Research Proposal

ON

Autism Spectrum Disorder Among Children and Adolescents in Clinical Setup of Nepal

In Partial Fulfillment as the requirement for the course of study for Doctor of Philosophy (Ph.D) in
Psychology

SUBMITTED TO:
OFFICE OF THE DEAN, HUMANITIES AND SOCIAL SCIENCES
TRIBHUVAN UNIVERSITY
KRITIPUR, KATHMANDU

SUBMITTED BY: ANJAN KUMAR DHAKAL

T.U Regd. No: 18790-95
 Table of Contents

1. Title…………………………………………………………………………………..
2. Introduction/ Context……………………………………………………………….....1-3
2.1 Screening and Assessment of Autism……………………………………………..3-4
2.2 Diagnosis of Autism…………………………………………………………….....4-5
2.3 Therapeutic Approaches in Autism…………………………………………………5
2.4 Parental Stress……………………………………………………………………..5-6
2.5 Theoretical Framework……………………………………………………………..7
3. Statement of the Problems…………………………………………………………........8
4. Research Questions………………………………………………………………….......8
5. Hypothesis……………………………………………………………………………….8
6. Objective………………………………………………………………………………..8-9
7. Limitation of Study………………………………………………………………………9
8. Delimitation of the Study………………………………………………………...………9
9. Literature Review…………………………………………………………………….10-20
9.1 Concept of Autism…………………………………………………………………..10
9.2 Prevalence of Autism………………………………………………………………..11
9.3 Delay in screening Autism and It's Impact……………………………………………….11-13
9.4 Level of Screening………………………………………………………………………..13-16
9.5 Existing Testing tools for Autism………………………...………………………16-19
10. Conceptual Framework…………………………………………………………………20
11. Research Methodology……………………………………………………………….21-29
11.1 Study Design……………………………………………………………………21
11.2 Study Site……………………………………………………………………….21
11.3 Study Population………………………………………………………………..21
11.4 Justification……………………………………………………………………..21
11.5 Sample Size Estimation………………………………………………………21-22
11.6 Inclusion Criteria………………………………………………………………..22
11.7 Exclusion Criteria……………………………………………………………….22
11.8 Tools and Techniques Used for Data collection………………………………..22
11.9 Childhood Autism Rating Scale (CARS)……………...…………..…………23-24
11.10 Kuppaswamy Socio-econonic Status Scales……………………………………24
11.11 Identification of the Head of Family (HOF)…………………………………….24
11.12 Head of Family (HOF) as representative for entire family……………………..25
11.13 Occupation of Head of Family…………………………………………………..25
 11.14 Parental Stress Scale (PSS)………………………………………………………26
11.15 Techniques Used for data Collection…………………………………………..26-27
11.16 Data collection Procedure………………………………………………………..27
11.17 Item Generation…………………………………………………………………..27
11.18 Plan for Supervision and Monitoring………………………………………….....27
11.19 Plan for Data Management………...……………………………………………..28
11.20 Plan for Data Analysis……………………………………………………………28
11.21 Expected outcome of the Research…………………………………………….....29
11.22 Plan for Dissemination of Research Results……………………………………...29
11.23 Work Plan………………………………………………………………………...29
11.24 Ethical Consideration…………………………………………………………….29
11.25 Informed Consent………………………………………………………………..29-30
11.26 Budget Plan……………………………………………………………………….30
12. Discussion and Conclusion………………………………………………………….........30
13. Appendices………………………………………………………………………………33-49
14. Information sheet and informed consent form…………………………………………...30-33
15. Semi Structure Proforma…………………………………………………………………..34
16. Chief Complaint Collection Form………………………………………………………………….35
17. Request Letter for Expert Clinical Team………………………………………………….36
18. Kuppuswami Socio-Ecomonic Scale (SES)……………………………………………….37
19. Parental Stress Scale……………………………………………………………………….38
20. Childhood Autism Rating Scale…………………………………………………………..39-48
21. References…………………………………………………………………………………………49-52
 List of abbreviations
AAP =American Academy of Pediatrics
ADDM=Autism and Developmental Disabilities Monitoring
ASD=Autism spectrum disorder
CARS=Childhood Autism Rating Scale
CBS=Central bureau of statistic
CDC=Centers for Disease Control and Prevention
CGC Child guidance clinic
CHAT =Checklist for Autism in Toddlers
CSBS DP =Communication and Symbolic Behavior Scales Developmental Profile
ESAT =Early Screening of Autistic Traits questionnaire
et al. =et alia
FGD Focus group discussion
FYI =First Year Inventory
HIC=high-income countries
HOF=Head of family
ID =Intellectual disability
M-CHAT =Modified Checklist for Autism in Toddlers
NPV =Negative predictive value
PDD-MRS= Pervasive Developmental Disorders in Individuals with Mental Retardation
PEDS =Parents’ Evaluation of Developmental Status
PPV =positive predictive value
PSS= Parent stress scale
Q-CHAT =Quantitative Checklist for Autism in Toddlers
RBIs= Repetitive behaviours and interests
SES=Socioeconomic status
SPSS=Statistical Package for Social Science
SSIS=Semi-Structured Interview Schedule
STAT =Screening Tool for Autism in Two-Year-Olds
T.U=Trivhuban University
USA=United State of America
Yrs=Years
CHAPTER 1
Introduction
Autistic disorder, or autism, is a childhood disorder characterized by significant impairment in social
interaction and communication and by restricted pattern of behaviors, interest, and activities (Durand,
2004).
When people refer to “Autism”, they are usually talking about Autism Spectrum Disorders (ASD),
which is a brain-based disorder characterized by social-communication challenges and restricted
repetitive behaviors, activities, and interests. Autistic disorder also known as infantile autism. The
Centers for Disease Control describes ASDs as: “a developmental disability that can cause significant
social, communication and behavioral challenges. There is often nothing about how people with ASD
look that sets them apart from other people, but people with ASD may communicate, interact, behave,
and learn in ways that are different from most other people. The learning, thinking, and problem-
solving abilities of people with ASD can range from gifted to severely challenge. Some people with
ASD need a lot of help in their daily lives; others need less.”
Autism is about 4.5 times more likely to affect boys than girls, and is found in all racial, ethnic, and
social groups. There is no known single cause for autism, although the best available science points to
important genetic components. Through twin studies, scientists have determined that autism is a
genetically based condition. If one identical (monozygotic) twin has autism then there is a 36-95%
chance that the other twin will also be diagnosed with an autism spectrum disorder. For non-identical
(dizygotic) twins the chance is about 0-31% that both twins will develop autism spectrum disorder.
The chance that siblings will both be affected by ASD is also about 2-18%.
The prevalence of autism in not fixed. It has been changing times to times, in recent year it has been
increased. In 2018, the Centers for Disease Control and Prevention (CDC) issued its ADDM autism
prevalence report. The report concluded that the prevalence of autism had risen to 1 in every 59
– twice as great as the 2004 rate of 1 in 125. The spotlight shining on autism, as a result, has opened
opportunities for the nation to consider how to serve people on the autism spectrum and their families. 

Although autism impacts people regardless of race or ethnicity, there are racial and ethnic disparities
in diagnosis. According to the CDC, ADDM reports have consistently noted that more white children
are identified with ASD than black or Hispanic children. Previous studies have shown that stigma, lack
of access to healthcare services due to non-citizenship or low-income, and non-English primary
language are potential barriers to the identification of children with ASD, especially among Hispanic
children. A difference in identifying black and Hispanic children with ASD relative to white children
means these children may not be getting the services they need to reach their full potential.
This ADDM report found that the racial and ethnic differences in identifying 8-year-old children with
ASD persist, but also some indications that the differences may be narrowing.
Currently, boys are also approximately 4.5 times more likely to have an autism diagnosis than girls of
the same age. However, recent research suggests that girls may not show autism in the same way as
boys and might go undiagnosed because of that.
Scientists are unsure what, if any, environmental triggers may be involved in autism. One theory,
popular in the late 1990’s and early 2000’s, that vaccines cause autism, has since been disproven by
numerous studies conducted around the world.
Autism Spectrum Disorders are characterized by significant impairments in social interaction and
communication skills, as well as by the presence of extremely challenging behaviors. Such behaviors
include repetitive motor behaviors (hand flapping, body rocking), insistence on sameness, resistance to
change and, in some cases, aggression or self-injury. Many individuals with an autism spectrum
disorder have significant cognitive impairments, although some have typical or even above average
IQs. 30-50% of people with autism also have seizures.
Dr. Leo Kanner first described autism in 1943. He reported on eleven children who showed a marked
lack of interest in other people, but a highly unusual interest in the inanimate environment. Initially,
autism was thought to be an early form of schizophrenia, which led to the belief that its onset could be
caused by negative experience or bad parenting.
Autism is characterised by severe and pervasive impairments in several important areas of
development: reciprocal social interaction and communication as well as behaviour, and imagination.
In order to be diagnosed with autism, the behavioural symptoms in all of the above-named areas must
be present by age 3. Even if the parents often notice that something is wrong during infancy, it is very
difficult to diagnose autism before the age of eighteen months. This is because the behavioural
symptoms used to establish the diagnosis have not clearly emerged developmentally until that age.
This problem consists a range of developmental disorders including autistic disorder, Asperger’s
syndrome, and pervasive developmental disorder not otherwise specified/atypical autism, each of
which is characterised by a triad of impairments in social interaction, communication, and restricted,
repetitive behaviours and interests (RRBIs) (American Psychiatric Association, 2000; World Health
Organization, 1993).
ASD was originally identified and described in 1943 by Kanner, who believed the disorder to be
biologically based. However, in the following decades, psychosocial explanations for ASD began to
gain influence. Most notably, Bettelheim (1967) attributed the development of ASD as a response to
emotionally “cold” parenting. Although this theory was influential for a significant period of time, it
has not received empirical support, and it is now widely agreed that ASD is a biologically based
disorder. Twin studies have consistently indicated that ASD is a highly heritable disorder (e.g., Bailey
et al., 1995; Folstein& Rutter, 1977; Steffenburg, Hellgren, Gillberg, Jakobsen, &Bohman, 1989).
Furthermore, although molecular genetic studies have not yet established a set of necessary and
sufficient genes that cause the disorder, they have begun to identify a set of genes that are reliably
associated with ASD (International Molecular Genetic Study of Autism Consortium, 1998, 2001,
2005).
Screening and Assessment of Autism:
The assessment of ASD is behaviorally based; laboratory tests and neuroimaging cannot, at present,
confirm diagnosis (Talkowskiet al., 2014; Ecker and Murphy, 2014). Standardized measures can
support the clinician and researcher in their diagnostic formulation. Recently, a stepwise approach is
recommended: In a first step, the screening assessment, a rating scale or short interview is used to
decide whether a referral should be made to a specialized centre for diagnostic assessment. In a second
step, the diagnostic assessment, more comprehensive interview and observational methods are applied
by experienced practitioners for a final diagnostic decision.
Screening tools differ in the way the information are generated (Ibanez et al., 2014; Norris and
Lecavalier, 2010). Most screening tools, for example the Modified Checklist for Autism in
Toddlers (M-Chat), are designed as simple-to-use and economic questionnaires, which rely on self-
evaluations or ratings of significant others who are familiar with the individuals' typical behaviours.
Other measures, such as the Scale for Pervasive Developmental Disorders in
Individuals with Mental Retardation (PDD-MRS) are short diagnostic interviews conducted by a
trained professional with a caregiver evaluating relevant behaviours of the individual in situations of
daily life. Finally, observational instruments like the Childhood Autism Rating Scale (CARS) rely on
behaviours generated by prompts in semi-structured interactional situations with the assessor.
These methodological variations need to be considered when evaluating different screening measures.
For example, observational instruments assess certain context specific behaviours, while
questionnaires can be biased by the applicant, who may be not familiar enough with certain behaviour,
afraid of or keen on labeling by the ASD diagnosis. Therefore, simple questionnaire-based screening
measures handed to the individual or a caregiver should be complemented by at least second tool,
which is applied by a professional to improve diagnostic accuracy. Considering the few specific
services for a final diagnostic clarification, valid and reliable hybrid methodologies for ASD screening
are promising options for general practitioners and pediatric services, which are often left alone with
the final diagnostic decision.
Diagnosis of Autism:
Diagnostic clarification of the underlying disorder is also important for children with ASD
symptomatology: Those affected and their careers often benefit from diagnostic clarification because
of a better understanding of the difficulties they are faced with in daily life. ASD often co-occurs with
intellectual disability (ID) (Sappoket al., 2010) and mental ill health like anxiety disorders (White et
al., 2009), affective disorders (Matson and Williams, 2014), and severe challenging behaviours
(Sappoket al., 2014a). Diagnostic clarification of an underlying
ASD is pivotal to offer successful treatment options for the associated comorbidities. ASD is a
frequent cause for hospital admission, especially in children with ID, and may lead to additional
mental or behavioral disorders (Underwood et al., 2010; Sappoket al., 2014a; Bhaumiket al.,
2008).
The diagnostic process is a complex and comprehensive integration of information from different
sources (e.g., parents, teachers, educational staff) in different contexts (e.g., at home, in school, at
work) that benefits from the input of different professions (e.g., psychiatrists, psychologists, therapists,
social workers) according to level of functioning and age. This includes collecting information about
characteristics of current and lifetime behaviours in early development periods using interviews,
questionnaires and/or direct observations in standardized administration settings. In addition, it is
necessary to assess the level of intellectual and adaptive functioning, to conduct a comprehensive
medical and psychiatric assessment to rule out possible differential diagnosis or comorbidities
(Underwood et al., 2011).
Therapeutic Approaches in Autism :
Standardized instruments may support the assessment process. Growing evidence on the effectiveness
of early intervention on outcomes highlights the need for early identification of individuals with ASD
(Makrygianni and Reed, 2010; Dawson et al., 2010; Anderson et al., 2014, Orinsteinet al., 2014).
Therapeutic approaches may support the individual to make use of their developmental potentials and
ensure participation in social life (Gray et al., 2014). Moreover, parents have a better insight in their
child’s needs, can understand their behaviours and may create an ASD friendly environment (Midence
and O'Neill, 1999; Dietz et al., 2006). Despite the advantages of an early diagnosis, ASD often
remains undetected and thus untreated (Bradley et al., 2013; Sappoket al., 2013; Saemundsenet al.,
2010).
Parental Stress:
It is obvious that the number of children with autism is increasing day by day. It is due to various
reasons. One reason may be increasing awareness of parents about autism. A study showed that
mothers spending all the time with the child have more stressed than the fathers (Soltanifar,
Akbarzadeh, Moharreri, Soltanifar, Ebrahimi, Mokhber…& Naqvi, 2015).
An article in the Atlantic,  published by Kara Margolis, MD, a gastroenterologist at Columbia In
2013, University, commented that by the time she met a little boy with autism who suffered from
extreme stomach aches, “bloody scabs dotted his face, from the tender skin below his eyes to the tips
of his ears. His parents felt extreme stress watching him suffer, and while his physical symptoms are at
the extreme end, they are not unknown in this population, an important, overlooked factor contributing
to stress levels in parents of children with autism spectrum disorder (ASD) is the degree to which they
feel their child suffers, per the old maxim, (Fingerman, 2011).
A survey of 219 parents of children with autism, Sharpley, et al. (1997), found that more than 80%
reported sometimes being “stretched beyond their limits,” . Mothers reporting higher stress levels than
fathers.
Most of the parents develop stress when children with autism because of concern over the permanency
of the condition; poor acceptance of autistic behaviors by society and, often, by other family members;
the very low levels of social support received by parents. Subjective parental pain and consequent
stress went unobserved.
On Dabrowska (2010) research it is found that parents of children with autism also scored higher than
Down’s parents on (e.g., limits on family opportunities), and higher than parents of typically
developing children. As well, she found that mothers of children with ASD felt more stress than
fathers, but, interestingly, she did not find this problem in either the Down’s or the typically
developing population.
An investigation from Estes et al. (2009) on how child characteristics influence maternal parenting
stress and psychological distress showed higher levels of parenting stress and psychological distress in
mothers in the ASD group, and children’s problem behavior was associated with increased parenting
stress and psychological distress in mothers in both groups.
 Theoretical Framework

Unable to recognize mental

states correctly.
Theory of
Social Mind Deficit
Developmental Unable to use Information
S Disorder to interpret social Situations
y
m
p
t Difficulty to plan and
o Cognitive execution of goal-oriented
Autism theory
m Executive behaviors.
Limited Verbal and attempts to dysfunction
a
Non-Verbal Skills explain Lack of flexibility in thinking
t symptoms and behavior.
o
l Impulsivity
o
Difficulty to switch a new
g task
y Repetitive Behavior and
Restricted Interests
Weak
Central
Coherence Thought processing preferably
local focused on detailed and
specific information ignoring
context.

Tendency to persevere and focused

on detailedignoring context.
Statement of the Problem
The prevalence of autism in society has reached a new high. It is estimated that 1 in every 44 children
have been identified as having an autism spectrum disorder (Centers for Disease Control and
Prevention, 2008) in the world. The following are the five specific disorders characterized under the
umbrella of ASD:
1. Autistic disorder
2. Rett's disorder
5. Childhood disintegrative disorder
4. Asperger's disorder
5. Pervasive Developmental Disorder - Not Otherwise Specified 
As the occurrence of autism increases, so do the efforts to cure or ameliorate the characteristics of the
disorder. With all of the available options that exist as treatment options for individuals with autism,
there are few that meet the scientific standard for established treatments. There are not any Nepali
tools to detect the Autism, so it is very important to develop the tool in Nepali.
Research Questions
General
What is the occurrence of autistic children in clinical setting of Nepal?
Specific
What is the level of autism in children in clinical setting of Nepal?
What is the prevalence of autism in children in clinical setting of Nepal?
What is the appropriate tool for measuring autism in Nepal?
Hypothesis
The level of autism in children and adolescent of Nepalese Clinical setting would not be difference.
Objectives:
General
To identify the autistic children and adolescent in clinical setting in Nepal
Specific
To measure the level of autism in children and adolescent in clinical setting in Nepal
To access the developmental delay during their growth
To estimate prevalence of autism in a clinical setting of Nepali children
To develop a Nepali language version of a tool for autism
Limitation of Study
Study has specific time limitation for data collection which has only six months of periods . Next
limitation of the study is that the study is only focused on clinical set up or only based on hospital
samples I.e. the research will focused only to the children who will visit to the place where
psychiatrists and clinical psychologist find. For the entire study, the researcher has no out sources for
funding. All expenditures will be bear by researchers, so the study has limited financial constraint.
Delimitations
One of the delimitation of the study is it focuses on identification of the level of autism in children and
adolescent only in the clinical settings of Nepal. The researcher has chosen the clinical setting where
child and adolescent visit with their parents or primary care takers. Next delimitations of study is
literacy about autism on parents or care takers. People of Nepal has less literacy in autism as well as
neuro developmental disorder so one of the delimitation of this study may finding the child with
autism because of less literacy of parents or primary care takers. Likewise another delimitations is this
study will focused only in provincial capitals as well as cities of Nepal. Most of parents and primary
care takers with their children who dwells in remote areas of Nepal may not have accessibility to the
study.
 CHAPTER 2
Literature Review
Concept of Autism:
In 1798, the term autism was first used by French physician Jean-Marc Gaspard Itard for 11 years,
Victor, who was found after being isolated in the woods, as being socially withdrawn and to having
language and intellectual disabilities. He identified Victor as being developmentally different from
other children his age. Itard’s description of Victor’s tendencies would later be formally characterized
as autistic (Itard, 1932).
Paul Eugen Bleuler, a Swiss psychiatrist, after hundred years later in 1910, used the word ‘autism’ for
the first time for describing specific symptoms of schizophrenic patients with withdrawn from others
(Greydanus & Toledo-Pereyra, 2012). A student of Bleuler later in 1927, Eugene Minkowski,
described autism as the “trouble generator” of schizophrenia (Minkowski, Targowla, R., & Ziadeh, S.,
2001).
In 1943, Leo Kanner’s published an article, disturbances (Kanner, 1943) and early infantile autism
(Kanner, 1944) which is also known by Kanner syndrome. As immediately after, Kanner Hans
Asperger’s work, and Lorna Wing (1981) name it as Asperger Syndrome.
Rutter’s and Kolvin’s studies in the 1960s and 1970s, resulted the concept was again restricted only to
widen once more in the 1980s.
In the 1960s Michael Rutter’s tried to validated the syndrome and features of autism, which a previous
working party had not achieved; uncovered the high frequency of epilepsy at adolescence and
confirmed the prognostic significance of early language and intelligence (Rutter M, 1968). In a
landmark study with Bartak, (Rutter M, Bartak L, 1973).
In the early 20th century, the predominant theories on autism adopted a psychogenic approach,
according to which autism is caused by emotional or psychological factors rather than ones that are
biological or physical. Some of this was grounded in Freudian psychoanalytic theory, which was
popular at the time. These psychogenic explanations for autism were widely accepted among the
medical field and persisted due to a lack of medical research investigating the cause of autism.

Prevalence of Autism:
Autism (or autism spectrum disorders, ASD) is defined on the basis of social and communication
problems and repetitive and restrictive behaviors that can vary in individuals along a continuum of
severity (Lord et al., 2018).
Autism is a global phenomenon. Epidemiological studies estimate that 1–2%of children worldwide lie
on the autism spectrum, with approximately 52 million individuals with autism across the globe. These
estimates are largely driven, however, by prevalence estimates from high-income countries (HIC).
Current prevalence of ASD, as reported by CDC is about 1 in 44 according to estimates from CDC’s
Autism and Developmental Disabilities Monitoring (ADDM) Network. The overall male-to-female
prevalence ratio was 4.2. It is reported to occur in all racial, ethnic and socio economic groups. Studies
in Europe, Asia and USA show a prevalence of 1% while a study from South Korea reported 2.6%
prevalence. The global prevalence of autism has increased twentyfold to thirtyfold since the earliest
epidemiologic studies were conducted in the late 1960s and early 1970s.This points to a steady rise in
incidence to a quite alarming peak today. A study done in Nepal by International Child Health Group
in the Nepali population as it is in the UK, this would give an estimated true prevalence of 3 in 1000.
A data provided by Autism care Nepal, “There is no reliable data for Nepal, as autism is not known to
many people. There is a lack of awareness amongst people and diagnosis on this is weak. It is
estimated that there are about 2, 50,000-3, 00,000 Person with Autism (PWAs) in Nepal. Among them
about 60,000-90,000 PWAs are severely affected”.
A recent CDC report found that most children with ASD in the United States are diagnosed at a
median age of 4 years, 5 months. On average, median age of diagnosis is somewhat earlier for
children with autistic disorder (4 years) than for children with the more broadly defined autism
spectrum diagnoses, such as PDD-NOS (4 years, 2 months) and Asperger Syndrome (6 years, 2
months). Substantial racial/ethnic differences in the age of ASD diagnosis also have been
documented.
Screening Delay and It's Impact:
Supporters of universal screening say that delays in accurate diagnosis may contribute to familial
distress and limit access to intervention services, which many experts consider to be important for
improving children’s short-term and longer-term outcomes. Although some children can access
treatments through early intervention and medical systems while waiting for diagnostic confirmation,
the number of intervention hours received without an ASD diagnosis is usually substantially less than
many experts recommend.
Over the past decade several professional groups, including the American Academy of Neurology, the
American Academy of Child and Adolescent Psychiatry, and the American Academy of Pediatrics
(AAP)have issued guidance on the early detection of ASD. The most recent AAP guidance
recommends universal screening of all children at 18 and 24 months of age in addition to
developmental surveillance and monitoring. Other agencies have not supported ASD screening; 2011
guidance from the U.K. National Screening Committee does not recommend systematic population
screening, nor does 2007 guidance from the Scottish Intercollegiate Guidelines Network (SIGN).These
organizations cited a lack of data on positive predictive value (PPV) in a population setting. However,
these recommendations do not reflect all currently available screening research, and the SIGN
guidelines are currently under revision but not completed at the time of this report.
After screening positive, some families access diagnostic and treatment services quickly, while other
families report significant time (e.g., waitlists) and financial barriers in accessing evaluation resources.
Some research reports high levels of parental stress associated with the ASD diagnostic process and
advocates additional work to understand the impact of the process on parent functioning. Both delays
and demands associated with the ASD diagnostic process may place a burden on the families of
children who falsely screen positive, and this is one reason that the screening process in ASD has
evolved from the use of single questionnaires with very high false-positive rates to two-stage
screening approaches that include parent questionnaires and follow-up interviews. It is possible that
concerns about long waiting lists and/or over-referral of children who meet screening criteria for
reasons other than ASD are contributing to low practice of ASD screening in pediatric practice.
Increasingly, researchers are attempting to identify mechanisms to train additional community
providers (e.g., primary care providers, behavioral providers, educational professionals) to provide
timely and accurate diagnosis of ASD and reduce diagnostic wait times. However, variability still
exists in families’ abilities to access specialized diagnostic assessment resources.
A number of U.S. professional groups and affiliated organizations, including the AAP, CDC, and
Autism Speaks, have developed materials to help clinicians care for individuals with ASD and related
developmental disabilities, including screening and providing follow-up care. This includes
information and training on available screeners, coding/billing guidance, and practice support, as well
as referrals and resources.
Early genetic and environmental risk factors affect the development of the brain in infants with ASD.
It is thought to contribute to an atypical trajectory of brain and behavioural development. This again
affects how the children interact with their environments.
Level of Screening:
Many studies are conducted differently depending on whether the instrument is intended to be a Level
1 (population level) or Level 2 (for high-risk children) screener. How this affects the recruitment,
inclusion criteria, and number of participants is covered in the sections below. Nonetheless, every
study compares the screening results to a reference standard or “gold standard,” which consensus
dictates to be the true test of whether the child actually has the condition or not. For autism spectrum
disorder, this invariably entails a “Best Estimate Diagnosis” by an experienced practitioner who is
drawing from a variety of information gathered about the child (e.g., history, caregiver interview,
standardized tests, and direct observation of the child).
When a child fails a screening test, he/she is shown to be at increased risk for the condition, and the
result is called positive. When the child passes the screener, the result is called negative; the child is
not considered at increased risk for the condition. The screener results, characterized as positive or
negative, are then compared to the reference standard, which is also determined as positive or negative
for each child. When a child is positive for the condition on the screener and is shown to have the
condition on the reference standard, then it counts as a true positive. If the child did not turn out to
have the condition, then it was a false positive. The negatives follow in the same fashion.
Sensitivity (Se) and specificity (Sp) are calculated with proportional formulae using true and false
positives and negatives. In explanatory terms, Se represents the degree to which the screener
accurately detects the condition. The measure runs from 0 to 1.0, with 1.0 being perfect detection.
However, the predictive validity of the screener is only understood by considering both Se and Sp
together. Sensitivity can be very high if the screener has included almost everyone, and in doing so, of
course, it included children with ASD. Specificity represents the extent to which the screener
distinguished the targeted condition from other or no disabilities. Therefore, Sp balances out the Se by
showing that it did not include too many extra children who in fact had a different developmental
disorder or had no developmental problems at all.
Acceptable levels of Se and Sp depend on the outcome or condition of interest. More specifically, for
the detection of a preventable communicable disease, investigators may tolerate lower specificity
(greater proportion of false positives) for higher sensitivity (greater proportion of true positives).
Nevertheless, it is suggested that the threshold values for acceptable levels of sensitivity and
specificity should be at least .80 or greater, although accuracy levels of .90 or above are considered
optimal.
Positive predictive value (PPV) is a measure that reflects the percentage of children who screened
positive and who did actually have the condition based on the gold standard testing. Negative
predictive value (NPV) is the inverse—the percentage of children who screened negative and who did
not have the condition. Positive and negative predictive values are directly related to the prevalence of
the condition under study within the population; these measures are not intrinsic to the instrument. In
other words, a screening instrument that has high sensitivity and specificity may have low PPV if the
prevalence of the condition is low—a positive result is less likely to be accurate if a condition is rare.
The ideal procedure for examining the predictive validity of a screening instrument involves a direct
route between screener administration and diagnostic outcomes, with the most knowledge available
about scoring outcomes for every child who was given the screener. This can be challenged by
attrition during the various phases of the study, and, as will be seen, many studies include additional
steps and criteria for a child to advance from one phase of screening and testing to the next. After
thorough review of the initial group of studies, several were excluded from in-depth reporting because
of this feature; they were no longer considered a test of the targeted screener because other, sequential
procedures obscured the findings.
Screening provides a standardized process to ensure that children are systematically monitored for
early signs of ASD to promote earlier diagnosis. The current review indicates that screening in
children aged 18 to 24 months can assist in early detection, consistent with current American
Academy of Pediatrics’ recommendations.
Although there have been considerable advances in characterizing early behavioral markers predictive
of autism spectrum disorders (ASDs), as summarized in this special issue to Pediatrics, translation
into clinical practice requires that the process of monitoring for such early risk markers be
operationalized to facilitate broad implementation. To that end, universal screening for ASD has been
recommended by the American Academy of Pediatrics (AAP) to ensure consistent practice and
optimal detection of young children with early signs of ASD across a range of clinical and community
contexts. The AAP has recommended that all children be screened with an ASD-specific instrument
during well-child visits at ages 18 and 24 months in conjunction with ongoing developmental
surveillance and broadband developmental screening. The rationale for this recommendation was
based on the presence of ASD symptoms by age 18 months, promising data on early ASD-screening
tools, and the availability of effective intervention strategies targeting this age group. Recent
randomized controlled trials have added new evidence that for many children aged <3 years, early
intervention can improve outcomes, including core deficits of ASD (ie, social attention), IQ, language,
and symptom severity, thus increasing the potential benefits of early diagnosis facilitated by early
screening.
Some scientists and practitioners have questioned whether the evidence relative to general
developmental surveillance warrants ASD screening, and others have argued that research needs to
move beyond risk classification and evaluate longer term outcomes of ASD screening (eg, impact on
age of diagnosis, related gains attributable to earlier enrollment in intervention). The uptake of ASD
screening into pediatric practice has been modest. Although potential facilitators and barriers to ASD
screening have been researched and debated, screening rates in many regions of the United States
remain low.
The terms “Sensitivity” refers to the proportion of children with ASD who are correctly identified as
“high risk” according to results of screening; a child with ASD who is not identified by the screen is
considered to be a false-negative. Specificity refers to the proportion of children who do not have ASD
who are correctly classified using the screening tool as not having risk for ASD; a child who does not
have ASD yet screens positive is considered to be a false-positive. The positive predictive value (PPV)
for ASD of a screening test is defined as the proportion of children screening positive who receive an
ASD diagnosis divided by the total number of screen-positive cases. The negative predictive value
(NPV) is the proportion of screen-negative children not receiving an ASD diagnosis. PPV and NPV
are influenced by the baseline prevalence of ASD in the population being screened as well as the
sensitivity and specificity of the screening tool. Although sensitivity and specificity are intrinsic
measures of test performance, PPV and NPV arguably have more inherent meaning for individual
family-level and system-level evaluations of screening.
It is also important to distinguish level 1 from level 2 screening. Level 1 screening applies to all
children regardless of risk status (ie, “universal” screening). In contrast, level 2 screening is targeted at
children already identified as being at increased risk (eg, due to a positive family history, concerns
raised by parents or clinicians, identification by a level.
Existing Testing tools for Autism:
There is various testing and tools that can be used to measure the severity of the autism. All testing
tools has variations. Some can be only used for only to identify the children for separating the risky or
not being risky for autism. Where some can detect the severity of autism. Some of the tools that can be
used in autism are:
M-Chat:
The Modified Checklist for Autism in Toddlers (M-CHAT; Robins, Fein, & Barton, 1999a) is a
screening measure developed to identify young children with an elevated risk for autism spectrum
disorder (ASD) through parent report. This instrument is one of the most commonly used screening
instruments for ASD in toddlers worldwide. The checklist was developed and validated for children
between 16 and 30 months old. Parents are asked to answer 23 yes/no questions about the usual
behavior of their child.
The STAT™ (Screening Tool for Autism in Toddlers & Young Children):
It is an empirically derived, interactive measure that has been developed to screen for autism in
children between 24 and 36 months of age. It is designed for use by community service providers who
work with young children in assessment or intervention settings and who have experience with autism.
The STAT™ consists of 12 items and takes about 20 minutes to administer. Activities assess key
social and communicative behaviors including imitation, play, requesting, and directing attention.
Autism Diagnosis Interview – Revised (ADI-R):
A clinical diagnostic instrument for assessing autism in children and adults. Autism Diagnostic
Interview-Revised (ADI-R). The ADI-R (Rutter, Le Couteur, & Lord, 2003) is a semi-structured
diagnostic interview used to assess behaviors related to ASD. The ADI-R takes one and a half to two
and a half hours to administer and contains questions about children’s early development and
developmental milestones and focuses on three functional domains: language/communication;
reciprocal social interactions; and restricted, repetitive, and stereotyped behaviors. It is administered
by a trained and experienced clinician through a formal interview with the child’s caregiver(s).
Training on administration of the ADI-R can be completed in 16 hours through a DVD series in
addition to two hours of exercises with experienced clinicians. The ADI-R should be administered for
children who have a mental age of at least 24 months. A study by Corsello et al. (2007) found that the
ADI-R has excellent sensitivity (.90) in distinguishing children with ASD from those who do not have
ASD, however the specificity is lower (.54) in distinguishing these two groups. The algorithm used to
score the ADI-R distinguishes between children who have DSM-IV-TR autistic disorder from those
who do not; it does not diagnose children with PDD-NOS. Although it is likely that the ADI-R will
continue to have strong reliability and validity when used for DSM-5 criteria, revised algorithms are
needed before it can be used in clinical practice (e.g., LeCouteur, James, Hammal, & McConachie,
2013).
Autism Diagnostic Observation Schedule – Generic (ADOS-G):
A semi-structured, standardized assessment of social interaction, communication, play, and
imaginative use of materials for individuals suspected of having ASD. The observational schedule
consists of four 30-minute modules, each designed to be administered to different individuals
according to their level of expressive language. The ADOS-2 (Lord, Luyster, Gotham, & Gutherie,
2012) is a standardized observational assessment of ASD that consists of five modules, which are
selected for administration based on the individual’s age and use of speech. The ADOS can be
administered to toddlers with a developmental age of 12 months through adulthood and to those with
limited verbal speech. Through a series of play based tasks, the semi-structured instrument enables
trained professionals to assess communication, social interaction, play and restricted and repetitive
behaviors (Lord et al., 2012). The assessment takes 40 to 60 minutes to complete. The person
administering the ADOS must receive 12 to 18 contact hours of training (in person or via video/DVD)
or attend an approved ADOS-2 workshop. Across the five modules ADOS-2 has good sensitivity
(>.80) and specificity (> .80) in discriminating autism and PDD from non-spectrum disorders. Scores
from modules 1, 2 and 3 of the ADOS can be interpreted to indicate the range of concern raised from
the assessment, across four categories from no evidence of autism spectrum disorder to a high level of
autism spectrum disorder. The Toddler Module does not produce a score; only ranges of concern
(little-or-no, mild-to-moderate, moderate-to-severe) result from administering the assessment (Luyster
et al., 2009). Because the ADOS-2 was developed with the new diagnostic criteria in mind, it is not
expected that changes to the diagnostic algorithms will be necessary.
Childhood Autism Rating Scale (CARS):
(CARS; Schopler et al., 1980) is a brief assessment suitable for use with any child over 2 years of age.
CARS includes items drawn from five prominent systems for diagnosing autism; each item covers a
particular characteristic, ability, or behavior.
The Social Communication Questionnaire (SCQ; Rutter, Bailey, & Lord, 2003)
It is an autism spectrum disorder screening instrument for individuals aged 4 years and up, with a
mental age over 2 years. The SCQ contains 40 yes/no items, which can be completed in less than 10
minutes by a parent or other caregiver. It is based on the Autism Diagnostic Interview-Revised (ADI-
R), and agreement between the two instruments is high at the total score level (Rutter, LeCouteur, &
Lord, 2003). The SCQ has two forms: the Lifetime Form, which focuses on behavior throughout
development; and the Current Form, which focuses on behavior during the most recent three months.
The instrument yields a Total Score for comparison to defined cutoff points, which identifies
individuals who require evaluation because of elevated likelihood of ASD. Total time consume by this
tool is less than 10 minutes. It has 40-item parent questionnaire; Current and Lifetime forms Yields
total score that is compared with cutoff. It is used in Age range of 4 years, with a mental age over 2
years.
Gilliam Autism Rating Scale (GARS-2):
The GARS-2 (Gilliam, 2006) is a behavioral checklist which consists of 42 items across 3 subscales,
a) stereotyped behaviors, b) communication, and c) social interaction. Items are posed in three ways,
including a 4-point Likert scale, parent interview, and open-ended questions. It is designed to be
completed by parents, teachers, or professionals who are assessing individuals 3 to 22 years of age.
While there have been no independent studies published on the specificity and sensitivity of the
GARS-2, the version that preceded the GARS-2 (the GARS), which is very similar in content, does
not meet recommended levels of specificity and sensitivity. In their review of the GARS, Norris and
Lecavalier (2010) found the sensitivity of the GARS to be in the range of .38 to .53 for four studies,
with one study finding a sensitivity of .83 (Norris & Lecavalier, 2010). In terms of specificity, a study
by Sikora, Hall, Hartley, Gerrard-Morris, & Cagle (2008) reported a specificity of .58. It is unclear
how well the GARS-2 aligns with the DSM-5 criteria.

Social Responsiveness Scale-2:

The SRS-2 is a measurement of the severity of autism spectrum symptoms as they occur in a child’s
natural social settings (Constantino & Gruber, 2012). The instrument aids in distinguishing autism
spectrum conditions from other child psychiatric conditions by identifying the presence and extent of
autistic social impairment. It is administered with children as young as 30 months through adulthood
and takes 15 to 20 minutes to administer. There are multiple versions of the SRS-2 which are
administered based on the person’s age. There is a Pre School form for children ages 2.5 to 4.5 years
and a School
 Conceptual Framework of Research
The conceptual frame work is developed deriving from different literature review and theories of autism
developed by different scholar

Factors contributing for autism

 Feeling and stress

 Maternal Smoking when the child was on womb of mother
 Early exposure to mercury
 Mother with obesity, diabetes and hypertension
 Birth complications (Ischemia, hypoxia)
 Immigration
 Low birth weight
 Extreme prematurity
 Older age of parents>=35 mother and =>45 Father
 Socio communication skills
 Family functioning
 Parenting style

Restricted, repetitive patterns

AUTISM of behavior, interests, or
activities, as manifested by at
least two of the following,
currently or by history

These disturbances are not

Symptoms cause clinically
significant impairment in
social, occupational, or
other important areas of
current functioning.
CHAPTER 3
better explained by intellectual
disability (intellectual
developmental disorder) or
global developmental delay.
Intellectual disability and
autism spectrum disorder
frequently co-occur; to make
comorbid diagnoses of autism
spectrum disorder and
intellectual disability, social
communication should be
below that expected for general
developmental level.
 Research Methodology
Study Design
This study will be based on mixed method but more focused on quantitative method. Study variables
would be the level of parental stress, academic level dependent on level of autism, socio-economic
status and level of parental education.
Study Site
Tribhuwan University Teaching Hospital, Patan Hospital, Kanti Children Hospital, Metro Clinic,
Autism care Nepal and other private hospital, clinic and institution dealing with autism.
Study Population
The children and adolescent of age 18 and below would be taken are the study population and parents/
Guardians would be interviewed for the research.
Justification:-
Hospital is one of the best places to conduct research in autistic children since due to social stigma;
people don't reveal their children problems in other places. Along with that, different levels of autism
in different age group can be studied in a single setting.
Sample Size estimation
All the children meeting selection criteria presented at Clinical setting and institutional setting. Sample
size will be calculated by using the formula of
n = z2 [P (1-P) ∕ d2 ]
Where, P=0.05, d=0.025, Z=1.96, Confidence Interval (CI) =95%
To explore more, n = z2 [P (1-P) ∕ d2 ]
n = 1.962 [0.05(1-0.05)/0.0227 ]
n = 3.84[0.05*0.95/0.0006] n = 3.84*79.166
n = 303.997
z = 1.96 at 95% confidence level from normal table
The estimated sample size for this test was calculated to be 309.997. Rounding it off, a total of at least
304 children will be taken as the study sample.
For item generation, key informant interview (KII) and focused group discussion (FGD) based on age
will be done with the primary care takers of the selected children.
Content adequacy will be confirmed by discussion with a group of experts including consultant
psychiatrist and clinical psychologist by the use of sorting method.
Inclusion Criteria
• Nepali children who are up to 18 years of age
• Who is included in autism spectrum disorder according to Childhood autism rating scale
(CARS).
• Who visited the clinical set-up.

Exclusion Criteria

 Children and adolescent with developmental delay

 Physical disability
 Non-Nepali citizen
 Immigrated citizen.
Tools and Techniques for Data collection
Childhood autism rating scale (CARS)
The Childhood Autism Rating Scale (CARS) is a behavior rating scale intended to help
diagnose autism. A CAR was developed by Eric Schopler, Robert J. Reichier, and Barbara Rochen
Renner. The scale was designed to help differentiate children with autism from those with other
developmental delays, such as intellectual disability.
The CARS is a diagnostic assessment method that rates individuals on a scale ranging from normal to
severe, and yields a composite score ranging from non-autistic to mildly autistic, moderately autistic,
or severely autistic. The scale is used to observe and subjectively rate fifteen items.
It is done by primary healthcare provider, a teacher or a parent by rating the child’s behaviors from 1
to 4. The numbers indications 1 being normal for your child’s age, 2 for mildly abnormal, 3 for
moderately abnormal and 4 as severely abnormal. Scores range from 15 to 60 with 30 being the cutoff
rate for a diagnosis of mild autism. Scores 30-37 indicate mild to moderate autism, while scores
between 38 and 60 are characterized as severe autism. Keep in mind that while the Childhood Autism
Rating Scale can easily be accessed on the internet, using it to evaluate your child on your own is not
advised. It is still best to seek professional help in interpreting the result of your child’s CARS.
It should be remembered that constant and keen observation of your child is important when
completing the CARS. The parent or teacher or medical provider should be able to have good
understanding of the criteria so that accurate results can also be obtained. If any confusion arises, do
not hesitate in any way to clear it up with the person in charge of giving you the test. A CARS is
normally used with children 2 years of age and above. Although CARS has been used in the diagnosis
of adolescents as well, according to a study done by the University of Texas Health Science Center.
 relationship to people
 imitation
 emotional response
 body
 object use
 adaptation to change
 visual response
 listening response
 taste-smell-touch response and use
 fear and nervousness
 verbal communication
 non-verbal communication
 activity level
 level and consistency of intellectual response
 general impressions
Kuppaswamy Socio-econonic Status Scales
This scale was devised by Kuppuswamy in 1976 and consists of a composite score which includes the
education and occupation of the Family Head along with income per month of the family, which yields
a score of 3–29. It is the measure of the social standing of the individual or a family and has a wide
impact on an individual/family's health, educational attainment, diet, lifestyle, etc., The per capita
income of citizens is a major factor that decides the SES of the population. The affordability and
utilization of the health facilities depend on the socioeconomic profile of the population. The periodic
changes in the consumer price of goods globally as well as nationally due to inflation warrants that it
is mandatory to constantly update the income-based socioeconomic scales so as the assessment is
made correctly in practice.
Socioeconomic status (SES) is one of the most important social determinants of mental health and
disease, thus, a widely studied construct in the social sciences. SES influences the accessibility,
affordability, acceptability and actual utilization of available health facilities. Socioeconomic status
(SES) is a combination of social and economic variables.
It is very useful tools to access the socio economics status of the individual and family. It includes the
following domain, education status of family
a) Identification of the HOF
In certain family situations it may be difficult to classify one individual as the HOF. Such difficulties
arise if the family has one or more elderly members who may be retired or unemployed. Despite not
being the eldest earning adult member in the family they may still wield considerable say in family
matters, by virtue of their age, or it may be that despite not earning regular income they are the
owners/holders of the shared family properties. It may be difficult for researchers in field settings to
arrive at accurate identification of the HOF.
(b) HOF as representative for entire family
Second important point is that the education status of the identified HOF is being taken as a surrogate
measure for the entire family's education level. While this may have been reliable enough in the times
gone by, it is no more reliably applicable in today's scenario. India is in a time of dynamic
demographic transitions. With increased opportunities and support, it is now common to find that in a
family having an uneducated HOF, children or grandchildren have received tertiary level education or
professional education. If the eldest member of the family is identified as HOF, the chances of low
score in education subscale increase as the literacy rate in India earlier was much lower than what it is
now.
Occupation of Head of Family
(c) Grading the occupation
There has been a remarkable opening up of the Indian economy in the past years. If we study the
sectors of employment, from a majority of working population being employed in the primary sector
our occupational profile has seen a profound shift with more and more people finding work avenues in
the tertiary or the ‘services’ sector. Not only that but also the sheer variety and number of occupations
available have increased manifold as the complexities of the modern civilization have grown. While it
may still have been possible to grade the smaller number of possible occupational profiles as was true
earlier, but now it is very difficult to accurately grade each and every occupation and especially
difficult to slot it into one of the assigned scores in the Kuppuswamy classification for occupation.
(d) Scoring the occupation
The classes of score possible for occupation may now prove too limited considering the myriad
varieties of occupations in the current society. The category 3 of the occupation subscale creates much
confusion as it is not given a name and neither is it defined clearly. Only examples of the job profiles
fitting the category are given which creates scope for ambiguity and subjectivity.
(e) Measure of success/standing in their chosen occupation not accounted for Assessing the
Income
The SES of the family may also be affected in a large part by how successful a person is in his/her job,
or by how much social reputation(s) he has built with the gainful employment. An example may be an
unskilled worker doing a simple occupation, but who may have lot of social standing owing to unpaid
social work.
(a) Validity of directly asking for income
The Kuppuswamy scale requires directly asking the respondent about the income earned. In our
experience, this proves to be a very tricky subject to elicit information about. Invariably it leads to
nonresponses or responses that seem more likely to be underreported figures. Even Kuppuswamy had
mentioned this as a possible shortcoming. The practicality of asking for income directly is a point in
question, and the problems of low validity are seen to persist even if the questionnaires are
anonymous/self-filled.
(b) Only regular monthly/annual income being assessed
The regular monthly or annual income may not be a true reflection of the family's economic standing.
There are innumerable examples where a one-off massive income addition may have occurred, for
example, a family holding land tracts may have sold it and received a one-time monetary
compensation in lieu thereof; or there may have been a financial compensation for an untimely
death/injury of a family member in an accident, terrorist strike, or other such events.
(c) Only liquid income being assessed
The past economic conditions of the family can impact their present and future well-being too. The
physical assets possessed by the family such as number of residential properties, number of
commercial properties, extent of agricultural land holdings, investments such as gold or fixed deposits,
and assets that may be regarded as investment such as vehicles, durable consumer goods, etc., are not
assessed as part of the Kuppuswamy scale.
The Kuppuswamy scale in its various forms has held stead over 3 decades now and is still widely used
as a measure of socioeconomic status in the urban population. However, it is important to discuss the
applicability in the changed modern scenario. Despite best efforts, we could not find any recent study
on validation of the Kuppuswamy scale in the present scenario. In the absence of a universally
accepted available alternative, it may be perforce necessary to keep on using the Kuppuswamy scale;
but discussion on its merits and demerits in the current scenario is important, especially for the health
professionals and others new to the use of measures of socioeconomic conditions of a family.
Parental Stress Scale (PSS)
The Parental Stress Scale is a self-report scale that contains 18 items representing pleasure or positive
themes of parenthood (emotional benefits, self-enrichment, personal development) and negative
components (demands on resources, opportunity costs and restrictions). Respondents are asked to
agree or disagree with items in terms of their typical relationship with their child or children and to
rate each item on a five-point scale: strongly disagree (1), disagree (2), undecided (3), agree (4), and
strongly agree (5). The 8 positive items are reverse scored so that possible scores on the scale can
range from 18 to 90. Higher scores on the scale indicate greater stress. The scale is intended to be used
for the assessment of parental stress for both mothers and fathers and for parents of children with and
without clinical problems. The Parental Stress Scale demonstrated satisfactory levels of internal
reliability (.83), and test-retest reliability (.81). The scale demonstrated satisfactory convergent validity
with various measures of stress, emotion, and role satisfaction, including perceived stress, work/family
stress, loneliness, anxiety, guilt, marital satisfaction, marital commitment, job satisfaction, and social
support. Discriminate analyses demonstrated the ability of the scale to discriminate between parents of
typically developing children and parents of children with both developmental and behavioral
problems.
Techniques Used for Data Collection:
The research will access for approval for NHRC, selected hospitals, sampling will be done, consent
will be taken from respondents, and tools will be used SSIS, SES, CARS, and PSS.
The information will gather from parents and guardians. Original CARS will be used to identify the
presence and intensity of autism. Consent will be taken from parents and guardians. SSIS will be used
to access the demographic information of clients where SES will be used to identify the economic
status of client. CARS will be used to identify the presence and intensity of autism. Parent stress scale
(PSS) will be used to access the level of stress in parents and guardian of autistic children and
adolescents. Before using it for study focused group discussion (FGD) will be conducted with autistic
children and their parents and will be corrected the theme of sentence and word which they feel
difficult and will develop it again their suggestions and advice and will be corrected the statement.
For development of the tool in Nepalese context, after explaining the purpose of the study, collection
of information from the primary care giver will be attained using KII and FGD questionnaire from 304
primary care takers verbatim. The responses obtained from KII and FGD questionnaires would be
presented for consultation with the group of experts for content adequacy and sorting process. In
addition to that, analysis of variance and factor analysis will be done. Pilot study will be done with 10
key informants. Finalized items will be put into Likert scale and the final inventory along with SSIS,
SES, and CARS, PSS will be given to primary service provider's psychiatrists, clinical psychologist
and psychologists of the children and adolescent up to 18 Yrs.
Data collection Procedure
Item Generation
We would be collecting information from 304 primary care takers of children and adolescent under the
age of 18 years verbatim to the KII checklist and FGD checklist. The answers will be sorted out as per
the age factor and submitted to the expert team. After finalization of the item contents of the test, the
responses would be sorted out in respective domains of Social developmental disorder, Limited verbal
and non-verbal skills, and repetitive behavior and restricted interests. The responses thus sorted out
would be translated to a Nepalese language by a Nepalese Clinical Psychologist and then back
translated by an expert team for content validation. The final test along with CARS would be done for
attaining a standard tool appropriate for accessing level of autism in setting of Nepal.
Plan for Supervision and Monitoring
The main aim of this study is the completion of Doctor of Philosophy in Psychology program,
T.U., Kirtipur, Nepal. The copies of dissertation will be submitted to the Central Department of
Psychology. Furthermore my efforts will be made to publish the result/findings of dissertation to
national and international journals.

Plan for Data Management

Daily editing will be done after collecting data to maintain accuracy and completeness. Collected data
will be coded in SPSS (Statistical Package for the Social Sciences). Researcher will assign the code i.e
he/she will code each respondent with the name initials of the child followed by interview site
followed by the number. For example, if a child named ABC is selected from a Governmental hospital
and is the first case taken for the study, her code would be ABCGH001. The detail information of
assigned code would be locked in an archive.
In case study there will be interview, behavioral observation, questionnaires using to gather
data in both qualitative and quantitative method to ensure methodological triangulation. On the basis
of quantitative analysis and result, few detail case study (to obtain qualitative data) will be done and
the result will be written descriptively.
Plan for Data Analysis
Interpretations of the findings will be made on graphical or tabulated forms. Most specifically
findings will be put on Pie Charts, Bar graphs and Tables to make it shorter and clearer. The alpha
internal consistency will be estimated for the various sub-scales. As Cronbach's Alpha (α) is the most
common measure of internal consistency (reliability) which will be calculated to check reliability of
the scale. In addition to estimating internal consistency, correlations between the raw scores on each
scale and the child’s age, sex as a test of the validity of the scales. Factor analysis will be used for
investigating variable relationships of the test. For the purpose of goodness-of-fit, confirmatory factor
analysis will be done. The new scale should determine content validity, internal consistency, and
reliability that provide supportive evidence of construct validity. Further evidence of construct validity
will be tested using correlation with CARS (another tool for assessment of autism rating scales)
(convergent validity) and to which they do not correlate with dissimilar measures (discriminant
validity). Logistic regression analyses will be done to discriminate children with children showing
ASD from a children not showing ASD. Cut off scores for specificity and sensitivity will be calculated
on the basis of data collected where norms will be developed from these samples. To determine the
predictive validity of measure, diagnostic decision, sensitivity and specificity are important and will be
examined through positive predictive power (PPP) and negative predictive power(NPP).

Expected outcome of the Research

There would be a base line of sign and symptoms of autism in Nepalese children in clinical
setting along with a tool to measure level of autism that would provide an accurate measure in
Nepalese language.
Plan for Dissemination of Research Results
It will be presented as dissertation report
Work plan
Activities 1st Sem 2nd Sem 3rd Sem 4th Sem 5th Sem 6th Sem
Literature review
Proposal finalization
Development of the scale
Data collection
Data analysis
Interpretation
Report writing
Tentative date of starting the project: July, 2023
Working on a regular basis
Ethical Consideration
Regarding the human participants:
Human participants are required in this research as this research is solely based on the verbal
responses of the primary care givers and service providers of children up to mid childhood.
Participants are expected to answer based on their memory of their children’s development.
Informed Consent form/Ethical Issues:
For consent taking from the primary care giver of the research participants, we would first be
informing them about what we are going to do and how it is going to help them and their harmlessness
verbally and then only after their acceptance, we would ask them to sign the consent form. The
researcher and no other person is responsible for obtaining the informed consent from the primary care
giver of the participant in this research study and no information is withheld at the time of the
informed consent. Similarly, ethical clearance will be taken from the institutional review board of
Kanti Hospital and NHRC before commencing the research work. Approval was obtained from both
institutes before the data collection. Informed consent was taken from all participants and their
relatives. Confidentiality was maintained.
Budget Plan

Items Amount
University Charge Rs. 3,00,000
Data collection expenses Rs. 40,000
 Travels and food Rs.20,000
Salary Rs.80,000
Salary for Statistician Rs. 40,000
Salary for research assistants Rs. 40,000
Stationary Rs. 65,000
Translation charge of tool (Translation and back Rs. 30,000
translation)
Copies of questionnaires and consent forms Rs.5000
Printing and binding Rs. 10,000
Miscellaneous (Contingencies) Rs.10,000
Total 4,85,000

Discussion and Conclusion

The study is mainly focused on identifying the level of autism in children up to the age of 18
years and any lag in the categories under it. In order to fulfill the aim of the study, Before commencing
the research permission from Kanti Children Hospital, Institutional Review Committee and National
Health Research Council (NHRC)will be taken. All the children who meet the inclusion criteria from
hospitals will be included for the study in the duration of 3 years. Regular supervision from the
supervisor and other experts would be done in order to get the optimum output from the research.
Semi-Structured Interview Schedule (SSIS), Kuppuswamy’s Socio-Economic Scale (SES), and
Childhood autism rating Scale (CARS) and parent stress scales (PSS) will be used. The obtained data
would be analyzed using Statistical Package for Social Studies (SPSS). Along with that, a new tool for
measuring the level of autism in children of same age group would be developed in Nepalese
language.
 Appendix :
Consent Agreement:
Information Sheet
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kl/0ffdsf] af/]df 1fg lbg ;Sb5 / o:tf afnaflnsfx?sf ;d:ofx?nfO{ s;/L Joj:yfkg / ;xof]u ug{]
eGg] of]hgf lgdf{0f tyf th{'df ug{df dbt ub{5 .
cWoog s;/L / sf] 4f/ ul/+b} 5 <
afnaflnsfx?sf] Autism Spectrum Disorder ;d:of kl/If0f ug{sf lgldQ k|ZgfjnL tof/
kfg{ sflGt afn c:ktfn sf7df08f}+sf] afnaflnsf tyf lszf]/ lszf]/L dfgl;s /f]u ljefudf sfo{/t
lrlsT;f dgf]lj4 (Clinical Psychologist) tyf lqe'jg ljZjljWofnodf dgf]lj1fgdf lj2ofjfl/lw
ul//x]sf 5fq lk=Pr+ 8L :sn/ ->L cGhg s'df/ 9sfn_ of] cWoog÷ cg';Gwfg lqe'jg
ljZjljWofnosf] zf]w u|Gy (Doctoral Dissertation) x'g]5 / of] cWoog lqe'jg ljZjljWofnosf k|
fWofksx?af6 ;'k/Lj]If0f x'g]5 . To;}n] of] sfo{ pRr:t/sf] x'g] s'/fsf] ;'lglZrttfdf ljZj:t
x'g ;lsG5 . o; cWooggsf] glthf /fli6\o tyf cGt/fli6\o a}1flgs ;dfrf/x?df k|sflzt ul/g] 5 . of]
cg';Gwfg÷ cWoognfO{ cl3 a9fpgsf nflu sflGt afn c:ktfnsf] cg';Gwfg s]Gb| (Kanti
Children Hospital, Institutional Review Board) sf ;fy} g]kfn :jf:Yo cg';Gwfg kl/ifb
(Nepal Health Research Council, NHRC) af6 ;d]t cg'df]bg ul/ l:js[lt lnO{Psf] 5 .
olb tkfO{ of] cWoogdf ;xeflu x'g rfxg'x'G5 eg] tkfO{nfO{ afnaflnsfx?sf] Autism
Spectrum Disorder kQf nufpg k|f/lDes r/0fdf tof/ kfl/Psf] k|ZgfjnL eg{ lbO{g] 5 .
tkfO{n] rfxg'ePdf Pp6f cg';Gwfg ;xfosn] tkfO{nfO{ of] k|ZgfjnL eg{ ;xof]u k'of{pg] 5g
. oL cg';Gwfg ;xfos /fd|f] 1fg ePsf x'g]5g\ .
of] k|ZgfjnL ebf{ tkfO{sf] jf afnaflnsfx?sf] gfd uf]Ko /flvg]5 . tkfO{nfO{ of] k|ZgfjnL
eg{] s|ddf s'g} klg a]nfdf xh'/n] 5f]8g ;Sg'x'g]5 . o;n] tkfO{sf] k|fKt ug{] ;]jfdf s'g} c;/ jf
km/s kfg{] 5}g . olb xh'/nfO{ yk s'g} s'/fsf] hfgsfl/ lng'k/]df jf ;f]Wg dg ePdf
dnfO{ O{d]n u/]/ jf kmf]g u/]/ klg ;f]Wg ;Sg'x'g]5 .
cGhg s'df/ 9sfn
lk=Pr=8L :sn/ -lSnlgsn ;fO{sf]nf]lh:6_
lqe'jg ljZjlj2ofno
email:anjandhakal_1000@yahoo.com kmf]g g+ M (*$!*&)#!*
 ;";'lrt d+h'/Lgfdf -Consent Form _
gd:t], d]/f] gfd cGhg s'df/ 9sfn xf] . xfn d lqe'jg ljZjlj2ofnodf dgf]lj1fg ljifodf
lj2ofjfl/lbsf]nflu g]kfnL afnaflnsfx?df x'g] Autism Spectrum Disorder kQf nufpg] k|
ZgfjnL lgdf{0f ug{] cg';Gwfg ub{} 5' . o;sf] nflu k|f/lDes r/0fsf] k|ZgfjnL tof/ u/]sf] 5' .
tkfO{n] cfg" afnaflnsfdf ePsf jf pgLx?sf ;d:of jf Jojxf/x?dfx?df lrGx nufpg'kg{] x'G5
jf ;a} hfgsf/L lbg'kg{] x'G5 . of] k|ZgfjnL ebf{ tkfO{sf] jf afnaflnsfx?sf] gfd uf]Ko
/flvg]5 . tkfO{nfO{ of] k|ZgfjnL eg{] s|ddf s'g} klg a]nfdf xh'/n] 5f]8g ;Sg'x'g]5 . o;n]
tkfO{sf] k|fKt ug{] ;]jfdf s'g} c;/ jf km/s kfg{] 5}g . oL ;a} s'/f hflg a'lem :j]R5fn] tkfO{
/flh x'g'x'G5 eg] of] ;";'lrt d+~h'/Lgfdf ;lx 5fk ug{ ;Sg' x'g]5 .
afnaflnsfx?df b]vfkg{] Autism Spectrum Disorder ;d:of ;DalGw k|ZgfjnL k9]/ d}n]
d]/f] afns jf aflnsfdf ePsf] ;d:ofx?sf] af/]df lrGx nufpg] s'/fx?sf] af/]df ;a} hfgsfl/ klPsf]
5' . d}n] lbPsf] hfgsfl/sf] cfwf/df g]kfnL afnaflnsfx?df ePsf] Autism Spectrum Disorder
;d:of klxrfg ug{] k|ZgfjnL cg';Gwfg / lgdf{0fdf ;xof]u kÚb5 eGg] s'/fsf] klg hfgsf/L
kfPsf] 5' . of] kmf/d eg{] geg{] eGg] s'/f d]/f] JolQmut O{R5fdf e/ kg{] / d}n] rfx]sf]
v08df s'g} klg ;dodf of] k|s[ofaf6 cnu x'g ;Sg]s'/f dnfO{ a'emfO{Psf] 5, o; cg';Gwfgsf]
k|ltj]bg jf ;DalGwt k|sflzt s[ltx?df d]/f] JolQmut kl/ro v'Ng] s'g} kl/ro v'Ng] hfgsfl/x? k|
sflzt x'g] 5}g eGg] ;a} s'/f d}n] /fd|/L a'em]sf] 5' . oL ;a}s'/fx? :j]R5fn] /fhL
eO{ of] ;"';'lrt d~h'/Lgfdfdf ;lx5fk u/]sf] 5' .

;xefuLsf] ;xL jf NofKr] 5fk =====================================

;xefuLsf gfd,
y/=====================================================

ldltM@) ÷ ÷
 ;";'lrt d+h'/Lgfdf (Assent Form for Children)
gd:t], d]/f] gfd cGhg s'df/ 9sfn xf] . xfn d lqe'jg ljZjlj2ofnodf dgf]lj1fg ljifodf
lj2ofjfl/lbsf]nflu g]kfnL afnaflnsfx?df x'g] Autism Spectrum Disorder kQf nufpg] k|
ZgfjnL lgdf{0f ug{] cg';Gwfg ub{} 5' . o;sf] nflu k|f/lDes r/0fsf] k|ZgfjnL tof/ u/]sf] 5' .
tkfO{sf] clejfjsn] tkfO{df s] s:tf] ;d:of jf Jojxf/x? 5g eg]/ hfgsf/L lbg'kg{] x'G5 .
tkfO{nfO{ klg of] cg';Gwfgdf ;fg" k/LIffdf efu lng nufO{G5 . o;sf]nflu !) b]lv !%
ldg]6sf] ;do nfUg]5, o;df tkfO{n] zAbx? k9g] / /+usf] gfdx? k9g] sfd ug{'kb{5 . of] sfd
ubf{ st} s]lx a'emg' ePg eg] hlt a]nf klg ;f]Wg ;Sg' x'g]5 . of] sfd ul/;s]kl5 tkfO{sf] gfd
uf]Ko /flvg]5 . tkfO{nfO{ of] k|ZgfjnL eg{] s|ddf s'g} klg a]nfdf xh'/n] 5f]8g ;Sg'x'g]5 .
o;n] tkfO{sf] k|fKt ug{] ;]jfdf s'g} c;/ jf km/s kfg{] 5}g . oL ;a} s'/f hflg a'lem :j]R5fn]
tkfO{ /flh x'g'x'G5 eg] of] ;";'lrt d+~h'/Lgfdf ;lx 5fk ug{ ;Sg' x'g]5 .
afnaflnsfx?df b]vfkg{] Autism Spectrum Disorder ;d:of ;DalGw k|ZgfjnL k9]/] d]/f]
clejfjsn] d df Tof] ;d:ofx?sf] slQsf] nfu" x'G5 jf x'+b}g eg]/ lrGx nufpg] / d}n] o;
cg';Gwfgdf ;fg" k/LIffdf efulng] s'/fx?sf] - zAbx? k9g] / /+usf] gfdx? k9g] sfd_
af/]df ;a} hfgsfl/ kfPsf] 5' . of] kmf/d eg{] geg{] eGg] s'/f d]/f] O{R5fdf e/ kg{] / d}n]
rfx]sf] v08df s'g} klg ;dodf of] sfdaf6 cnu x'g ;Sg]s'/f dnfO{ a'emfO{Psf] 5 . oL
;a}s'/fx? :j]R5fn] /fhL eO{ of] ;"';'lrt d~h'/Lgfdfdf ;lx5fk u/]sf] 5' .

;xefuLsf] ;xL jf NofKr] 5fk =====================================

;xefuLsf gfd,
y/=====================================================

ldltM @) ÷ ÷
 Semi-structured Proforma:
Name (Optional) ……………………..
Date of Birth ……………………..
Age group (5-6), (7-9) (10-12)
Sex Male, Female Address ……………………..
School Government, Private
Education Grade-1, Grade-2, Grade-3, Grade-4, Grade-5, Grade-6, Grade-7
Performance in schoolwork Above-average, Average, Below average, Poor
Performance in household activities Above-average, Average, Below average, Poor
Place of residence Mountain, Kathmandu Valley, Terai, Hill
Informant Mother Father Grandparent Others
Mother’s education Illiterate Primary/intermediate education Secondary/university education
Mother’s occupation …………………………………….
Father’s education Illiterate Primary/intermediate education Secondary/university education
Father’s occupation ……………………………….
Substance abuse Yes, No (If yes, mention, Smoke, Alcohol, drugs, others ……)
Infections During pregnancy Yes, No (If yes, what type of infection was that...)
Duration of pregnancy (Before 28 weeks), (28-37weeks), (38-41weeks)
Birth Trauma/Injury Yes, No Birth weight (1-2kg), (2-3kg), (3-4kg), (4-5kg)
Does the child have any medical diagnoses? Yes, No (If yes, what is the Diagnosis…)
Is the child currently taking any medication? Yes, No (If yes, what is the name of the medicine?)
Do any family members have a diagnosis of mental illness? Yes No ((Describe the type of illness)
When did this symptom first appear? Before 7 years After 7 years
Has this symptom been present for six months or more? Yes No
Is this symptom appearing in Yes No
Observations Date of observation: ___ /___ /___
Time of observation: ___: ___
Observation setting………………………… Duration of observation: ___ hour’s ___ minutes
Name of observer: …………………………….
Chief Complaint Collection Form

Chief complaints in Informants’ verbatim: (Please try to list the presenting complaints in points-

Use patients or informants’ verbatim as far as possible in Nepali language)

 Request Letter for Expert Clinical Team

Dear Expert of mental health professionals,

Namaste! I am Anjan Kumar Dhakal, PhD scholar from Tribhuvan University, with a research project
entitles “DEVELOPMENT AND VALIDATION OF AN AUTISM SPECTRUM DISORDER
DIAGNOSTIC SCALE FOR CHILDREN.” As this is a very new task in our set up, your valuable
participation in this project is important. Here, your role will be helping the researcher in problem-
solving and decision-making process. Should be involved on multiple discussion to clarify any
misconception(s), evaluation of content adequacy, removing questions, adding questions, changing or
modifying the wording of the questions, designing the assessment scale, etc. according to your
knowledge and experience. So, I humbly request for your kind participation in this process.

Sincerely yours,
Anjan Kumar Dhakal (Clinical Psychologist)
Ph.D. Scholar, Tribhuwan University
Phone: 9841870318
Email: anjandhakal_1000@yahoo.com
 Kuppuswami Socio-Ecomonic Scale (SES)

Education Score
Professional or honors 7
Graduate or post graduate 6
Intermediate or post-high school 5
diploma
High School certificate 4
Middle School Certificate 3
Primary School certificate 2
Illiterate 1
Occupation
Professional 10
Semi-Professional 6
Clerical, Shop Owner, Farmer 5
Skilled Worker 4
Semi-Skilled Worker 3
Unskilled Worker 2
Unemployed 1
Family income per month in Rupees
≥ 42,876 12
21,438 to 42,875 10
16,078-21,437 6
10719-16,077 4
6,431-10,718 3
2,165-6,430 2
≤2164 1
 Parental Stress Scale
Tnsf egfOx?n] Pp6f afa' jf cfdf x'g'sf] gftfn] cg'ej ug]{ cg'e'tL / a'emfOnfO{ AofVof
ub{5g\ . x/]s a'+bfx? af/] tkfO{+sf s]6fs6Lx?;+u vf;u/L tkfO{+sf] ;DaGw s] s:tf] 5 ljrf/
ug'{xf];\ . tnsf a'+bfx? af/] s'g xb;DDf tkfO{+ ;xdtL jf ljdtL /fVg'x'G5, s[kof tf]lsPsf]
7fp+df c+s lbO{ cfºgf] ljrf/ hgfpg'xf];\ .
k|Zgx? !=Hofb} @= #= $= ;xdt %=
c;xdt c;xdt yfxf5} Hofb}
g ;xdt
! d]/f] cfºgf] cleefjssf] e"ldsfdf d v'zL 5' .
@ d]/f 5f]/f5f]/LsfnflucfjZos k/]sf] a]nfdf d}n] ;xof]u
gu/]sf rLhx? w]/} sd 5g\ jf 5+b} 5}gg\ .
# slxn] sfxL+ 5f]/f5f]/Lx?sf] :ofxf/ ;';f/ ubf{ d}n]
lbg'kg]{ eGbf w]/} ;do / zlQmvr{ e}/x]sf] x'G5 .
$ d}n] 5f]/f5f]/Lx?nfO{ oy]i6 x]/ljrf/ ug{ ;ls/x]sf] 5' ls
5}g eGg] s'/fn] slxn]sfxL+ dnfO{ lrlGtt t'Nofp+5 .
% d 5f]/f5f]/Lx?;+u Psbdglhs /x]sf] cg'ejub{5' .
^ 5f]/f5f]/Lx?;+u ;do latfp+bfdnfO{ cfgGb cfp+5 .
& d]/f 5f]/f5f]/Lx? d]/f] nflu :g]xsf] dxTjk"0f{ >f]tx?
x'g\ .
* 5f]/f5f]/L x'gfn] dnfO{ d]/f] eljio ;'lglZrt /
cfzfafbLnflu/x]sf] 5 .
( d]/f] hLjgdf ;a}eGbftgfjsf] d'Vo sf/s tTj g}
5f]/f5f]/Lx? x'g\ .
!) 5f]/f 5f]/L e}lbgfn] d]/f] hLjgdf ;dosf] bafa / nrstfsf]
cefjePsf] 5 .
!! 5f]/f 5f]/L e}lbgfn] dnfO{ cfly{s af]emylkPsf] 5.
! 5f]/f 5f]/Lsf sf/0fn] dnfO{ cGoe"ldsfx? lgjf{x
@ ug{ sl7gfO pTkGGfePsf] 5 .
!# d]/f 5f]/f5f]/Lsf] Aojxf/n] dnfO{ k|folrlGtt / b'lvt
t'Nofp5 .
!$ ca km]l/ dnfO{ aRRffhGdfpg kg]{ ePaRrfgagfpg]
lg0f{o ug]{ lyP+ .
!% afa'cfdfaGg' kbf{sf] lhDd]jf/Ln] d}n] ljrlntePsf]
dx;'; ul//fv]sf] 5' .
!^ 5f]/f5f]/L x'g'sf] dtna w]/} sd /f]hfOx? x'g' /
hLjgdfcfºgf] w]/} lgoGq0f gx'g' xf] .
!& afa'cfdfsf] e"ldsfdfd ;Gt'i6 5' .
!* s]6fs]6Lx? e}lbgfn] dnfO{ cfgGbbfoL dx;';
e}/fv]sf] 5 .
 Childhood Autism Rating Scale

Directions: Rate the behaviors relevant to each item of the scale. Add the 15 scores and use the scale at
the end.
I. Relating to People
1 No evident of difficulty or abnormality in relating to people - The child's behavior is appropriate for
his or her age. Some shyness, fussiness, or annoyance at being told what to do may be observed, but
not to an atypical degree.

1.5  (if between these points)

2 Mildly abnormal relationships - The child may avoid looking the adult in the eye, avoid the adult or
become fussy if interaction is forced, be excessively shy, not be as responsive to the adult as is typical,
or cling to parents somewhat more than most children of the same age.

2.5  (if between these points)

3 Moderately abnormal relationships - The child shows aloofness (seems unaware of adult) at times.
Persistent and forceful attempts are necessary to get the child's attention at times. Minimal contact is
initiated by the child.

3.5  (if between these points)

4 Severely abnormal relationships - The child is consistently aloof or unaware of what the adult is
doing. He or she almost never responds or initiates contact with the adult. Only the most persistent
attempts to get the child's attention have any effect.
II. Imitation
1 Appropriate imitation - The child can imitate sounds, words, and movements which are appropriate
for his or her skill level.

1.5  (if between these points)

2 Mildly abnormal imitation - The child imitates simple behaviors such as clapping or single verbal
sounds most of the time; occasionally, imitates only after prodding or after a delay.

2.5  (if between these points)

3 Moderately abnormal imitation - The child imitates only part of the time and requires a great deal of
persistence and help from the adult; frequently imitates only after a delay.

3.5  (if between these points)

4 Severely abnormal imitation - The child rarely or never imitates sounds, words, or movements even
with prodding and assistance from the adult.
III. Emotional response
1 Age-appropriate and situation-appropriate emotional responses - The child shows the appropriate
type and degree of emotional response as indicated by a change in facial expression, posture, and
manner.

1.5  (if between these points)

2 Mildly abnormal emotional responses - The child occasionally displays a somewhat inappropriate
type or degree of emotional reactions. Reactions are sometimes unrelated to the objects or events
surrounding them.

2.5  (if between these points)

3 Moderately abnormal emotional responses - The child shows definite signs of inappropriate type
and/or degree of emotional response. Reactions may be quite inhibited or excessive and unrelated to
the situation; may grimace, laugh, or become rigid even though no apparent emotion-producing
objects or events are present.

3.5  (if between these points)

4 Severely abnormal emotional responses - Responses are seldom appropriate to the situation; once the
child gets in a certain mood, it is very difficult to change the mood. Conversely, the child may show
wildly different emotions when nothing has changed.
IV. Body Use
1 Age appropriate body use - The child moves with the same ease, agility, and coordination of a
normal child of the same age.

1.5  (if between these points)

2 Mildly abnormal body use - Some minor peculiarities may be present, such as clumsiness, repetitive
movements, poor coordination, or the rare appearance of more unusual movements.

2.5  (if between these points)

3 Moderately abnormal body use - Behaviors that are clearly strange or unusual for a child of this age
may include strange finger movements, peculiar finger or body posturing, staring or picking at the
body, self-directed aggression, rocking, spinning, finger-wiggling, or toe-walking.

3.5  (if between these points)

4 Severely abnormal body use - Intense or frequent movements of the type listed above are signs of
severely abnormal body use. These behaviors may persist despite attempts to discourage them or
involve the child in other activities.
V. Object Use
1 Appropriate use of, and interest in, toys and other objects - The child shows normal interest in toys
and other objects appropriate for his or her skill level and uses these toys in an appropriate manner.

1.5  (if between these points)

2 Mildly inappropriate interest in, or use of, toys and other objects - The child may show atypical
interest in a toy or play with it in an inappropriate childish way (e.g., banging or sucking on the toy).

2.5  (if between these points)

3 Moderately inappropriate interest in, or use of, toys and other objects - The child may show little
interest in toys or other objects, or may be preoccupied with using an object or toy in some strange
way. He or she may focus on some insignificant part of a toy, become fascinated with light reflecting
off the object, repetitively move some part of the object, or play with one object exclusively.

3.5  (if between these points)

4 Severely inappropriate interest in, or use of, toys or other objects - The child may engage in the same
behaviors as above, with greater frequency and intensity. The child is difficult to distract when
engaged in these inappropriate activities.
VI. Adaptation to Change
1 Age appropriate response to change - While the child may notice or comment on changes in routine,
he or she accepts these changes without undue distress.
1.5  (if between these points)

2 Mildly abnormal adaptation to change - When an adult tries to change tasks the child may continue
the same activity or use the same materials. 
2.5 (if between these points)

3 Moderately abnormal adaptation to change - The child actively resists changes in routine, tries to
continue the old activity, and is difficult to distract. He or she may become angry and unhappy when
an established routing is altered.

3.5  (if between these points)

4 Severely abnormal adaptation to change - The child shows severe reactions to change. If a change is
forced, he or she may become extremely angry or uncooperative and respond with tantrums.
VII. Visual Response
1 Age appropriate visual response - The child's visual behavior is normal and appropriate for that age.
Vision is used together with other senses as a way o explore a new object.

1.5  (if between these points)

2 Mildly abnormal visual response - The child much be occasionally reminded to look at objects. The
child may be more interested in looking at mirrors or lighting than peers, may occasionally stare off
into space, or may also avoid looking people in the eye.

2.5  (if between these points)

3 Moderately abnormal visual response - The child must be reminded frequently to look at what he or
she is doing. He or she may stare into space, avoid looking people in the eye, look at objects from an
unusual angle, or hold objects very close to the eyes.

3.5  (if between these points)

4 Severely abnormal visual response - The child consistently avoids looking at people or certain
objects and may show extreme forms of other visual peculiarities described above.
VIII. Listening Response
1 Age appropriate listening response - The child's listening behavior is normal and appropriate for age.
Listening is used together with other senses.
1.5  (if between these points)

2 Mildly abnormal listening response - There may be some lack of response, or mild overreaction to
certain sounds. Responses to sounds may be delayed, and sounds may need repetition to catch the
child's attention. The child may be distracted by extraneous sounds.

2.5  (if between these points)

3 Moderately abnormal listening response - The child's responses to sounds vary; often ignores a
sound the first few times it is made; may be startled or cover ears when hearing some everyday
sounds.

3.5  (if between these points)

4 Severely abnormal listening response - The child overreacts and/or under reacts to sounds to an
extremely marked degree, regardless of the type of sound.
IX. Taste, Smell, and Touch Response and Use
1 Normal use of, and response to, taste, smell, and touch - The child explores new objects in an age
appropriate manner, generally by feeling and looking. Taste or smell may be used when appropriate.
When reacting to minor, everyday pain, the child expresses discomfort but does not overreact.

1.5  (if between these points)

2 Mildly abnormal use of, and response to, taste, smell, and touch - The child may persist in putting
objects in his or her mouth; may smell or taste inedible objects; may ignore or overreact to mild pain
that a normal child would express as discomfort.

2.5  (if between these points)

3 Moderately abnormal use of, and response to, taste, smell, and touch - The child may be moderately
preoccupied with touching, smelling, or tasting objects or people. The child may either react too much
or too little.

3.5  (if between these points)

4 Severely abnormal use of, and response to, taste, smell, and touch - The child is preoccupied with
smelling, tasting, or feeling objects more for the sensation than for normal exploration or use of the
objects. The child may completely ignore pain or react very strongly to slight discomfort.
X. Fear or Nervousness
1 Normal fear or nervousness - The child's behavior is appropriate both to the situation and to his or
her age.

1.5  (if between these points)

2 Mildly abnormal fear or nervousness - The child occasionally shows too much of too little fear or
nervousness compared to the reaction of a normal child of the same age in a similar situation.

2.5  (if between these points)

3 Moderately abnormal fear or nervousness - The child shows either quite a bit more or quite a bit less
fear than is typical even for a younger child in a similar situation.

3.5  (if between these points)

4 Severely abnormal fear or nervousness - Fears persist even after repeated experience with harmless
events or objects. It is extremely difficult to calm or comfort the child. The child may, conversely, fail
to show appropriate regard for hazards which other children of the same age avoid.
XI. Verbal Communication
1 Normal verbal communication, age and situation appropriate.

1.5  (if between these points)

2 Mildly abnormal verbal communication - Speech shows overall retardation. Most speech is
meaningful; however, some echolalia or pronoun reversal may occur. Some peculiar words or jargon
may be used occasionally.

2.5  (if between these points)

3 Moderately abnormal verbal communication - Speech may be absent. When present, verbal
communication may be a mixture of some meaningful speech and some peculiar speech such as
jargon, echolalia, or pronoun reversal.  Peculiarities in meaningful speech include excessive
questioning or preoccupation with particular topics.

3.5  (if between these points)

4 Severely abnormal verbal communication - Meaningful speech is not used. The child may make
infantile squeals, weird or animal-like sounds, complex noises approximating speech, or may show
persistent, bizarre use of some recognizable words or phrases.
XII. Nonverbal Communication
1 Normal use of nonverbal communication, age and situation appropriate.

1.5  (if between these points)

2 Mildly abnormal use of nonverbal communication - Immature use of nonverbal communication; may
only point vaguely, or reach for what he or she wants, in situations where same-age child may point or
gesture more specifically to indicate what he or she wants.

2.5  (if between these points)

3 Moderately abnormal use of nonverbal communication - The child is generally unable to express
needs or desires nonverbally, and cannot understand the nonverbal communication of others.
3.5  (if between these points)

4 Severely abnormal use of nonverbal communication - The child only uses bizarre or peculiar
gestures which have no apparent meaning, and shows no awareness of the meanings associated with
the gestures or facial expressions of others.
XIII. Activity Level
1 Normal activity level for age and circumstances - The child is neither more active nor less active
than a normal child of the same age in a similar situation.

1.5  (if between these points)

2 Mildly abnormal activity level - The child may either be mildly restless or somewhat "lazy" and
slow moving at times. The child's activity level interferes only slightly with his or her performance.

2.5  (if between these points)

3 Moderately abnormal activity level - The child may be quite active and difficult to restrain. He or
she may have boundless energy and may not go to sleep readily at night. Conversely, the child may be
quite lethargic, and need a great deal of prodding to get him or her to move about.

3.5  (if between these points)

4 Severely abnormal activity level - The child exhibits extremes of activity or inactivity and may even
shift from one extreme to the other.
XIV. Level and Consistency of Intellectual Response
1 Intelligence is normal and reasonably consistent across various areas - The child is as intelligent as
typical children of the same age and does not have any unusual intellectual skills or problems.

1.5  (if between these points)

2 Mildly abnormal intellectual functioning - The child is not as smart as typical children of the same
age; skills appear fairly retarded across all areas.

2.5  (if between these points)

3 Moderately abnormal intellectual functioning - In general, the child is not as smart as typical
children of the same age; however, the child may function nearly normally in one or more intellectual
areas.

3.5  (if between these points)

4 Severely abnormal intellectual functioning - While the child is not as smart as the typical child of his
age, he or she may function even better than the normal child of the same age in one or more areas.
XV. General Impressions
1 No autism - The child shows none of the symptom's characteristic of autism.
1.5  (if between these points)
2 Mild autism - The child shows only a few symptoms or only a mild degree of autism.
2.5  (if between these points)
3 Moderate autism - The child shows a number of symptoms or a moderate degree of autism.

3.5  (if between these points)

4 Severe autism - The child shows many symptoms or an extreme degree of autism.
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