Review Article A Systematic Review of Research on Autism...

Review ArticleA Systematic Review of Research on Autism SpectrumDisorders in Sub-Saharan Africa

Amina Abubakar,1,2,3 Derrick Ssewanyana,1 and Charles R. Newton1,2

1Kenya Medical Research Institute-Wellcome Trust Collaborative Programme, Kilifi, Kenya2Department of Psychiatry, University of Oxford, Oxford, UK3Department of Public Health, Pwani University, Kilifi, Kenya

Correspondence should be addressed to Amina Abubakar; [email protected]

Received 6 August 2016; Accepted 20 September 2016

Academic Editor: Barbara Picconi

Copyright © 2016 Amina Abubakar et al. This is an open access article distributed under the Creative Commons AttributionLicense, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properlycited.

The burden of autism spectrum disorders (ASDs) in sub-Saharan Africa (SSA) is not well known. We carried out a systematicreview of the literature to identify published work from SSA. We have systematically searched four databases, namely, Medline,PsycINFO, CINAHL, and Child Development &Adolescent Studies, through EBSCO and identified studies from across SSA. Basedon predefined inclusion criteria, 47 studies were included in this review. Most of the identified studies (74%) were conducted inonly 2 African countries, that is, South Africa and Nigeria. Additionally, most of these studies (83%) were carried out in the lastdecade. These studies had four major themes: development of measurement tools of ASD in Africa, examining the prevalence ofASD, identifying risk factors and riskmarkers, and examining psychosocial issues.We identified only a single population level studyaimed at documenting the prevalence ofASDand could not identify a single case-control study aimed at examining a comprehensiveset of potential risk factors. All intervention studies were based on very small sample sizes. Put together, our findings suggest thatcurrent evidence base is too scanty to provide the required information to plan adequately for effective intervention strategies forchildren with ASD in Africa.

1. Introduction

Autism spectrum disorders (ASDs) are a neurodevelop-mental syndrome with growing global health concern. Thissyndrome is characterized by deficits in social and commu-nication skills and restricted and repetitive behaviour; andthese adversely impact quality of life of those affected aswell as their families [1]. Globally, one in every 160 personsis estimated to live with ASD, contributing to 7.6 milliondisability life adjusted years [2]. However, this burden iscurrently underestimated since prevalence of ASD in theAfrican region and other low or middle income regions isstill unclear [2–4]. One study, for example, that involvedtwo North African countries documented a high frequencyof ASD at 11.5% and 33.6% among African children withdevelopmental disorders [5]. Other studies conducted amongchildren of African descent have reported high occurrence ofASD [6–8] although their representativeness is questionable

[9]. Similarly, studies on ASD document a large burdenof nonverbal ASD cases (50−71%) and over 60% comorbidintellectual disability among African children with ASD [10,11]. These and other distinctive traits of ASD in Africa suchas a potential infectious aetiology, late diagnosis, and poormanagement [2, 3, 12] accentuate the need for more researchfocus and public health response in this region.

Having gone past the prior dialogue questioning theuniversality of ASD [13], growing interest in ASD in Africa iscurrently documented by the increasing number of scientificstudies on this condition in the continent [4, 9]. There havebeen a few reviews synthesizing the data on ASD fromAfrica [4, 9]; however, most of them were performed yearsago, used a single bibliographic search, or did not utilizea systematic review. Although these earlier reviews provideinteresting insights, there is a need to update and synthesizethe most recent empirical evidence so as to identify researchgaps and potential points of interventions. Of major interest

Hindawi Publishing CorporationBehavioural NeurologyVolume 2016, Article ID 3501910, 14 pageshttp://dx.doi.org/10.1155/2016/3501910

2 Behavioural Neurology

is a clearer understanding of the current direction of ASDresearch in Africa (e.g., the focus on risk factors, prevalence,or interventions), identifying where in Africa ASD researchis emanating as well as the key findings from ASD researchin the African region. This current systematic review buildsupon this backdrop by exploring ASD research in the sub-Saharan African (SSA) region over the past 50 years. Wehope that this systematic reviewwill avail relevant evidence tosupport and guide research, intervention, and policy on ASD,especially in the SSA region.

2. Methods

2.1. Search Strategy. Guidelines for preferred reporting itemsfor systematic reviews and meta-analyses (PRISMA) wereutilized [58]. We searched four databases, that is, Medline(1935 to June 2016), PsycINFO (1935 to June 2016), CINAHL(1935 to June 2016), and Child Development & AdolescentStudies (1935 to June 2016), through EBSCO. The searchterms usedwere “Autism”OR “Autistic”OR “Pervasive”AND“Africa”. Our database searchwas restricted to peer-reviewedarticles and excluded dissertations. We further searched thereference lists of retrieved articles as well as the GoogleScholar database for other potentially relevant studies thatmay have been missed from the systematic database search.

2.2. Criteria for Inclusion and Exclusion. We set out thefollowing inclusion criteria:

(1) The study must be an empirical study on ASD con-ducted among humans.

(2) ASD must be the main condition of study.(3) The study populations need to be from SSA and the

study needs to be carried out in SSA.

We excluded studies that (i) were not empirical, (ii) wereconducted in countries other than those from SSA, and (iii)did not consider ASD as the main disorder of interest.

2.3. Data Extraction and Analysis. One data extraction sheetwas used to summarize the data in Microsoft Excel spread-sheet (version 2013) on the general characteristics of thestudies and their key findings.These characteristics of interestincluded (i) author, (ii) year of publication, (iii) countrywhere the study was done, (iv) sample description, and (v)key findings. A narrative synthesis was used to summarize thefindings of eligible studies included in this systematic review.

3. Results

3.1. Summary of Study Characteristics. We identified a totalof 341 potentially eligible studies of which 47 fulfilled thecriteria. Figure 1 presents the flow chart on the number ofidentified abstracts, reasons for exclusion, and articles thatwere further considered. Table 1 presents a summary of thecharacteristics of the eligible studies and their key findings.These eligible studies were conducted in very few Africancountries (around ten).Most of these studieswere fromSouthAfrica (𝑛 = 25, 51%) and Nigeria (𝑛 = 11, 23%). Most of the

studies (𝑛 = 38, 83%) were carried out in the past decadeindicating increased interest in the area.

3.2. Screening and Diagnosis of ASD in Africa. There arefew studies that have attempted to validate screening anddiagnostic measures for use in SSA. A recent study fromUganda adapted and extended the Ten-Question Question-naire (TQQ) into a 23-item questionnaire and evaluated thesensitivity and specificity of this new tool to identify ASDalongside general “disability” [17]. It was reported that the 23-item questionnaire was modestly successful in identifying asubgroup of children at high risk of being diagnosed as havingASD. A study from Tanzania evaluated the potential use ofthe Childhood Autism Rating Scale to perform a structuredobservation to diagnose ASD [16]. In this study, the Child-hood Autism Rating Scale was culturally adapted for use inTanzania. Some of the cultural adaptations included ensuringthat the play interactions, materials used, and social routinesused to probe the child’s behaviour were familiar to thechildren. Following these adaptations, the authors reportedexcellent discriminative validity and acceptable levels ofsensitivity and specificity. Two recent studies in South Africahave also examined and evaluated the cultural adaptability ofASD measures in their context [14, 15]. The study by Smithand colleagues evaluated the cultural appropriateness of theAutism Diagnostic Observation Schedule-2 (ADOS-2) [15].Participants were requested to evaluate the cultural appro-priateness of the materials and procedures for administeringthe ADOS. They reported that most of the social interactiondemands, materials, and activities were appropriate for usein the urban samples from Cape Town. However, potentiallinguistic and semantic biases were observed and thereforeguidelines for using ADOS in their setting were developed.

3.3. Prevalence of ASD. A few studies have attempted toestimate the burden of ASD in SSA [17, 19]. However, mostof these studies used convenience sampling with data largelyfrom hospital and specialist units for children with specialneeds. For instance, a study by Lagunju and colleagues [18]recruited 2320 patients at a paediatric neurological clinic.After a systematic screening, 54 of the 2320 patients werediagnosed with ASD, with estimated prevalence of 2.3%.Additionally, it was noted that parents reported a deviation indevelopment at a mean age of 22.1 months, and they receiveda diagnosis at a mean age of 44.7 months. Among those withASD, approximately 75.5% presented with associated neuro-logical comorbidities. Only one community-based study wasidentified, in which 1169 Ugandan children aged 2–9 yearswere surveyed in the Kampala District (half urban and halfrural) and eight children had a positive diagnosis of ASD.Theauthors reported unadjusted prevalence for ASD of 6.8/1000[17]. All the studies reported higher prevalence among boyscompared to girls. Bakare et al. [19] in a study from Nigeriareported an ASD ratio of 4 : 1 for boys and girls, respectively.

3.4. Risk Markers and Risk Factors for ASD. We did not iden-tify any case-control study that examined a comprehensive setof risk factors for ASD in SSA. Small studies have identifiedspecific genetic risk markers and nongenetic risk factors for

Behavioural Neurology 3

Table1:Asummaryof

empiric

alstu

dies

from

sub-SaharanAfrica.

Firstautho

rYear

Cou

ntry

Sampled

escriptio

nSummaryof

results

Adaptatio

nandvalid

ationofscreeninga

nddiagnostictools

1Ch

ambers[14

]2016

SouthAfrica

26child

ren(15

child

renwith

norepo

rted

developm

ental

concerns

and11

referred

for

suspectedautism

spectrum

disorder)

Severalm

easuressuchas

early

screeningfora

utism

and

commun

icationdisordersa

ndthes

ystematic

observationof

redflags

weretranslated,adapted,and

evaluatedforp

otentia

luse

amon

gisiZu

luspeakersin

SouthAfrica.Itwas

observed

thatchild

renwith

autism

presentedwith

significantly

morer

edflags

than

those

with

outA

SD.A

ccording

tothea

utho

rs,these

results

provided

initialevidence

thatthem

easuresa

refeasible

foru

sein

isiZu

luspeakersin

SouthAfrica.

2Sm

ith[15]

2016

SouthAfrica

47child

renand

theirc

aregivers

Thes

tudy

exam

ined

thep

otentia

limpactof

cultu

ral

factorso

ntheu

seof

Autism

Diagn

ostic

Observatio

nSchedu

le-2

administratio

nin

SouthAfrica.Th

eautho

rsno

tedpo

tentiallinguisticandsemantic

related

biases

which

ledto

thed

evelop

mento

fguidelin

esforu

sing

ADOSin

theirsettin

g.

3Harris

on[16]

2014

Tanzania

41child

ren

referred

topsychiatric

clinics

Initialresults

indicatedthatan

observationalapp

roach

utilizing

theC

hildho

odAu

tism

Ratin

gScales

may

presenta

potentially

sensitive

approach

toautism

diagno

sisin

anAfrican

setting

.

4aKa

kooza-Mwesige[17]

2013

Ugand

a1169

child

renin

acommun

itysurvey

Thes

tudy

mod

ified

andextend

edtheT

en-Q

uestion

Question

naire

soas

tobe

used

toscreen

forA

SDand

othern

eurodevelopm

entald

isordersinUgand

a.Prevalence

5Lagunju[18]

2014

Nigeria

2,320patie

ntsw

ere

seen

atap

aediatric

neurologicalclinic

and54

ofthem

had

ASD

Thes

tudy

repo

rted

2.3%

ASD

prevalence.

4bKa

kooza-Mwesige[17]

2013

Ugand

a1169

child

renin

acommun

itysurvey

Anun

adjuste

dprevalence

rateof

6.8/1000

was

repo

rted.

6Ba

kare

[19]

2012

Nigeria

44child

renhad

intellectual

disabilityand5of

them

hadASD

Five

(11.4

%)o

fthe

child

renstu

died

metthed

iagn

ostic

criteria

forc

hildho

odautism.M

ale/femaler

atio

was

4:1.


Table1:Con

tinued.

Firstautho

rYear

Cou

ntry

Sampled

escriptio

nSummaryof

results

7Lo

tter[6]

1978

6African

coun

tries

1312

weres

urveyed

atpsychiatric

hospita

ls,scho

ols

forc

hildrenwith

specialn

eeds,

daycarec

entre

s,andho

mes

for

motherle

ssbabies

and30

metthe

criteria

forA

SD

Thes

tudy

observed

quite

anum

bero

fsim

ilaritiesinthe

presentatio

nof

ASD

inAfrican

child

rencomparedto

British

child

ren(e.g.,high

erprevalence

amon

gbo

ysandits

existence

acrossaw

ider

ange

ofIQ

).Ad

ditio

nally,the

authorsa

lsoob

served

marked

differences

inthep

revalenceo

fcertain

symptom

ssuch

aslower

ratesinoccurrence

ofritualistic

andrepetitive

behaviou

r.

Risk

factorsa

ndmarkers

8Ezegwui

[20]

2014

Nigeria

21child

renwith

ASD

Sign

ificant

refractiv

eerror,m

ainlyastig

matism

,was

notedin

thec

hildrenwith

autism.

9Sharma[

21]

2013

SouthAfrica

136child

renwith

ASD

and208

controls

Thea

imof

thes

tudy

was

tofin

dtheg

eneticassociation

ofintro

nicr

s736707andexon

icrs362691

(single-nu

cleotidep

olym

orph

isms[SN

Ps]o

fthe

RELN

gene)w

ithautism

inaS

Apo

pulation.

Asig

nificant

associationof

SNPrs736707,but

notfor

SNPrs362691,

with

autism

intheS

Apo

pulatio

nwas

observed.

10Arie

ff[22]

2010

SouthAfrica

109child

renwith

ASD

Allelefre

quencies

andgeno

typeso

fthe

SouthAfrican

autistic

popu

lations

(African,m

ixed,and

Caucasia

n)werec

omparedwith

matchingSouthAfrican

ethn

iccontrolp

opulations.Th

estudy

show

edsig

nificant

differences

inalleleandgeno

type

frequ

encies

of5-HTT

LPRpo

lymorph

icregion

andprovides

impetus

forinvestig

atingther

oleo

ftransmissionof

theL

andS

alleles

infamilies

with

autism

inSouthAfrica.

11Ba

kare

[23]

2008

Nigeria

One

child

with

ASD

ObservedASD

inac

hildwith

oculocutaneous

albinism

.

12Claassen

[24]

2008

SouthAfrica

Apairof

twin

siblin

gs(1had

infantile

autism;

theo

ther

isa

control)

Usin

gdatafro

mad

izygoticseto

ftwins,thea

utho

rconcludedthatprenatalstr

essm

aybe

asalient

contrib

utor

tothep

atho

genesis

ofautism.

13Mankoski[11]

2006

Tanzania

20child

ren

recruitedfro

ma

specialn

eeds

prim

aryscho

olandfro

mfamilies

having

achild

with

clinically

diagno

sedautism

Thes

tudy

aimed

atinvestigatingthea

ssociatio

nbetweenmalariaandautism.U

singac

ases

eries

approach,the

study

observed

14child

renwho

metthe

criteria

forA

SDam

ongwho

m3hadon

seto

fautism

after

recovery

from

malariaand4casesh

adatem

poral

relatio

nshipbetweenASD

andmalariathou

ghit

seem

edspurious,w

hilein

sevencasesthe

onseto

fASD

was

unrelated

tomalaria.


Table1:Con

tinued.

Firstautho

rYear

Cou

ntry

Sampled

escriptio

nSummaryof

results

Psychosocia

laspects

14Schlebusch

[25]

2016

SouthAfrica

180families

ofchild

renwith

ASD

Infamilies

where

therew

ashigh

erfre

quency

ofregu

lar

family

routines,there

was

also

ahighersatisfactio

nleveloffam

ilyqu

ality

oflife(FQ

OL).M

oreover,the

cogn

itive

appraisalofimpactof

ASD

mediatedthe

relatio

nshipbetweenfamily

routines

andFQ

OL.

15Tilahu

n[26]

2016

Ethiop

ia

Participants

comprise

dcaregivers

(𝑛=102)o

fchild

renwith

developm

ental

disorders:66.7%

(𝑛=68)h

ada

diagno

sisof

intellectual

disabilitywhile34

child

ren(33.3%

)hadASD

astheir

prim

arydiagno

sis

Stigmaw

ascommon

lyrepo

rted

(43.1%

)byparticipants.

Moreover,as

ignificantn

umberw

erea

sham

edof

their

child

renandsomem

adea

nefforttokeep

their

child

ren’s

cond

ition

asecret.Ca

regiversgave

amixture

ofbiom

edicalexplanations

(e.g.,head

injury

(30.4%

)or

birthcomplications

(25.5%

))andsupernatural

explanations

(e.g.,s

pirit

possessio

n(40.2%

)orsinfulact

(27.5

%))fortheirchild

’scond

ition

.Theb

iggestrepo

rted

unmetneed

was

educationalprovisio

nfortheirchild

(74.5%

),follo

wed

bytre

atmentb

yah

ealth

professio

nal

(47.1%).Manycaregiversalso

used

supp

ortfrom

friend

s(76.5%

)and

prayer

(57.8

%)a

scop

ingmechanism

s.

16Harris

on[27]

2016

Tanzania

44Tanzanian

families

ofchild

ren

diagno

sedwith

ASD

orgeneral

developm

ental

delay

s(12

families

inph

aseI

and29

inph

aseII)

Thes

tudy

focuseso

nthed

evelo

pmento

fan

interventio

ndesig

nedto

inform

parentsa

bout

ASD

and

empiric

allysupp

ortedbehaviou

ralstrategies.

17Majoko[28]

2016

Zimbabw

e

21regu

larteachers

with

experie

ncein

teaching

child

ren

with

ASD

Thisstu

dyexam

ined

barriersto

inclu

ding

child

renwith

ASD

inmainstre

amcla

sses

inZimbabw

e.Someo

fthe

keybarriersweres

ocialrejectio

n,commun

ication

impairm

ents,

andbehaviou

ralchallenges

ofchild

ren

with

ASD

.Thea

utho

rsprop

osed

furthertrainingfor

regu

larteachers,collabo

ratio

nswith

stakeholders,and

enhanced

socialsupp

ortservicesa

sstrategiesfor

encouraginginclu

sionof

child

renwith

ASD

.


Table1:Con

tinued.

Firstautho

rYear

Cou

ntry

Sampled

escriptio

nSummaryof

results

18Gon

a[29]

2016

Kenya

103p

articipants(60

parentso

fchildren

with

ASD

and43

professio

nals)

Thes

tudy

exam

ined

thec

hallenges

andcoping

strategieso

fparentsof

child

renwith

ASD

.Som

eofthe

common

challenges

inclu

dedstigm

a,lack

ofapprop

riatehealth

services,and

financialandheavy

caregiverb

urden.

Cop

ingstrategies

appliedby

parents

comprise

dprob

lem-fo

cusedaspectsthatinvolve

diet

managem

entand

respite

care

andem

otion-focused

aspectsthatcon

sisto

fbeliefsinsupernaturalpo

wers,

prayers,andspiritualhealing.

19Meirin

g[30]

2016

SouthAfrica

14(7

parentsa

nd7

professio

nals)

Thes

tudy

exam

ined

someo

fthe

challenges

experie

nced

byadolescentstransition

inginto

adulthoo

dhigh

lightingsomeo

fthe

challenges

such

aslack

ofplanning

andthea

bsence

ofservicefacilitie

sfor

adolescentsw

ithautism

after

scho

ol.O

ther

issues

arising

from

thes

tudy

inclu

dedfeelings

offear

and

uncertainty.Itwas

also

notedthatthiswas

achalleng

ing

andstr

essfu

ltim

efor

parentsa

ndprofessio

nalsalike.

20Va

nBiljon[31]

2015

SouthAfrica

Retro

spectiv

ereview

of141

child

rendiagno

sed

with

ASD

attend

ingas

pecial

needsschoo

lcomparin

gtwo

perio

ds:1992–2002

and2003–2014

Nosig

nificantd

ifferencesinageo

fonsetof

autistic

symptom

s,diagno

sis,sex

ratio

,and

person

who

referred

thec

hild

tothes

choo

l.Morec

hildrenwe

relik

elyto

attend

nurseryscho

ols

priortosta

rtingatthes

pecialneedsschoo

l.

21Pileggi[32]

2015

SouthAfrica

93child

renwith

typicald

evelo

ping

,intellectual

disability,andASD

Ther

esearchersinvestigated

thes

ideo

fcradlinginfants

andob

served

thattypically

developing

child

renand

child

renwith

intellectuald

isabilityhadab

iastow

ards

leftsid

ecradlingwhilechild

renwith

ASD

didno

thave

thisbias.Th

eyattributed

thelackof

leftsid

ecradling

bias

inchild

renwith

ASD

todeficits

insocial-affective

attachment.

22Ba

kare

[33]

2015

Nigeria

757fin

alyear

medicalstu

dents

Theses

tudentsh

adhigh

meanscores

indicatin

gafairly

good

know

ledgeo

fASD

althou

ghtherew

eres

till

impo

rtantk

nowledgeg

apso

bserved.


Table1:Con

tinued.

Firstautho

rYear

Cou

ntry

Sampled

escriptio

nSummaryof

results

23Gon

a[34]

2015

Kenya

103parentso

fchild

renwith

ASD

,specialn

eeds

teachers,clin

icians,

andsocialworkers

Preternaturalcausesw

erem

entio

nedandinclu

dedevil

spirits,

witchcraft,

andcurses.B

iomedicalcauses

comprise

dinfections,drugabuse,birthcomplications,

malnu

trition

,and

genetic

relatedprob

lems.Treatm

ent

varie

dfro

mtradition

alandspiritualhealingto

mod

ern

treatmentinhealth

facilitiesa

ndinclu

dedconsultatio

nswith

tradition

alhealers,off

eringprayerstoGod

,and

visitstoho

spita

ls.

24Eseigbe[35]

2015

Nigeria

167medical

doctors

Thes

tudy

aimed

atevaluatin

gthek

nowledgeo

fASD

amon

ghealthcare

providersa

ndidentifying

challenges

associated

with

itsmanagem

ent.Th

iswas

done

usinga

self-administered

tool,the

Know

ledgea

bout

Child

hood

Autism

amon

gHealth

Workers(KCA

HW)

questio

nnaire.Itw

asob

served

thatpaediatricians

and

psychiatris

tshadab

etterk

nowledgeo

fASD

.The

high

estk

nowledgeg

apwas

associated

with

onseto

fASD

andits

comorbiditie

swhiletheleaston

ewas

concerning

commun

icationim

pairm

ents.

Someo

fthe

major

challenges

encoun

teredin

ASD

managem

ent

werethe

dearth

ofspecialistservices,costof

evaluatio

n,andpo

orcaregiverp

erspectiv

esof

ASD

.

25Mitchell[36]

2014

SouthAfrica

7parentso

fchild

renwith

ASD

Thes

tudy

high

lightsthe

difficulties

parentsfacein

getting

theirc

hildrendiagno

sedwith

ASD

partlydu

eto

ther

eluctance

ofprofessio

nalsto

labelchildrenas

having

ASD

.

26Hoo

genh

out[37]

2014

SouthAfrica

86child

renwith

ASD

Thes

tudy

observed

thatchild

renwho

experie

nced

high

-functio

ning

ASD

,Asperger’s

synd

rome,and

PDD-N

OSdisplayeddelayedTh

eory

ofMind(ToM

)on

setcom

paredto

atypicallydeveloping

grou

p(𝑛=30),bu

tnormalTo

Mdevelopm

entalrates

and

sequ

ences.

27Lo

uw[38]

2013

SouthAfrica

65child

renwith

ASD

Ahigh

frequ

ency

ofmedication,

atleast24.6%

ofthe

sample,was

notedin

theg

roup

;add

ition

ally,

arou

nd40

%of

thes

ampler

eportedusingcomplem

entary

and

alternativetherapies.


Table1:Con

tinued.

Firstautho

rYear

Cou

ntry

Sampled

escriptio

nSummaryof

results

28Sprin

ger[39]

2013

SouthAfrica

58child

renwith

pervasive

developm

ental

disorder

Thes

tudy

aimed

atdescrib

ingthed

emograph

ics,

histo

ry,clin

icalfeatures,com

orbidity,and

yieldof

aetio

logicalinvestig

ations

inchild

rendiagno

sedwith

apervasived

evelo

pmentald

isorder.Th

eautho

rsob

served

thatthem

edianagea

tdiagn

osiswas

42mon

ths.Fo

rtypercenth

adcomplex

autism

(dysmorph

ismwith

orwith

outm

icroceph

aly),and

12.1%

werem

acroceph

alic.M

oreover,therew

ashigh

prevalence

ofbehaviou

ralproblem

s(89%)a

nda

significantp

ropo

rtionof

thec

hildren(72.4%

)were

nonverbal.

29Alant

[40]

2013

SouthAfrica

22child

renwith

ASD

from

aschoo

lforind

ividuals

with

ASD

inSouth

Africa

Thea

imof

thisinvestigationwas

todescrib

ethe

translu

cencyratin

gsof

graphics

ymbo

lsby

agroup

ofchild

renwith

autism

over

repeated

expo

sures.

Alth

ough

thed

ifference

betweenratin

gson

days

1and

3was

statistic

allysig

nificant(medium

effectsize),this

differencer

epresentsa

noverallp

attern

rather

than

significantd

ifferenceso

nratin

gsof

specifics

ymbo

ls.

30Pileggi[41]

2013

SouthAfrica

40child

ren(20

child

renwith

ASD

and20

typically

developing

child

ren)

Thisstu

dyinvestigated

relations

amon

gem

pathyand

cradlin

gbias

inchild

rendiagno

sedwith

autism

spectrum

disorders(ASD

s).Itw

asrepo

rted

that

child

renwith

ASD

didno

tsho

wcradlin

gbias

andit

was

concludedthatther

esultssupp

ortthe

hypo

thesis

thatleftw

ardcradlin

gcharacteriz

edenhanced

quality

ofcaregiver-infant

interactionandbo

nding.

31Grin

ker[42]

2012

SouthAfrica/SouthKo

rea

From

SouthKo

rea:

47participants

(parentsof

child

renwith

ASD

andteachersfro

mregu

lara

ndspecial

educationscho

ols)

From

SouthAfrica:

unspecified

numbero

fclinicians,parents,

daycarec

entre

managers,

tradition

alhealers,

andmanagerso

fchild

ren’s

homes

participated

Itwas

observed

that,bothin

SouthAfricaa

ndin

Korea,

ASD

was

underdiagn

osed

andhardlyever

repo

rted

inclinicalore

ducatio

nalrecords.A

ddition

ally,

both

setting

sexp

erienced

limitedresourcesfor

families

ofchild

renwith

ASD

.Tobe

ableto

setu

pas

uccessful

programmeo

fresearch,thea

utho

rsheavily

depend

edon

localkno

wledgetosolves

omeo

fthe

practic

alprob

lemse

xperienced.


Table1:Con

tinued.

Firstautho

rYear

Cou

ntry

Sampled

escriptio

nSummaryof

results

32Igwe[43]

2011

Nigeria

80health

workers

(40paediatricand

40psychiatric

nurses)

Thea

utho

rsexam

ined

know

ledgea

bout

child

hood

ASD

amon

gpaediatricandpsychiatric

nurses

andob

served

adeficitinASD

know

ledgea

mon

gthesep

rofessionals.

33Ka

pp[44]

2011

SouthAfrica

19mothersof

child

renwith

ASD

Thes

tudy

investigated

thec

hallenges

offamilies

with

child

renwith

ASD

andfactorsthatp

romoter

esilience

inthesefam

ilies.Som

eofthe

factorsidentified

asprom

otingresilienceincludedhaving

asup

portive

family,goo

dspou

salrelationship,andadequate

approaches

toprob

lem-solving

with

inthefam

ily.

34Greeff

[45]

2010

SouthAfrica

34parentso

fchild

renwith

ASD

Thea

utho

rsinvestigatedthefactorsconveying

resilienceinfamilies

ofchild

renwith

ASD

and

observed

thathigh

ersocialecon

omicstatus

(SES

),socialsupp

ort,andas

uppo

rtiveh

omee

nviro

nment

weres

omeo

fthe

factorsthatcon

tributed

toresilience

inthec

ontext

ofASD

.

35Travis[46]

2010

SouthAfrica

2child

renwith

ASD

Thes

tudy

repo

rtse

nhancedcommun

icationabilitie

sam

ongchild

renwith

ASD

who

have

undergon

ean

interventio

nusingtheP

icture

Exchange

Com

mun

icationSyste

m.

36Igwe[47]

2010

Nigeria

300fin

alun

dergradu

ate

students

Thes

tudy

aimed

toevaluateho

wmuchun

dergradu

ate

studentsk

newabou

tautism

inNigeria.R

esults

indicatedthatmedicalstu

dentsw

erethe

most

know

ledgeablea

ndthatattend

ance

onpsychiatry

and

paediatricwards

significantly

enhanced

know

ledgeo

fASD

.

37Ba

kare

[48]

2009

Nigeria

134health

workers

Thes

tudy

notedthatas

ignificantp

ercentageo

fhealthcare

workersin

Nigeriastillheld

negativ

eorfalse

beliefson

thea

etiology,treatability,and

preventability

ofASD

,leading

tothec

onclu

sionthatpartof

thee

fforts

toim

proves

ervicesfor

families

ofchild

renwith

ASD

need

tofocuso

nim

provingkn

owledgea

mon

ghealthcare

providers.

38Olivier[49]

2009

SouthAfrica

8parentso

fchild

renwith

ASD

Thes

tudy

repo

rted

thatsomeo

fthe

keychallenges

facedby

parentso

fchildrenwith

ASD

inclu

dethe

denialof

thed

iagn

osis,

lackingprop

ergu

idance

having

received

thed

iagn

osis,

andalackof

adequateparenting

andcoping

skillsa

mon

gotherc

hallenges.

10 Behavioural NeurologyTa

ble1:Con

tinued.

Firstautho

rYear

Cou

ntry

Sampled

escriptio

nSummaryof

results

39Ba

kare

[50]

2009

Nigeria

134health

workers

Thisstu

dyassessed

theb

aselinek

nowledgea

bout

child

hood

ASD

andop

inionam

ongNigerian

healthcare

workerson

availabilityof

facilitiesa

ndlaw

carin

gforthe

needsa

ndrig

htso

fchildrenwith

child

hood

ASD

andotherd

evelo

pmentaldiso

rders.Th

eworkershadam

oderatea

mou

ntof

know

ledgeo

fchild

hood

ASD

;the

mostsalient

know

ledgeg

apsw

ere

abou

tsym

ptom

sofo

bsessiv

ebehaviour

andthoseo

fim

pairm

entsin

socialinteraction.

40Ba

kare

[51]

2008

Nigeria

50psychiatric

nurses

Thes

tudy

aimed

toexam

inethe

psycho

metric

prop

ertie

softhe

Know

ledgea

bout

Child

hood

ASD

amon

gHealth

Workersqu

estio

nnaire.Itw

asob

served

thatthem

easure

hadexcellent

internalconsistency

and

adequatetest-

retestreliability.

41Geils[52]

2008

SouthAfrica

One

child

with

ASD

Thiscase

study

carriedou

taconversatio

nalanalysis

ofthec

onversations

betweenthep

artic

ipantand

his/her

coparticipantswith

thea

imof

understand

ingsomeo

fthep

otentia

llyuseful

pointsof

interventio

nto

enhance

commun

icationskillsa

mon

gchild

renwith

ASD

.

42Akand

e[53]

2000

SouthAfrica

3child

renwith

ASD

Thisstu

dyinvestigated

colour

learning

andob

served

then

eedfora

high

lyindividu

alized

approach

toteaching

child

renwith

ASD

since

thea

utho

rsob

served

asignificantvariabilityin

thea

pproachto

learning

.

43Akand

e[54]

1999

SouthAfrica

7child

renwith

ASD

Thisstu

dyevaluatedthee

fficacy

ofthe“

self-mon

itorin

ginterventio

n”andob

served

thatthes

uccessratesw

ere

very

similartowhath

asbeen

repo

rted

inotherp

artsof

thew

orld.

44Khan[7]

1996

Zimbabw

e18

child

ren

Thea

utho

rsno

tedthat,intheZ

imbabw

eancontext,the

DSM

III-Rcategorie

sweres

uppo

rted

byem

piric

alevidence.H

owever,theyrecommendedtheinclusio

nof

characteris

ticssuchas

abno

rmalrespon

sestosensory

stim

uliand

distu

rbancestocaterfor

nonclassical

autism.

45Dhadp

hale[55]

1982

Kenya

3child

renwith

infantile

ASD

Thes

tudy

notedthattherew

eren

odifferences

infeatures

ofchild

hood

ASD

presentedby

the3

Kenyan

child

renwhencomparedto

whath

asbeen

describ

edin

thew

est.

46Noach

[56]

1974

SouthAfrica

8(4

child

renwith

ASD

and4

typically

developing

child

ren)

Child

renwith

ASD

wereo

bservedto

presentw

ithim

pairm

entsin

conceptformation.

47Silver

[57]

1970

SouthAfrica

One

Child

with

ASD

Thisstu

dyillustrates

howop

erantcon

ditio

ning

canbe

used

toteachac

hild

with

ASD

afew

words.


Scre

enin

gIn

clude

dEl

igib

ility

Excluded based on abstract (N = 174) Focused on different topic (n = 113)Animal models (n = 13)Conducted outside Africa (n = 9)Nonempirical studies (n = 39)

Records retrieved from reference lists and Google Scholar

(n = 28)

Records after removing duplicates(n = 318)

Full-text articles assessed foreligibility(n = 144)

Eligible studies included inthe review(n = 47)

Studies on validationof ASD measures

(n = 4)

Studies on ASD prevalence(n = 4)

Studies on ASD riskfactors and markers

(n = 6)

Studies on ASDpsychosocial aspects

(n = 34)

Iden

tifica

tion

Records retrieved through EBSCO (Medline,CINAHL, PsycINFO and Child Development &

Adolescent Studies)(n = 313)

(i)(ii)

(iii)(iv)

Full articles excluded (N = 97)

immigrants (n = 1)

Studies among African

outside Africa (n = 4)

Multicountry studies mainly

other conditions (n = 89)Studies mainly focused on

In Africa but not SSA (n = 1)Inaccessible (n = 2)(v)

(i)

(ii)

(iii)

(iv)

Figure 1: A flow diagram of ASD study selection for the systematic review.

ASD [11, 21]. Infectious diseases such as falciparum malariahave been suggested as possible antecedents to ASD [11], butthe association has not been established. Of the six studiesidentified in this category, 4 explored possible genetic andbiomedical factors [11, 20–22]. Three of the studies lookedat potential genetic markers, the ones by Ezegwui et al. [20],Sharma et al. [21], and Arieff et al. [22]. The studies observedthat certain genetic characteristics, for example, allele andgenotype frequencies of 5-HTTLPR, were more likely to beassociated with an increased risk of ASD. Psychosocial riskfactors such as parental stress level have been associated withincreased risk of ASD. Unfortunately, the study had a very

limited sample size (𝑛 = 2) compromising the generalisabilityof these findings [24].

3.5. Psychosocial Aspects of ASD. This category presents thebulk of studies on ASD in Africa. These studies largelyexamined (a) awareness levels, (b) quality of services pro-vided to children with ASD and caregiver challenges, and(c) sociocultural aspects around ASD, for example, explana-tory models on the aetiology of ASD. For instance, mostof the healthcare workers in Enugu, Nigeria, had limitedknowledge of ASD and perceived the quality of healthcareprovided to families of children with ASD as suboptimal


[50, 51]. Most of the studies on awareness were carried outin Nigeria by Bakare and colleagues [33, 48, 50, 51]. OneSouth African study observed that there were relatively fewbarriers to participating in ASD research and suggested thatmost of these barrierswere poverty-related [42]. Additionally,a few very-small-scale studies (with participants rangingfrom 1 to 7) have looked at potential intervention strategiesto enhance outcomes among children with ASD [59, 60].For instance, Travis and Geiger investigated the efficacy ofthe Picture Exchange Communication System (PECS) toimprove communication skills in two South African childrenwith ASD [59]. In Tanzania, Harrison and colleagues [27]recently developed an intervention to raise awareness andhelp caregivers learn some basic behavioural interventionstrategies in two phases. In the first phase, 14 caregivers tookpart in a needs assessment session and an ASD knowledgeintervention. In the secondphase, 29 caregiverswere involvedin an intervention focusing on basic behavioural strategiessuch as parenting skill training, teaching of basic skills (e.g.,making eye contact and imitating), and teaching of self-helpskills (e.g., feeding). Initial evaluation indicated that despite afew challenges it was feasible to implement the interventionand almost all participating caregivers found it to be useful.

4. Discussion

We reviewed the published literature on ASD in sub-SaharanAfrica. Our results indicate that there is very limited datafrom Africa compared to other parts of the world. Weidentified only a single population level study aimed atdocumenting the prevalence of ASD in Africa. Additionally,we could not identify a single case-control study aimed atexamining a comprehensive set of potential risk factors inAfrica. Also, the few intervention studies had very limitedsample sizes, were largely cross-sectional, and lack any mea-surement or evaluation of long-term impact. Put together, ourfindings suggest that current evidence is too scanty to providethe required information to plan adequately for effectiveintervention strategies for children with ASD in SSA.

Notable is the fact that most of the identified studiesarose from only two African countries, that is, South Africaand Nigeria. The lack of literature from other parts of Africamay be due to several factors. First, there may be a lack ofexpertise in other African countries; for instance, a recentconference report does document the large difference innumber of qualified psychologists and psychiatrists in SouthAfrica compared to other countries that had representatives[61]. Second, thismay arise from the lack of resources to carryout research in this area. Another potential explanation is thelack of interest in ASD as a research topic in other parts ofAfrica. Without any evidence, we can only speculate on thepotential reasons for this. However, we feel that the dearthof research from the other African countries reflects theinteraction between the first two reasons mentioned earlier.This calls for an urgent need to develop capacity and interestin ASD research in other countries outside SA and Nigeria toexpand the evidence base.

An important step towards having an adequate researchframework is to have standardized tools for screening and

diagnosing. Our research indicates that they are very fewtools that have been validated for the African context. Theuse of tools from other continents does provide challengesfor various reasons including methodological and resourceavailability [15, 61]. These challenges are the impetus towardsthe development and validation of tools in the Africancontext. However, some studies [16, 17] present early, yet verycrucial steps towards identification of potential screeningand diagnostic tools for the African context. The need toinvestmore into this process cannot be overemphasized giventhe potential benefit in accessing tools that can contributetowards early identification of children who have ASD.

Our review indicates that a significant proportion of thestudies were on psychosocial issues. A major focus of moststudies on psychosocial aspects of ASD potentially reflectssignificant burden on quality of life that African communitiesare increasingly witnessing and appreciating as resultantfrom the ASD condition. Thus, there is growing interest inunderstanding better care andmanagement practices to avertthis burden.

4.1. Limitations. We have systematically searched severaldatabases and identified studies from across different settingsin Africa. We did not look at grey literature and other morelocal and regional based databases; consequently, we mayhave missed out some articles. We, however, did carry out asearch of references list to identifymore studies.We hope thisreduces the potential number of missed studies; however, wecannot completely exclude this possibility.

4.2. Conclusions. Based on our review of published works,it can be said that there is a dearth of scientifically vigorouspublished work from sub-Saharan Africa making it difficultto estimate the burden of ASD in this population, identify riskfactors, or even plan effective intervention strategies.

Competing Interests

The authors declare that they have no competing interests.

Acknowledgments

Charles R. Newton is supported by the Ed Scott Foundationand the Wellcome Trust. The paper is published with thepermission of the director of KEMRI.

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