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Autism Spectrum Disorders are described as a set of diverse and chronic neurological and developmental disorders, the hallmark features of the disease being impaired socialization and communication, restricted interests and repetitive patterns of behavior(1). The etiology of the disease remains unclear to date, however, many studies concluded that it occurs due to a complex interplay between a multitude of factors, both genetic and environmental occurring very early in infancy and possibly in utero. Autism is frequently missed on diagnosis and it is only recently that interest about autism and research material has started appearing, mostly from the developed world. (2). We were interested in the reasons for missed diagnosis and whether inadequate knowledge amongst primary school teachers could be the reason.
With increasing knowledge regarding autism, recent epidemiological studies from the developed world have reported the prevalence to have increased substantially, from 4 to 5 per 10,000 in 1960s to approximately 1-2% today (3). Data, by and large, from the developing countries is not sufficient to give an estimate of the prevalence of the disease in South Asian developing countries, including Pakistan. No epidemiological study has been conducted in any comparable region of the world to provide a reasonable estimate of the incidence as well. A recent study in 2008 from Lahore, the second largest city in Pakistan, gave an estimate that around 6.3% children in special schools across the city fulfilled the criteria for being autistic(4).
There is, to date, no cure for autism, but ASD can bene¬t from interventions that may improve developmental directions. Many studies showed that early intervention can improve long term outcome of autistic children. A recent study of 2012, from China concluded that ASD children who are diagnosed between ages 3-6 years can improve their communication and social skills (3). However, there is a time lag between parental recognition of autistic symptoms to the time of diagnosis which is relatively long, leading to delayed diagnosis and treatment. One of the possible factors being that, in Pakistan, the field of child psychiatry is relatively new, and infrastructure related to it is still in a developmental phase. Due to a lack of a concrete and well established referral system, there is a delay in seeking help from psychiatric centers for children (1).
The diagnosis and treatment of Autism occurs in multiple settings. It is very important for the parents and other caregivers, including the teachers, to obtain adequate knowledge and awareness about ASD, for earlier intervention, appropriate education planning, and the arrangement of family support services. One of the primary shortfalls of autism is that abnormal behavior occurs in episodes which might be missed in a short clinical observation; it is crucial that parents and teachers of such children are informed to pick up on repetitive behavior and report it. A study, conducted in Pakistan in 2012, proposed a prototype model of cell phone based capture system that would help parents in recording samples of the child's behavior and bring it to clinics. Such diagnostic strategies can further be extended to include teachers and other care givers as well.
The purpose of this study is to assess knowledge and perceptions of primary school teachers about Autism Spectrum Disorders (ASD) in Karachi. Since teachers form an integral part of the initial social circle of a child, their knowledge about the subject is crucial to early identification of autistic children which is the key to their better developmental outcome. Furthermore teachers also have a fundamental role in support services and educational progress of autistic children; therefore their perceptions about ASD are critical for better results. Since several developing countries in South Asia follow a similar educational system and have similar infrastructure for health research, we believe our study findings will have a widespread impact on the newer diagnostic strategies by targeting the care givers of autistic children, new recommendations regarding increasing awareness and sensitization of teachers about the disorder may help in easier main streaming of autistic children and lesser dropout rates. Therefore, although autism is a rare disorder, the implications of this study will be far reaching.
In this study we aim to:
Assess the knowledge and perceptions about autism amongst primary school teachers of Karachi.
Association between level of education and knowledge regarding autism.
Association between school teaching experience in years and knowledge about autism.
Highlight misconceptions regarding autism.
Section 2: Methodology
2.1: Study design: Cross-sectional, descriptive.
2.2: Study setting:
The study will be conducted in the primary schools of Karachi. There are a total of 3,609 schools in the city out of which 2,530 are primary schools, according to the Sindh Education Management Information System (SEMIS) census 2011. The average student-teacher ratio is 22 in primary schools across the city, double than that in developing countries, according to UNESCO's statistics for 2000. This study will be conducted in both public and private institutions in a defined geographical area in Karachi as per convinience. The following schools will be approached:
Mrs. Ahmed's Montessori and primary school.
New Montina Primary school.
Karachi Folks High school.
St. Rita's Primary school.
Beaconhouse school System Primary 1 branch.
Green Island Foundation school.
Gulistan Shah Abdul Latif Primary school.
Govt girls primary and secondary school, Mehmoodabad.
Govt girls secondary and Primary school, DHA.
Aga Khan Primary school Karachi.
2.3: Study subjects:
These comprise of teachers in primary schools, teaching from Kindergarten till grade 5.
These include teachers who teach Kindergarten to grade 5, in the selected primary schools, irrespective of their qualification status and who gave consent for participation in the study.
Teachers of grades above primary level, or those who teach in special schools, as well as the teachers who refuse to give consent.
2.4: Sample size:
Since the number of primary school teachers in Karachi is unknown, the sample size was calculated as follows:
Where, Î±= 5%, p=0.5 ( as the prevalence of knowledge about autism in this population is unknown) and Î²=0.12. This results in a sample size of 67. Rounding up we will be taking a sample size of 100.
2.5: Sampling methodology:
We will use convenient sampling. Since our calculated sample size is 100, we will select schools in accordance with our convenience and from each school select teachers. The selection of teachers will be based on availability of the teachers, at the time of interview.
Section 3: Data collection:
The primary schools of Karachi will be approached by the investigators. Permission to conduct this study will be obtained from the Principals / Administrators. The study subjects will be selected with the permission of the schools' administration. After signing an informed consent form, they will be asked to fill out our questionnaire. All subjects will be briefed about confidentiality, anonymity and the choice to refuse. During the filling of the questionnaire the investigators will help the respondents, if needed; but they will in no way influence the answers. The respondents will have the right to opt out of filling the questionnaire, if they feel the need to do so.
Section 4: Study Questionnaire:
The data collection tool that will be used is a self-administered questionnaires designed after detailed literature search on perception and knowledge of Autism. This will be both in English as well as Urdu language to facilitate the study subjects in understanding the questions. These will cover the definition, assessment, treatment as well as perceived competence in dealing with autistic children.
A pre-test will be conducted on 10% of sample size to assess the feasibility and viability of the questionnaire and to make relevant changes to it accordingly. This will be done at a school selected according to our convenience (a school nearby our institute, the Aga Khan University). The results of the pre-test will be discarded and will not be included in the total calculated sample.
Development of the questionnaire (appendix A) was based on a combination of validated scales used in previous studies, assessing knowledge about autism in various populations depending upon our research objectives. The questionnaire would comprise of three main sections: 1) Demographics, 2) Ten behavioral characteristics as described in DSM IV TR diagnostic criteria [i] and 3) twenty two questions about beliefs of the subjects regarding social, emotional, cognitive, treatment and prognostic aspects of Autism [ii] .
The purpose of the questionnaire is to assess the baseline knowledge of the standardized diagnostic criteria and the beliefs about the disorder amongst primary school teachers in Karachi. The information obtained will be used to identify variables that result in discrepancy amongst teachers regarding knowledge of autism and will also help to identify misconceptions that are present amongst primary school teachers.
The questionnaire was translated into Urdu (appendix B) and then translated back to English by a third party to ensure validity of the translation.
Section 5: Operational definitions:
Knowledge: According to Merriam-Webster, knowledge is a set of understandings. It is also one's capacity for imagining, one's way of perceiving.
In this study knowledge of primary school teachers regarding Autism will be assessed on the basis of questions asked about the definition of autism, its symptoms and the social and learning limitations these children have, and the treatment they require.
Perception: Perception is defined as the ability to see, hear, or become aware of something through the senses
In this study, the perception of primary school teachers regarding Autism will be assessed through a set of questions in the questionnaire based on their perceived competence in dealing with autistic children.
Section 6: Ethical consideration:
Ethical approval of the study would be taken from the Ethical Review Committee (ERC) of Aga Khan University, Karachi. The Questionnaires will be handed out to teachers after a verbal as well as a written consent has been obtained.
Respondents may feel free to agree or refuse to answer the whole questionnaire. Anonymous self-administered questionnaires will be used. Information collected will be kept confidential and will not be disclosed to any other research participant except the principal investigator. The results will be published once the article gets accepted in an indexed journal.
Section 7: Data Management
The data will be entered into EpiData 3.1 by two investigators separately and then compared to ensure validity of the results.
8: Data analysis:
We will use EpiData v3.1 (EpiData Association, Odense, Denmark), for data entry and SPSS v.20 for analyzing the entered information. Descriptive analysis will be done to calculate the overall prevalence and confidence interval of the sample.
9: Analysis plan:
Descriptive analysis of all the variables will be carried out. So mean and standard deviation of the quantitative variables like age, number of years teaching etc, will be done. For categorical variables like level of education, the knowledge about symptoms of Autism, proportions will be calculated.