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INTRODUCTION
INTRODUCTION
The word “autism” emanates from a Greek word “autos” which means “self” , It narrates
a conditions in whicerson is removed from social interaction - hence, an isolated self
(Kuhn and Cahn, 2004). Autism is a neurodevelopmental syndrome that is defined by
deficits in social reciprocity and communication, and by unusual restricted, repetitive
behaviors (American Psychiatric Association, 2000). Autism is a complex disorder with
varying degrees of impairment in areas like communication skills, social interactions, and
restricted, repetitive, or stereotyped patterns of behavior (Jepson and Johnson, 2007).
'Autism spectrum disorder' (ASD) was introduced by Wing in 1996 (Henshell, 2008).
Before the first use of the word “autism’, a French physician Jean-Marc Gaspard Itard
narrated a story about a boy named Victor, a young boy who was kept isolated in the
woods for 11 years, who was observed as an unsociable, moreover, having language and
intellectual disabilities. He identified Victor as being developmentally different from
other children his age and later characterized as autistic (Itard, 1932).
A century later, in 1910, Paul Eugen Bleuler, a Swiss psychiatrist, used the word ‘autism’
for the first time when describing specific symptoms of schizophrenic patients where they
became withdrawn from others (Greydanus and Toledo-Pereyra, 2012). After that, in
1927, a student of Bleuler, Eugene Minkowski, reported autism as the “trouble generator”
of schizophrenia (Minkowski, 2001).
A German pediatrician named Hans Asperger, identified a milder form of autism. In 1944
he highlighted this milder form of autism in his study of boys all of higher intelligence
who suffered from trouble with social interaction and obsessive interests (Asperger and
Frith, 1991). Bettelheim’s further blame of parents for causing autism resulted in the
psychogenic perspective creating a range of therapeutic approaches.
Researchers began to shift their focus toward understanding the biological and behavioral
mechanisms of autism rather than focusing solely on psychogenic and emotional causes
of autism. Early biological research started with Stella Chess in the 1960s and her
research of autism as a neurological disease (Pearce, 2007).
Bernard Rimland in 1964, founded the Autism Society of America. Rimland stated a
theory that autism had a biological basis. Rimland disproved the “refrigerator mothers”
theory and proposed that there was a genetic component responsible for autism (Edelson,
2014). According to an article published in 1998 by (Wakefield et al., 1998) which
suggested that the Measles, Mumps and Rubella (MMR) vaccine was causing autism
(Rao, 2011; Wakefield et al., 1998). Subsequent studies found no evidence for the claim.
Initially autism was listed as a form of childhood schizophrenia in the DSM-I (American
Psychiatric Association, 1952). Until 1980 autism was not officially separated from
schizophrenia when it was labeled “infantile autism” in the DSM-III and 6 main
criterions were necessary for diagnosis (Gernsbacher et al., 2005). The “infantile autism”
definition expanded, 1987 to become “autism spectrum disorder” in the DSM-III-R
(American Psychiatric Association, 1987). The clinical definition of autism changed
again in 1994 when Pervasive Developmental Disorder-Not Otherwise Specified &
Asperger’s syndrome were added to the DSM-IV through the expansion of the diagnostic
criteria to include subtypes of autism (Baker, 2013).
Autism Spectrum Disorder is now defined by two categories: (a) impaired social
communication and/or (b) interaction and restricted and/or repetitive behaviors
(American Psychological Association, 2013). As of 2014, the Centers for Disease Control
and Prevention estimate that autism affects 1 in 68 children (CDC, 2014). People with
ASD commonly also have language difficulties, and around 25% to 30% of children are
unable to use verbal language to communicate or are minimally verbal (use fewer than 30
words).
Restricted and repetitive behaviors (RRBs) are hallmark symptoms of autism spectrum
disorders (ASDs); however, it has proven difficult to understand the mechanisms that
causes these behaviors. One hypothesis suggests that RRBs are the result of a core deficit
in attention. Alternatively, abnormalities of the motor system may constitute the central
mechanism underlying RRBs, given motor deficits observed in ASDs (Susan et al.,
2013).
Some researchers have hypothesized that RRBs are a consequence of disordered selective
attention (Courchesne and Allen, 1997; Ozonoff et al., 2004). According to the resource
allocation account, a core impairment of one system could indirectly affect performance
on the other. Another possibility is that deficits in attention and motor control arise from
a common, compromised process.
Few would dispute that the causes of ASD include both genetic and environmental
factors. Indeed, more than 100 genes are known to confer risk, and 1,000 or more may
ultimately be identified (De Rubeis, et al.. 2014). A wide range of potential
environmental challenges have also been associated with autism, although studies in this
area lag behind genomics research.
Genetic factors play a role in ASD susceptibility, many of the genetic defects associated
with ASD encode proteins that are relevant at the neuronal synapse or that are involved in
activity-dependent changes in neurons (Kim et al., 2018). Some studies have shown that
people with autism tend to have more copied genetic mutations. This suggests that for
some the risk of developing autism isn’t the result of mutations in sole individual genes
but rather spontaneous coding mutations across many genes. Sufferers of Fragile X share
very similar traits to those on the autistic spectrum in that it is an intellectual disability.
A small explorative study of neocortical architecture from young children revealed focal
disruption of cortical laminar architecture in the majority of subjects, suggesting
problems with cortical layer formation and neuronal differentiation (De Rubeis et
al., 2014). Brain overgrowth both in terms of cortical size and additionally in terms of
increased extra-axial fluid have been described in children with ASD (Shen et al., 2017).
Prenatal exposure to thalidomide and valproic acid have been reported to increase risk,
while studies suggest that prenatal supplements of folic acid in patients exposed to
antiepileptic drugs may reduce risk (Surén et al., 2013). Advanced maternal and paternal
age have both been shown to have an increased risk of having a child with ASD (Croen
et al., 2007).
has been postulated, but study results remain mixed (Croen et al., 2007). Maternal
infection or immune activation during pregnancy is another area of interest and may be a
potential risk factor according to recent investigations (Malkova et al., 2012)
Obstetric factors including uterine bleeding, caesarian delivery, low birthweight, preterm
delivery, and low Apgar scores were reported to be the few factors more consistently
associated with autism (Newschaffer et al., 2007). In the largest single study to date,
there was not an increased risk after measles/mumps/rubella (MMR) vaccination in a
nationwide cohort study of Danish children (Hviid et al., 2019).
Small increases in autism risk have been reported if, for example, a family lives closer to
a freeway or to an agricultural area during pregnancy (Mandy, 2016). People of all
genders, races, ethnicities, and economic backgrounds can be diagnosed with ASD.
Although ASD can be a lifelong disorder, treatments and services can improve a person’s
symptoms and daily functioning. People with ASD have difficulty with social
communication and interaction, restricted interests, and repetitive behaviors.
Individuals with ASD have been found to have high rates of abnormalities of sensory
functioning. (Marco et al., 2011). Social communication and interaction skills can be
challenging for people with ASD. People with ASD avoid or does not keep eye contact,
does not respond to name by 9 months of age, does not show facial expressions like
happy, sad, angry, and surprised by 9 months of age etc.
Anxiety disorders are highly comorbid in individuals with ASD, with prevalence rates
ranging from 11% to 84% (White et al., 2009). Delayed language skills, delayed
movement skills, delayed cognitive or learning skills, hyperactive, impulsive, and/or
inattentive behavior, epilepsy or seizure disorder, unusual eating and sleeping habits,
gastrointestinal issues (for example, constipation), unusual mood or emotional reactions,
anxiety, stress, or excessive worry, lack of fear or more fear than expected are other
symptoms.
The diagnostic features historically associated with ASD are a triad of impaired social
interactions, verbal and nonverbal communication deficits, and restricted, repetitive
behavior patterns. These core features are observed irrespective of race, ethnicity, culture,
or socioeconomic status. However, ASD individuals tend to differ from one another, so
one feature may be more prevalent than another. Consequently, today’s clinical diagnosis
of ASD is based on assessing behaviors (Lord et al., 2018).
Several standardized screening tools exist to diagnose ASD at an early age, these include
the Screening Tool for Autism in Toddlers and Young Children (STAT™),
(Zwaigenbaum et al., 2018) the longer and widely researched Autism Diagnostic
Observation Schedule (ADOS™), (Blank et al., 2020). The Diagnostic Instrument for
Social Communication Disorders (DISCO) and the Autism Diagnostic Interview-Revised
(ADI-R), other screening tools such as the Social Responsiveness Scale (SRS), the Social
Communication Questionnaire (SCQ), and the Childhood Autism Rating Scale (CARS)
can be used to assess a child’s symptoms of ASD. While many tools to screen and
diagnose ASD exist, two of the leading autism diagnostic tools in use today are DSM-5
and M-CHAT (Modified Checklist for Autism in Toddlers).
Whether and to what extent ASD can or should be treated is a controversial topic,
especially considering the noticeable heterogeneity within ASD children. Many
approaches are available to improve the abilities and skills, and quality of life of
individuals with ASD (Oswald et al., 2018). These approaches involve families, clinical
practitioners, and educators (Lord et al., 2020). However, to date, information on positive
outcomes of a specific intervention, and the mechanism that leads to these improvements
is scant (Weitlauf et al., 2014). In this section, we provide an overview of the current
interventional approaches to treat individuals with ASD.
The World Health Organization (WHO) estimates the international prevalence of ASD at
0.76%; however, this only accounts for approximately 16% of the global child
ASD occurs in all racial, ethnic, and socioeconomic groups, but its diagnosis is far from
uniform across these groups. Caucasian children are consistently identified with ASD
more often than black or Hispanic children (Baio et al., 2014). ASD is more common in
males (Tartaglia et al., 2017) but in a recent meta-analysis (Loomes et al., 2017), true
male-to-female ratio is closer to 3:1. The median male-to-female ratio was 4.2. Not only
are females less likely to present with overt symptoms, they are more likely to mask their
social deficits through a process called “camouflaging”, further hindering a timely
diagnosis (Volkmar et al., 2014). Likewise, gender biases and stereotypes of ASD as a
male disorder could also hamper diagnoses in girls (Bargiela et al., 2016).
CHAPTER 02
LITERATURE REVIEW
LITERATURE REVIEW
Approximately 1/100 children are diagnosed with ASD worldwide. Prevalence estimates
increased over time and varied greatly within and across socio-demographic groups. In
recent years, the World Health Assembly adopted WHO's Comprehensive Mental Health
Action Plan 2013–2020. The median prevalence of ASD was 62/10,000 children, in
2012, with a consistently higher prevalence in boys (Elsabbagh et al., 2012). Studies that
were included had as a primary aim to estimate the prevalence of ASD since 2012.
Among the 71 studies, 99 prevalence estimates in 34 countries were identified. DMS was
used. According to the up-to-date global estimate of ASD prevalence, studies revealed a
median prevalence of 65/10,000. (Christensen et al., 2019; Jariwala-Parikh et al., 2019).
In 2013, the fifth revision of the Diagnostic and Statistical Manual (DSM-5) changed
ASD diagnostic criteria (Lord and Bishop, 2015). A new diagnosis, Social
Communication Disorder (SCD), was also added outside of ASD. Standardized research
assessment tools, most notably the Autism Diagnostic Observation Schedule (ADOS) and
the Autism Diagnostic Interview-Revised (ADI-R), have been designed following DSM-
IV criteria.
According to Muhle and colleagues (2004), ASD now has a greater prevalence in
children than that of cancer or Downs syndrome. Over 100 unsolicited communications
(letters e mails and several telephone calls) were received by a UK epidemiological study
of ASD. A qualitative analysis of all correspondence in order to examine spontaneously
expressed lay beliefs about the prevalence and etiology of ASD. The majority of
correspondents suggested theories about environmental causes of ASD. This study
demonstrates the strength of lay belief that the true incidence of autism is rising, and this
is due to risks from modern technologies and changing lifestyles.
A study was conducted at Tertiary Care Hospital Rawalpindi, from Jun to Nov 2018. The
sample population comprised of 1889 adult patients reporting for psychiatric evaluation.
Autism Spectrum Disorder and Attention Deficit Hyperactivity Disorder were screened
by using screening tools which are Adult Autism Spectrum Quotient (AQ) and ADHD
Self-Report Scale-V1.1 (ASRS-V1.1) respectively. Relationship of age, gender,
socioeconomic status, illicit substance use, marital status, education and response to
treatment was assessed with the presence of ASD and ADHD. Out of 1889 adult patients
screened through AQ and ASRS, 78.9% were screened negative on both the screening
tools while 12.5% were positive on AQ and 13.5% were positive on ASRS. 8.6% of the
screening positive patients had diagnosis of ASD and 11% had diagnosis of ADHD. Ten
patients had both ASD and ADHD.
A study with a cluster sample of 6,365 children found 6.5 % rates of mild mental
retardation and 1.9 % of serious cognitive disability (Yaqoob et al., 1995; Bashir et al.,
2002). An estimate of 19.0/1,000 children suffering from mental retardation/learning
disability was also observed in Karachi (Durkin, 2002). Nearly 16 per 1,000 children
between 3 and 9 years of age suffer from severe mental retardation according to another
research (Mubbashar and Saeed, 2001). Morton et al., (2002) noted that Pakistani
children had a slightly increased prevalence of autism (2.57/1,000) (Morton et al., 2002).
Autism is also believed to be a precursor of schizophrenia by majority of HCP (Imran et
al., 2011). A methodologically sound two-stage survey by Hussein et al. in 2011 found
prevalence of emotional and behavioral problems to be around 17 % in 5–11 years old
children in Karachi city schools, which is among the highest in the developing world.
The first autism surveys were simple prevalence was low, ranging from 0.4 to 2/1,000 in
the 1960's and 1970's. New Jersey now exhibits a rate of 2.93% (Baio et al., 2018)
whereas South Carolina is about to reveal a blow-out estimate of 3.62% (Carpenter
et al., 2017). Today, the methodology of surveys has become more complex. First,
screening tools such as the Social Responsiveness Scale, the Social Communication
Questionnaire and second, and most importantly, there is relatively low participation
(36%–63%) to the initial screening and in other survey phases (e.g. participation to a
diagnostic confirmation session). Because the previous two CDC surveys had given
seemingly plateauing prevalence at around 1.48%, it did not take long for the new figure
of 1.68%. Some advocates are now running around claiming that ‘IT’ is now ‘1 child in
59’ (or even worse: 1 in 38 boys).
Psychopathology accompany the ASD in much higher numbers than what is seen in the
general population (Holden and Gitlesen, 2009; LoVullo and Matson, 2009). Early
estimates of the prevalence of this spectrum of disorders identified less than 10 in 10,000
individuals as possessing some form of ASD (Chakrabarti and Fombonne, 2001; Sevin et
al., 2007); Willemsen-Swinkels and Buitelaar, 2002); Wing and Potter, 2002). Current
estimates suggest that these rates have risen up to as high as 110 per 10,000 individuals
(Kogan et al., 2009). Prevalence estimates are derived in a number of ways including
using data from registrars, retrospective accounts, telephone interviews, and whole-area
surveys. It is generally accepted that diagnostic criteria for ASD have been broadened
and far exceed the original criteria described by Kanner (Lenoir et al., 2009). ASD
criteria were then modified and expanded throughout the successive versions of the
DSM. Reported rates of ASD have been growing steadily for years. Additionally, there
appears to be no end in sight with respect to these growing numbers (Hertz-Picciotto and
Delwiche, 2009).
The prevalence of autism had never previously been studied in the general population.
The most recent population-based Adult Psychiatric Morbidity Survey (APMS 2007) set
out to determine the prevalence of autism among adults living in private households in
England (Brugha et al., 2007). The survey involved 7,403 adults living in private
households in England. Adults were interviewed with between two and four validated
autism questionnaires: the AQ-20 (A 20-item version of the Autism-Spectrum Quotient
or AQ) (Baron-Cohen et al., 2001). The autism-spectrum quotient (AQ): evidence from
Asperger syndrome/high-functioning autism, males and females, scientists and
mathematicians. Journal of Autism and Developmental Disorders 2001, the Autism
Diagnostic Observations Schedule Module 4 (ADOS-4) (Lord C et al., 2002), the
Diagnostic Interview for Social and Communication Disorders (DISCO) (Wing L et al.,
2002) and the Autism Diagnostic Interview Revised (ADI-R) (Lord et al., 1994) together
with a clinical consensus judgment procedure. Results from the APMS 2007 revealed an
overall prevalence of 1.0 percent for autism in adults.
A study was conducted to examine the prevalence rates of ASD overall, AD, and PDD-
NOS in toddlers who were at risk for or who were already experiencing a developmental
delay. Participants were 2027 toddlers 17 through 36 months of age who received
services through Early Steps. Diagnostic procedures utilized second Edition (BDI-2;
Newborg, 2005), the Modified Checklist for Autism in Toddlers (M-CHAT; Charman et
al., 2001; Robins, Fein, Barton, & Green, 2001), criteria from the DSM-IV-TR (APA,
2000), and clinical judgment. . A total of 611 toddlers of 2027 had a diagnosis of ASD;
therefore, the prevalence of ASD within the current sample was 30.14%. The prevalence
of AD was 16.13% with 327 toddlers out of 2027 having an AD diagnosis. Lastly, a total
of 284 of 2027 had a diagnosis of PDD-NOS making the prevalence rate of PDD-NOS in
the current sample at 14.01%.
According to the Autism Society of Pakistan, there are more than 350,000 children who
are suffering from this disease. It cannot be easily diagnosed and requires clinical
analysis (Khan et al., 2019). This specific study was planned to evaluate childhood
autism awareness among the medical professionals of Pakistan in order to evaluate the
prevalence of lack of awareness regarding ASD so that a proper intervention plan can be
developed accordingly. This cross-sectional descriptive study was conducted by random
sampling method among 105 medical professionals in Pakistan during April 2020 for one
month. Data was collected through an online survey by using a self-administered
questionnaire, accessing knowledge regarding Autism. Data was analyzed using SPSS 23.
Of the 105 participants, there were more females than males. There is evident lack of
awareness regarding this disorder, with 39 % being likely aware of autism, and 20%
being moderately aware. Of the ones aware, 28% were female and 33 % male. 41%
claimed that they had never been around someone who was suffering from Autism
Using the Longitudinal Study of Australian Children (LSAC) data we aimed to estimate
the prevalence of parent-reported diagnosis of ASD and its relationship to demographic
and socio-economic status (SES) variables in Australia, as well as age of diagnosis.
Children were recruited in 2004 using a two-stage cluster sampling design (Gray and
Sanson, 2005; Soloff et al., 2005). In stage 1, postcodes were sampled (except for the
most remote) following stratification by state of residence and urban versus rural status.
In stage 2, children were sampled from the Australian Medicare database, in which the
majority of Australian children are enrolled. A total of 64% of the B cohort (n=5107) and
59% of the K cohort (n=4983) were recruited into the study. PedsQL was the most
frequently used tool and the only tool in which reliability and validity were established
for ASD. Prevalence of autism spectrum disorder was 2.5% in the B cohort compared to
1.5% in the K cohort.
In 2002/2003, the National Epidemiologic Database for the Study of Autism in Canada
started capturing information on children diagnosed with autism in different regions of
the country. Based on data collected through 2008 in Newfoundland and Labrador and
2010 in Prince Edward Island and Southeastern Ontario ASD prevalence was estimated,
among children 2–14 years of age. Significant increases in prevalence were detected for
the overall group of children 2–14 years of age in all regions, with an average annual
percent change (average APC) of 14.6 % in Newfoundland and Labrador; 9.7 %, in
Prince Edward Island; and 13.8 % in Southeastern Ontario.
The population of the Avalon Peninsula in Newfoundland and Labrador has been shown
to have a unique genetic make-up related to its founder population, with higher rates of
certain conditions with a genetic cause (Handrigan et al., 2013). The primary aim of this
study was to review the incidence rate of autism spectrum disorder among children living
in the Avalon Peninsula at the time of diagnosis over a 5-year period (2006–2010). The
study included all children living in the Avalon Peninsula between 2006 and 2010. This
study used data obtained from the Department of Child Development at the Janeway
Children’s Health and Rehabilitation Centre. Between 2006 and 2010, 272 new cases of
autism spectrum disorder were diagnosed within the study population, averaging 54 new
cases per year. The incidence of new cases increased from 10.1 to 16.7 cases per 10 000
per year from 2006 to 2010. At the end of 2013, the prevalence among children born in
2006 was 1 case of autism spectrum disorder per 46 children or 215.77 per 10 000.
To determine the prevalence of autism spectrum disorder (ASD) in preschool and school-
age children in Spain a two-phase procedure was followed. The screening phase was
performed on a sample of 5555 children taking into account parent and teacher
information. The individual assessment included the ADI-R, ADOS-2 and Wechsler
scales. The estimated prevalence was 1.55% in preschoolers and 1.00% in school-age
children. Between 1.84 and 2.59% of the children exhibited subclinical diagnosis. The
male-to-female ratio was around 4:1. Most of the children exhibited mild and moderate
nuclear symptoms, and the girls showed less severe communication problems. Previous
diagnosis was found in 62–71% of the children. Prevalence estimates are close to the 1%
international ratings and much higher than previous national reports suggested.
Centers for Disease Control and Prevention study reporting an estimated ASD prevalence
of 0.75% when based solely on health records but an estimate of 1.0% when based on
education and health records combined. The first population-based autism prevalence
study in Korea targeted the entire elementary school population of a South Korean
community, using both a general population sample and a group with a high probability
of ASDs. The target population was all 7- to 12-year-old children (N=55,266) in a South
Korean community. Autism Spectrum Screening Questionnaire was used for systematic,
multi-informant screening. The prevalence of ASDs was estimated to be 2.64% (95%
CI=1.91–3.37), with 1.89% (95% CI=1.43–2.36) in the general-population sample and
0.75% (95% CI=0.58–0.93) in the high-probability group. ASD characteristics differed
between the two groups: the male-to-female ratios were 2.5:1 and 5.1:1 in the general
population sample.
To estimate of the prevalence of autism spectrum disorder (ASD) among Omani children
descriptive study was conducted from December 2011 to December 2018. Data were
retrieved from the three main autism diagnostic centres in Oman and ASD diagnosis was
made by (DSM-5). The prevalence of ASD in the Omani population was estimated to be
1.4 per 10,000 children in 2011, aged 0–14. A total of 1,705 ASD cases were identified
with the majority of cases being male (78.1%). The overall prevalence rate of ASD was
estimated at 20.35 per 10,000 children between 2012–2018. Boys were found to have a
3.4-fold higher prevalence of ASD than girls.
In Oman, the prevalence is low. The aim of the present discourse, is to highlight some of
the factors that could contribute to a lower prevalence of ASD in Oman. The prevalence
of ASD in Oman was estimated to be 1.4 cases per 10,000 0–14-year-old children
(Simonoff et al., 2008). Studies have indicated that some of the core symptoms of ASD
do not mimic the ASD symptoms linked to African populations (Belhadj et al.,
2006). This suggests that there are cultural variations in the expression of ASD. This
means, as has been shown in other psychiatric conditions, that distress, disability or
illness are often expressed within sociocultural contexts ( American Psychiatric
Association, 2013). The use of traditional healers may also result from the frequent lack
of mental healthcare services available in most Omani communities. Given this situation,
it is difficult to quantify the true prevalence of children with ASD in the country.
In Saudi Arabia, the prevalence of autism was 18 per 10,000 children, (Al-Sharbati et
al., 2015) while in the United Arab Emirates, from a representative random sample of
three-year-old Emirati children, 29 per 10,000 children had autism. In Libya, of 38,508
children who attended a paediatric clinic in Tripoli, 128 children were autistic, thus
giving a prevalence of one in 300 (Al-Adawi et al., 2012). Furthermore, in Egypt and
Tunisia, the autism frequency rate among children with developmental disorders was
documented as 33.6% and 11.5%, respectively (Al-Mandhari et al., 2009). It appears that
there is a wide discrepancy in the magnitude of ASD, even among countries with similar
sociocultural characteristics; therefore, it is essential to discuss factors that may have
contributed to such variations (Zeglam et al., 2012).
A pilot study was conducted on early detection of ASD based on the expertise of parents
about their child with ASD. A study on the overall view about ASD in Ecuador was
performed (Delfos and Groot, 2011). The aim of this study was to get an estimate of ASD
diagnoses in children and adolescents aged between of five and fifteen at regular schools
in Quito. One-hundred-and-sixty-one regular schools in Quito were selected with a total
of 51,453 pupils from 5 to 15 years old. Response on school interviews was 100 % for
the 161 schools. Most schools (150 out of 161 = 93 %) had some knowledge about ASD.
Results show an extremely low prevalence of 0.11 % of pupils with any ASD diagnosis;
another 0.21 % were suspected to have ASD, but were without a diagnosis. This low
prevalence suggests that children and adolescents with ASD are not included in regular
education in Quito.
In Israel, three epidemiological studies on ASD have been published. An incidence of 0.1
% for the years 1989–1993 amongst children aged 0–5 years (Davidovitch et al. 2001), of
0.019 % (Senecky et al., 2009) and of 0.12 % (Gal et al., 2012) for children born in 1986,
which had increased to 0.36 % for children born in 2003. For children aged 6 and above,
an ASD diagnosis is made outside of the Maccabi Child Development Center, usually by
a Maccabi pediatric neurologist or child psychiatrist, who records the diagnosis on the
individual’s electronic file on Maccabi’s computer registry. Out of 423,524 children
between the ages of 1–12 years, 2,187 had an ASD diagnosis and 2,034 children who had
a definitive diagnosis of ASD. Thus the prevalence was 4.8 per 1,000 (0.48 %). For the
second prevalence calculation, in children 8 years of age in 2010, a figure of 6.5 per
1,000 children was obtained. a rate of ASD prevalence for the 2010 calendar year in
Israel of 0.48 % for children 1–12 years, which is higher than previously reported Israeli
prevalence figures (Gal et al., 2012).
Prevalence studies on autism spectrum disorders (ASD) have been carried out in more
than 15 countries since 1966, largely in the western hemisphere. Estimates vary from 4.1
per 10,000 individuals in 1966 (UK) to as high as 113 per 10,000 (USA) individuals in
2014 according to region and time (Elsabbagh et al., 2012). Specifically within Asia,
estimates vary widely across time and country (China: 0.003–0.17%, Japan: 0.011–
0.21%, South Korea: 1.89%) (Kim et al., 2011; Sun & Allison, 2010). Five studies in
Japan have used an 18-month health checklist. In China, five studies used the Chinese
autism behavior scale (Zhang and Ji, 2005). Population-based studies in Asia since 2000
establish a median observed prevalence of 13.9 per 10,000 individuals (Elsabbagh et
al., 2012)
India is the largest exception to the list of countries with an estimate of prevalence of
autism and supra threshold autistic traits in the general population (Elsabbagh et
al., 2012; Malhotra and Vikas, 2005; Sun and Allison, 2010). The study included
children aged 3–8 years attending different types of schools N = 11,849 children (mean
age = 5.9 [SD = 1.3], 39.5% females) were selected from various school types from three
boroughs in Kolkata, India. The school types included were government, private (18),
nongovernment organizations and 1 group of anganwadi centers. Written responses were
transcribed electronically, and statistical analysis was performed using SPSS version 19.
The weighted estimate of supra-threshold SCQ scores was 3.54% (CI: 2.88–4.3%). The
weighted prevalence estimate of positive scores (for broader autism spectrum + ASD +
autism) was 0.23% (0.07–0.46%).
This study determined the prevalence of autism spectrum disorders in 201 (103 females
and 98 males) siblings of children with autism spectrum disorders. The mean age of
siblings was 7.5 years. Siblings were screened using Modified Checklist for Autism in
Toddlers and Social Responsiveness Scale, parent version. The concordance rate for
autism among monozygotic twins has been estimated to vary from 36% to 91% by the
pair and 53% to 95% by proband, with no concordance among dizygotic twins, thus
supporting the genetic influence for autism. An epidemiologic survey of 207 autistic
families in the city of Utah showed the overall recurrence risk estimate to be 8.6%. Baby
Siblings Research Consortium, however, showed a sibling risk of 18.7%. Thus the
prevalence of ASD in the siblings in this study was 4.97% (10 of 201 siblings) with a
95% confidence interval of 0.017 to 0.083. There were 5 males and 5 females, giving a
prevalence of 4.9% in female siblings and 5.1% in males.
In Bangladesh, a study has explored at the prevalence of ASD among rural community
children aged between 18-36 months. A cross sectional study was conducted among the
5286 children aged between 18-36 months in a rural community, using screening tool
MCHAT. 04 children were diagnosed with autism spectrum disorder (ASD). Prevalence
of the ASD in rural community was found 0.75/1000 children. Among the four ASD
cases three were boys and one was girl and age range was between 20- 30 months. Age
specific autism (18-36 months) in children is found higher in rural community of
Bangladesh.
A study was conducted to determine the prevalence of true ASD diagnoses in children
referred for diagnostic ASD evaluation, 348 children completed a diagnostic autism
evaluation. The mean age of the children evaluated was 6 years 7 months ± 3 years 5
months. Charts of all patients referred to a regional autism center between April 2011 and
August 2012 for suspicion of a possible ASD were reviewed and demographic and
clinical diagnoses abstracted. The average age of initial ASD diagnosis has been reported
at 5.7 years, although studies have shown diagnostic stability for children diagnosed as
early as 2 years of age (Johnson and Myers, 2007). This study included both children who
(1) had failed an autism screen (n = 287; either the Modified Checklist for Autism in
Toddlers or the Social Communication Questionnaire) and (2) children who did not
receive a screen or who passed the screen (n = 61) (Robins et al., 2000) (Rutter M, Bailey
A, Lord C. 2003). Only 214 of 348 patients evaluated (61%) received an ASD diagnosis.
The DSM-5 states that “autism spectrum disorder is diagnosed four times more often in
males than in females. This 4:1 gender ratio is widely cited and comes from work that
calculated the mean male-to-female ratio from population prevalence studies of ASD
(Fombonne E et al., 2009). ASD male-to-female ratios show striking variability, ranging
from 8:19 (Kopp et al., 1992) to 2:1 (Bargiela et al., 2016). Preferred Reporting Items for
Systematic Reviews and Meta-Analyses (PRISMA) guidelines for systematic reviews
was followed. Investigation of ASD prevalence was done within a general population
sample. Diagnosis of ASD based on DSM-5, DSM-IV-TR, DSM-IV, or International
Classification of Diseases, Tenth Revision (ICD-10) criteria. Age range of sample was
from 0 to 18 years. Fifty-four studies were analyzed, with 13,784,284 participants, of
whom 53,712 had ASD (43,972 boys and 9,740 girls). The overall pooled MFOR was
4.20. The true male-to-female ratio is not 4:1, as is often assumed; rather, it is closer to
3:1.
A study was conducted in USA on national and state prevalence of adults 18–84 years
living with ASD using simulation in conjunction with Bayesian hierarchal models.
Unpublished ASD prevalence data from NSCH (2016–2018) was used, published ASD
population mortality rates, 1999–2017 U.S. mortality rates by state, age, and sex, and
2017 population to develop an estimator of ASD prevalence and cases by state and sex,
and nationally for 2017. In 2017, it was estimated that approximately 2.21% (95%
simulation interval (SI) 1.95%, 2.45%) or 5,437,988 U.S. adults aged 18 and older have
ASD, with state prevalence ranging from 1.97% (95% SI 1.55%, 2.45%) in Louisiana to
2.42% (95% SI 1.93%, 2.99%) in Massachusetts. Overall, we estimated that 1 in 45
adults (95% SI, 41, 51), ages 18–84 years, are living with ASD.
ASD prevalence estimates have increased from 6.7 (one in 150) to 18.5 (one in 54) per
1,000 children aged 8 years at ADDM Network sites in surveillance year 2016 (Maenner
et al., 2016). No overall difference in ASD prevalence between non-Hispanic White
(White) and non-Hispanic Black (Black) children aged 8 years according to 2016 ADDM
data. Prevalence was calculated as the number of children with ASD divided by the total
number of children in the defined population or group per 1,000 children. Prevalence was
calculated overall, by sex, and by race and ethnicity for White, Black, Hispanic,
Asian/Pacific Islander (A/PI), and AI/AN children. The overall ASD prevalence per
1,000 children aged 8 years was 23.0 and ranged from 16.5 in Missouri to 38.9 in
California. The overall male-to-female prevalence ratio was 4.2, and site-specific ratios
ranged from 3.3 to 5.2.
Over the past decade, the racial/ethnic disparities have persisted but have narrowed (Xu
et al., 2016). However, it remains unknown how racial/ethnic disparities have changed
over time. The National Health Interview Survey collected data on a wide range of
health-related topics through in-person household interviews. Race/ethnicity for this
study was self-reported. In this nationally representative survey of US children and
adolescents aged 3 to 17 years, 1330 of the 52 550 eligible individuals (2.53%) had been
diagnosed with ASD between 2014 and 2019. The overall weighted prevalence was
2.49%. The racial/ethnic disparities in ASD are complex and reflect multiple levels of
inequities which range from individual etiologic factors, none tiologic factors to
environmental etiologic factor (Parsons et al., 2014).
A study was conducted from July 2014 to December 2016 to obtain the first national
estimate of the prevalence of autism spectrum disorder (ASD) in Chinese children of 6 to
12-year-old. The Modified Chinese Autism Spectrum Rating Scale was used for the
screening process. Of the target population of 142,086 children, 88.5% (n = 125,806)
participated in the study. A total of 363 children were confirmed as having ASD. The
observed ASD prevalence rate was 0.29% for the overall population. The prevalence was
significantly higher in boys than in girls (0.95%, versus 0.30%). Of the 363 confirmed
ASD cases, 43.3% were newly diagnosed, and most of those (90.4%) were attending
regular schools and 68.8% of the children with ASD had at least one neuropsychiatric
comorbidity.
The prevalence of autism/ASD among the preschool-age children (1-5 years old) and
school-age children (6-16 years old) along with the gender differences was studied in the
capital city of Oslo, Norway from 2012 to 2016. . The raw data consists of Oslo’s
children population of 1-16 years old along with the ones who were registered to be
diagnosed with Autism/ ASD between the years 2012-2016. In 2016 the results revealed
that 1 in 349 males and 1 in 1594 females between the ages of 1-5 years old had
Autism/ASD and 1 among 157 males and 1 among 544 females had autism/ASD between
the ages of 6-16 years.
ASD prevalence was estimated in 7–9 year-old children in 2015 using data from three
nation-wide health registry systems (Denmark, Finland, Iceland) and two French
population-based regional registries. In Denmark the study included children who were
7–9 years of age between 2013 and 2015. For Finland, information was gathered on all
children with an ASD diagnoses before 31 December 2015. Each site worked
independently and estimated prevalence of ASD following a common study protocol.
Prevalence ranged from 0.48% in South-East France to 3.13% in Iceland (South-West
France: 0.73%, Finland: 0.77%, Denmark: 1.26%). Male/female ratios ranged from 3.3 in
Finland to 5.4 in South-West France. Between 12% (Denmark) and 39% (South-West
France) of cases were diagnosed with intellectual disability.
Register-based prevalence rates of childhood autism (CA) and other autism spectrum
disorders (ASD) were calculated among children aged 7 years old of the 1997–2003,
living in four counties in France. The proportion of children presenting comorbidities was
reported. 1123 children with ASD were recorded (M/F ratio: 4.1), representing an overall
prevalence rate of 36.5/10,000 children: 8.8/10,000 for CA, 25.9/10,000 for other
ASD. ASD prevalence significantly increased during the period under study. The
proportion of children with an intellectual disability was 47.3 %, all other comorbidities
were present in less than 5 % of the cases.
A study was conducted to assess the prevalence of ASD in children aged 0–16 years,
inhabitants of West Pomeranian and Pomeranian regions. There were 921 participants
(748 males and 173 females) and 1593 participants (1290 males and 303 females) with
ASD from West Pomeranian and Pomeranian regions, respectively. In West Pomeranian,
the observation period was from January 2010 to March 2014. The estimates were based
on the government registries, whereas data were obtained from Provincial Disability
Services Commissions. In the West Pomeranian Region, the prevalence of ASD was
found to be 32/10 000 children. The highest prevalence in this region, that is 53/10 000 in
4- to 7- year-old children was observed. Autism spectrum disorders were 4-fold more
prevalent in males than females.
Parents of children with autism spectrum disorder appear to experience high levels of
psychological distress, yet little is known about the prevalence of psychological disorders
in this population. The following variables were extracted: year of publication, sample
size, age of parents, sex of parents, age of children, sex of children, country of
publication, diagnostic measure for ASD. . The median meta-analytic proportions were
31% for depressive disorders, 33% for anxiety disorders, 10% for obsessive-compulsive
disorder, 4% for personality disorders, 2% for alcohol and substance use disorders and
1% for schizophrenia spectrum disorders.
To estimate prevalence and age at diagnosis in Greece, where no large-scale prevalence
study has ever been conducted, data were collected on ASD diagnoses by gender and
calendar year up to 2019, from the Centers for Educational and Counseling Support. ASD
prevalence overall was 1.15% (1.83% males, 0.44% females; ratio 4.14:1), ranging from
0.59% to 1.50% in Greece’s 13 regions.
Individuals with ASD often present co-morbid psychiatric disorders. Hossain et al.,
(2020) reported two studies estimating the prevalence of at least one comorbid
psychiatric disorder at 54.8% and up to 94%. Individuals with ASD are more likely to
experience somatic co-morbidities such as epilepsy (Lai et al., 2019) gastro-intestinal
(GI) disorders or sight/hearing impairments. A systematic literature review (SLR) was
conducted in 2019 to evaluate the prevalence of ASD in children and adolescents (from 2
to <18 years old) in EU-4 (France, Germany, Spain, and Italy) plus the UK, and the US.
This SLR focused on nine co-morbidities of interest: ADHD, anxiety, depressive
disorders, epilepsy, Intellectual Disability (ID), sleep disorders, sight/hearing
impairment/loss and GI problems (Tye et al., 2018). Thirteen studies on prevalence of
ASD and 33 on prevalence of co-morbidities were included. Prevalence of ASD was 1.70
and 1.85% in US children aged 4 and 8 years respectively, while prevalence in Europe
ranged between 0.38 and 1.55%. Additionally, current evidence is supportive of a global
increase in ASD prevalence over the past years. Substantial heterogeneity in prevalence
of co-morbidities was observed: ADHD (0.00–86.00%), anxiety (0.00–82.20%),
depressive disorders (0.00–74.80%), epilepsy (2.80–77.50%), ID (0.00–91.70%), sleep
disorders (2.08–72.50%), sight/hearing impairment/loss (0.00–14.90%/0.00–4.90%), and
GI syndromes (0.00–67.80%).
The literature from 2020 on the prevalence of epilepsy in autistic individuals was
systematically reviewed. The updated pooled prevalence of epilepsy in autistic
individuals was 10% out of 66 studies. The respective prevalence estimate of epilepsy
was 19% in the clinical sample-based cross-sectional study, 7% in the cohort study, and
9% in the population-based cross-sectional study. The pooled prevalence of epilepsy was
7% in autistic children and 19% in autistic adults. The adolescence group and the pre-
school group were positively associated with the prevalence of epilepsy. About 1/10
autistic individuals co-occurred with epilepsy, which was common in the clinical setting,
adolescents, adults, females, or patients with intellectual disability.
About 70% of people with ASD may have a comorbid psychiatric disorder and about
40% have two or more comorbid psychiatric disorders (American Psychological
Association, 2013). A recent meta-analysis (Hollocks et al., 2018) estimates a combined
prevalence of 27% to 42% for any anxiety disorder, and from 23% to 37% for depressive
disorders. Preferred Reporting Items for Systematic Reviews and Meta-Analyses
(PRISMA) (Moher et al., 2009) was used as a guideline. An electronic search was
conducted from 2000 to 2016 in four databases. The average age of the whole sample
was equal or greater than 18 years. The search strategy included terms relating to all
psychiatric disorders as they are classified in the standard classifications (DSM-5). A
total of 47 studies were included. Results showed that attention deficit and hyperactivity
disorder is the most prevalent psychiatric disorder in adults with ASD. Mood and anxiety
disorders are also very frequent among this population. The lowest comorbidity
prevalence rates of all diagnostic categories are the ones related to substance use and
eating disorders.
A survey shows a higher prevalence of autism spectrum disorders and the frequency of
mental retardation and co-morbid psychiatric disorders and symptoms in a large clinical
sample of patients with pervasive developmental disorders. The sample consists of all
patients (N = 601) with a pervasive developmental disorder. For all patients the level of
intellectual functioning was measured. In addition to psychiatric diagnoses, intervention-
relevant symptoms, such as, eating and sleeping problems, and auto-aggressive
behavior was also recorded. 26% of the patients functioned on a normal intellectual level
(N = 58). 54% of the patients (N = 325) had at least one additional psychiatric diagnosis,
and 19% (N = 110) had two additional diagnoses.
Prevalence of obesity in Autism Spectrum Disorder (ASD) has been reported to be higher
than in the general population. A cross-sectional study was performed at the Child
Development Center in Malaysia Medical Center on 151 ASD children aged 2–18 years.
Anthropometric and demographic information were obtained and parents completed three
questionnaires. The prevalence of overweight (BMI ≥85th to <95th percentiles) was
11.3% and the prevalence of obesity (BMI ≥95th percentile) was 21.9%.The
overweight/obese ASD children's median age was higher at 8.5 years compared to the
normal/underweight group of 6.33 years. The prevalence of obesity and overweight is
high among Malaysian ASD children and adolescents.
The prevalence and incidence of early-onset dementia in individuals with ASD was
examined during 2008–2012. Participants were 30–64 year-old adults who were
diagnosed either with ASD only or ASD+ID. The 5-year prevalence of dementia was
4.04% among adults with ASD only, and 5.22% for those with ASD and co-occurring ID.
In conclusion, adults with ASD under the age of 65 were approximately 2.6 times more
likely to be diagnosed with dementia compared to the general population in our study.
The most common eating disorders (EDs) in young adults are anorexia nervosa (AN),
bulimia nervosa (BN), and binge-eating disorder (BED) (Dahlgren et al., 2017), and AN
and avoidant/restrictive food intake disorder (ARFID) are the most frequent in
adolescents (Nicely et al., 2014). In young females, ED prevalence is especially high,
ranging from 0.3 to 1% of the total population (Hoek, 2006). The data of 131 children
with FEDs from The Japanese Pediatric EDs was taken with AN (n = 92) or ARFID (n =
32) from a prospective multicenter cohort study using the Autism Spectrum Quotient
Children’s version (AQC) and Children’s Eating Attitudes Test (ChEAT26). The J-PED
study includes 11 medical institutions throughout Japan. All patients were assessed
through direct observation and interview, and diagnoses were guided by the DSM-5.
ASD prevalence was high in both AN and ARFID (16.3 and 12.5%, respectively).
Stereotypies are frequently reported in people with autism spectrum disorder (ASD) but
remain one of the less explained phenomena. Through a systematic review and a meta-
analysis, the prevalence of motor stereotypies in ASD was studied along with factors that
influence this prevalence. Thirty-seven studies were included and the median prevalence
of motor stereotypies in ASD was 51.8%, ranging from 21.9% to 97.5%. The most
frequent determinants associated with a higher number of stereotypies in ASD were a
younger age, lower intelligence quotient, and a greater severity of ASD. Moreover,
gender did not seem to influence the prevalence of stereotypies.
A number of studies have indicated that students with disabilities are at greater risk for
experiencing bullying than typically developing students (Bear et al., 2015). Systematic
database and literature review identified 34 relevant studies. Pooled prevalence estimates
for victimization, perpetration, and perpetration-victimization in general were 67%, 29%,
and 14%, respectively. A recent meta-analysis of bullying prevalence studies in students
with ASD reported the prevalences of bullying involvement as victims, bullies, and bully-
victims as 44%, 10%, and 16%, respectively (Maïano et al., 2016).
ASD has a number of psychopathological correlates, which further reduce the quality of
life in affected individuals (Matson and Nebel-Schwalm, 2007; Steensel et al., 2011). Up
to 50% of children have been bullied by their siblings and up to 40% have bullied their
siblings (Wolke et al., 2015). The risk of being bullied by peers in children with ASD
may be mirrored in vulnerability to sibling bullying (Hebron et al., 2015). In this study,
data collected (age 11 years) were analyzed. Twins and those who did not have any
siblings were excluded. here were 475 children with ASD and 13,702 children without
ASD aged 11 years. Children with ASD were more likely to be bullied by their siblings
compared to those without ASD.
Pain is a leading contributor to the global morbidity and disability burden. Pediatric pain
is especially problematic, as it may impede healthful development into and throughout
adulthood (Noel et al., 2016). Data was collected from the 2016-2017 National Survey of
Children’s Health, the overall weighted response rate was 40.7% for 2016 and 37.4% for
2017. The prevalence (weighted estimates) of pain was 8.2% for children without ASD,
15.6% for children with ASD, and 19.9% for children with ASD and at least 1
developmental comorbidity.
Two of the most common disorders of child development are attention deficit
hyperactivity disorder (ADHD) and autism spectrum disorder (ASD). ADHD affects
around 5–7% of children (Thomas et al., 2015). Other studies reported that 59 to 83% of
youth with ASD also present with ADHD (Leyfer et al., 2006). Research subsequent to
DSM-5 examining ASD/ADHD in children reports estimates of comorbid ASD/ADHD
with comorbidity rates of 40– 70%. Around one third of 4–18-year olds with ADHD have
clinically elevated levels of ASD symptoms.
Adolescence, a time of transition fraught with physical, hormonal, emotional, and social
challenges are magnified in children with autism spectrum disorders (ASD). Sleep
problems are one of the major health concerns in children with ASD, with prevalence
rates of about 50–80% compared to 9–50% in typically developing (TD) children
(Couturier et al., 2005; Krakowiak et al., 2008; Richdale and Schreck, 2009). CSHQ
questionnaires were completed by 1,859 parents and PCQ questionnaires were completed
by 1,784 parents of these 67.3% were reported as good sleepers and 32.7% as poor
sleepers. Across the age categories: 31.5% of children \5 years, 29.5% of children 5–7
years, 34.4% of children 7–11 years and 39.0% of children C 11 years of age were
reported to be poor sleepers. In the children under the age of 7, those \5 years of age had
more bedtime resistance and sleep onset delay than those between the ages of 5 and 7
years. Children younger than 5 years of age had more parasomnias, night wakings, and
bedtime resistance than children 7 years of age and older. The sleep behaviors between
the children 5 to 7 years and 7 to 11 years of age were similar.
A century ago, Bleuler considered “autism” to be one of the four core symptoms of
schizophrenia (Askok et al., 2012). The population prevalence of schizophrenia is
estimated to be one percent (Bradley et al., 2011) and ASD may present a risk factor for
the development of schizophrenia (Nylander et al., 2008). Studies were identified through
searches of three large electronic databases. The point prevalence rates for ALTs ranged
from 9.6% to 61%, whilst the prevalence rates for diagnosed ASD ranged from < 1% to
52% across outpatient and inpatient populations. This suggests that prevalence rates of
ALTs and ASD in psychosis populations are much higher than in the general population.
Autism spectrum disorders (ASD) often co-occur with intellectual disability (ID) and are
associated with poorer psychosocial and family-related outcomes than ID alone. This
study in 2016 examined the prevalence, stability, and characteristics of ASD estimates in
2,208 children with ASD and ID identified through the South Carolina Autism and
Developmental Disabilities Network. The prevalence of ASD in ID was 18.04%, relative
to ASD rates of 0.60%–1.11% reported in the general South Carolina population.
Compared to children with ASD alone, those with comorbid ID exhibited increased
symptom severity and distinct DSM-IV-TR profiles.
It is well known that very preterm and extremely preterm infants carry a high risk of
long-term neurodevelopmental morbidities. (Ancel et al., 2011). Evidence is emerging
that prematurity and being of low birth weight are risk factors for later development of
autism spectrum disorder (ASD) (Cheong et al., 2017). The databases were searched
from inception until May 2017. Researchers in a total of 18 studies (3366 preterm
infants) used ASD diagnostic tools. The median gestation, birth weight, and age at
assessment were 28.0 weeks (range: 25.1–31.3 weeks), 1055 g (range: 719–1565 g), and
5.7 years (range: 1.5–21 years), respectively. Meta-analysis revealed that the overall
prevalence rate for ASD was 7%.
Both preterm and postterm births have been linked to elevated risk of ASD. A recent
meta-analysis identified 14 original research articles investigating the association
between postterm birth and risk of ASD (D’Onofrio et al., 2013) of these, seven reported
null findings, six reported a positive association (Gardener et al., 2011). The relationship
between gestational age at birth and ASD without ID would be different from that
between gestational age at birth and ASD with ID, and these relationships might be
different in males and females. Register-linkage cohort study of the total child population
aged 0–17 years residing in Stockholm County, Sweden, who were born between 1984
and 2007. The last follow-up date in the study period was December 31, 2011. The study
sample included 480 728 individuals. A total of 10 025 (2.1%) persons were diagnosed
with ASD; of these, 2368 (23.6%) and 7657 (76.4%) were diagnosed with and without
co-occurring ID, respectively.
For the first time, the burden of ASDs has been estimated for the Global Burden of
Disease Study 2010 (GBD 2010). The aims of this study were to develop global and
regional prevalence models and estimate the global burden of disease of ASDs. Data was
pooled using a Bayesian meta-regression approach. Burden was calculated in terms of
years lived with disability (YLDs) and disability-adjusted life-years (DALYs), which are
reported here by world region for 1990 and 2010. In 2010 there were an estimated 52
million cases of ASDs, equating to a prevalence of 7.6 per 1000 or one in 132 persons.
Globally, autistic disorders accounted for more than 58 DALYs per 100 000 population
and other ASDs accounted for 53 DALYs per 100 000.
There is growing consensus that the worldwide prevalence of ASD is around 1%, making
it one of the most common developmental disorders (Baird et al., 2006, Lord and Spence,
2006; Fombonne, 2009; Matson and LoVullo, 2009; Schendel et al., 2012). A key
diagnostic challenge is that ASD has no pathognomonic features (Yates and Le Couteur,
2009). That is, no single feature on its own will confirm or rule out ASD. Data on the
incidence, prevalence, and impact of ASD in South Africa are almost entirely lacking. No
epidemiological studies of ASD have been conducted in the country. UCT has recently
established a Centre for Autism Research in Africa. The goal of the Centre is to gather an
interdisciplinary team of researchers to drive work in this field. Most ASD research to
date has used Caucasian families from high-income communities (Szatmari et al., 2007,
Hilton et al., 2010). The Centre is therefore prioritizing the establishment of reliable and
valid tools for screening and diagnosis in our context, and developing local expertise in
using these tools.
CHAPTER 03
RESEARCH METHODOLOGY
RESEARCH METHODOLOGY
The present study was conducted in special education institutes of Lahore by collection
of information on structured data collection form. I choose a survey research design
because it best served to answer the questions and the purposes of the study. The survey
research is one in which a group of people or items is studied by collecting and analyzing
data from only a few people or items considered to be representative of the entire group.
A survey assesses a public opinion or individual characteristics by the use of
questionnaire and sampling methods.
EXPERIMENTAL DESIGN
The present study was conducted from special education institutes of Lahore, on a sample
of 100 children having Autism Spectrum Disorder.
DURATION OF STUDY
STUDY POPULATION
For some studies, the population may be small enough to warrant the inclusion of all of
them in the study. But a study may entail a large population which cannot all be studied.
That portion of the population that is studied is called a sample of the population. A
sample in this study is, therefore, a smaller group of a few elements drawn through a
definite procedure from an accessible population. The elements making up this sample
are those that are actually studied.. The research sample of children aged 3 to 17 years
was subject to a simple random sampling procedure. A pre-defined questionnaire was
filled out by the teachers of the students, covering gender, age, group, socioeconomic
status, residence, parent’s relationship, partnership status of parents and Childhood
Autism Rating Scale (CARS). The correctness and completeness of all surveys were
verified.
DATA COLLECTION
The main outcome of the study was the prevalence rate of Autism Spectrum Disorder
among children in special education institutes of Lahore, assessed by the survey sample.
Data was gathered on independent variables like socioeconomic characteristics and prior
medical history.
QUESTIONNAIR
CARS test was designed in 2010 in two different age ranges of 0-6 years old and over 6
years old, as a questionnaire with a duration of 15 minutes. This test has 75% content
validity, 76% reliability, its sensitivity is 81%, and its specificity is 87%.
The questionnaire designed for the study was subjected to a validation process for face
and content validity. Face and content validity have been defined as following:
Face validity is the idea that a test should appear superficially to test what it is
supposed to test; and
Content validity is the notion that a test should sample the range of behavior
represented by the theoretical concept being tested.
The experts went through the research questions and the questionnaire carefully to
ascertain the appropriateness and adequacy of it.
As children aged 3 to 17 years were participating in the trial, the informed permission of
the institute was thus requested. The Lahore College for Women University’s review
board received the ethical consent for the project.
The data collected from the field were analyzed statistically by using SPSS version 26.
Chi square was applied on study subjects.
CHAPTER 04
Our survey of various special education institutes and autism centers revealed a final sample of
100 autistic children whose teachers and parents/guardians volunteered to take part in the study
who were identified by the psychologist of respective institution. The results are given below:
In a sample of 100 children the age range was 3-17 years. The age of 100 children divided into
groups of 3 years each. The relationship of age with 15 parameters of the Childhood Autism
Rating Scale is given below:
The p value for emotional response (0.02), taste, smell and touch response and use (0.047),
general impressions (0.009) was smaller than the alpha value (0.05), the result is significant for
these variables , hence these variables are associated with the age of children while other
variables like, relating to people (0.80), imitation (2.52), body use (0.74), object use (0.18),
adaptation to change (0.80), listening response (0.588), fear and nervousness (0.437), verbal
communication (0.445), non-verbal communication (0.130), activity level (0.411), level of
consistency of intellectual response (0.87) these are independent of age.
Table -1. Chi square test table; shows the association of Age with Emotional
response
Chi-Square Tests
Asymptotic
Value df Significance (2-sided)
Pearson Chi-Square 24.788a 8 .002
Likelihood Ratio 27.129 8 .001
Linear-by-Linear Association 11.930 1 .001
N of Valid Cases 100
Figure -1. Bar chart shows the association of age with general impressions of autistic
children.
Table -2. Chi square test table, shows the association of age with taste , smell and touch
response and use by autistic children.
Chi-Square Tests
Asymptotic
Significance (2-
Value df sided)
Pearson Chi-Square 15.674a 8 .047
Likelihood Ratio 15.950 8 .043
Linear-by-Linear Association 11.891 1 .001
N of Valid Cases 100
In a sample of 100 autistic children 72 belong to urban areas and 28 children belong to rural
areas. The association of residence with 15 parameters of the Childhood Autism Rating Scale is
given below:
The p value for relating to people (0.51), imitation (0.28), emotional response (0.38), object use
(0.93), body use (0.32), visual response (0.32), taste , smell and touch response and use (0.29),
verbal and non-verbal communication (0.47), level and consistency of intellectual response
(0.79),general impressions (0.10), adaptation to change (0.80), is greater than the alpha value
hence , residence and these factors are independent of each other , while listening response
(0.05), fear or nervousness (0.01), and activity level (0.01), showed significant results hence
these factors are associated with residence of the children.
Table -2. Chi square test table; shows the association of residence with listening response of
autistic children.
Chi-Square Tests
Asymptotic
Value df Significance (2-sided)
Pearson Chi-Square 5.953a 2 .051
Table-3. Chi square test table; shows the association of residence with activity level in
autistic children.
Chi-Square Tests
Asymptotic
Value df Significance (2-sided)
Pearson Chi-Square 8.716a 2 .013
In a sample of 100 autistic children 19 children were upper class, 77 were middle class and 4
were lower class. The association of socioeconomic status with 15 parameters of the Childhood
Autism Rating Scale is given below:
The p value for relating to people (0.91), imitation (0.55), emotional response (0.55), body use
(0.07), visual response (0.10), taste , smell and touch response and use (0.66), verbal
communication (0.38), and non-verbal communication (0.37), level and consistency of
intellectual response (0.54), general impressions (0.61), body use (0.93), adaptation to change
(0.77), listening response (0.52), and activity level (0.43), is greater than the alpha value hence ,
socioeconomic status and these factors are independent of each other , while object use (0.05)
and fear or nervousness (0.03), showed significant results hence these factors are associated
with socioeconomic status of children.
Table- 4. Chi square table; shows the association of socioeconomic status with object use in
autistic children.
Chi-Square Tests
Asymptotic
Value df Significance (2-sided)
Pearson Chi-Square 9.419a 4 .051
Figure- 3. Bar graph representing the association of socioeconomic status with fear and
nervousness in autistic children.
Association of CARS parameters with gender of children with ASD
In a sample of 100 autistic children 50 children were male and 50 were female. The association
of socioeconomic status with 15 parameters of the Childhood Autism Rating Scale is given
below:
The p value for imitation (0.44), emotional response (0.12), body use (0.38), object use (0.38),
non-verbal communication (0.83), level and consistency of intellectual response (0.29), body use
(0.93), listening response (0.22), visual response (0.95), fear or nervousness (0.72), is greater
than the alpha value hence , gender of the autistic children and these factors are independent of
each other , and relating to people (0.009), taste , smell and touch response and use (0.01),
verbal communication (0.04), adaptation to change (0.02), activity level (0.03), and general
impressions (0.002), showed significant results hence these factors are associated with the
gender of children.
Table-5. Chi square table; shows the association of gender and the level of relatedness of
autistic children with other people.
Chi-Square Tests
Asymptotic
Value df Significance (2-sided)
Pearson Chi-Square 9.448a 2 .009
Likelihood Ratio 9.644 2 .008
N of Valid Cases 100
Figure- 4. Bar chart representing the association of gender with taste , smell and touch
response and use in autistic children.
Table- 6. Chi square table; shows the association of gender with verbal communication in
autistic children.
Chi-Square Tests
Asymptotic Significance
Value df (2-sided)
Pearson Chi-Square 6.252a 2 .044
Likelihood Ratio 6.393 2 .041
N of Valid Cases 100
Figure-5. Bar chart representing the association of gender with adaptation to change by the
autistic children.
Table- 7. Chi square table; shows the association of gender with activity level of autistic
children.
Chi-Square Tests
Asymptotic
Value df Significance (2-sided)
Pearson Chi-Square 6.789a 2 .034
Likelihood Ratio 6.975 2 .031
N of Valid Cases 100
Figure-6. Bar chart representing the association of gender with general impressions of
autistic children.
In a sample of 100 autistic children, parents of 60 children were having a non-familial roots,
while parents of 40 children were cousins. The association of parent’s relationship with 15
parameters of the Childhood Autism Rating Scale is given below:
The p value for imitation (0.11), body use (0.18), object use (0.09), fear or nervousness (0.75),
verbal communication (0.20), and non-verbal communication (0.89), body use (0.93), adaptation
to change (0.16), and activity level (0.39), is greater than the alpha value hence , parent’s
relationship and these factors are independent of each other , while variables like relating to
people (0.02), emotional response (0.03), visual response (0.04), taste , smell and touch response
and use (0.03), listening response (0.002), level and consistency of intellectual response (0.03),
general impressions (0.00), showed significant results hence these factors are associated with
socioeconomic status of children.
Table-8. Chi square table; shows the association of parent’s relationship and the level of
relatedness of autistic children with other people.
Chi-Square Tests
Asymptotic
Value df Significance (2-sided)
Pearson Chi-Square 7.659a 2 .022
Likelihood Ratio 7.692 2 .021
N of Valid Cases 100
Figure-7. Bar chart representing the association of parent’s relationship with emotional
response in the children.
Table-9. Chi square table; shows the association of parent’s relationship and visual
response of autistic children.
Chi-Square Tests
Asymptotic
Value df Significance (2-sided)
Pearson Chi-Square 6.246a 2 .044
Likelihood Ratio 6.307 2 .043
N of Valid Cases 100
Figure-8. Bar chart representing the association of parent’s relationship with taste , smell
and touch response and use in autistic children.
Table-10. Chi square table; shows the association of parent’s relationship and listening
response of autistic children.
Chi-Square Tests
Asymptotic
Value df Significance (2-sided)
Pearson Chi-Square 12.059a 2 .002
Likelihood Ratio 12.512 2 .002
N of Valid Cases 100
Figure-9. Bar chart representing the association of parent’s relationship with level and
consistency of intellectual response in autistic children.
Table-11. Chi square table; shows the association of parent’s relationship and general
impressions of autistic children.
Chi-Square Tests
Asymptotic
Value df Significance (2-sided)
Pearson Chi-Square 18.767a 2 .000
Likelihood Ratio 19.796 2 .000
N of Valid Cases 100
The p value for relating to people (0.91), imitation (0.47), emotional response (0.25), body use
(0.80), object use (0.41), fear or nervousness (0.23), visual response (0.97), taste , smell and
touch response and use (0.30), verbal communication (0.40), and non-verbal communication
(0.16), level and consistency of intellectual response (0.15), general impressions (0.58), body
use (0.93), adaptation to change (0.15), listening response (0.56), and activity level (0.59), is
greater than the alpha value hence, partnership status of parents and these factors are
independent of each other. None of them have significant value, so these variables are not
associated with partnership status of parents of ASD children.
CHAPTER 05
DISCUSSION
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ANNEXURE
Lahore College for women university, Lahore
Jail road, Lahore-54000, Pakistan, Tel: 0429203091,9203801-9 Fax:9203077
INFORMED CONSENT:
We are conducting a research in Lahore College for Women university under the supervision of
Dr shagufta Naz. The aim is to find the prevalance of autism in clinical settings. By completing
this survey you will be agreeging to provide the mentioned data to use for the purpose of my
research. All of the data that you will provide will remain confidential and anonymous. Your
cooperation in the research will be highly valued.
Researcher :
AIZA ARSHED
DEMOGRAPHICS :
Socioeconomic status:
Residence:
Gender:
Male Female
PARENT’S RELATIONSHIP:
Single Partnered
Categories Ratings
1.5 2-2.5 3
Relating to People
Imitation
Emotional Response
Body Use
Object Use
Adaptation to Change
Visual Response
Listening Response
Fear or Nervousness
Verbal Communication
Non-verbal Communication
Activity level
General Impressions