences in features of childhood ASD presented by the 3 Kenyan children when compared to what has been described in the west.

46Noach [56]1974South Africa8 (4 children with ASD and 4 typically developing children)Children with ASD were observed to present with impairments in concept formation.

47Silver [57]1970South AfricaOne Child with ASDThis study illustrates how operant conditioning can be used to teach a child with ASD a few words.