CHAPTER ONE

INTRODUCTION

1.1 BACKGROUND TO THE STUDY

Autism spectrum disorder (ASD) is a developmental disability that can cause significant social,
communication and behavioral challenges. In the latest edition of the Diagnostic and Statistical Manual of
Mental Disorders (fifth edition), autism is classified as an autism spectrum disorder (ASD), along with
other disorders such as Asperger syndrome and pervasive developmental disorder not otherwise specified.
American Psychiatric Association defined ASDs as pervasive and lifelong neurodevelopmental disorders,
and autism is characterized by impaired socialization, impaired verbal and nonverbal communication,
restricted interests, and repetitive patterns of behavior. Moreover, autism is considered as one of the
fastest growing disabilities in children.

1.2 STATEMENT OF THE PROBLEM

Elsabbagh et al (2012) showed that worldwide, the median prevalence of autism is 17 in 10,000. On the
other hand, Bakare and his colleagues (2011) showed that in underdeveloped countries in Africa the
prevalence of autism ranged from 0.7% to 33.6% among cases seen in these clinics. Although there has
been more research on ASDs and more efforts to increase knowledge worldwide, most of the studies,
Fombonne (2003) and Stone (1987), across different nations reported a wide variation among health care
providers in diagnosis, treatment, and prognosis of autism.

Stone (1987) showed that many professionals in many disciplines did not have exact knowledge of autism
and its manifestations in children and adolescents. For instance, an Indian study by Daley and colleague
(2002) that assessed diagnostic practices among health care professionals for autism; 165 psychiatrists,
677 pediatricians, and 95 psychologists were included in the survey. The study reported that professionals
perceived autism as a rare disorder, and 80.0% reported that the diagnosis of autism is difficult. In a study
in Nigeria by Bakare et al (2009), the mean score on the Knowledge about Childhood Autism Among
Healthcare Workers (KCAHW) questionnaire was 10.67 ± 3.73 out of a possible score of 19; this revealed
a low level of knowledge compared with the mean score of 12.35 ± 4.40 obtained among health care
workers in an earlier study. Unfortunately, several studies in developed countries also showed
considerably late ASD diagnosis. For example, in United Kingdom, physicians diagnosed ASD in only
8.0% of children on their first clinic visit. Wilkinson (2011) showed that in many developed countries, the
mean age at diagnosis is 7 years, even though it is best to diagnose the condition before the age of 3
years.11

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Fernell (2013) showed that early identification is one of the main causes of a favorable outcome and
social adaptation in children with autism. Reichow et al (2011) proved that early diagnosis and
intervention as well as multidisciplinary specialist care services can lead to positive outcomes, and this
characterizes the management of autism in developed countries. Generally, Newton (2013) revealed that
in Africa there is limited knowledge among physicians, lower community awareness, and a dearth of
specialist care services. Bakare et al (2009) and Igwe (2011) showed that health care workers in sub-
Saharan African subcultures were also found to have various misconceptions about the cause, treatment,
and prognosis of ASDs, and according to African Network for the Prevention and Protection against
Child Abuse and Neglect (2007) there was a low to moderate level of knowledge of autism among the
various categories of health care workers. Similarly, in Nigeria, few researchers have studied such
disease, and very little was known about health workers’ knowledge of autism.

In developed countries there is increasing public and professional awareness of autism spectrum disorders
with early recognition, diagnosis and interventions that are known to improve prognosis. Bakare et al
(2014) and Lagunju (2014) showed that poor knowledge about autism among healthcare workers who are
members of multidisciplinary teams that care for such children may be a major barrier to early
interventions that could improve quality of life and prognosis in childhood autism in sub-Sahara Africa.

In designing programs to raise the community level of awareness about childhood autism in sub-Saharan
Africa, it is logical to use the healthcare workers which will be a good contact point for education of the
general public. Assessing their baseline awareness and knowledge about childhood autism to detect areas
of knowledge gap is an essential ingredient in starting off programs that would be aimed at early
diagnosis and interventions.

This study assessed awareness, attitude and the baseline knowledge of healthcare workers working in
Akoko South-west local government of Ondo State, Nigeria on childhood autism. It also assessed the
opinion of the same healthcare workers on management of autism in Nigeria.

1.3 AIM

This study assessed awareness, attitude, and management of autism among health workers in Akoko
South-West local government area of Ondo State

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1.4 OBJECTIVES

(1) To determine the socio-demographic characteristics of the participants

(2) To assess level of awareness of health workers in Akoko South-west on autism
(3) To determine health workers attitude to autism
(4) To assess health workers knowledge on management of autism

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 CHAPTER TWO

LITERATURE REVIEW

2.1 DEFINITION.

Autism spectrum disorders (ASDs) are a neurodevelopmental syndrome with growing global health
concern.1,7 This syndrome is characterized by deficits in social and communication skills and restricted
and repetitive behaviour; and these adversely impact quality of life of those affected as well as their
families.1,21,22

2.2 BURDEN OF THE DISEASE

Globally, Fombonne (2005) showed that one in every 160 persons is estimated to live with ASD,
contributing to 7.6 million disability life adjusted years. However, Bakare (2009) showed that this burden
is currently underestimated since prevalence of ASD in the African region and other low- or middle-
income regions is still unclear. One study conducted by Seif Eldin (2008), for example, that involved two
North African countries documented a high frequency of ASD at 11.5% and 33.6% among African
children with developmental disorders. Other studies conducted by Barnevik-olsson (2008) among
children of African descent have reported high occurrence of ASD. Similarly, studies by Belhadj et al
(2006) and Mankoski (2006) on ASD document a large burden of nonverbal ASD cases (50−71%) and
over 60% comorbid intellectual disability among African children with ASD. These and other distinctive
traits of ASD in Africa such as a potential infectious aetiology, late diagnosis, and poor management
accentuate the need for more research focus and public health response in this region.

As of March 26, 2021, the Centre for Disease Control and Prevention (CDC) report that among 8-year-
old children, one in 54 are autistic. This number has increased from the one in 59 prevalence reported in
previous estimates by CDC. With autism rates on the increase, the scientific community has become all
the more interested in uncovering the factors linked with autism.

According to Centre for Disease Control and Prevention (CDC), some scientists speculate that gene
variants cause autism, while others believe environmental factors, such as exposure to toxins, contribute
to this neurotype. Still others theorize imbalances in the intestinal microbiome may be at play.

Despite the fact that symptoms of autism present early, the age of diagnosis is typically not before 4 years
as shown by Malhi (2003). In India, Malhi and colleague (2003) showed that most children with ASD are

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diagnosed between 3 and 6 years of age. Daley (2004) showed that parents, on an average, reported
consulting 3 to 5 clinicians before receiving a reliable diagnosis. Moreover, Bakare (2012), Malhi (2003)
and Daley (2004) indicate that many children may get wrong diagnostic labels such as mental retardation.
A number of factors have been implicated in delayed diagnosis by Bakare (2012), Habib (2008),
Barnevik-olsson (2008), and CDC (2021), including limited knowledge of ASD among physicians, lack
of awareness regarding screening and diagnostic ASD instruments for young children, and doubts about
the validity of an early diagnosis of ASD.

Malhi (2003) revealed that most parents also express early concerns about the development of their
children and notice behavioral abnormalities generally in the first 2 years of life. However, confirmation
of diagnosis does not occur till 3-4 years of age or later, and this often results in extended period of time
before referring families of children with ASD to specialists for assessment according to CDC.

2.3 SIGNS AND SYMPTOMS OF AUTISM

People with ASD often have problems with social, emotional, and communication skills. They might
repeat certain behaviors and might not want change in their daily activities. Many people with ASD also
have different ways of learning, paying attention, or reacting to things. Signs of ASD begin during early
childhood and typically last throughout a person’s life.28

Children or adults with ASD might:

 not point at objects to show interest (for example, not point at an airplane flying over)
 not look at objects when another person points at them
 have trouble relating to others or not have an interest in other people at all
 avoid eye contact and want to be alone
 have trouble understanding other people’s feelings or talking about their own feelings
 prefer not to be held or cuddled, or might cuddle only when they want to
 appear to be unaware when people talk to them, but respond to other sounds
 be very interested in people, but not know how to talk, play, or relate to them
 repeat or echo words or phrases said to them, or repeat words or phrases in place of normal
language
 have trouble expressing their needs using typical words or motions
 not play “pretend” games (for example, not pretend to “feed” a doll)
 repeat actions over and over again
 have trouble adapting when a routine change

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  have unusual reactions to the way things smell, taste, look, feel, or sound
 lose skills they once had (for example, stop saying words they were using)

2.4 DIAGNOSIS OF AUTISM

 Diagnosing ASD can be difficult since there is no medical test, like a blood test, to diagnose the
disorders. Doctors look at the child’s behavior and development to make a diagnosis.
 ASD can sometimes be detected at 18 months or younger. By age 2, a diagnosis by an
experienced professional can be considered very reliable. 1 However, many children do not
receive a final diagnosis until much older. This delay means that children with ASD might not get
the early help they need.

2.5 TREATMENT OF AUSTISM

 There is currently no cure for ASD. However, research shows that early intervention treatment
services can improve a child’s development. Early intervention services help children from birth
to 3 years old (36 months) learn important skills. Services can include therapy to help the child
talk, walk, and interact with others.

 In addition, treatment for particular symptoms, such as speech therapy for language delays, often
does not need to wait for a formal ASD diagnosis.

2.6 CAUSES AND RISK FACTORS OF AUTISM

The cause of ASD is not known. However, there may be many different factors that make a child more
likely to have an ASD, including environmental, biologic and genetic factors. 28

 Most scientists agree that genes are one of the risk factors that can make a person more likely to
develop ASD.
 Children who have a sibling with ASD are at a higher risk of also having ASD.
 Individuals with certain genetic or chromosomal conditions, such as fragile X syndrome or
tuberous sclerosis, can have a greater chance of having ASD.
 When taken during pregnancy, the prescription drugs valproic acid and thalidomide have been
linked with a higher risk of ASD.
 There is some evidence that the critical period for developing ASD occurs before, during, and
immediately after birth.

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  Children born to older parents are at greater risk for having ASD.

2.7 WHO IS AFFECTED?

ASD occurs in all racial, ethnic, and socioeconomic groups, but is about 4 times more common among
boys than among girls.

2.8 ECONOMIC COSTS

 The total costs per year for children with ASD in the United States were estimated to be between
$11.5 billion – $60.9 billion (2011 US dollars). This significant economic burden represents a
variety of direct and in-direct costs, from medical care to special education to lost parental
productivity.

2.9 VACCINE SAFETY

 Some people have had concerns that ASD might be linked to the vaccines children receive, but
studies have shown that there is no link between receiving vaccines and developing ASD. 28

To assess individual's beliefs and knowledge about childhood autism, Stone developed the Autism
Survey.8 This has been used to compare knowledge and beliefs of individuals from different professional
philosophies, teachers and parents about autism. Stone subsequently used the survey to compare the
views of Paediatricians, clinical Psychologists, school Psychologists, speech and language Pathologists
and autism specialists. Results indicated that individual disciplines studied displayed variations and
historic misconceptions regarding social, emotional and cognitive aspects of autism. However, the autism
specialists viewed the cognitive abilities of individuals with autism more realistically than other
professionals in the study.

Awareness and adequate knowledge about childhood autism among healthcare workers would ensure
early diagnosis of children with autism in the community and this in turn would allow early interventions
which had been shown to improve prognosis in children with autism. However, there is paucity of study
in this part of the country on awareness, attitude and management of autism among health workers hence
the need for this study in order to narrow the interval between parental concern, getting a reliable
diagnosis and management of autism.

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Current literature addressing management of childhood autism and other developmental disorders
advocate multidisciplinary approach which include involving the children and their parents. 28 This
multidisciplinary approach incorporates behavioral therapy, special education, communication and social
skill training and management of disruptive behavior with psychotropic medications when indicated.
Services and professionals that would ensure multidisciplinary approach to management of children with
developmental disorders may be lacking in this environment which is one of the reasons for this study.

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 CHAPTER THREE

MATERIALS AND METHODS

3.1 STUDY AREA

The study was conducted among health workers in Akoko South-west local government area of Ondo
State. Akoko South-west is a Local Government Area in Ondo State, Nigeria. Its headquarter is in the
town of Oke-Oka. It has its area council at Oba-Akoko It has an area of 226 km2 and a population of
239,486 at the 2006 census. Akoko South West Local Government Area consisting 15 districts Akungba,
Ikun, Oba, Oka, Okia, Korowa, Ikese, Iwonrin, Ebo, Ayegunle, Owalusin, Ayepe, Supare, Okela,
Bolorunduro.

Akoko South West has both government owned and private health facilities among which is Federal
Medical Centre annex in Oka-Akoko.

3.2 STUDY DESIGN

This was a one-way (point survey) cross-sectional, hospital based descriptive study on awareness,
attitude, and management of autism among health workers in Akoko South-west, Ondo State.

3.3 STUDY POPULATION

The study population consisted of all healthcare workers on their duty posts in the different institutions on
the particular days the data was collected was employed. All healthcare workers on their duty posts in the
different institutions for that particular day that give their consent were interviewed.

3.4 STUDY INSTRUMENTS

The questionnaire consists of two parts:

Section A: includes personal data about healthcare workers: age, sex, marital status, previous
participation in the evaluation and management of a child with autism, and duration of clinical
experience.

Section B: is the awareness, attitude and management of autism using Knowledge about Childhood
Autism among Health Workers (KCAHW) questionnaire. This is a self-administered questionnaire that
contains 19 questions. Each of the questions has three options to choose from, with only one of three

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options being correct. The correct option for each question has score of 1, while the other two options,
which are incorrect, have a score of 0.

The KCAHW questionnaire is further divided into four domains:

1. Domain 1 contains eight questions addressed at impairments in social interaction usually found in
children with autism. The greatest score possible is 8, and the least score possible is 0.

2. Domain 2 contains only one question, which addresses impairment in the area of communication and
language development, which is part of the presentation in children with childhood autism. The greatest
score possible is 1, and the least score possible is 0.

3. Domain 3 contains four questions that address the area of obsessive and compulsive pattern of behavior
found in children with autism, a pattern of behavior that is described as restricted, repetitive, and
stereotyped. The greatest score possible is 4, and the least score possible is 0.

4. Domain 4 contains six questions addressing information on the type of childhood autism, possible
comorbid conditions, and the onset of childhood autism. The greatest score possible is 6, and the least
score possible is 0.

Therefore, a greatest total score of 19 and least total score of 0 are possible for the total questionnaire.
The mean total score on the KCAHW questionnaire is a measure of the level of knowledge of childhood
autism.

3.5 DATA ANALYSIS

The data was analyzed using Statistical Package for Social Sciences (SPSS), version 21. The mean,
median and mode scores of the total score for the healthcare workers on Knowledge about childhood
autism among health workers (KCAHW) questionnaire was calculated. The various mean scores in
relation to the socio-demographic variables of the healthcare workers was also compared was also
calculated. Frequency and percentage distribution of the healthcare workers' opinions on management
was also computed.

3.6 ETHICAL APPROVAL

The ethical approval for the study was obtained from the relevant management Health Research Ethics
Committee (HREC) of the facilities. Informed consent was obtained before conducting the interview and
high level of confidentiality was ensured.

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