J Autism Dev Disord
DOI 10.1007/s10803-015-2538-y
ORIGINAL PAPER
‘‘On the Sidelines’’: Access to Autism-Related Services
in the West Bank
Sarah Dababnah1 • Kathleen Bulson1
 Springer Science+Business Media New York 2015
Abstract We examined access to autism-related services
among Palestinians (N = 24) raising children with autism
spectrum disorder (ASD) in the West Bank. Using quali-
tative methods, we identified five primary interview
themes. Poor screening, diagnostic, and psychoeducational
practices were prevalent, as parents reported service pro-
viders minimized parental concerns and communicated
ineffectively with the caregivers regarding treatment
options. Geographic barriers and financial burdens pre-
vented many families from seeking or maintaining ser-
vices. Limited service availability was a dominant barrier:
parents reported limited or denied access to education,
community-based services, and ASD-specific interven-
tions. Consequently, several families noted their children
did not receive any services whatsoever. Research, prac-
tices and policies to address the shortage of services for
children with ASD are urgently needed in the West Bank.
Keywords Autism
ASD
West Bank
Palestinians

Caregivers
Access
Introduction
Increased attention to autism spectrum disorder (ASD) in
the media and across research fields in the last decade has
led to an expansion in both professional and layperson
& Sarah Dababnah
sdababnah@ssw.umaryland.edu
Kathleen Bulson
bulson.sw@umaryland.edu
1
School of Social Work, University of Maryland, 525 West
Redwood Street, Baltimore, MD 21201, USA
awareness of this lifelong neurodevelopmental disorder.
Yet, while the West Bank is well-known due to the Arab–
Israeli conflict, no known studies have investigated access
to ASD services (e.g., diagnostic services, occupational
therapy, ASD treatment approaches) among Palestinian
children and their families. Gulliford et al. (2002) defined
access to health to include both the availability and uti-
lization of services. This paper seeks to expand the
research knowledge on children in the West Bank and their
access to ASD-related services in a region already affected
by significant economic and political barriers to care.
Political and Geographical Characteristics
of the West Bank
Issues related to access to healthcare in the West Bank are
partially rooted within its history of regional land disputes.
The West Bank is a landlocked area in the Middle East
bounded by Israel and Jordan. The Palestinian Authority
exercises limited control of a small, noncontiguous portion
of the West Bank, while Israel solely controls the majority
(World Bank 2013). The West Bank population of
approximately 3 million is 83 % Palestinian Arab and
17 % Jewish Israeli [United States Central Intelligence
Agency (CIA) 2014]. Jewish Israelis in the West Bank
primarily live on separate settlements which are off-limits
to Palestinians and often restricted to outsiders by fenced
perimeters and checkpoints (United Nations 2012). Fur-
thermore, the Palestinian and Israeli populations in the
West Bank have distinct religious, linguistic, and other
cultural traditions, which necessitate separate analyses.
Accordingly, the current research only involves the
Palestinian population within West Bank.
The challenges of territorial disputes, protracted vio-
lence, and political instability have contributed to
123

significant health and economic consequences in the West
Bank (Giacaman et al. 2009). The West Bank’s economy is
heavily constrained by restricted access to the majority of
the land and its resources (World Bank 2013). Nearly 20 %
of West Bank Palestinians are below the poverty level
(2010 estimate; CIA 2014), the average income is
approximately $3000 per year (2012 estimate of West
Bank and Gaza; World Bank 2015), and only one-third of
the population in the West Bank is considered food secure
(United Nations Relief and Works Agency 2012). A recent
Palestinian study highlighted the relationship between
health and economic indicators, finding a strong correlation
between food insecurity and delayed child development
(Gordon and Halileh 2013).
Healthcare in the West Bank
The West Bank’s healthcare system is comprised of the
public sector overseen by the Palestinian Ministry of
Health, the private sector, non-governmental organizations,
and refugee services run by the United Nations Relief and
Works Agency (State of Palestine Ministry of Health 2014;
World Bank 2006). Primary health and hospital services
are predominantly delivered through the Palestinian Min-
istry of Health (World Bank 2006). The West Bank has 49
hospitals in total, but a disjointed service system and
insufficient numbers of providers compel Palestinians to
seek specialized treatments such as radiation or dialysis in
Israeli hospitals (Giacaman et al. 2009; World Bank 2006).
These visits require a referral from the Palestinian Ministry
of Health and a travel permit from Israel. However, the
Israeli-Palestinian conflict makes access to health services
challenging due to significant limitations on movement
within the West Bank, as well as between the West Bank
and Israel (State of Palestine Ministry of Health 2014;
World Health Organization 2013).
The West Bank’s healthcare and social service systems
are heavily reliant on donor aid (World Bank 2013). Non-
governmental organizations (NGOs) provide a gamut of
services to Palestinians and account for approximately
11 % of overall healthcare utilization in the West Bank
(World Bank 2006). These organizations deliver a signifi-
cant portion of the West Bank’s health services related to
psychosocial support (24.8 %) and rehabilitation for
physical and mental disabilities (19 %; World Bank 2006).
A community-based rehabilitation model of services in
the West Bank was initially established by several NGOs
and foreign supporters to expand care to individuals with
disabilities outside of institutional settings (Harami et al.
2010). More than half of individuals receiving services
from community-based rehabilitation programs (including
assessments, trainings, summer camps and educational
advocacy) are children (Harami et al. 2010). The United
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Nations Relief and Works Agency (UNRWA), along with
operating 42 primary health centers in the West Bank,
provides disability services at 15 community-based reha-
bilitation centers available to the over 762,000 registered
refugees in the West Bank (UNRWA 2014).
In total, the fragmented service system, coupled with
insufficient professional capacity on the primary health
level, has resulted in missed opportunities for early
detection and delayed treatment for disabilities (State of
Palestine Ministry of Health 2012). Community-based
rehabilitation has been reportedly successful at improving
clients’ daily living skills, reducing stigma and increasing
disability awareness (Eide 2006; Harami et al. 2010).
Nonetheless, only about 60 % of Palestinians in the West
Bank have access to these services (Harami et al. 2010),
which suggests assistance for children with and at-risk for
disabilities is still inadequate.
Autism Services for Children in the West Bank
The prevalence of ASD in the West Bank is unknown. An
estimated 1.6 % of children aged birth to 17 in the West
Bank have physical or intellectual disabilities (Palestinian
Central Bureau of Statistics 2011). This statistic should be
interpreted with caution as disabilities are underreported in
the West Bank (Hamdan and Al-Akhras 2009) and highly
stigmatized in the Middle East (e.g., see Crabtree 2007).
Arab countries such as Oman (Al-Farsi et al. 2011) and
Libya (Zeglam and Maound 2012) have estimated signifi-
cantly lower ASD prevalence rates in their respective
countries than in Western countries. [For example, the
most widely accepted ASD prevalence rate in the United
States is 1 in 68 children (Centers for Disease Control and
Prevention 2014).] Taha and Hussein (2014) however,
warned some epidemiological studies in the Middle East
have examined only clinical, as opposed to community,
samples.
Evaluation of one’s access to healthcare is a compli-
cated and multifaceted process. Gulliford et al. (2002)
differentiated between the availability of services (‘‘having
access’’) versus the utilization of services (‘‘gaining
access’’). Gaining access to services can be influenced by
personal (e.g., sociocultural factors), organizational (e.g.,
waitlists), and financial barriers. McIntyre et al. (2009)
noted organizational-level issues, such as its scope of
practice and training of staff are significant underlying
causes of the range of services available, services costs,
and patient/provider expectations. Both the availability and
utilization of healthcare services affect equity of access to
individuals in need of such services (Gulliford et al. 2002).
Published reports regarding the availability of ASD
screening, diagnostic, therapeutic, and medical services are
scarce. The Modified Checklist for Autism in Toddlers (M-
J Autism Dev Disord
CHAT) screening tool was successfully tested in nine Arab
countries, but did not include the West Bank (Seif Eldin
et al. 2008). Best practice for ASD diagnostic procedures
includes a comprehensive, multidisciplinary assessment
(Filipek et al. 1999), and some researchers have outlined
diagnostic criteria and procedures for use in Saudi Arabia,
Egypt, and Jordan (Hussein et al. 2011; Masri et al. 2013).
Several studies describe available interventions or services
for children with ASD and their families, noting inter-
ventions that engage and empower parents in treatment are
beneficial, given the lack of trained providers and limited
resources in less affluent countries (Hastings et al. 2012;
Samadi and Mahmoodizadeh 2014). However, a recent
survey in four Middle Eastern countries (including Pales-
tine) highlighted the commonplace practice of traveling
outside of one’s country to access ASD treatment (Habash
and Fteiha 2015). The authors concluded families often
received inaccurate information on ASD and were directed
to treatments lacking an evidence base for effectiveness.
Once services are available, they could continue to be
inaccessible due to a number of personal, organizational
and financial factors. However, service utilization, like
service availability, is understudied in the extant literature
focused on Middle Eastern children with ASD. One study
examined the availability of health services in Jordan for
children with ASD, finding a wide variety of services
including occupational, physical, and speech therapies, as
well as hyperbaric oxygen treatments and nutrition services
(Al Jabery et al. 2014). Yet, parents reportedly faced
extensive barriers to utilize these services, particularly
related to cost. These findings are echoed in US-based
literature. In a national US sample, Kogan et al. (2008)
compared families with a child with ASD to families with
other disabilities, and found more unmet healthcare needs
and greater financial burdens related to services among
families of children with ASD.
Beyond costs, individuals with ASD and their families
face numerous social and cultural barriers to access ASD-
related services. In addition to a limited availability of
ASD diagnostic services, researchers in the Middle East
noted cultural variations and social stigma contribute to
differences in parental recognition of developmental
delays and early intervention access (Hussein et al. 2011).
Our previous paper in the West Bank found parents of
children with ASD frequently faced social stigma and
discrimination (Dababnah and Parish 2013).These parents
reported depressive symptoms, denial of their children’s
ASD diagnoses, poor coping skills, increased burden on
siblings, social isolation, and financial strain. However,
some parents noted religious practices, social support, and
information access were critical to their ability to cope
with these challenges. Other researchers have highlighted
the importance of factors such as peer support and
adaptive coping skills for parent well-being in Iranian
(Samadi et al. 2014), Jordanian (Dardas and Ahmad 2014),
and Lebanese (Obeid and Daou 2015) samples to address
stigma and isolation in Middle Eastern families of children
with ASD.
Finally, certain groups of individuals with ASD and
their families reportedly experience greater challenges to
access care, which suggests organizational and system-
level barriers. In the US, ethnic status and rural residence
have been correlated to delayed access to care (Thomas
et al. 2007), particularly among African Americans
(Mandell et al. 2007). Individuals in rural areas especially
struggle to access ASD specialty care (Murphy and Ruble
2012), suggesting the need for organizations to offer more
local options. Recent research has continued to find parents
of children with ASD report more barriers to secure com-
prehensive insurance coverage and obtain referrals for
services, compared to those raising children without ASD
(Vohra et al. 2014). Failure of organizations to provide
parents with referrals to available services or providers has
been shown to be related to diminished access to rehabil-
itation services in the United Arab Emirates (Dukmak
2009).
This paper seeks to fill the knowledge gap in the liter-
ature regarding access to ASD-related services for children
in the West Bank. We broadly defined ASD-related ser-
vices to include screening, diagnostics, general therapies
such as occupational therapy, or specific ASD interventions
such as applied behavior analysis. We solicited parents’
perspectives, as they are generally the first to interface with
the healthcare delivery system and thus key informants on
children’s access to the service continuum. The current
paper builds on the earlier paper highlighted above, in
which parents reported high levels of discrimination related
to raising a child with ASD in the West Bank (Dababnah
and Parish 2013). Using a qualitative, grounded theory
approach, we broadly address the following research
questions: What services are available to children with
ASD and their families in the West Bank? What barriers do
parents report in order to reach services for their children
with ASD? What additional services do parents believe are
needed for their children?
Methods
In order to investigate issues regarding access to ASD-
related care in the West Bank, we designed a qualitative
study using grounded theory methods. We targeted Pales-
tinian parents raising a child with ASD (up to age 18) in the
West Bank, and estimated a sample of 20–30 participants
was needed to achieve saturation.
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Sample Description and Recruitment Methods
Participants were recruited through a Palestinian coalition
of non-governmental centers, community-based rehabili-
tation workers, and local service agencies serving indi-
viduals with intellectual and developmental disabilities in
the West Bank and East Jerusalem. (For simplicity, we will
subsequently refer to nonresidential agencies serving
individuals with developmental disabilities as ‘‘centers’’
only.) Researchers provided informational fliers in Arabic
on study aims and human subject protection to coalition
members, who in turn shared the recruitment materials with
potential participants. Parents were invited to attend one of
four group interviews scheduled at local centers in the
West Bank. In order to include children and their families
who did not receive services from partner centers, or who
had transportation or scheduling limitations, community-
based rehabilitation workers also arranged individual
interviews in private homes or other community settings.
Approximately half of the 24 participants interviewed
chose to participate in one of the four group interviews
(n = 11), while the majority of the other parents traveled
to participate in individual interviews in local community
settings (n = 11). Two parents were interviewed in their
homes in more isolated areas and reported they did not
leave their houses frequently. The four group interviews
lasted approximately 2 h each, whereas the average dura-
tion of the individual interviews was 1.5 h.
The final sample of 24 parents represented Ramallah,
Nablus, Hebron, and nearby refugee camps and villages.
Table 1 details key sample characteristics. Parents all self-
reported their children’s ASD diagnoses, based on infor-
mation parents received from their children’s physicians or
local disability centers. The diagnoses were not indepen-
dently verified by our research team using standardized
evaluations, provider documentation or other methods.
As noted in the introduction, disabilities are stigmatized
in the Middle East and Palestinian parents of children with
ASD face discrimination and social isolation (e.g., see
Dababnah and Parish 2013). To ensure parents’ confiden-
tiality, we did not document identifiable participant infor-
mation. Four fathers participated, while the majority of
participants were mothers (n = 20). Nearly all (92 %) of
the participants were married. Parents had an average of
four children in their households, and approximately 13 %
had more than one child with special needs. The partici-
pants’ children with ASD were majority male (67 %) and
an average age of 10 years (range 4–17). A minority of
parents characterized their children with ASD as ‘‘high
functioning’’ (17 %). Nearly 30 % of parents reported their
children with ASD had severe behavioral problems and
one-fifth noted their children had other special needs in
addition to ASD (e.g., growth stunting).
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Table 1 Sample description (N = 24)
Characteristic n Percentage
Mothers 20 83.33
Married parent 22 91.67
Male child 16 66.67
Caregiver with [1 child with special needs 3 12.50
Children with severe behavioral problemsa 7 29.17
‘‘High-functioning’’ childrena 4 16.67
Children with comorbid conditionsb 5 20.83
M (SD) Range
Age of child (years) 10.0 (3.6) 4–17
Number of children in family 4.2 (1.6) 1–7
a
Parent characterization of child’s behavior
b
Comormid conditions included epilepsy and physical stunting
Measure
A semi-structured interview guide of eight open-ended
questions and related probes was created for this study,
based on the literature presented in the introduction above.
(The guide is available upon request.) Consistent with
grounded theory methods (Corbin and Strauss 2008; see
additional details on these methods under data analysis
below), emerging themes arising from interviews were
used to inform subsequent interviews, generally through
additional probes.
Research Procedures
We obtained approval from our university-based Institu-
tional Review Board prior to beginning participant
recruitment. As described above, participants were
informed of the study through recruitment fliers. The
research team also included two Palestinian interview
facilitators, both female, who were fluent in Arabic and
English. Researchers did not interact with participants until
the actual interview. Parents were not provided with any
monetary compensation or other incentives for their par-
ticipation. Childcare and transportation assistance were
offered to all participants, but only the latter was utilized.
Before the interview began, interview facilitators
obtained verbal informed consent from each participant.
Given the highly-stigmatized nature of disability in the
Middle East and other Muslim countries (e.g., see Ansari
2002; Crabtree 2007; Young 1997), the Institutional
Review Board waived written informed consent in an effort
to protect the confidentiality of participants’ names. In
group interviews, researchers obtained verbal agreement
from all participants to protect one another’s
confidentiality.
J Autism Dev Disord
All participants chose to conduct their interviews in
Arabic, with the exception of one parent who spoke an
Arabic-English mixture. Each interview with digitally
audio recorded. The audio recordings were transcribed by a
native Arabic speaker with complete English fluency. The
Arabic transcriptions were then translated into English and
reviewed to remove any identifiable participant informa-
tion. The first author, who attended all interviews, reviewed
each transcript for accuracy. Audio recordings were per-
manently deleted once transcriptions were verified for
accuracy.
Data Analysis
Transcripts were analyzed using grounded theory (Corbin
and Strauss 2008) in NVivo 10 (QSR International 2012).
The interview guide was used to create an initial codebook.
Two researchers independently reviewed the transcripts
twice, and then used open coding of interview segments.
The codebook was updated to reflect new codes and
memos of emerging themes and other notes. The first
author then compared the two sets of coded transcripts and
looked for points of disagreement. Any differences in
coding were discussed between the two researchers until
consensus was reached. In addition, we conducted axial
coding to categorize codes into subcategories and deter-
mine the relationships of codes to one another. We also
sought participant responses which conflicted with the
majority of responses, in order to understand the com-
plexity of the parents’ experiences.
Once we completed the coding process, we summarized
and discussed the themes from the data. We increased the
trustworthiness of our analysis (a term for reliability and
validity in qualitative research proposed by Anastas 2004)
by independently coding transcripts by more than one
researcher, maintaining short memos during the coding
process, and consulting field notes compiled after each
interview.
Results
We identified five primary themes from participants’
responses. Most participants described organizational
issues related to screening or assessing their children for
ASD, including difficulties finding professionals trained to
perform such services. Second, the financial cost of ASD-
related services was a persistent problem impeding access
to care for the majority of participants, while geographic
barriers (checkpoints, transportation challenges) were a
factor for a large proportion of the sample. Even if parents
were able to overcome these organizational, geographic, or
other structural barriers, the majority of participants
mentioned the lack of local health, educational, and sup-
portive services for children with ASD in the West Bank.
Thus, for many families, the inability to travel outside the
West Bank to obtain necessary services resulted in keeping
their children at home without any treatment. Finally,
participants highlighted many services they wished were
available for their children.
We did not find any specific themes related to parents
who participated in group versus individual interviews,
with one exception. Parents who participated in individual
interviews experienced more geographic barriers, by virtue
of living in more remote areas.
Theme 1: Inadequate Formal Screening,
Assessment, and Psychoeducational Procedures
Notably, no participants mentioned their pediatricians or
other primary care professionals utilized formal tools to
screen for ASD and other developmental delays. Over half
of the parents (n = 13) reported they observed develop-
mental delays in their children before a pediatrician,
whereas only one parent’s pediatrician noted the signs of
ASD before the parent recognized delays. Further, parents
reported their children’s doctors downplayed parental
concerns about their children’s development, with one
mother recalling:
I do not know if he just did not want to upset me or
what, but the doctor was always telling me not to
worry. I never came back from the doctor and [felt]
afraid or worried. Even when [the doctor] told me
[my child] is autistic, I did not understand what aut-
ism is.
Some parents questioned their providers’ initial dismissal
of parental concerns, as one mother said, ‘‘I told the doctor
[my daughter] does not answer at all. He said, ‘She is just
being naughty.’ I said, ‘That is not it,’ so I went to a
neurologist.’’
Similar to the lack of screening processes, none of the
participants reported their children received a comprehen-
sive diagnostic assessment for ASD once delays were
identified. Half of the families (n = 12) reported dissatis-
faction with the diagnostic process, portraying it as long,
costly and complicated. For one father, the diagnostic
process in which his child received other diagnoses such as
‘‘hyperactivity’’ caused the father to question the ASD
diagnosis, as he explained:
Frankly…until now I still think, I do not want to say
that I insist, that the diagnosis is not accurate. I still
expect that he will be normal in 2, 3 or 4 years, or
close to normal. I am still not convinced with his
current diagnosis at all.
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 J Autism Dev Disord

Approximately 20 % of participants reported their children we choose the diapers. We have to make this choice
underwent expensive ‘‘brain scans’’ which their children’s day in and day out, and that is because of the bad
doctors used to diagnose ASD, despite the lack of empirical situation we are in.
evidence of any such diagnostic test. (Interviewers probed
The costs for ASD-related items and treatments served
participants if these tests were used for diagnostic or
to not only create financial strain in participants’ families,
exclusionary purposes.) A parent explained, ‘‘We did a
but also prohibited three-fourths of the sample (n = 18)
scanning, magnetic imaging that showed the size of the
from seeking and maintaining further treatments and ser-
cerebellum is smaller than normal. So, [the doctor] told me
vices. One mother explained the barrier existed despite her
that proves [my child] is autistic.’’
household’s regular income, ‘‘I have five kids, two of them
Several parents described failed attempts to obtain
in diapers in addition to [my child with ASD]. I cannot
psychoeducation from their children’s providers about
[afford to] put her in a center [for children with develop-
ASD. Consequently, parents were confused about the ASD
mental disabilities].’’ Another parent said she wished her
diagnosis, uncertain of their children’s prognoses, and
child could receive speech therapy; yet, 2 hours of therapy
unaware of treatment interventions. One mother relayed
‘‘is very expensive. It is 600 shekels [approximately $154
her experience to understand her child’s diagnosis, saying
USD] a month, and that is after the discount, too.’’ Thus,
‘‘Once I asked the neurologist who did the diagnosis, did
although this parent acknowledged ‘‘time is passing by,’’
[my child] get the disease during pregnancy or during the
the service was simply inaccessible due to its expense.
delivery? He got mad at me and refused to answer me and
told me ‘How do I know?’’’ This parent’s negative
encounter with health professionals was shared by the
Theme 3: Geographic Barriers
majority of participants, who overall expressed frustration
related to their attempts to access professionals trained to
One-third of the interviewees (n = 8) reported concerns
identify and understand ASD.
with transportation that affected their access to services.
Transportation challenges were related to living in remote
Theme 2: Widespread Financial Obstacles to Care areas, lack of public transportation options, and high travel
costs. One mother described the outcome when a local
Over 50 % of the parents interviewed reported they expe- center provided transportation to various villages:
rienced financial strain related to caring for a child with
[The center] had a bus that used to go around the
ASD. Several factors contributed to families’ financial
villages to pick [up] the kids… It took 2 to 3 h to get
stress, including limited available income due to a spouse’s
to the center. The kids had to spend so much time in
death or disability, unemployment, or underemployment.
the bus going from one town to the other. It was very
In addition, a majority of the parents interviewed men-
exhausting for them.
tioned the high cost of ASD assessments and treatments, as
one mother elaborated: Related to transportation, several participants (n = 5)
reported the distance from their homes to centers in larger
[My child’s] treatment is very expensive, especially
cities in the West Bank was a barrier to obtain ASD
when we went to Jordan. An oxygen session is 80
services.
Jordanian Dinars [approximately $120 USD] …[also]
The political instability in the West Bank, including
the vitamins that he is taking are 600 Israeli Shekels
border crossing points to Israel and internal security
[approximately $153 USD] every month. [Then]
checkpoints within the West Bank, was an obstacle to care
there was this test to determine the level of lead in his
for one-third of the respondents (n = 8). A mother relayed
brain, [it] was about 400 Jordanian Dinars [approxi-
her experience:
mately $565 USD].
Three years ago my son got sick. The doctor sent him
Multiple families delineated lists of costly specialty items
to [a hospital in Jerusalem] in an ambulance. [The
they needed to buy for their children with ASD, including
border guards] let me step down from the ambulance
specific clothing, juices and milks, as well as diapers
at the checkpoint and they said, ‘‘Only your son will
designed for older children. As one father explained, the
pass, and that is for security.’’ [My son] was 14 years
costs of items needed to care for his child with ASD forced
old at that time and could not depend on himself.
his family to make other financial sacrifices:
How could I let him go to [the hospital in Jerusalem]
The amount of money that we spend [on diapers], all by himself? So I told [the border guards] I will not
maybe [it] is more important than food for the rest of step down. So they told me that they will send both of
the family. A lot of times we have to choose…[and] us back. The kid was very sick and almost in a coma.

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So they…told me that his dad can pass but I cannot. I
went back [home] and his dad took a taxi and fol-
lowed him to [the hospital].
All of the parents who reported problems with distance
from their homes to centers also noted checkpoints were
barriers for them as well. For example, one parent noted
she only took her child to one center, ‘‘because it is the
closest to me. There are difficulties in getting to other
centers because of the checkpoints, the army, permissions
you have to get, and the fences.’’
Theme 4: Limited Local Service Availability
While a majority of families (n = 22) reported receiving
local services at some point, either through community-
based rehabilitation or disability centers, five parents
reported their children did not currently receive any ser-
vices. Only two out of the 24 parents interviewed reported
their children’s current services included an ASD-specific
intervention such as applied behavior analysis.
Parents overwhelmingly expressed concerns regarding
the dearth of services for children with ASD. One partici-
pant expressed desperation to find help for her child, say-
ing, ‘‘[Families of children with ASD] are on the sidelines
and forgotten. Our suffering with our kids is not our
country’s or our government’s business. Nothing is avail-
able for our kids.’’ Some parents mentioned basic services
such as speech therapy were unavailable in local centers. A
mother conveyed dissatisfaction with the lack of educa-
tional services, stating:
[My son] needs people who know how to deal with
him. There is no one [who] can be nice to him and
deal with him….This is a big difficulty. I keep telling
the [community-based rehabilitation worker] that you
come in vain because the kid needs a school, even for
a few hours.
Some parents described delays amounting to years to
obtain therapeutic or other health services for their chil-
dren. The delays were attributed to a variety of reasons,
including full programs/waiting lists, centers unable to
accommodate children with ASD, or a lack of parent
knowledge and support on where to find services. One
mother described her exacerbation related to the delay in
finding an appropriate program for her daughter:
[My daughter] spent 2 years at [one center]. I did not
know if there were other centers. I did not know what
to do with her. I did not know what I could offer to
my daughter. I treated her like her siblings at home. I
gave her food and water and that is it. What can I do
for her? I play with her. She needs something special.
[Then the first center] recommended that I go to
[another local program].
Similarly, another mother reported the only center she
initially found had a system that required her to stay with
her child. She said:
How can I take him [to the center], wait for 2 h, and
then take him back? I have to quit my job to do that
…so, of course I did not take him there. And by
chance I learned about [another local program].
Other parents, after exhausting local options, reported
they were currently waiting for an unspecified amount of
time for centers to determine if their programs had suffi-
cient funding, teachers, or open spots for their children.
The uncertainty required parents’ persistence, as one
relayed, ‘‘There is this center that I been talking to in [a
large city]. They are thinking of opening a class that will be
a little bit expensive, and we are still waiting for them.’’
Another parent described how her child’s ASD program
abruptly closed:
He started in [a local center] to take functional ther-
apy especially for children with autism and also
speech therapy. He benefited a lot from them. [Then]
they got tired of the children so they told us we
cannot bring him any more until they bring a new
teacher in September. So I’m waiting until
September.
While some parents were forced to wait months, or even
years, to obtain services, others were denied completely. A
significant number of participants reported their children
were refused public and private educational (n = 12) or
community services (n = 6) because of their children’s
ASD diagnoses. One mother expressed her anger at her
local school’s refusal to accommodate her son:
Every time I put [my child] in a school with normal
kids, someone says, ‘‘He is a bad influence on our
kids.’’ That has happened every time I have put him
in a class. I think that the only way to get [my child
into school] is a lawsuit. That is the only way I can
get him an education.
Several families, in light of the challenges to access care
within the West Bank, sought services, with varying
degrees of success, elsewhere, including Israel (n = 5),
Jordan (n = 6), and the United States (n = 2). Others
expressed they lacked the means to leave the West Bank
due to associated costs (including lack of health coverage)
and problems gaining travel permits, although they desired
to do so. A mother who had government-sponsored insur-
ance through her employment said:
123

When I learned it was autism…I tried to get a referral
to send [my son] to a specialized center in Jordan.
[My employer] asked me to get them an acceptance
from the Jordanian center that I wanted [my son] to
join. So I did. But when I submitted it here [in the
West Bank], I have been told that his case cannot be
covered because it is expensive, [services are] not
guaranteed and take a long time.
Another mother summed up the geographical challenges
and financial barriers to secure services for her child,
saying:
We asked in Bethlehem, Jerusalem, and Ramallah
and other places for autism centers, but there were
none. They told us [services] are in Jordan and are
very expensive. It is very difficult for [my family] to
pay 300-400 JD [Jordanian Dinars, approximately
$424-565 USD] a month for a center. You also do not
know if you will get results and benefits from these
expensive agencies.
Children’s exclusion from services and few available
options were the primary factors prompting five parents to
keep their children at home without any intervention ser-
vices. (Two more children did not receive any services
over the summer months.) One parent gave up her job to
take care of her child, saying ‘‘Lately, I have been in
despair and started to take care of [my child] myself. For a
year now, I have been taking him to the park to play with
him and teach him.’’ Yet, despite the lack of resources
available for children with ASD in the West Bank, one
parent described an effort with another family raising a
child with ASD to create their own basic services, noting:
No kindergarten, preschool, nor a school would
accept [my child] so we created a center especially
for [children with ASD]. They go 5 days a week from
8 to 1, just like schools. They have teachers to feed
and train them as much as they can. They have a bus
that picks them up and return them back. At least they
get to change scenery when they leave home and go
outside.
Although none of the other participants described similarly
large endeavors, the majority of participants expressed
their determined and persistent efforts to locate appropriate
services for their children.
Theme 5: Parents’ Perspectives on Needed Services
in the West Bank
Within the context of parents’ perspectives that very few
services existed in the West Bank for children with ASD,
participants listed numerous requests for needed services.
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J Autism Dev Disord
Nearly 71 % (n = 17) explicitly stated they wished for
more specialized centers or schools with trained ASD
professionals. The participants requested that these spe-
cialized ASD centers provide children with an array of
therapeutic services (e.g., speech, occupational therapy).
Although some of the parents mentioned ASD centers
should integrate educational goals into their service con-
tinuum, other parents specifically noted the need for ser-
vices appropriate for their children within the mainstream
educational system in the West Bank. One mother sug-
gested teacher training should be a priority:
[I want] teachers specialized in autism that know how
to deal with [children with ASD]. If [the children]
bother the teacher, the teacher doesn’t get mad at
them because she knows that this is an expected
behavior from these kids. She is trained to expect
wrong behavior from the kids and knows how to deal
with it.
Parents of older children discussed the need for vocational
services as well, with one saying, ‘‘Honestly, for the future,
the academic education we know is not going to work. [My
child] should be able to learn technical skills that are
appropriate for her, that we can teach her. That will be a
very important service.’’ Finally, two parents who had
accessed educational services also desired summer camps
to create continuity over school breaks.
Multiple parents discussed the need for services which
would help them to integrate their children and their
families into Palestinian society. One participant noted she
wanted her child and their family to feel comfortable going
to public spaces such as parks, saying, ‘‘[I want] places for
entertainment. For example…when I take [my son] with
his siblings in the afternoon and the park is full I get a
million people asking me, ‘What is wrong with him?’’’
Respite services were also a common request, in which
participants could leave their children with trained pro-
fessionals while the parents attended social events such as
weddings.
Discussion
The current study outlined multiple, complex barriers
children in the West Bank face in order to access services
related to ASD. Perhaps most striking was the sheer lack of
local services of any type for children with ASD. Nearly all
of the parents in the study reported they did not have access
to ASD-specific interventions. Families travelled to other
countries when possible to access treatment for their chil-
dren, although the scientific basis for the services children
received in the West Bank or elsewhere was unknown.
One-fifth of the families, out of options, were not able to
J Autism Dev Disord
access any services at all for their children. While many
parents described persistent efforts to identify support for
their children, a complete absence of intervention will
likely have future detrimental effects on these children and
their families’ well-being and inclusion in society.
One of the most troubling findings was of children being
denied community-based services and education. Although
the focus of this study was on ASD-related therapies and
interventions, the fact that half of the parents reported their
children were excluded from schools demonstrated even
the most basic services were unavailable to these families.
In many other countries, essential services for children with
ASD (e.g., speech therapy, social skills training) are
commonly provided in school settings. Thus, the educa-
tional system in the West Bank is missing valuable
opportunities to enhance the health, educational, and social
outcomes of children with ASD.
The limited availability of service options was an
unmistakable challenge facing individuals with ASD in the
West Bank and their families. However, the participants in
the study underscored various other barriers which pre-
vented families from utilizing services, even when the
services were available. The data from this study generally
fit Gulliford and colleague’s typology (2002) of health
access, as financial and organizational barriers were par-
ticularly prominent in this research. Tenuous financial sit-
uations forced many parents to choose between vital
services for their children and other necessities for their
families. It is important to note that similar to previous
research (Habash and Fteiha 2015), we found families
reported financial strain related to accessing treatments and
other services that have very little, if any, evidence for
effectiveness. These services were oftentimes provided by
organizations outside of the West Bank, thus adding sig-
nificant travel and related expenses for families already
experiencing considerable financial burden. Other organi-
zational barriers abounded, with parent reports of long
waiting lists; poor screening, referral, diagnostic, and
psychoeducational practices; and negative interactions with
medical professionals.
These findings build on our previous article regarding
parental knowledge and attitudes about ASD in the West
Bank (Dababnah and Parish 2013). Experiences of dis-
crimination and stigma associated with raising a child with
ASD have the potential to interact with organizational-level
barriers to increase disparities in access for these families.
For example, McIntyre et al. (2009) described the impor-
tance of the concordance between parent and provider
expectations related to the acceptability and utilization of
services in low- and middle-income countries. In the West
Bank cultural context, parents must overcome social stigma
to first seek help for their children, and then, as the findings of
this research suggest, encounter medical and other
professionals who are slow to screen and refer children and
who offer parents only limited (or incorrect) information on
ASD. Centers with long waiting lists and inefficient diag-
nostic procedures will only further frustrate parents’ attempt
to access care for their children, and possibly engender a lack
of confidence in medical professionals’ abilities. Together,
these personal and organizational barriers can considerably
delay critical interventions to an already exceptionally vul-
nerable population of children.
Cultural issues, disability-related stigma, poor provider
training, and financial strain are challenges shared with many
countries across the globe. Similarly, rural populations in
particular frequently encounter geographic barriers such as
limited transportation options. However, some parents’
reports of not being able to reach services due to security
checkpoints and limited ability to travel outside of their home
areas were in many ways unique to the West Bank context.
Our findings suggest that even if the availability of services,
organizational barriers, provider training, and other factors
outlined in this study are addressed, some children will still be
unable to access services due to travel restrictions related to
the Israeli-Palestinian conflict. Giacaman and colleagues’
reports (2003, 2009) argued the Palestinian health sector
cannot improve merely with the infusion of donor aid and a
focus on ground-level medical and humanitarian efforts.
Rather, Palestinian health reform must also attend to the
political and structural factors that underlie many of the bar-
riers faced by individuals with ASD and their families.
Limitations
This research has several limitations. The qualitative
findings are not generalizable, and only represent the views
of the Palestinian Arab participants in this study. The
majority of the small sample was female; thus, fathers’
perspectives were limited. Furthermore, as described pre-
viously, disabilities are stigmatized in the region and
individuals with ASD and their families are not highly
visible within the community. Thus, those parents who did
participate could potentially be qualitatively different on
variables related to access, compared to those who did not
participate. Finally, ASD diagnoses were parent-reported
and not independently verified by the research team. As a
result, the children represented in this study could have
other forms of developmental delays which influenced their
access to services.
Conclusion
There are far too many gaps in services for children with
ASD in the West Bank. Proper screening, diagnostic,
referral, and intervention practices are incredibly
123

important; yet, the system is failing these children and their
families at every step along the service continuum. Thus,
the implications for future research, practice, and policy are
as immense as they are broad. Epidemiological research to
assess the prevalence of ASD is urgently needed to inform
both practice and policy. Future research should also fur-
ther investigate the challenge of ASD-related social stigma
in the West Bank, in order to identify ways to better engage
children with ASD and their families in services. From a
practice perspective, primary healthcare offices, schools,
community-based rehabilitation and disability centers in
the West Bank are potentially appropriate venues to
improve what McIntyre et al. (2009) called organizational
‘‘scope of practice.’’ They suggested enhancing the training
of existing staff and improving the ability of medical
practitioners to communicate with patients about their
diagnoses and treatment options can be efficient methods to
improve the range of services available and decrease ser-
vice costs. Undoubtedly, primary care providers in the
West Bank should be trained to recognize and properly
refer children at risk for ASD and other developmental
delays, as well as to communicate information to families
in a culturally-relevant manner. Nonetheless, the data from
this study demonstrate improved screening, referral, and
psychoeducational practices in the West Bank will be
meaningless without concurrent efforts to increase the
availability of ASD-related services appropriate for Pales-
tinian children and their families.
Addressing stigma and improving organizational
capacity to serve children with ASD will only partially
address the challenges facing Palestinian children with
ASD and their families. The weaknesses at the practice
level extend to macro-level issues within the health system
and political climate in the West Bank. The disjointed
Palestinian health system is driven by the oftentimes con-
flicting agendas of among others, international donors, the
Palestinian Authority, and Israel. The voices from this
study spoke of the desperate need for services for children
with ASD. Researchers, practitioners, and policymakers
must bring families in from the sidelines, by including
more of their perspectives from the ground and engaging
them in planning how to address these broader access
issues.
Acknowledgments This research was supported in part by grants
from the Anne-Linda Furstenberg Fund for Qualitative Research and
UNC Center for Global Initiatives. Drs. Susan Parish, Kathleen
Rounds, Allam Jarrar, and Gary Mesibov provided helpful advice on
the conceptualization and implementation of this study. We also
acknowledge the individuals in the West Bank who graciously con-
tributed their time to this research.
Author Contributions SD conceptualized the study, supervised
data collection, conducted data analysis and interpretation, and draf-
ted the manuscript. KB performed the literature search, assisted in
123
J Autism Dev Disord
data analysis and interpretation, and contributed to manuscript
preparation. Both authors revised and approved the final version of
the manuscript.
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