American Journal of Orthopsychiatry

The Path to an Autism Spectrum Disorders Diagnosis in

Ethiopia: Parent Perspective
Waganesh A. Zeleke, Tammy Hughes, and Morgan Chitiyo
Online First Publication, August 17, 2017. http://dx.doi.org/10.1037/ort0000249

CITATION
Zeleke, W. A., Hughes, T., & Chitiyo, M. (2017, August 17). The Path to an Autism Spectrum
Disorders Diagnosis in Ethiopia: Parent Perspective. American Journal of Orthopsychiatry.
Advance online publication. http://dx.doi.org/10.1037/ort0000249
 American Journal of Orthopsychiatry © 2017 Global Alliance for Behavioral Health and Social Justice
2017, Vol. 0, No. 999, 000 http://dx.doi.org/10.1037/ort0000249

The Path to an Autism Spectrum Disorders Diagnosis

in Ethiopia: Parent Perspective
Waganesh A. Zeleke, Tammy Hughes, and Morgan Chitiyo
Duquesne University

This study explores the common characteristics of children with autism spectrum disorders
(ASDs) and the available diagnostic and intervention currently practiced for children with ASDs
in Ethiopia based on parents’ experience. Data gathered from 100 parents in Ethiopia detail the
This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.

difficulties families face when they suspect their child has an autism spectrum disorder (ASD).
This document is copyrighted by the American Psychological Association or one of its allied publishers.

The data indicate Ethiopian parents pursued a diagnosis of ASD after noting common ASD
behaviors such as hand flapping and unusual attachments to objects. Poor social interactions
were the least likely to symptoms to prompt an ASD evaluation. The large majority of parents
indicated they were unaware of the services provided to their children and indicated poor
parent–agency coordination. Parents noted very limited formal support systems to help cope with
the stigma of having a child with ASD. Implication for future research and intervention are
discussed.

Public Policy Relevance Statement

This study suggest that the importance of a comprehensive education and training campaign
that is tailored to service providers, parents, as well as the public. Increasing parents and
caregivers support shows the best promise for helping children with ASD in Ethiopia.

A
utism spectrum disorders (ASD) are now reported to
affect one in 68 children in the United States making it
one of the fastest growing disability categories (Centers
for Disease Control and Prevention, 2015). As the prevalence rates
in the U.S. have increased, questions about the accuracy of previ-
ous world population prevalence estimates (e.g., 1% of individuals
meet the criteria for ASD) emerge (Elsabbagh, 2012). Further-
more, although the diagnostic symptoms of ASD (i.e., qualitative
impairments in social skills and communication abilities, and
restricted repetitive and stereotyped behavioral patterns, interests,
and activities) are known to be heterogeneous varying in degree
and intensity, it is well accepted that there is an ongoing need to
refine the characterization of these traits for both research and
intervention planning purposes—see for example, updates in the
DSM–5 (American Psychiatric Association, 2013). In western
countries, where research-funding is available, there is a well-
developed literature base investigating potential causes of the
disorder, the developmental progression of symptoms as well as
Waganesh A. Zeleke, Tammy Hughes, and Morgan Chitiyo, Depart-
ment of Counseling, Psychology, and Special Needs Education, Duquesne
University.
Correspondence concerning this article should be addressed to Waga-
nesh A. Zeleke, Department of Counseling, Psychology, and Special Needs
Education, Duquesne University, 110E Canvien Hall, 600 Forbes Avenue,
Pittsburgh, PA 15282. E-mail: zelekew@duq.edu
1
effective interventions for various ASD challenges (Centers for
Disease Control and Prevention, 2015). In contrast, in developing
countries like Africa, there are substantial barriers to documenting
variations in the presentation of ASD characteristics in the popu-
lation (Ametepee & Chitiyo, 2009; Zeleke, 2013). The need to
update descriptions of ASD is particularly important in countries
like Ethiopia where many questions about characteristics of ASD
are still unanswered.
Autism was first documented in Africa over three decades ago
(Lotter, 1978; Sanua, 1984). Lotter (1978) recorded behaviors
consistent with autism including hand-flapping, self-aggression,
and rocking among children carrying the primary diagnosis of an
intellectual disability (previously mental retardation) in six African
countries. Similarly, in 1996, while working with 18 nonverbal
children diagnosed with an intellectual disability (previously men-
tal retardation) in Zimbabwe, Khan and Hombarume (1996) noted
the presence of autistic behaviors (e.g., hand flapping, self-injury,
repetitive behaviors, and poor communication and social skills).
More recently, in Africa, Newton and Chugani (2013) found
children with a primary diagnosis of ASD where typical behavioral
patterns were evident (e.g., social and communication difficulties
and hand flapping), an overrepresentation of the disorder in males,
as well as other common comorbid conditions (e.g., intellectual
disability, association with genetic conditions).
Researchers have also documented some unexpected findings in
Africa (Ametepee & Chitiyo, 2009). Lotter (1978) reported an
overrepresentation of children from upper-class families. Manko-
ski et al. (2006) noted the absence of repetitive stereotypic behav-
 2 ZELEKE, HUGHES, AND CHITIYO
iors. Also, Mankoski and colleagues reported that some of the
children in their study presented symptoms of ASD following
episodes of encephalitic infection or sepsis. Interestingly, in the
first case marking an official autism diagnosis in Ethiopia, the
5-year-old boy also presented with arrested hydrocephalus (Gebre-
Mariam, 1986). Evidently, of the studies in Africa documenting
the onset of autism symptoms, many of diagnosis followed after a
medical complication. This pattern is unlike the cases documented
in the U.S. where an infant’s developmental history may be unre-
markable or free from significant medical concerns (Johnson,
2004; Ruparelia et al., 2016). Newton and Chugani (2013) findings
from Africa are summarized into five observations: (a) older age at
diagnosis; (b) an increased proportion of nonverbal cases; (c)
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possible infectious etiologies; (d) lack of recognition by health
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care workers; and (e) attributing ASD to traditional (spiritual)
causes. The variations noted in these few studies highlight the need
to better understand how and when ASD is diagnosed, barriers to
care (e.g., health care access and traditional care priorities), and
other potential variations in the aspects of autism in Africa (Bakare
& Munir, 2011; Tilahun et al., 2016).
Unlike the literature in western countries, one of the major areas
understudied in Africa concerns the parents’ experience of their
child’s development and their involvement in obtaining an official
ASD diagnosis (Ruparelia et al., 2016; Zeleke, 2016). Surveying
U.S., England, Ireland, Canada, Australia, and New Zealand par-
ents (n ! 494) about their satisfaction of the process of obtaining
an ASD diagnosis, Goin-Kochel, Mackintosh, and Myers (2006)
found 40% were “not satisfied,” while 35% reported they were
“moderately satisfied,” and 23.5% reported they were “extremely
satisfied.” Parents whose children were diagnosed at earlier ages
and when the diagnostic process required fewer visits reported
greater satisfaction. On average, parents reported visiting between
four and five clinicians before receiving an ASD diagnosis. The
average age of diagnosis was 4.5 years, although age of diagnosis
differed among groups; higher levels of parent education and
income were associated with children receiving the diagnosis at
younger age. Similar to Goin-Kochel et al. (2006), a Canadian
survey of parents by Siklos and Kerns (2007) found an average of
4.5 evaluation meetings were required before the child received a
diagnosis. These authors found that, on average, the diagnosis
occurred approximately 3 years after the initial visit (i.e., there was
a 4-year waiting period for female children and a 2-year waiting
period for male children). The requirement to wait through mul-
tiple meeting with multiple professionals before receiving a diag-
nosis was a common barrier.
Siklos and Kerns (2007) also documented parent dissatisfaction
with the accessibility to services following the diagnosis. This
finding is highlighted in several studies where Osborne and Reed
(2008) found dissatisfaction with service accessibility in their
English sample highlighting the limited opportunities to under-
stand recommendations for home-agency coordinated care. They
noted inadequate educational materials and professional support
for parents; they documented that advice given at the time of
diagnosis varied significantly (Osborne & Reed, 2008). Similar
results have been produced from surveys of Irish parents (Keenan,
Dillenburger, Doherty, Byrne, & Gallagher, 2010) and French
parents (Chamak, Bonniau, Oudaya, & Ehrenberg, 2011).
Ethiopian Context
Ethiopia is home to approximately 90 million people who are
culturally and linguistically diverse; 85% of the country’s popu-
lation lives in rural areas (Zeleke, 2016). Although the global
prevalence of ASD is estimated to be around 0.6%, there is no
empirical data describing its prevalence in Africa (Elsabbagh et al.,
2012). The general consensus is that prevalence rates of develop-
mental conditions and intellectual disabilities is at least as high in
Africa as in developed countries (Tilahun et al., 2016; WHO,
2006).
According to Tekola et al. (2016), primary health care in Ethi-
opia is provided primarily by government health center (1/15,000 –
25,000 population) and their satellite health posts (1/3,000 –5,000
population) connected through a referral system. The coverage of
child health care services are limited to 62% of the country’s
health facilities (Federal Democratic Republic of Ethiopia Minis-
try of Health, 2015). Culturally based beliefs, social stigma, and
inconsistency in the description of the symptoms and causal fac-
tors of ASD make the referral, recognition, and diagnosis pro-
cesses difficult in Ethiopia. Traditional explanations for how a
child acquires the disorder—spirit possession (40.2%) or sinful act
(27.5%) in a recent sample (n ! 102) of Ethiopian care givers of
children with ASDs (Tilahun et al., 2016)—steer families to seek
spiritual supports to address ASD symptoms. Although many
families reported feeling ashamed of their child’s condition, sig-
nificantly more stigma is reported by parents receiving a super-
natural explanations for the cause of the disorder and for those
parents seeking traditional spiritual remedies (Tilahun et al., 2016).
Widespread illiteracy combined with limited access to ade-
quately trained heath care professionals also pose significant bar-
riers to identifying and treating individuals with ASD in Ethiopia.
Families find themselves in a social context that is uninformed by
public education materials addressing child health and develop-
ment. When considering the pubic health service announcements
on TV and widespread placement of posters showing proper hand
washing techniques it is clear that there is a forum for public health
concerns in Ethiopia, but it is not yet being applied to child health
or specific disability concerns. Most unfortunately, the increasing
demand to understand and treat ASD has resulted in an outpouring
of information that can be incomplete (e.g., NGO-funded projects
aimed at a narrow audience) and, sometimes, inaccurate (Morris,
2006). As such, myths circulate among parents, teachers, and other
professionals. Relatedly, the limited emphasis on the identification
and treatment of autism in the training of physicians has resulted
in a situation where medical professionals can be an unreliable
resource to families (Zeleke, 2016). Additionally, there are few
transportation options to even fewer service providers. ASD ser-
vices that could be comparable with western standards are singu-
larly located in the capital city Addis Ababa (Tilahun et al., 2016;
Zeleke, Chitiyo & Hughes, in press). In these formal clinics, a
psychiatrist, using the medical model approach to diagnosis (e.g.,
relying heavily on identifying physical abnormalities), is the pro-
fessional most likely to determine the presence of ASD (Zeleke,
2016). It is estimated that there are 44 psychiatrists for about 85
million people in Ethiopia; WHO, 2006). Of course, only a few
specialize in child psychiatry, and diagnoses such as autism. Tila-
hun et al. (2016) identified only two psychiatrists serving children
with ASD in Ethiopia in 2016.
 PATH TO ASD DIAGNOSIS
Even after making the trip to the capital, parents often seek an
informal assessment and diagnosis from the local autism commu-
nity service centers rather than join the waitlist to see the psychi-
atrist. Autism centers, which primarily employ practitioners with
bachelors’ degrees in psychology or social work, use informal
techniques to label children as “having the tendency of autism” or
“classical autism spectrum disorder” (Zeleke, 2016). Many indi-
viduals with both autism and a cognitive impairment only receive
the diagnosis of an intellectual disability due to lack of training and
awareness about ASD symptoms among professionals in the med-
ical field (Morris, 2006; Tilahun et al., 2016; Zeleke, 2016).
In the case where a child carries a formal diagnosis, it is almost
certain that they have traveled to Addis Ababa, rather than access-
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ing care in local regional hospitals or clinics. As a result, there is
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very limited coordinated health and educational care in the child’s
home city or village. Further complicating matters, a child with an
ASD diagnosis can be rejected by public regular schools because
there is no legal mandate to address ASD or to provide support for
children with a disability even if they are very high functioning.
Given these challenges, how ASD is perceived, understood, and
treated needs to be explored so that the integration of evidenced
based treatments may become a viable option (Bakare & Munir,
2011). Specifically, we require documentation regarding parents’
experiences in obtaining the diagnosis and their understanding of
the child’s symptoms. Researchers striving to develop effective
interventions for children with ASD in Africa need to first have an
understanding of the context, the types of services already avail-
able and what families are willing and able to do to seek help.
Hence, this exploratory study can serve as a baseline resource for
future research aiming to examine the state ASD services for
children in Ethiopia.
The Current Study
The present study seeks to determine if the profile of ASD
characteristics that commonly bring parents to seek diagnosis and
treatment of ASD in western countries is similar for children and
families in Africa. We examine differences that influence parent
perceptions and actions. Further, we review variations in the
manifestations of symptoms of the disorder. Ultimately, we antic-
ipate that understanding of symptom clusters in Africa can pro-
mote culturally relevant outreach and treatment for children. Spe-
cifically, the study addresses these research questions regarding
parent experiences and perceptions: (a) Which symptoms were
first noticed and lead to the pursuit of a diagnosis? (b) How long
did the diagnostic process take? (c) What is the current develop-
mental profile (including symptoms ASD) of this sample of chil-
dren? (d) What treatments does the child receive? and (e) What
type of parental support is available?
Method
Site of Study
In Ethiopia, there are two parent-owned autism centers that are
the primary organizations providing behavioral support services
for children with ASD (Zeleke, 2016). These centers serve as an
alternative to traditional care in local communities and to the
3
diagnostic services provided by psychiatrists in the hospitals (Tila-
hun et al., 2016). The Joy Center for Children with Autism and
Nehemiah Autism Center are both located in the capital. At the
time of data collection, these two centers were serving more than
150 children in their daily support programs, and an additional 45
individuals through the community outreach. They have more than
400 children on their waiting lists (Nia Foundation, 2014). Ser-
vices provided include: establishing an approximation of a formal
diagnosis via informal assessment strategies (e.g., comparative
observations based on personal experiences), delivering individu-
alized training (e.g., development of self-help, social skills, func-
tional occupational skills needed for daily learning and managing
sensory irritations), providing specific therapies delivered by a
variety of professionals and paraprofessionals (e.g., speech and
language and occupational therapist), designing educational op-
portunities (e.g., how to plan for activities of daily living, how to
apply foundational academics and physical education), as well as
promoting awareness and advocacy programs designed for the
general public. Although there are a few individuals with milder
symptoms of ASD in these centers, most of the individuals are best
described by the DSM–5 categories: Level 2: Requiring substantial
support—where marked deficits remain apparent even with sup-
ports in place and are frequent enough to be obvious to the casual
observer or Level 3: Requiring very substantial support—where
deficits are severe and interfere with functioning across all areas.
Individuals are as young as age 4 and as old as age 21. Consistent
with the population demographics, most individuals are from rural
areas. It is estimated that 10% have been severely neglected (i.e.,
locked in rooms, kept from going into public). Each setting reports
a few cases where children have been restrained in an effort to
modify stereotyped or self-injurious behaviors. More than half of
the population is thought to also have an intellectual disability.
Although record keeping in the centers is spotty, these severe
examples tend to be highlighted in public service announcements.
Participants
Using a convenience/purposive sampling technique participants
were caregivers of individuals receiving services at one of the
centers. Eligible participants indicated that they were a parent or
legal guardian of a child with ASD and were familiar with the
child’s development. Over an 8-month period, approximately 300
surveys were distributed; ultimately 120 permissions and surveys
were returned. Of those that were returned, 20 surveys were
considered incomplete (i.e., more than 20% of their data was
missing) and thus, were eliminated from the study sample.
Data collection procedures. With the approval from a
U.S. university Institutional Review Board, the leading author who
is an Ethiopian native, contacted the directors of the centers to
notify them about the opportunity to participate in the study. After
securing the directors’ permission, the lead author traveled to
Ethiopia where potential participants were duly informed about the
purpose of the survey, approximate duration, confidentiality, the
voluntary basis of their participation, and their right to withdraw
from the study at any time if they wished. After consent was
secured the survey was distributed and collected during in-person
meetings.
 4 ZELEKE, HUGHES, AND CHITIYO
Instruments
As of this writing, there are no standardized or empirically
validated questionnaires that measures the constructs proposed
in the study. Also, there were no instruments available in Amharic,
the language of Ethiopia. As such, the survey had to be developed.
The survey was organized in four sections: (a) demographic data;
(b) parents’ experiences of detection, diagnosis, and the treatment
received by their children with ASD; (c) developmental profile of
their children in areas such as language and communication, be-
havior, social, and cognitive skills; (d) identifying the type of
parental support provided.
Demographic questions asked respondents to indicate their sex,
age, employment status, marital status, and geographical setting
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where they live. The symptom detection, diagnostic process, and
treatment section asks respondents to describe the first indicators
of ASD symptoms, their process of obtaining the diagnosis, and
treatment the child receives. These 16 questions are in an open-end
format allowing parents to describe their experience. The child’s
developmental profile section consisted of 110 questions address-
ing child characteristics in three dominions: language and com-
munication, behavioral challenges, and social and emotional de-
velopment. Questions specific to autism were adapted from the
Autism-Spectrums Quotient (AQ) scale (Woodbury-Smith, Rob-
inson, Wheelwright, & Baron-Cohen, 2005) and included indica-
tors of ASD found in the current literature, DSM–5 and ICD 10.
Analyses of the AQ continue to show good adherence to the ICD
definition (Ruzich et al., 2015). Questions are asked in a Likert-
type scale format.
1. Behavioral: Forty-one questions are rated to determine the
presence of behavioral challenges as well as the severity of
the difficulty. For example, does the child show daily living
skill problems, sleep disturbances, screaming and agitation,
or incontinence among others?
2. Social and emotional development domain: Forty-eight
questions are rated to determine the presence of social and
emotional challenges as well as the severity of the difficulty.
For example, does the child’s interact with others, have eye
contact, or show difficulty in social interactions, and so
forth?
3. Language and communication: Twenty-one questions are
rated to determine the presence of language and communi-
cation challenges as well as the severity of the difficulty. For
example, does the child have speech, can the child use words
meaningfully, and can the child use the words to communi-
cate with others?
The parental support and intervention section was made up of
four questions soliciting feedback about formal and informal
sources of support.
The survey was developed in English and translated into Am-
haric by a bilingual Ethiopian professor who is a clinical psychol-
ogist and familiar with the types of autism treatment and services
addressed by the instrument. Next, two bilingual Ethiopian indi-
viduals performed blind back-translation jointly. Then, the first
translator (i.e., Ethiopian professor) together with an additional
three other professors (skilled in social psychology and linguistics)
from Addis Ababa University along with one of the authors of this
study examined these back-translations finalizing the instrument
for distribution. In total, seven bilingual professionals with rele-
vant expertise finalized the instrument administered to parents.
Data Analysis
Descriptive statistics are used to identify which symptoms par-
ents’ first noticed and lead to the pursuit of a diagnosis, how long
the diagnostic process took, and treatments received by the child.
Group differences were compared with an independent t test.
Cross-tabulation analysis show how parents rated their child’s
development on language and communication, behavioral, social,
and emotional skills. Frequency counts were used to consider
parental support comparisons.
Results
The sample (n ! 100) was comprised of 67 (67%) mothers, 31
(31%) fathers, and two (2%) family members that did not provide
information. The mothers’ ages ranged from 22 years to 55 years
with an average age of 36 years; fathers’ ages ranged from 27
years to 60 years with an average age of 43 years. Of the 67
mothers participating in this study, 61 (91%) reported being mar-
ried, two (3%) indicated they were single, and two (3%) indicated
they were now divorced, while two (3%) did not provide infor-
mation on their marital status. Twenty-seven out of 31 fathers
(87%) reported being married, while four (13%) indicated they
were separated.
The educational profiles of mothers and fathers participating in
the study were not similar. Of the mothers, 24 (36%) had at least
a college degree; 24 (36%) had completed high school; nine (14%)
had completed secondary school, while six (9%) had been to
primary school; four participants (6%) did not report educational
information. Out of 31 fathers who responded to the survey, 26
(84%) reported having at least a college degree; one (3%) had
completed high school, while four (12%) did not respond to this
item. Forty-four (66%) of the mothers were employed while 19
(28%) were not; four participants did not respond to this item. As
for the fathers, 30 (97%) were employed while one (3%) was not.
Ninety-eight percent of the participants reside in urban settings,
while two (2%) are from rural area (see Table 1). The children age
ranged from 3 to 21 with an average of 9.5 years. Most of children
(n ! 81; 81%) were male. When asked about the comorbidity
diagnosis, 22 (24%) parents reported that their child has a comor-
bid condition such as ADHD, epilepsy, learning disability; 70
(76%) of them mentioned only ASDs, and 18 parents did not
answer.
When asked about the number of children in each family six
participants did not answer. For the 94 parents that responded three
was the average number of children (ranging from one to eight).
Most parents (88) reported that they had only one child with a
disability, four participants indicated they had two children with a
disability, and two participants indicated they had three children
with a disability; 12 individuals did not respond to this question.
Detection and Diagnosis of ASD
When asked to describe their perception of their child’s overall
health, a majority of the parents (88%) indicated they held general
 PATH TO ASD DIAGNOSIS 5

Table 1. Demographic and Clinical Characteristics of the diagnosis such as epilepsy, ADHD, mental retardation, and learn-
Respondents and Their Children with ASDs ing disability, while 78% stated their child did not have another
disability; eight did not respond.
N (%) On average, ASD symptoms were first apparent to participants
Mother Father when the child was 3-years-old (range ! 1 to 7 years), answered
Characteristics (n ! 67) (n ! 31) Mean by 68 of participants. There was a statically significant difference
Parents characteristics (p ! .001) in the age of child at diagnosis where girls were
younger (n ! 19, M ! 2.26, SD ! 1.485) than the boys (n ! 78,
Age (years) Mean age for
22–32 19 (28) 3 (10) mother is
M ! 3.9, SD ! 1.853). Only 46 participants indicated how they
33–45 40 (58) 16 (51) 36 years reacted to their child’s unusual development. Initial reactions
46–60 8 (12) 12 (39) Mean age for included denial (n ! 20) and seeking professional help (n ! 26).
father is Similarly, only 47 participants provided information about their
43 years child’s age at the time of diagnosis; the average age of the child
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Marital status four years (range ! 1–10 years, SD ! 1.7).

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Married 61 (91) 27 (87) In terms of the symptoms leading the participants to pursue the
Separated 4 (13) diagnosis, more than half indicated behavioral (58%) concerns
Divorce 2 (3) such as (e.g., smelling every food item before eating, hand flap-
Single 2 (3)
ping, excessive crying, unusual attachment to specific items)
Level of education
No formal education 6 (9)
whereas (34%) indicated language/communication problems (e.g.,
Completed grade (1–11) 9 (14) failing to respond to verbal and nonverbal communication
High school diploma 24 (36) 1 (3) prompts, not communicating verbally), 13% indicated that health
College degree and above 24 (36) 26 (84) problems (e.g., a diagnosis of epilepsy, food allergy or ear infec-
No response 4 (6) 4 (13) tion), and only 3% reported social problems (e.g., failure to engage
Occupation in reciprocal play, lack of interest to any social contact), while 24
Employed 44 (66) 30 (97) did not respond to this question.
Unemployed 19 (28) 1 (3) No matter where the diagnosis was obtained, participants uniformly
Residence concluded that the diagnostic process was too long. Most participants
Urban 98 (98)
(75%) reported they did not receive formal and written documentation
Rural 2 (2)
describing their child’s symptoms, or level of functioning. In the
Child characteristics sample, 64 (68%) worked with a physician or pediatrician, 18 (19%)
Gender worked with a psychologist or counselor, and 12 (13%) worked with
Boy 81 (81) a psychiatrist. Six participants did not respond to this question.
Girl 19 (19)
Age
1–6 10 (10) Mean age is Development Profiles of Children With ASD
7–12 58 (59) 9.5 years
Using a Likert-type scale (i.e., from 1 ! not at all true to 5 !
13–21 20 (20)
Age of diagnosis very true), participants responded to how accurately the statements
Before 1-year-old 8 described their child. Statements referenced a child’s physical
1–2-years-old 12 development as well as the language, behavioral, and social-
3 and above years 80 emotional characteristics of autism. Parents were reporting on the
Type of diagnosis child’s current functioning.
ASDs 70 (76)
ASD with other comorbid condition 22 (24)
Sibling with other developmental disorders Behavioral Profile
Yes 6 (7)
The most commonly identified behavioral characteristics in-
No 84 (93)
cluding having to play or do things in the same exact way each
Number of siblings
1–2 30 (32) Mean number of time (75%); engaging in unusual mannerisms such as hand-
3–5 56 (60) siblings is 3 flapping or spinning (74%); having sudden mood changes, dem-
6 and above 8 (9) onstrating mood swings (73%); screaming or yelling (72%). The
statements most parents indicated were not a problem (i.e., re-
Note. ASDs ! Autism spectrum disorders. sponded with either 1 or 2) were acting sulky or sad (63%); being
underactive or lacking in energy, sedentary (59%); hitting or
hurting others (58%); stares into space for long periods of time
concerns whereas only six (6%) described their child as having (58%; see Figures 1a and 1b).
serious health problems. Six (6%) did not respond to this question.
Nineteen participants indicated that their child was taking medi-
Social and Emotional Profile
cation at the time of this study; 73 (73%) stated their child was not
taking any medication while eight did not respond to the item. On the social and emotional domain, the following symptoms
Also, 22% of the parents indicated that their child carried another were most common identified by parents failure to plan recre-
 6 ZELEKE, HUGHES, AND CHITIYO
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Figure 1. Parents’ Ratings of Children’s Behavioral Characteristics.

ational activities (77%); failure to compliment or congratulate tions with others (70%); understanding what other people’s “body
someone (74%); failure to develop any friendships (74%); failure language” means (65%); does not imitate other children at play
to offer to assist others when they need help (72%); failure to (64%); does not understanding what other people’s facial expres-
initiate and maintain friendships (71%); failure to start conversa- sions mean (59%); does not spontaneously greeting familiar peo-
 PATH TO ASD DIAGNOSIS
ple (59%); does not respond to own name when called out among
two or more other names (58%).
The cross-tabulation analyses also indicated that a majority of
the parents rated the following items with either not at all true or
not true: s/he can plan recreational activities (77%); compliment-
ing or congratulating someone (74%); offering to assist others
when they need help (72%); s/he can initiate and maintain friend-
ship (71%); starting conversations with others (70%). The follow-
ing are some of the indicators that most of the parents responded
to with a rating of either 4 or 5 (see Figures 2a and 2b).
Language and communication profile. When asked
whether their child was verbal, 91 parents responded; of these 30
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(33%) stated “yes;” 61 (67%) stated “no;” and nine did not
This document is copyrighted by the American Psychological Association or one of its allied publishers.
respond. As shown in Figure 3, more than half of the parents
responded with either one or two to the following statements
indicating that these statements were not true about their children:
s/he has clear speech; s/he can stay on the topic during conver-
sations; s/he can make conversations appropriate for his or her
age; s/he has enough vocabulary for his or her age; s/he can talk
about things that interest the other person; s/he can speak in an
appropriate tone of voice during interactions; s/he echoes/repeats
questions or statements made by other people; s/he can respect the
personal space of others during interactions; s/he can listen to
what others say and use this information during conversations.
Similarly, at least half of the parents responded with either 4 or 5
to the following statements, which indicates that these statements
were true about the children: s/he gets desired objects by gestur-
ing; s/he exhibits pronoun reversal (you for I . . .); s/he can smile
to be friendly or to indicate to others that he likes something.
Several communication impairments of young children were
reported by about three quarters of the parents. These are lack of
clear speech (73%), failure to stay on the topic during conversa-
tions (72%), and failure to make conversations appropriate for his
or her age (70%).
Current Intervention Services
Twenty-one parents indicated their children were receiving be-
havioral therapy, two parents indicated speech therapy, while 77
responded that they didn’t know the interventions their child was
currently receiving. In terms of who was providing the therapy, 46
(46%) of the parents stated a professional; the rest (n ! 54, 54%)
reported they didn’t know the credentials of their child therapist.
According to the information provided by the 49 (49%) parents
who responded to the question about how long their children had
been receiving intervention, the times ranged from between 1 and
12 years. Twenty-one (47%) parents indicated that they had no-
ticed positive changes in their child’s condition as a result of
intervention services.
When asked whether their child was receiving any special
education services, 49 (72%) parents stated “yes;” 19 (28%) stated
“no;” and 32 did not respond. Most parents 73 (88%) indicated that
their child received special education services through one of the
autism centers, 10 (12%) identified a home-based program also
running through one of the autism centers, and 17 did not respond.
The parents were also asked if they used any traditional and
spiritual treatment (e.g., using holly water, using herbs) for their
children with autism and 26 (29%) parents stated “yes” while 62
7
(71%) stated “no;” 16 did not respond. In rank order, participants
identified the need for more: specialized professionals (n ! 66),
resources (n ! 51), access to services at public schools (n ! 59),
and relevant health institutions (n ! 49). When asked if they had
any support groups, 61 (67%) parents stated “yes” while 30 (33%)
stated “no;” nine did not respond. Identified sources of support
included informal contacts with family, church, friends, neighbors,
and the autism centers community. No participants identified for-
mal, organized support structures.
Discussion
This study examined how parents came to initially detect ASD
symptoms in their child, the process they experienced in obtaining
the diagnosis, the child’s current symptoms, which treatments the
child receives as well as their sources of social support. Given that
there are very few studies documenting ASD in Africa, and even
fewer from Ethiopia, these results help establish a baseline for
understanding the current context as well as allow for initial
comparisons with data from western countries.
Results showed that at least one of the parents in a majority
(68%) of the families was well educated (e.g., college diploma).
The average family size, reported by 94 of the parents, was three
children (ranging from one to eight children). The demographic
characteristics of participants in this sample are different from the
general Ethiopian communities’ demographic characteristics. For
example, a study of the Situation of Out of School Children
(SOOSC) in Ethiopia, which was conducted by the Ethiopian
Ministry of Education and UNICEF in 2012, indicated that par-
ents’ level of poverty and lack of education was a major barrier
keeping more than four million out-of-school children from re-
turning to school (Ethiopian Ministry of Education & UNICEF,
2012). However, these results are more similar to those found by
in 1978 by Lotter where he noted an overrepresentation of children
from upper-class families. Although it cannot be directly inferred
from the current data, it is possible that parents’ level of education
and social economic status resulted in an openness to seek treat-
ment for their child. Likely, the opportunity to engage services was
viewed as a positive factor by parents.
Regardless of educational attainment, parents indicated that the
process was not easy. For example, parents report that there is a
negative social stigma associated with having a child who needs
mental health treatment. Local cultural beliefs and attitudes sur-
rounding the onset of disorders like ASD can be associated with
spiritual crisis or “being with the devil.” Inconsistent descriptions
of ASD symptoms (e.g., terms associated with western medicine,
traditional causes) contribute to the misunderstanding about what
is important for making a referral and diagnosis possible (Tilahun
et al., 2016). Our results are consistent with Newton and Chugani
(2013) and Tilahun et al. (2016) findings where ASD were attrib-
uted to traditional (spiritual) causes. Taken together, it is likely that
less educated population groups may be not be able to overcome
barrier for seeking ASD services Ethiopia.
Geographically, approximately 85% of the Ethiopian population
resides in remote, rural areas. Given other factors, such as financial
constraints and technical limitations (e.g., a lack of experts in
autism and the unavailability of a systematic framework support-
ing the identification and diagnosis of autism), it is extremely
difficult to reach remote families mush less to ensure a full
 This document is copyrighted by the American Psychological Association or one of its allied publishers.
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8
ZELEKE, HUGHES, AND CHITIYO

Figure 2. Parents’ Ratings of Children’s Social and Emotional.

 PATH TO ASD DIAGNOSIS
This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.
This document is copyrighted by the American Psychological Association or one of its allied publishers.
Figure 3. Parents’ Ratings of Children’s Language and Communication Characteristics.
accounting of who needs services. In this study, two of individuals
were from rural areas, less/more/the same as expected from the
demographics of the country.
On average, parents first noticed developmental delays and ASD
symptoms when the child was around 3 years of age. This is about
a year later than what is reported in other studies surveying parents
in western contexts (Goin-Kochel & Myers, 2004; Ozonoff et al.,
2009). While it cannot be determined from results of this current
study, it is possible that children with ASD in Ethiopia may delay
displaying characteristics of ASD; it is also possible that cultural
factors may contribute to the differences in parent scrutiny of
developmental norms among their children, as suggested by Daley
(2004). Whatever the reason, the time when parents notice the first
signs of ASD is important because parents are usually the first to
bring the symptoms to the attention of clinical practitioners (Goin-
Kochel & Myers, 2004). Thus, the earlier parents identify the
symptoms the earlier the children can be diagnosed and receive
appropriate interventions, a crucial element in the efficacy of
interventions for children ASD.
In this investigation, parents reported that the average age for
children to receive a diagnosis of ASD was 4 years. This is
consistent with data reported by the Centers for Disease Control
and Prevention (2015) where the average ages are 4 years for
autistic disorder, 4 years and 2 months for Pervasive Developmen-
tal Disorder-Not Otherwise Specified (PDD-NOS) and 6 years and
2 months for Asperger’s syndrome. It is inconsistent with the
results by Newton and Chugani (2013) where older age at time of
9
diagnosis was described. By subtracting the average age at symp-
toms’ identification from the average age at diagnosis, we found a
1-year delay in the diagnosis for this sample. This delay is shorter
than what is reported in other studies (Goin-Kochel & Myers,
2004; Young, Brewer, & Pattison, 2003). For example, using a
sample of parents from Australia, Canada, England, Ireland, and
New Zealand, Goin-Kochel and Myers (2004) reported average
delays of 13 to 24 months for children with autism, 14 to 32
months for children with PDD-NOS, and 3 to 3.5 years for chil-
dren with Asperger’s syndrome. While this may appear to be good
news, given the mismatch between national demographics and the
current sample, it is likely that many children, especially those
from families with lower educational attainment, may not have
access to developmental screenings or referral options. Even
though the association is not causal, the research linking parental
concern about their children’s development, especially at age 12
months, to a subsequent autism diagnosis (Ozonoff et al., 2009) is
a compelling reason for increased access to screening and evalu-
ation protocols promoting early intervention. Findings in the cur-
rent study, therefore, reinforce calls from previous researchers for
both parents and professionals to take early parental concerns
about their children’s development seriously (Howlin & Moore,
1997).
Coordinated care with medical professionals offers an opportu-
nity to improve public awareness and increased health care access.
Contributors to the problem of inadequate screening could be a
result of the pediatric care framework in which primary care
 10 ZELEKE, HUGHES, AND CHITIYO
check-ups may not happen at regular intervals; as a result, medical
professionals may be unaware of delays in a developing child
(Zeleke, 2016). Two participant responses highlight these con-
cerns.
I noticed my son was not following a routine developmental pathway
early but I did not know where I could go to get my son diagnosed.
I took him to different medical doctors who informed me that he
would soon acquire language skills, outgrow his hyperactivity, and
begin to interact with other children. . . . When M never grew out of
his impairment I brought him to the Joy Center and talked to the
director, who is herself a mother of a child with autism. It is her
assessment that confirmed to us that M is on the spectrum (mother of
10-year-old boy diagnosed with ASD).
This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.
Knowing what my daughter’s problem was, was a very daunting
This document is copyrighted by the American Psychological Association or one of its allied publishers.
process. . . . It took us more than 3 years to know she had autism. We
spent more than 3 years going to the medical doctor, going to different
faith groups, and finally we came to the Joy Center and learned she
had autism (mother of 11 years old girl diagnosed with ASD).
It is promising, however, that the results of these data show that
the majority of the parents (68%) indicated that their child’s
diagnosis was conducted by a physician/pediatrician. Improved
diagnostic services are the best way to help families’ access
requisite early intervention programs.
Our results also highlight the need for multidisciplinary collab-
oration among professionals (e.g., physicians, special educators,
physical therapists, behavior analysts) in order to optimize out-
comes for children with ASD. That is, a majority of the parents
(88%) indicated they had some concern about their child’s health
and an additional six percent stated that their child had serious
health problems. These results are not surprising as the comorbid-
ity of autism and other health conditions is well documented
(Abbeduto, McDuffie, & Thurman, 2014; Cass, Sekaran, & Baird,
2006). A need to coordinate care with school services was also
noted by parents. Although Ethiopia has adopted legislative poli-
cies, such as the Persons with Disabilities Act and the Inclusive
Education Policy Framework, that are designed to protect the
educational rights of individuals with disabilities, special educa-
tional services are still not widely available (Ethiopian Ministry of
Education & UNICEF, 2012; Teffera, 2006; Zeleke, 2016). Vari-
ous challenges such as inadequate data on children with special
needs, lack of a comprehensive policy on special needs education,
lack of resources, inadequate infrastructure, and lack of trained
personnel serve as barriers to achieving the goal of inclusive
education for children with disabilities in Ethiopia.
All the participants in this study were diagnosed with ASD at an
average age of 4 years, and regardless of diagnostic system (e.g.,
DSM or ICD) considered, the vast majority showed above-
threshold symptoms across the major autism domains language,
behavioral, and social domains. However, symptom patterns anal-
yses showed a great degree of variability across subjects. These
findings are consistent with previous studies that have used retro-
active parent reports and identified delayed language, lack of
attention to caregivers, poor socialization, stereotyped behaviors,
and communication as some of the most commonly reported
characteristics among children ultimately diagnosed with ASD
(Young, Brewer, & Pattison, 2003). Children with ASD often find
it hard to communicate with others in a typical way and have
difficulty understanding social conventions (Ozonoff et al., 2009).
As a result, individuals with autism may respond in unusual ways
to everyday situations and changing environments. Motor, lan-
guage, cognitive, and social skills develop differently and at dif-
ferent rates for children with ASD when compared with other
children their age. For example, some children with ASD develop
large vocabulary and can read long words but may be unable to
vocalize the sound of a single letter (Young, Brewer, & Pattison,
2003). A child may also learn new skills, such as saying a number
of words, but lose this ability later on. Of course, symptoms vary
considerably (Fombonne, 2003; Halepoto & Al-Ayadhi, 2014;
Worley & Matson, 2012).
Over half of the parents in this study (67%) indicated that they
relied on family, friends, neighbors, church, and the autism com-
munity, among others, as their source of support. This is necessary
given the ongoing challenges (e.g., psychological, social, and
economic) reported by Ethiopian families touched by ASD (Darrat
& Zeglam, 2008; Tadesse, 2014). While many types of support are
needed, the support identified here is exclusively delivered by
nonprofessionals, bringing into question the quality and accuracy
of guidance provided. Although many forms of support (e.g.,
moral, financial, and social) can be helpful, it is essential that the
parents receive support that is informed by evidenced-based prac-
tices to increase their knowledge about ASD. In a country where
autism awareness among the general public is still limited (Ta-
desse, 2014), efforts should be made to formalize and standardize
educational materials for parents.
Implications
These results contribute a missing piece from the corpus of
global research on ASD. Specifically, the addition of data from a
developing country helps to contextualize research from western
countries. Most of what is known about autism today is almost
solely based on studies of western populations. Notably, with
researchers pointing to the potential influence of culture on the
diagnosis and treatment of the disorders (Ennis-Cole, Durodoye, &
Harris, 2013), it is essential that researchers examine factors re-
lated to ASD in previously ignored or very remote regions. Future
research should examine how cultural beliefs can either hinder or
facilitate diagnosis and treatment of ASD. The current investiga-
tion also calls attention to the need to direct efforts to improve the
quality of screening and diagnosis services for children with ASD
in Ethiopia. Intervention studies are needed to determine the type
of interventions available and the involvement of parents in their
child treatment. Analysis suggest that interventions that are under-
stood by parents may have the greatest benefits for the child with
ASD. It will also be important to consider interventions that better
inform parents about the importance of early intervention and its
potential effect on current and future behavior, social, language,
and compunction development with ASD, and pave the way for
more opportunity for growth and development.
Limitations
Using a sample of convenience can result in several limitations.
Given the voluntary nature of participants, it is possible that
individuals who self-select out of the study may not have done so
at random. This could result in an unwanted sample bias. Although
 PATH TO ASD DIAGNOSIS
parents are identified as one of the most reliable sources of
information about their child’s development (Regalado & Halfon,
2001; Skellern, Rogers, & O’Callaghan, 2001), as with all self-
report measures, there is a risk of gathering socially desirable
responses. Also, the self-report measures gathered here are not
accompanied by an independent verification of the respondent’s
reporting. Including feedback from both parents, teachers, and the
service providers who diagnosed the child would strengthen the
interpretation of data from this data. Future projects will seek to
improve these limitations.
Conclusions
This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.
Africa, and developing countries like Ethiopia, continue to need
This document is copyrighted by the American Psychological Association or one of its allied publishers.
further exploration regarding how it does or does not match
western criteria for characterizing mental health needs for this
population. The unusual findings that the diagnosis of ASD is
associated with more educated families may be an artificial result
indicating the diagnosis, and ultimately treatment services, are
only available to those with resources. Considering these results
show that only 21% of parents sought professional help in re-
sponse to their own unease about their child’s development along-
side the attribution of cultural traditional (spiritual) causes of the
disorder (Bakare & Munir, 2011), it is clear that uncovering the
contextual factors that interfere with seeking evidence-based treat-
ments needs to remain a priority.
Interestingly, the current findings, where 77% of the parents
couldn’t identify the type of treatment their child received, are
consistent with data collected from service providers where only
26% of them indicated that they involved parents in interventions
(Zeleke et al., in press). It appears there is consistency in the
conclusion that parents and health providers do not yet consider
themselves as treatment partners. Future studies are needed to
examine parents’ involvement in their child treatment plan and
effectiveness. Intervention studies are needed to determine if the
range of interventions available is unusually limited by parents
skill set or cultural factors interfering with treatment implementa-
tion in order to determine how to proceed in so that the integration
of evidenced based treatments may become a viable option (Ba-
kare & Munir, 2011) for children with ASD in the country.
Keywords: Ethiopia; autism spectrum disorders; parents’ experience;
characteristics of autism; behavior
References
Abbeduto, L., McDuffie, A., & Thurman, A. J. (2014). The fragile X
syndrome-autism comorbidity: What do we really know? Frontiers in
Genetics, 5, 355. http://dx.doi.org/10.3389/fgene.2014.00355
American Psychiatric Association. (2013). Diagnostic and statistical man-
ual of mental disorders (5th ed., text revision). Washington, DC: APA.
Ametepee, L. K., & Chitiyo, M. (2009). What we know about autism in
Africa: A brief research synthesis. Journal of the International Associ-
ation of Special Education, 10, 11.
Bakare, M. O., & Munir, K. M. (2011). Autism spectrum disorders (ASD)
in Africa: A perspective. The African Journal of Psychiatry, 14, 208 –
210. http://dx.doi.org/10.4314/ajpsy.v14i3.3
Cass, H., Sekaran, D., & Baird, G. (2006). Medical investigation of
children with autistic spectrum disorders. Child: Care, Health and
Development, 32, 521–533. http://dx.doi.org/10.1111/j.1365-2214.2006
.00630.x
11
Centers for Disease Control and Prevention. (2015). Prevalence. Retrieved
from http://www.cdc.gov/ncbddd/autism/data.html
Chamak, B., Bonniau, B., Oudaya, L., & Ehrenberg, A. (2011). The autism
diagnostic experiences of French parents. Autism, 15, 83–97. http://dx
.doi.org/10.1177/1362361309354756
Daley, T. C. (2004). From symptom recognition to diagnosis: Children
with autism in urban India. Social Science & Medicine, 58, 1323–1335.
http://dx.doi.org/10.1016/S0277-9536(03)00330-7
Darrat, H., & Zeglam, A. M. (2008). Autism—What is it? Are we up to it
in Africa? African Journal of Neurological Sciences, 27, 142–145.
Elsabbagh, M. (2012). Perspectives from the common ground. Autism
Research, 5, 153–155. http://dx.doi.org/10.1002/aur.1237
Elsabbagh, M., Divan, G., Koh, Y. J., Kim, Y. S., Kauchali, S., Marcín, C.,
. . . Fombonne, E. (2012). Global prevalence of autism and other
pervasive developmental disorders. Autism Research, 5, 160 –179. http://
dx.doi.org/10.1002/aur.239
Ennis-Cole, D., Durodoye, B. A., & Harris, H. L. (2013). The impact of
culture on autism diagnosis and treatment: Considerations for counselors
and other professionals. The Family Journal, 21, 279 –287. http://dx.doi
.org/10.1177/1066480713476834
Ethiopian Ministry of Education and UNICEF. (2012). Study on situation
of out of school children (OOSC) in Ethiopia. Retrieved from http://
www.unicef.org/ethiopia/OSCStudyReport2012.pdf
Federal Democratic Republic of Ethiopia Ministry of Health. (2015).
Health sector transformation plan (HSTP) 2015/16 –2019/20. FDRE.
Retrieved from http://midwives.org.et/sites/default/files/HSTP%20
Final%20Print%202015-10-19%20Small%20size.pdf
Fombonne, E. (2003). Epidemiological surveys of autism and other per-
vasive developmental disorders: An update. Journal of Autism and
Developmental Disorders, 33, 365–382. http://dx.doi.org/10.1023/A:
1025054610557
Gebre-Mariam, A. (1986). Infantile autism following hypoxic-ischaemic
encephalopathy in an Ethiopian child. Ethiopian Medical Journal, 24,
179 –182.
Goin-Kochel, R. P., Mackintosh, V. H., & Myers, B. J. (2006). How many
doctors does it take to make an autism spectrum diagnosis? Autism, 10,
439 – 451.
Goin-Kochel, R. P., & Myers, P. J. (2004). Parental report of early autistic
symptoms: Differences in age of detection and frequencies of charac-
teristics among three autism spectrum disorders. Journal on Develop-
mental Disabilities, 11, 21–39.
Halepoto, D. M., & Al-Ayadhi, L. Y. (2014). In search of autism biomark-
ers: Possible autism bio-markers discovery at autism research and treat-
ment center, King Saud University, KSA. International Journal of
Bioscience, Biochemistry, Bioinformatics, 4, 175–179. http://dx.doi.org/
10.7763/IJBBB.2014.V4.334
Howlin, P., & Moore, A. (1997). Diagnosis of autism. A survey of over
1200 patients in the UK. Autism, 1, 135–162. http://dx.doi.org/10.1177/
1362361397012003
Johnson, C. P. (2004). Early clinical characteristics of children with autism.
In V. B. Gupta (Ed.), Autistic spectrum disorders in children (pp.
85–123). New York, NY: Marcel Dekker, Inc. http://dx.doi.org/10.1201/
9780203026229.ch5
Keenan, M., Dillenburger, K., Doherty, A., Byrne, T., & Gallagher, S.
(2010). The experiences of parents during diagnosis and forwarded
planning for children with autism spectrum disorders. Journal of Ap-
plied Research in Intellectual Disabilities, 23, 390 –397. http://dx.doi
.org/10.1111/j.1468-3148.2010.00555.x
Khan, N., & Hombarume, J. (1996). Levels of autistic behaviour among the
mentally handicapped children in Zimbabwe. The Central African Jour-
nal of Medicine, 42, 36 –39.
Lotter, V. (1978). Childhood autism in Africa. Journal of Child Psychology
and Psychiatry, and Allied Disciplines, 19, 231–244. http://dx.doi.org/
10.1111/j.1469-7610.1978.tb00466.x
 12 ZELEKE, HUGHES, AND CHITIYO
Mankoski, R. E., Collins, M., Ndosi, N. K., Mgalla, E. H., Sarwatt, V. V.,
& Folstein, S. E. (2006). Etiologies of autism in a case-series from
Tanzania. Journal of Autism and Developmental Disorders, 36, 1039 –
1051. http://dx.doi.org/10.1007/s10803-006-0143-9
Morris, G. (2006). Autism in Ethiopia—UNICEF supports country’s first
ever special school. Retrieved from www.unicef.org/ethiopia/ETFeature_
Joy_Nov06.pdf
Nia Foundation. (2014). Retrieved from http://nia-foundation.org/
Newton, C. R., & Chugani, D. C. (2013). The continuing role of ICNA in
Africa: How to tackle autism? Developmental Medicine and Child
Neurology, 55, 488 – 489. http://dx.doi.org/10.1111/dmcn.12150
Osborne, L. A., & Reed, P. (2008). Parents’ perceptions of communication
with professionals during the diagnosis of autism. Autism, 12, 309 –324.
http://dx.doi.org/10.1177/1362361307089517
This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.
Ozonoff, S., Young, G. S., Steinfeld, M. B., Hill, M. M., Cook, I., Hutman,
This document is copyrighted by the American Psychological Association or one of its allied publishers.
T., . . . Sigman, M. (2009). How early do parent concerns predict later
autism diagnosis? Journal of Developmental and Behavioral Pediatrics,
30, 367–375. http://dx.doi.org/10.1097/DBP.0b013e3181ba0fcf
Regalado, M., & Halfon, N. (2001). Primary care services promoting
optimal child development from birth to age 3 years: Review of the
literature. Archives of Pediatrics & Adolescent Medicine, 155, 1311–
1322. http://dx.doi.org/10.1001/archpedi.155.12.1311
Ruparelia, K., Abubakar, A., Badoe, E., Bakare, M., Visser, K., Chugani,
D. C., . . . Newton, C. R. (2016). Autism spectrum disorders in Africa:
Current challenges in identification, assessment, and treatment: A report
on the International Child Neurology Association Meeting on ASD in
Africa, Ghana, April 3–5, 2014. Journal of Child Neurology, 31, 1018 –
1026. http://dx.doi.org/10.1177/0883073816635748
Ruzich, E., Allison, C., Smith, P., Watson, P., Auyeung, B., Ring, H., &
Baron-Cohen, S. (2015). Measuring autistic traits in the general popu-
lation: A systematic review of the Autism-Spectrum Quotient (AQ) in a
nonclinical population sample of 6,900 typical adult males and females.
Molecular Autism, 6, 2. http://dx.doi.org/10.1186/2040-2392-6-2
Sanua, V. D. (1984). Is infantile autism a universal phenomenon? An open
question. The International Journal of Social Psychiatry, 30, 163–177.
http://dx.doi.org/10.1177/002076408403000301
Siklos, S., & Kerns, K. A. (2007). Assessing the diagnostic experiences of
a small sample of parents of children with autism spectrum disorders.
Research in Developmental Disabilities, 28, 9 –22. http://dx.doi.org/10
.1016/j.ridd.2005.09.003
Skellern, C. Y., Rogers, Y., & O’Callaghan, M. J. (2001). A parent-
completed developmental questionnaire: Follow up of ex-premature
infants. Journal of Paediatrics and Child Health, 37, 125–129. http://
dx.doi.org/10.1046/j.1440-1754.2001.00604.x
Tadesse, A. (2014). Families living with a child diagnosed with autism:
Challenges and coping mechanisms. Unpublished master’s thesis.
Teffera, T. (2006). Overview of the development of inclusive education in
the last fifteen years in Ethiopia. In H. Savolainen, M. Matero, & H.
Kokkala (Eds.), When all means all: Experiences in three African
countries with EFA and children with disabilities. Helsinki, Finland:
Ministry for Foreign Affairs of Finland.
Tekola, B., Baheretibeb, Y., Roth, I., Tilahun, D., Fekadu, A., Hanlon, C.,
& Hoekstra, R. A. (2016). Challenges and opportunities to improve
autism services in low-income countries: Lessons from a situational
analysis in Ethiopia. Global mental health. Advance online publication.
Tilahun, D., Hanlon, C., Fekadu, A., Tekola, B., Baheretibeb, Y., &
Hoekstra, R. A. (2016). Stigma, explanatory models and unmet needs of
caregivers of children with developmental disorders in a low-income
African country: A cross-sectional facility-based survey. BMC Health
Services Research, 16, 152. http://dx.doi.org/10.1186/s12913-016-
1383-9
WHO. (2006). Mental health system in Ethiopia: A report of the assess-
ment of the mental health system in Ethiopia using the World Health
Organization-Assessment Instrument for Mental Health Systems. Addis
Ababa, Ethiopia: WHO-AIMS.
Woodbury-Smith, M. R., Robinson, J., Wheelwright, S., & Baron-Cohen,
S. (2005). Screening adults for Asperger Syndrome using the AQ: A
preliminary study of its diagnostic validity in clinical practice. Journal
of Autism and Developmental Disorders, 35, 331–335. http://dx.doi.org/
10.1007/s10803-005-3300-7
Worley, J. A., & Matson, J. L. (2012). Comparing symptoms of autism
spectrum disorders using the current DSM–IV–TR criteria and the pro-
posed DSM-V diagnostic criteria. Research in Autism Spectrum Disor-
ders, 6, 965–970. http://dx.doi.org/10.1016/j.rasd.2011.12.012
Young, R. L., Brewer, N., & Pattison, C. (2003). Parental identification of
early behavioural abnormalities in children with autistic disorder. Au-
tism, 7, 125–143. http://dx.doi.org/10.1177/1362361303007002002
Zeleke, A., Chitiyo, M., & Hughes, T. (in press). Autism service providers
report: Behavioral and educational interventions used in Ethiopia. In-
ternational Journal of School & Educational Psychology.
Zeleke, W. A. (2013). Psychological adjustment and relational develop-
ment in Ethiopian adoptees and their families. University of Montana.
Zeleke, W. (2016). Children with Autism in Ethiopia: Diagnosis, Laws,
and Educational and Behavioral Intervention. Journal of the Interna-
tional Association of Special Education, 1, 64 –72.