Parental Perceptions of Services Provide (2)

H. Arabiat, Hatem A. AL Khamra, Iman Amy Betawi & Sinaria Kamil Abdel Jabbar

Journal of Child and Family Studies

ISSN 1062-1024

J Child Fam Stud DOI 10.1007/s10826-012-9703-0

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DOI 10.1007/s10826-012-9703-0 ORIGINALPAPER

Parental Perceptions of Services Provided for Children with Autism in Jordan

Mohammad A. AL Jabery • Diana H. Arabiat • Hatem A. AL Khamra • Iman Amy Betawi • Sinaria Kamil Abdel Jabbar

Springer Science+Business Media New York 2012

Abstract Providing formal support for children with counseling, and community awareness services. Further autism and their parents is important and mandatory to

suggestions and implications are presented in the study. improve children’s abilities and enhance the capabilities of parents. The present study attempted to investigate the

Keywords

perceptions of parents of children with autism regarding the services provided in Jordan. A questionnaire consisting of five sections was designed and distributed to a sample of

60 parents of children with autism (5–18 years old) among

Introduction

four special education institutions in Jordan. The ques- tionnaire addressed five domains: demographics, type and

Autism is categorized under the Pervasive Developmental number of received services, methods and difficulties of

Disorders (PDD) category as described by the American obtaining services, parents’ satisfaction, and parents’ per-

Psychiatric Association. Autism is marked by deficits in ceived needed services. The results revealed that the ser-

reciprocal social interaction, communication (verbal and vice delivery system with which parents interacted was

nonverbal), and a restricted repertoire of activity and composed of multiple places and providers, but had several

interest (DSM IV-TR; American Psychiatric Association difficulties. Parents participating in this study expressed an

2000 ). The nature of autism demands a wide range of average satisfaction with the received services. Issues

services (e.g., health and medical, rehabilitative, and edu- pertaining to the cost of services, parents-professional

cational). These services might require parents to interact partnerships, and overall quality of services were seen by

with multiple providers, try different types of services or parents as sources of low satisfaction. On the other hand,

treatments, and dedicate their time, money, and energy parents expressed the need for early intervention, family

(Goin-Kochel et al. 2009 ).

Working with children with autism represents a chal- lenge for those who are engaged with them (e.g., teachers, paraprofessionals, primary health providers, and parents).

Department of Counseling and Special Education, The challenge emerges from ‘‘the heterogeneity of stu- Faculty of Educational Sciences, The University of Jordan,

Amman 11942, Jordan dents’ characteristics and needs, the idiosyncratic and e-mail: m.algabery@ju.edu.jo

occasionally severe nature of the students’ behavioral challenges, the dramatic increase in the prevalence of

D. H. Arabiat Department of Maternal and Child Health Nursing,

autism spectrum disorders, the strongly held and diverse Faculty of Nursing, The University of Jordan,

opinions regarding appropriate intervention, and the liti- Amman 11942, Jordan

gious atmosphere engendered by these opinions’’ (Dunlap et al. 2008 , p. 111). Making the challenge even more

Department of Curriculum and Instruction, complex is the uncertainties and lack of consensus

Faculty of Educational Sciences, The University of Jordan, regarding which treatments will help children with autism Amman 11942, Jordan

(Mackintosh et al. 2012 ).

In this regard, parents of children with autism are left Other studies indicated that parents of children with with the most demanding challenges that require them, on

ASD utilize an average of seven to nine different types the one hand, to make decisions regarding the type of

of therapies or treatments (Hess et al. 2008 ; Green et al. therapies that are appropriate to their children and, on the

2006 ; Kohelr 1999 ). These therapies were educational or other hand, the criteria to implement and determine the

behavioral, health/medical, and pharmacological (Rogers effectiveness of these therapies. This challenge might be

and Vismara 2008 ; Wong and Smith 2006 ). Green et al. more problematic, especially in the absence of well-

( 2006 ) developed an Internet survey to identify treatments established consensus regarding appropriate educational

used by parents of children with autism in 17 different practices (Dunlap et al. 2008 ).

countries. Results of the study revealed parents, on aver- Because of these documented challenges, many investi-

age, reported using seven different types of treatments, gative research studies worldwide have attempted to explore

such as speech therapy, visual schedules, sensory integra- parents’ perceptions regarding the services provided for their

tion, and applied behavior analysis (p. 70). children with autism. The main purpose of these studies was

Within the Middle East region, Senel ( 2010 ) surveyed to gain practical understanding about the suitability, utility,

38 Turkish parents regarding their use, views, and experi- and functionality of these services (i.e., appropriateness and

ences with Complementary and Alternative Medicine effectiveness). Although the majority of the literature con-

treatments (CAM). Five common CAM treatments were centrates on the western societies, researchers in the Arab

listed as: vitamins and minerals, special diets, sensory World and the Middle East region have recently begun

integration, other dietary supplements, and chelation. exploring topics related to children with autism and their

Results also emphasized some of the negative aspects of parents. For example, Crabtree ( 2007 ) stated ‘‘formal services

using CAM, such as being expensive, difficult to apply, and provided for children with disabilities in Jordan, Lebanon,

harmful.

and Palestine are usually at a rudimentary level due to factors In addition, Mohan ( 2009 ) surveyed the opinions of 28 related to socioeconomic problems and political conflict’’.

parents of children with autism in Dubai regarding the She also added ‘‘formal services in Arabian Gulf countries are

availability, quality, uptake, and the need for genetic ser- more constrained by social perceptions of disability and lack

vices and other relevant services (e.g., related services). of suitably qualified professionals’’ (p. 50).

Results showed that, alongside the need for more organi- Due to the previous mentioned factors, it might be

zations and types of genetic services, parents expressed the acceptable to indicate that providing services for children

need for more services in areas of autism specialty clinics, with disabilities (including children with autism), in most

family services, early intervention, social skills training, of the Middle Eastern countries, is facing great challenges

and diagnostic services.

and is in need of continuous development. Thus, exploring Overall, studies conducted in the first trend have con- the perceptions of parents is necessary and important in

sidered new emerging issues and have recommended them order to improve the level of services provided for children

for further explorations. These issues included: (1) services with autism and their families. The existing literature on

need to be evidence-based and represent best-practices parental perceptions was mainly presented in two major

(Hess et al. 2008 ); (2) parents need for guidance in the trends. The first trend gives a thorough report on the types,

decision-making process to select treatments for their numbers, and efficacy of services as explored by parents.

children (Green et al. 2006 ); (3) parents’ need for objective The second trend tried to socially validate these services

measures to effectively assess their children’s responsive- using parents’ evaluations (e.g., parent’s satisfactions). In

ness to treatments; and (4) the need for careful examination the following sections, we provide an overview of the lit-

of treatments efficacy and the meaning of improvement erature conducted in both trends, as well as the results and

in light of placebo and cost of treatments effects (Goin- the recommendations made in the literature.

Kochel et al. 2009 ).

Parents Reports of Services Numbers, Types, Parents’ Evaluations of Services and Efficacy

Parents’ Satisfactions

Several investigative research studies have reported the numbers, types, and efficacy of services utilized by parents

The vast and comprehensive body of research in the area of of children with ASD. Some of these research studies

service delivery recognized the importance of investigating indicated that children with autism may receive more

the satisfaction and dissatisfaction of parents of children educational and health services compared to other children

having autism regarding the received services (e.g., Par- (Bitterman et al. 2008 ).

sons and Lewis 2010 ; Parsons et al. 2009 ; Brewin et al.

2008 ; McConachie and Robinson 2006 ). Starr and Foy

Services Accessibility

( 2010 ) categorized studies on parents’ satisfaction into three types: (1) generic, in which parents of children with

Access to services was another topic explored by studies ASD were included with other categories (e.g., learning

that aimed at evaluating the current services provided. In disabilities); (2) specific, in which only parents of children

this venture, researchers were interested in exploring the with ASD were studied; and (3) comparative, in which

different sources used by parents to locate services, and the parents of children with ASD were compared with other

difficulties they face in accessing them. In this regard, parents of children with disabilities such as Down Syn-

Green ( 2007 ) identified four general sources of information drome (p. 2). Regardless of the research category, Starr and

used by parents of children with ASD to locate the ser- Foy mentioned ‘‘findings of these studies were remarkably

vices: (1) personal relationships (other parents of children similar despite the passage of time and different countries

with autism, family members, and friends), (2) professional in which the research was conducted’’ (p. 2).

help (physicians, educators, and others), (3) published Despite the fact that satisfaction was reported in some of

resources (books, journals, and web pages), and (4) group these studies, dissatisfaction had the greater focus in the

gatherings (conferences, workshops, and support group literature (e.g., Montes et al. 2009 ). Mackintosh et al.

meetings).

( 2012 ) surveyed 486 parents of children with ASD in terms Montes et al. ( 2009 ) concluded that ‘‘parents of children of their likes and dislikes about treatments used with their

with ASD were three times more likely to report difficulties children. Results revealed that 70 % of parents indicated

accessing community and school health services their more dislikes than likes with treatments provided for their

children needed, compared with parents of other children children (p. 59). Bitterman et al. ( 2008 ) found that 91 and

with special health care needs-(CSHCN)’’ (p. 412). Addi-

96 % of parents of children with ASD were satisfied with tional studies addressed other difficulties, such as long the type of services received by their children. However,

waiting lists, lack of available specialists, and bureaucracy for certain aspects of services, parents of children with

in procedures (Mackintosh et al. 2012 ; Ruble et al. 2005 ; ASD reported less satisfaction especially with the amount

Sperry et al. 1999 ).

of time their children spent with typically developing Therefore, considering the aforementioned findings, peers, the amount of time spent in regular classroom, and

service providers and policy makers could potentially gain the need for more types of services that should be provided

insights into the field of autism and its services by inves- through the school district (p. 1513).

tigating the perceptions of parents of children with autism In addition, Crabtree ( 2007 ) studied 15 mothers of

in Jordan. By doing so, it could enable them to understand children with developmental disabilities in the State of

and evaluate the current status of services, reinforce them, Sharjah in the United Arab Emirates (UAE). Results

or provide additional types of services to include the entire revealed that the majority of parents in the study reported

family (e.g., family support organizations, formal infor- dissatisfaction with the services provided for their children.

mation consultation services, and family counseling ser- Parents also reported some concerns about the adequacy of

vices) as well as the entire community (e.g., community speech and rehabilitation services, the lack of profession-

awareness and attitudes).

alism among staff, and the high demand on parents to advocate and mediate with the system to gain the best of services for the child and the family (p. 58).

The Present Study

Overall, studies in this area have identified some sources that might contribute to parents’ satisfaction and consid-

In Jordan, no specific statistics are available to document ered them emerging issues in need for further investigation.

the total number of children with autism or the number of These sources included: (1) the intensity and suitability of

children being educated or served. In 2010, the Higher services (Bitterman et al. 2008 ; Mackintosh et al. 2005 );

Council for the Affairs of Persons with Disabilities (2) the characteristics and credentials of specialists work-

(HCAPD) in Jordan published a reference book (in Arabic) ing with children (e.g., their enthusiasm, knowledge, and

called ‘‘The Index of Special Education Institutions.’’ This level of expertise) (Starr et al. 2001 ; Sperry et al. 1999 ); (3)

Index provided information about 266 special education the overall collaboration, communication, and partnerships

institutions that provide services for all children with spe- with parents (Mackintosh et al. 2012 ; Green 2007 ); (4) the

cial needs in Jordan. Only four institutions were mentioned availability and continuity of services (Ruble et al. 2005 ;

in the Index to be specialized in serving children with Krauss et al. 2003 ; Kohelr 1999 ); and (5) the cost or annual

autism.

expenditures of services (e.g., Liptak et al. 2006 ; Ja¨rbrink In addition, all of the four institutions were owned by et al. 2003 ).

the private sector and provided the following services: (1) the private sector and provided the following services: (1)

having at least one child with autism in the family, (2) child medical or health services (a pediatrician visits the insti-

age ranging from 5 to 18 years, and (3) at least one of the tution periodically); (4) transportation between the insti-

parents is alive.

tutions and children’s homes; (5) parent training The selection process narrowed the list to 85 parents. workshops, and (6) residential services.

Each institution then announced a call for a meeting with Unfortunately, no studies in Jordan have been conducted

these parents by sending a flyer via children’s bags. The to examine the perceptions of parents pertaining to the

flyer explained the purpose of the meeting, date, time, current services provided (e.g., accessibility methods and

location, and a brief summary of the study. The meeting difficulties, parents’ satisfaction, and needs for new types

was held in one of the institutions for the following rea- of services). Therefore, the current study aims to survey the

sons: (1) the institution is the biggest one in size among the parents of children with autism to investigate their per-

other institutions, (2) the institution offered to provide free ceptions with current services provided in Jordan. Like

transportation for parents (if needed), and (3) the institution other studies (e.g., Mohan 2009 ; Montes et al. 2009 ;

has an auditorium that is equipped with the needed tech- Kohelr 1999 ), this study is descriptive in nature and utilizes

nical equipments (e.g., computer, slideshow, speakers and

a questionnaire to investigate the perceptions of parents. microphones). The meeting took place in the evening and Using survey research might be adequate for this study

only the parents and the authors of the article were avail- since it is the first one to be implemented in Jordan and it is

able on site. A total of 60 parents, who voluntarily decided intended to solicit the perceptions of parents at the

to participate in the study, attended the meeting and signed moment. Accordingly, this study answers the following

a consent form.

research questions: Table 1 presents the participants demographics. Out of

1. What types of services are being received by parents the 60 families, 40 (66.7 %; mean age = 41 years,

currently? SD = 9.8) identified their relationship as mothers, 11

2. What are the sources of information used by parents to (18.3 %; mean age = 42 years; SD = 9.4) as fathers, and

9 (15 %; mean age = 34; SD = 1.1) as both living parents.

locate these services?

3. What difficulties do parents face when locating these The mean age of all parents was 41.1 years (SD = 11.59).

Their age ranged from 23 to 61 years. All families indi- services? cated having only one child with autism. Children with

4. How satisfied are the parents regarding the services currently received?

autism were 45 males (75 %; mean age = 10.3 years;

5. What are the most needed services perceived by SD = 3.70) and 15 females (25 %; mean age = 9.6 years;

parents in Jordan? SD = 3.99). The overall mean age of children was ten

years (SD = 3.75). Their age ranged from five to 18 years.

48.3 % (n = 29) of children were judged by their parents as being verbal, while 51.7 % (n = 31) as nonverbal (see Method

Table 1 for more details).

Setting and Participants

Research Instrument

A convenient sample of 60 families participated in this The questionnaire was developed on the bases of a litera- study. Participants were recruited from the four special

ture review and on the experiences of the authors. The education institutions specified in the Index (HCAPD

questionnaire consisted of five sections developed sepa- 2010 ). All four institutions were private, separate facilities

rately to answer the research questions. The first section that typically serve children with autism. Two of them

asked for demographic information about parents and their provided residential services for additional fees.

children. The second section consisted of eight services The recruitment process entailed a number of sub-

originally stated in the Index (HCAPD 2010 ) as the type of sequent steps. First, the first author visited each institution

services provided by the special education institutions in and met with the administrators to explain the purposes of

Jordan (see Table 2 for a list of these services). It included the study, the characteristics of prospective participants,

an option (named other) asking parents to indicate if they and the procedures of the study. Second, a contact list of

had received services other than the ones included in the prospective families was obtained from each institution,

section. The third section consisted of 12 different methods which included basic information about each family

used by parents to locate the services for their children (see (names, addresses, and phone numbers). Third, a total of 93

Table 3 for a list of these methods). These methods are families were listed and went through a selection process.

originally taken and reframed from Green ( 2007 ) and

Table 1 Participants demographics Table 2 Percentages of parents reported received services and their locations

Variable

N (%)

Location of service Parents’ characteristics

Type of services

%’s

Relationship

Included in the index

Mother

52 86.7 Inside the institution Father

Speech therapy

46 76.7 Inside the institution Both

Occupational therapy

37 61.7 Inside the institution Age

Physical therapy

33 55 Inside the institution Less than 30 years

Transportation assistance

18 30 Inside the institution 30–45

Parent training

14 23.3 Inside the institution Above 45

Residential services

Health or medical services 12 20 Inside the institution Educational level

Other

Below high school

37 61.7 Private clinics or at home High school

Private speech sessions

27 45 At home College degree

Private teaching sessions

18 30 Private clinics in hospitals Bachelor degree

Diet

12 20 Private authorized clinics Graduate degree

Hyperbaric oxygen

Family counseling

8 13.3 Private counseling clinics

4 6.7 – Lower class

Socioeconomic status a Vocational rehabilitation

Middle class

Table 3 Percentages of parents’ ratings of services locating methods Characteristics of children

Upper class

Parents responses Gender

Accessibility method

n (%) Female

Age range Governmental agencies (e.g., Higher Council) 47 (78.3) 13 (21.7) 5–8

Other parents of children with autism

Internet resource (e.g., facebook)

Professionals in child’s institute

25 (41.7) 35 (58.3) Verbal

Communication level a Private consultation agencies

24 (40) 36 (60) Nonverbal

Media resource (newspapers, flyers, TV

advertisement)

Number of years in educational settings

22 (36.7) 38 (63.3) Less than 3 years

By chance

Other professionals (e.g., therapists, medical 15 (25) 45 (75)

14 (23.3) 46 (76.7) More than 5 years

Conferences/workshops

Family member (including extended family) 12 (20) 48 (80) a Classification made based on parents judgments

Research journals

3 (5) 57 (95) Mackintosh et al. ( 2005 ) studies. The section also included

Books

additional space for parents to express any difficulties they provided ones. The purpose of this section was to direct the encountered while locating or accessing these services.

attention toward any new types of services that might be The fourth section included 20 items using a five-point

needed for future considerations.

Likert scale that ranged from ‘‘not very satisfied’’ to ‘‘very

A panel of 6 professors in the fields of special education satisfied ’’ that asks parents to rate their satisfaction with the

and educational psychology were asked to review the

questionnaire to assess its validity. A cover letter was Items in this section were taken and reframed from

currently received services (see Table 4 for a list of items).

attached to the questionnaire and explained the research reviewing relevant studies (e.g., Starr et al. 2006 ; Whitaker

purposes, the origins of the items (including a full text of 2007 ; Kohelr 1999 ). The last section of the questionnaire

the reviewed articles from the literature), and an overview used an open-ended question format asking parents to list

of the entire methodological procedures. The review panel what they perceived as needed services besides the current

confirmed the suitability of the questionnaire to the purpose

Table 4 Parents’ responses on section four items ranked by means from highest to lowest Items

Satisfaction level Specialists’ commitment, enthusiasm, and responsibility

SD

3.18 1.26 Average Specialists knowledge about autism

3.17 1.07 Average Specialists ability to manage child’s behavior

3.10 1.13 Average Specialists understanding of child difficulties

3.08 1.27 Average Overall child progress as a result of received service

3.05 1.21 Average Child’s current educational setting

3.03 0.97 Average Overall quality of child’s education

2.72 1.10 Average Suitability of services to parents expectations and needs

2.63 1.17 Average Suitability of services to child’s needs

2.52 1.42 Average Overall intensity of each service

2.50 1.43 Average Overall number of available received services

2.47 1.22 Average Overall type of available services (e.g., medical, related, and leisure)

2.43 1.38 Average Availability of services regardless of child location

2.37 1.34 Average Availability of services regardless of child age

2.33 1.33 Low Consistency of services over time, location, and specialists

2.13 1.04 Low Overall services accessibility

2.10 1.15 Low Adequacy of parents’ involvement in planning and implementing child’s services

2.10 1.25 Low Frequency of collaboration between specialists and parents.

2.08 1.09 Low Adequacy of collaboration between specialists and parents.

1.97 0.95 Low Overall cost of services

1.88 1.10 Low Likert ratings were given values ranging from 1 to 5 corresponding to ‘‘not very satisfied’’ to ‘‘very satisfied’’ respectively. Means are based on

these values

of the study with minor modifications in language struc- All modifications were revised and implemented. The ture. They also suggested distributing the questionnaire

same parents were then asked for the second time to among the four administrators of the special education

indicate if the new modifications improved the suitability institutions participating in the study to obtain more feed-

of the questionnaire. Indeed, the questionnaire was con- back regarding its suitability.

firmed to be ready for use in the study. To obtain reliability All needed modifications in language structure were

indicators, a Cronbach Alpha was computed for the items made and revised by an Arabic language specialist. The

included in section four and was found to be 0.819. modified version of the questionnaire was given again to the professors to ensure that the language structure was

Data Collection

appropriate. Two weeks later, the questionnaire was dis- tributed to administrators taking into account the same

Copies of the questionnaire forms were personally delivered procedures followed by the panel. All administrators

to the administrator of each institution participating in this highlighted the importance of the topic under investigation

study. They were asked to distribute the questionnaires to and the suitability of the questionnaire to the purposes of

parents who previously agreed to participate in the study. In the study.

this case, parents should have received a sealed envelope Finally, a pilot testing of the questionnaire implemented

containing the questionnaire form with a cover letter on seven families (not included the sample) revealed that

explaining the purposes and the importance of the study. the questionnaire was appropriate to measure parents’

The instructions on the cover letter asked parents to fill out perceptions. Parents’ asked for minor modifications in the

the forms, insert them in the envelopes, seal the envelopes, language structure of the items included in section four of

and send them back to the institutions. In addition, the the questionnaire. They also suggested each section be

instructions asked parents to discard the received envelopes presented separately with its instructions in a specific frame

if they were unsealed or there was evidence of tampering. In with borders which would separate the sections from each

this case, parents can immediately contact the first author for other.

help using the cell phone number provided.

Two weeks after the distribution of the questionnaires, classroom by implementing an IEP via a special education each administrator received a phone call reminder from

teacher), related services were reported by parents to be the the second author to encourage parents to send back the

most received services and included receiving speech completed questionnaires as well as to follow up on the

therapy (86.7 %), occupational therapy (76.7 %), and collection process. Four weeks later, the second author

physical therapy (61.7 %). On the other hand, vocational collected all completed questionnaires, resulting in a

rehabilitation services (6.7 %), family counseling services response rate of 100 %. One week later, a letter was sent to

(13.3 %), and health or medical services (20 %) were parents thanking them for their participation and contri-

reported to be the lowest received services. bution to the current study.

Moreover, 61.7 % of the participating parents indicated receiving extra speech sessions outside the child’s institu- Data Analysis

tion (in private clinics or at homes); 45 % received addi- tional special education (teaching) sessions outside the

The data were analyzed using the Statistical Package for institutions (at home by a private special education tea- the Social Sciences (SPSS-16.0). Descriptive statistics

cher); 30 % of parents mentioned that their children are on (e.g., frequencies, means, standard deviations, ranges, and

GF/CF diet plan that are monitored by nutritional clinics in percentages) were presented in the results section. In

private hospitals; 20 % indicated that their children are addition, one-way ANOVA and independent samples t test

currently trying Hyperbaric Oxygen therapy in private were used for testing any statistically significant differ-

clinics which are authorized by the Autism Research ences between participants’ demographic variables (e.g.,

Institute (following DAN protocol). parents’ educational level and socioeconomic status, chil-

Results of one-way ANOVA revealed no significant dif- dren’s age range, communication level, and gender) and

ferences in the mean number of received services according to the mean number of received services, as well as the

parents’ educational level, F(4, 55) = 1.87, p = 0.716; overall satisfaction with the items included in section four

socioeconomic status F(2, 57) = 0.080, p = 0.923; chil- of the questionnaire. A p value of 0.05 was retained as the

dren’s age range F(2, 57) = 1.73, p = 0.186; and number of level for statistical significance in the analysis. The

years in educational settings, F(2, 57) = 0.989, p = 0.378. In accessibility and difficulties of services and parents’ per-

addition, results of independent samples t test revealed sig- ceived needed services were summarized and presented

nificant differences in the mean number of services between alongside their frequencies and percentages.

male (n = 45; M = 6.60, SD = 1.91) and female (n = 15; M = 5.47, SD = 1.40) children toward male children, t (58) = -2.10, p = 0.039. However, results of independent

Results samples t test that compared the mean number of services in verbal (n = 29, M = 6.48, SD = 1.63) and nonverbal

Type of Received Services (n = 31, M = 6.16, SD = 2.05) children revealed no sig- nificant difference between both groups, t(58) = 0.668,

Table 2 presents parents’ reports of the received services

p = 0.507.

(in order based on percentages from highest to lowest). A total of 14 services were reported as currently being

Locating Services: Sources of Information received services. All services mentioned in the Index

and Difficulties

(HCAPD 2010 ) as provided services by the four institu- tions were reported as received ones. In addition, parents

Table 3 presents the percentages of parents’ responses reported that six additional services (mentioned under the

regarding each method (sources of information) utilized option ‘‘others’’ in the questionnaire) were received and

in locating the services. On average, parents reported provided outside the institutions. At the time of this study,

using four different methods (range 2–7) to locate the the mean number of current services being received by

services. As presented in Table 3 , getting referral from parents was 6.3 (SD = 1.85) with a range from 2 to 11

governmental agencies (e.g., the Higher Council, Minis- services. Specifically, parents received a mean number of

try of Social Development) was the most common

4.5 (SD = 1.09; range 2–7) services from their children’s method used by parents. This method is followed by institutions; while 70 % (n = 42) of parents received a

knowing about the services from other parents, using an mean number of 2.5 (SD = 1.01; range 1–5) additional

Internet resource, and receiving information from other services outside the institutions.

professionals working in the child’s institution. On the Excluding that the four institutions under investigation

other hand, using books, research journals, and family were merely educational in nature and, thus, provided

members were the least methods utilized by parents (see special education services (i.e., presenting instructions in a

Table 3 for more details).

Additionally, parents were asked if they had faced any according to parents’ and children’s demographics, the difficulties in the process of locating these services. A

results of one-way ANOVA revealed no significant dif- common difficulty stated by parents was financial in nature.

ferences in parents’ overall satisfaction which could be The majority of parents indicated that services were very

attributed to parents’ level of education, F(4, 55) = 1.79, expensive and exceeded their financial ability (n = 52,

p = 0.144, or socioeconomic status F(2, 57) = 0.480,

86 %). Moreover, parents stated other difficulties that p = 0.621. Similarly, results of one-way ANOVA revealed included finding appropriate and specialized services

no significant differences that could be attributed to chil- (n = 39, 65 %); locating the correct address of services

dren’s age range, F(2, 57) = 2.77, p = 0.071, or children’s (n = 33, 55 %); long waiting lists, paper work, and

number of years in educational settings F(2, 57) = 1.877, bureaucracy of the procedures (n = 26, 43 %); traveling to

p = 0.162. In addition, results of independent sample t test services (n = 23, 38 %); and receiving services regardless

revealed no statistically significant differences between of the child’s age (n = 10, 16 %).

parents overall satisfaction and children’s gender t (58) = 0.607, p = 0.54, or level of communication abil-

Parents’ Satisfaction

ity, t(58) = 3.74, p = 0.072.

Section four in the questionnaire included 20 items that

Needed Services

measure parents’ satisfaction with the received services. The overall mean of parents’ satisfaction with all items

The last section of the questionnaire asked parents to list included in the section was 2.54 (SD = 0.53; range

the most needed services related to autism in Jordan. As 1.88–3.18), reflecting a slight average satisfaction. This

presented in Table 5 , the majority of parents (83 %, was based on dividing parents’ responses into three satis-

n = 50) expressed their need for financial support to faction categories: (1) low satisfaction category with a

reduce the financial burden caused by the cost of services. range of (1–2.33), (2) average satisfaction with a range of

Around (80 %, n = 43) of parents believed that health, (2.34–3.66), and (3) high satisfaction with a range of

medical, and pharmacological services (e.g., DAN proto- (3.67–5.00).

col) were expensive and were only provided in private Table 4 presents the responses of parents on each item

clinics. In this manner, parents stated the need for the ranked by its mean from highest to lowest with an indi-

government to provide them with these services (e.g., cation of the satisfaction category of each item. Out of the

Ministry of Health) or to include these services within their

20 items, 13 items had a mean of satisfaction within the health insurance plans currently provided by the govern- average satisfaction category; seven items had a mean of

ment. Other stated needs included: providing early inter- satisfaction within the low satisfaction category; and none

vention and inclusive teaching, establishing additional of the items had a mean within the high satisfaction cate-

autism specialized governmental institutions, providing gory. Among the 13 items presented in the average satis- faction category, items related to the characteristics of specialists (professional and personal) were the items with

Table 5 Percentages of parent’s desires the highest mean of satisfaction. These items included the

n enthusiasm %’s and personal commitment of specialist (M = 3.18, SD = 1.26; n = 40, 66.7 %), the specialists’

Parents’ needed services

50 83 knowledge about autism (M = 3.17, SD = 1.07; n = 41,

Providing financial support

Providing medical and pharmacological services by the 43 80

68.3 %), the ability of specialists to manage the child’s governmental sectors instead of the private ones, or if behavior (M = 3.10, SD = 1.13; n = 40, 66.7 %), and the

these services can be covered by their governmental insurance coverage plans

specialists’ understanding of the child’s difficulties Providing early intervention and inclusive teaching

43 (M = 3.08, SD = 1.27; n = 36, 60 %). 72

practices

On the other hand, among the seven items presented in Establishing more autism specialized institutions 38 64 the low satisfaction category, items in the areas of cost of

Increasing the number and intensity of services to avoid 34 58 services (M = 1.88, SD = 1.10; n = 15, 25 %), profes-

seeking other services

sional-parents collaboration (both adequacy and frequency Creating planned, well organized, and effective family 31 52 of collaboration), and adequacy of parents’ involvement in

counseling services

child’s education (M = 2.10, SD = 1.25; n = 16, 26.7 %) Establishing parents’ support organizations 24 40 were respectively presented with the lowest mean of sat-

Increasing awareness about autism in the community by 22 38 isfaction in the parents’ responses.

enhancing the role of the media (especially TV and radio Moreover, when testing for any significant differences in

channels) and initiating specialized conferences and training workshops

parents’ overall mean of satisfaction on all items included, parents’ overall mean of satisfaction on all items included,

services their children receive’’ (p. 1509). Montes et al. ( 2009 ) concluded ‘‘parents of children with ASDs reported less access to and more dissatisfaction with school and

Discussion community health services than other parents with special health care needs’’ (p. 407).

The purpose of this study was to investigate the perceptions It is expected that issues related to parents’ perception of and experiences of parents of children with autism

satisfaction in Jordan could be similar to those mentioned regarding the current provided services in Jordan. Sixty

in other countries (e.g., USA, Canada, Flanders, and Brit- parents participated in the study and responded to a ques-

ain) where the educational systems, legislations, degree of tionnaire of five sections. Examining parents’ satisfaction

inclusion and teacher training are different than in Jordan. is considered beneficial since parents are capable of

This result is valid as Starr and Foy ( 2010 ) mentioned that informing educators about the suitability of the educational

‘‘similarities of parent perceptions across the research lit- programs (Goin-Kochel et al. 2009 ).

erature despite the passage of time and differences in

A total of 14 services were reported being received by education systems are striking…and even more surprising parents in this study. The mean number of the received

when considering differences in legislations, degree of services at the time of this study was 6.3 (SD = 1.85, range

inclusion, and teacher training’’ (p. 8). Results of our study 2–11). This mean falls within the range mentioned by other

highlighted several issues that contribute to parents’ aver- studies (e.g., Goin-Kochel et al. 2009 ; Hess et al. 2008 ).

age satisfaction with services provided in Jordan. These All services stated in the Index (HCAPD, 2010) were

issues and their implications will be presented subse- actually received. Six additional services were reported as

quently hereafter.

extra services which were received privately by families in First, parents mentioned that receiving services was not different locations with multiple providers. Although

unified in one place; rather it consists of multiple places reports of some studies indicated differences in the mean

with interactions with multiple providers. This type of number of services according to the child’s age and level of

service delivery system consists of multiple issues that severity (e.g., Green et al. 2006 ), results of this study

might be problematic for parents since it impacts their showed no significant differences according to these two

overall experiences with the educational process (Kohelr factors. This might be attributed to limitations in our

1999 ). For example, 70 % of parents indicated that extra sample size, the unequal distribution of participants among

services were being utilized privately outside their chil- these variables, lack of ability to confirm children’s level of

dren’s institutions. It is noted that receiving these extra severity, and the consideration of children with autism

services, alongside the regular fee they already pay to the only.

institutions, increases the financial burden on parents. This With the exclusion of special education services (since

financial burden was documented in the literature (Ja¨rbrink all children are enrolled in special education institutions),

et al. 2003 ) and was considered as an important source that related services (including speech, occupational, and

might lower parents’ satisfaction (Wang et al. 2012 ). physical therapies) were reported to be the most received

In addition, changing the delivery system by unifying the services; a finding that is similar to results found in other

services under one umbrella (e.g., Ministry of Social studies (e.g., Kohelr 1999 ). This result might be attributed

Development or the Higher Council) might solve the prob- to factors related to children’s needs, especially if we

lem. It is important for the government as well as the Higher recognize that autism affects the child’s ability to com-

Council and other stakeholders to consider the financial municate and behave within an age manner. In our sample,

burden related to the cost of services. Another implication around 51 % of children were judged to be nonverbal.

might include a reconsideration of the accreditation process Therefore, it is expected that the majority of them will need

used by the Higher Council in relation to special education speech language therapy, potentially causing parents to

institutions. It might be advisable for all institutions to report this service as the most received one.

provide comprehensive and evidence-based services. Only Parents’ overall satisfaction with services as measured

the services that have been documented in the field as in section four of the questionnaire was slightly on the

effective for children with autism should be provided. Other average category of satisfaction. All items included in

services (e.g., pharmacological) must be provided and the section ranged from the low satisfaction category to the

monitored under the unified umbrella suggested earlier to

ensure their effectiveness as well as to protect parents from none of the items reached the high satisfaction category.

average satisfaction category (see Table 4 ). Unfortunately,

what could be called ‘‘unethical costly practices.’’ Bitterman et al. ( 2008 ) stated ‘‘past research and patterns of

Second, parent-professional partnership as well as the litigation suggest that parents of children with ASD are not

degree of parents’ involvement is considered a double degree of parents’ involvement is considered a double

vices, community awareness, financial support, and autism parents in our study were less satisfied with items that

specialized clinics were presented in the study; but they

were not exclusive to Jordan alone. siveness of these topics in this research and other studies

targeted this important topic (see Table 4 ). The perva-

Another implication is directed toward the government (e.g., Whitaker 2007 ; Batten et al. 2006 ) highlights the

and other stakeholders in Jordan to invest in these ser- need to consider them in the planning and provisioning of

vices. For example, parents in Jordan mainly complained education programs for children with autism (Starr and Foy

about the cost of services and the financial burden related 2010 ).

to these services, especially when connected to receiving Third, contrary to results mentioned in the literature

medical and health services. This financial burden should (e.g., Starr and Foy 2010 ; Renty and Roeyers 2006 ;

not be found especially when considering Article number Crabtree 2007 ), the characteristics of specialists, such as

4 mentioned in the Law on the Rights of Persons with commitment, knowledge about autism, the ability to

disabilities mandated in Jordan in 2007. In this regard, manage the child’s behavior, and the understanding of the

Article number 4 required providing medical therapeutic child’s difficulties were presented with average level of

services and free medical insurance to all persons with

disabilities in the country (HCAPD 2007 ). Therefore, the attributed to the type of service delivery system in which a

satisfaction in this study (see Table 4 ). This result might be

government should consider these services or, at least, limited number of institutions and specialists are found in

include them within its health insurance plans provided the country, hence making them the only appropriate and

for parents.

available option. Another explanation might be culturally Finally, it is agreed upon in the field that early inter- connected to the general feeling of respect that cultural

vention, inclusion, and family counseling are important values in Jordan persevere toward teachers.

services for children with autism (e.g., Starr and Foy 2010 ; Fourth, the difficulties faced by parents during the pro-

Kohelr 1999 ). Although some inclusive practices have cess of obtaining services are important. Difficulty

been officially implemented in Jordan (AL Khatib and AL obtaining services was seen as a major issue connected to

Khatib 2008 ), children with autism were excluded from parents’ satisfaction (Mackintosh et al. 2012 ). When dif-

them. What is needed is a unified, official, and govern- ficulties are presented, parents’ level of stress, frustration,

mental effort to organize, provide, and monitor such types and discontentment increased (Stoner et al. 2005 ). This,

of important services to better serve the children and their itself, impacts their sense of satisfaction. These difficulties

families.

are anticipated and occurred much more frequently in services with an ASD-specific approach (Renty and Roeyers 2006 , p. 385).

Conclusions

In the same manner, the methods used by parents for locating services were similar, to some extent, with the

The overall results obtained in this study are important in methods mentioned by other studies (e.g., Green 2007 ).

understanding the current status of services as seen by However, these methods need greater attention. For

parents. The implications mentioned in the article empha- example, 51 % of parents in this study depend on Internet

sized the necessity for immediate enhancement in the resources, 41 % rely on consultations made by private

service delivery system to consider parents’ opinions as agencies, and 40 % depend on media (e.g., TV or news-

concluded from their responses. Several issues appear to be paper advertisements) for locating a service. In their study,

in need of improvement. These issues expressed the need Mackintosh et al. ( 2005 ) discussed the risks that might

for unifying the delivered services under one umbrella, to occur when parents rely on these types of methods. They

enhance parents-professional partnerships, remove the mentioned that these types of methods provide information

financial burden caused by the cost of services, and that may or may not be reliable or accurate, and are

improve accessibility methods. In addition, it appears that sometimes harmful. Given this result, service providers in

providing early intervention, inclusive teaching, and family Jordan need to develop sensitivity and awareness about

services is important in introducing a comprehensive ser- these methods in order to help parents gain strong educa-

vice delivery system. In light of the overall results and their tional experience to the optimal level.

implications, future research endeavors are, indeed, Finally, the perceived needed services stated in Table 5 required and urgent. These research studies can describe

represent parents’ voices for a change in the service the situation more precisely, and compare the perceptions delivery system. It is interesting to note the similarities

of parents of children with autism with other parents of found between the needed services mentioned by parents in

children with other disabilities or even with intervention this study and the recommendations by Mohan ( 2009 ).

providers. Overall, a reformation process for the service providers. Overall, a reformation process for the service

children with developmental disabilities in the United Arab Emirates. Disability & Society, 22(1), 49–62.

Dunlap, G., Iovannone, R., & Kincaid, D. (2008). Essential compo- Limitations