a preliminary study: awareness, … binti md shamsudin faculty of management and muamalah kolej...

Proceeding of the Social Sciences Research ICSSR 2014 (e-ISBN 978-967-11768-7-0). 9-10 June 2014, Kota Kinabalu, Sabah, MALAYSIA. Organized by http://WorldConferences.net 322

A PRELIMINARY STUDY: AWARENESS, KNOWLEDGE AND ATTITUDE OF PEOPLE TOWARDS CHILDREN WITH AUTISM

Suhaily binti Md Shamsudin

Faculty of Management and Muamalah Kolej Universiti Islam Antarabangsa Selangor

[email protected]

Siti Syuhada binti Abdul Rahman Faculty of Management and Muamalah

Kolej Universiti Islam Antarabangsa Selangor [email protected]

ABSTRACT

This paper aimed to provide a preliminary insight into the awareness towards children with autism among general people in Malaysia. Children with autism normally are difficult to distinguish from the typical developing children. Unfortunately, the public is not very educated about autism. Many of them perceived these children as spoiled children. While parents of these children are seen as parents who could not control their kids, some are considered as immature parents with misbehaving children. Kind of these scenarios happen especially in the public places such as shopping mall. The lack of public awareness is another hardship on the families with special children. 250 copies of structured questionnaires were distributed randomly to public in Klang Valley area. This study found that although there are many Malaysian people familiar with the term Autism but still many of them do not understand the characteristics of children with autism. The outcome of this study is expected to increase public awareness on autism. When more people have a better understanding about autism, it is hoped that people may not only feel sympathy towards autistic children but also feel responsible to foster relationships among humans and stretched out help with full sincerity. Field of Research: Public awareness, children with autism, Malaysia ---------------------------------------------------------------------------------------------------------------------------------- 1. Introduction People who live in this world usually goes through alternating periods of happiness and sadness, strengths and weaknesses, wealth and poverty, health and sickness and others. Allah s.w.t. said, “Certainly, we shall test you with something of fear and hunger, some loss in goods, lives and fruits but give glad tidings to those who patiently persevere. Those who, when misfortune strikes them, say: ‘Truly to Allah we belong, and truly to Him shall we return. It is those who will be

awarded blessings and mercy from their Lord and it is those who are rightly guided.” (Surah al-Baqarah: 155-157)

The prophet Muhammad (PBUH) said: "No fatigue, illness, anxiety, sorrow, harm or sadness afflicts

any Muslim, even to the extent of a thorn pricking him, without Allah wiping out his sins by it." (Sahih al-Bukhari and Sahih Muslim)

Autism that is lifelong developmental disabilities represents a serious challenge, not only to the individuals diagnosed with autism, but also to the family. The difficulty faced by this family is to handle the individual with autism who is often accompanied by extremely disruptive antisocial

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behavior. Besides having problems with language, autism are also frequently associated with tantrums, self destructive acts and other forms of inappropriate public behavior (Dominick et. al, 2007). In Malaysia, person with autism are always referred to the National Autism Society of Malaysia (NASOM) by government hospitals and private practitioners. NASOM is a non-profit charitable organization, non-governmental welfare organization that provides education, assistance, care, and protection for people with autism and their families. NASOM suggests that although awareness among Malaysian people has increased but still much more research is needed to ensure people get a better understanding about autism. With the International Seminar on Autism 2014 with the theme ' Autism is not a tragedy, ignorance is ' which recently has been held in Putra Jaya, shows an increase to Malaysia efforts to improve awareness about autism. This seminar aimed to raise awareness that was believed can change the scenario of ignorance about autism and make a difference towards a better life for autistic individuals and their families. This paper aimed to provide a preliminary insight into the awareness among Malaysian people towards children with autism. The findings can then be used to carry out further research to improve the understanding of the general public about the real nature of autism to change the bad impression towards this Autism Spectrum Disorders (ASDs). Study on public awareness towards children with autism is essential in decreasing discrimination and stigmatization and to create a sense of responsibility among citizens on autistic children and families. 2. Problem Statement In Malaysia, autism, as a development brain disorder in children, is still not getting appropriate attention. There are lots of gaps in Malaysian understanding of autism. The public seems to lack good information or experience with people with ASD. It is reported in (Jasni, 2011) that Malaysian lack knowledge and exposure on autism. A lack of knowledge can lead to the negative attitudes (Neni et. al, 2010) towards autistic individuals and families. Autism can present in all races, social status, religions and classes of people. It can occur in any of the child and family. To date, it is still reported that there are no know medical cure and researches are yet to identify the real cause (s) of autism. Until now, many have reported that the number of children with ASDs have increased during the past decade. The number of autism cases reported has also increased since the 1990s. Not all children with autism are mentally incapable; some of them could be smarter than normal children. However, in many cases, autistic children tend to have behavioral problems. Some of the characteristics among the autistic children can present severe problems for parents. According to Yeo et. al. (2012), the job of parenting autistic children is not a career of choice of anyone. The emotions, behaviors, thoughts and other of parents, especially mothers can be affected for anything happens to their autistic children. Children with autism spectrum disorders (ASDs) may experience high levels of stigmatization in society. Stigma may affect not only autistic individuals but also the family as well. Such families often find that public reaction to them is stereotypical and negative (Gray, 1993). Studies conducted by David E. Gray (2002) showed that most parents experienced stigma, where particularly mothers encountered avoidance, hostile staring and rude comments from other people. Most of the parents did experience felt stigma. Felt stigma is most commonly experienced in public situations such as social outings and shopping. Parents' competences are often judged whenever



their children show inappropriate behavior in public. Sometimes, parents are experienced enacted stigma especially in public areas where the child has been behaving in a socially inappropriate manner and was obviously hostile staring by others. Parents of aggressive children who like to disturb others and thus trigger a larger reaction were much more likely to experience enacted stigma than parents who have more passive children. These situations can generate extreme feelings of embarrassment for parents. Very few of the children with autism can have a normal life expectancy, they mostly cannot survive alone. Aware of the high pressure and distress levels of the parents or caregivers of these children, the need to help reduce their stress is important. Families with autistic children always have a problem particularly in coordinating care and receive support from others. Therefore, efforts to enhance the understanding of autism should be emphasized not only to parents or caregivers of autistic children but also to anyone in this world. Due to the behavioral problems created by children with autism and very little research has been completed on the attitude of adults toward individuals particularly children with autism, therefore, this study seeks to assess public awareness towards children with autism in Malaysia and it is the beginning for other researches focuses on other people not the parents, family or caregivers of autistic children. 3. Objectives of the Study Public statements given by autistic individuals or their families are so important today to educate community about autism (Danielle, 2012). Though, there are many of autism studies were conducted by various researchers, but most have focused only on children with autism and families of the autistic children. Indeed, there is a need to increase awareness and understanding of children with autism to one other than the parents, family or caregivers. This study is conducted to provide a preliminary insight into the awareness among general people towards children with autism in Malaysia. This preliminary study also will explore the relevant issues regarding the knowledge and attitude of people towards children with autism through literatures. Findings from this preliminary study are significant to some parties in Malaysia including the health care team, NGOs, media, government, professionals, educators and parents as well as the public. By improving more awareness, it is expected that the public will no longer have the bad impression towards the autistic individuals and families. With this awareness, there is also hope that the public will not only feel sympathy for autistic children but also feel responsible to foster relationships among human and stretched out help with sincerely. As stated by the Director of the Early Autism Project (EAP) Malaysia, Jochebed Isaacs, the more people who know about autism, will increase the level of tolerance of people toward children with autism, and families of autistic individual will get more support from the public (The Star Online, 2012). In addition, a better understanding of people about autism can contribute to reduce stigma experienced by parents of children with autism. 4. Review of Literature The autism syndrome has experienced drastic evolution since its first identification. The word of autism was first produced by Eugen Bleuler, the Swiss psychiatrist to define the symptoms of schizophrenia in 1910. Then, a doctor from Johns Hopkins University, Leo Kanner, first who described autism as developmental disease and it is present from birth. From its original definition in the early 20th century, the understanding of the general public about autism spectrum disorders



(ASDs) remains mystery (Danielle, 2012). Danielle (2012) suggested that although the public awareness has increased in recent years, there is still much to be done to improve the general social understanding of ASDs. Increased understanding promotes the transition for people to see those with autism from mentally ill or dangerous to special-needs individuals. Autism is believed was caused by a neurological disorder that affects the normal functioning of the brain, impacting the development in the areas of social interaction and communication skills. Autism can affect any child and family (See, 2012). Individuals with autism may experience learning disabilities, language problems, issues with motor skills, abnormal physical development or functions, inappropriate emotional reactions, and hypersensitivity to sensory stimuli. But there are still cases in which autistic individuals can develop great skills in specific areas (Danielle, 2012). Study conducted by See (2012) identified that children with autism often are associated with behavioral problems such as becoming restless and fidgety, exhibiting tendencies to touch and hit people; being noisy (shouting or screaming); temper tantrums, being inattentive; non-compliance; spaced out and body stiff. According to See (2011), these behavioral patterns might be extreme and highly apparent or more subtle. It was reported that each of the behaviors associated with ASDs can range from mild to severe. ASDs are viewed as a spectrum, with varying degrees of severity and levels of functioning. A lot of research and media highlighted the increase in the rate of autism diagnoses. Even there is no official number of children with autism in Malaysia but according to See (2012), it is believed that in Malaysia, the number of children who have some form of autism spectrum disorder can be more than 60,000 children. The negative implications and social stigmatization associated with autism persist in today’s society because of lack of education concerning the syndrome throughout the community at large. 4.1 Knowledge and Attitude towards Children with Autism from Literatures In the past, individuals with disabilities such as autism have faced discrimination, isolation and segregation. However, today, the national policy emphasizes that the individuals with disabilities should be treated equally by giving them access to education, employment, and community living. Positive attitudes towards individuals with disabilities are critical for this person to succeed in all aspects of society. Public attitudes have the potential to encourage interactions between individuals with disabilities and the general public (T. Ryan, 2013). A study conducted by Durand-Zaleski et. al. (2012) found that although 95% of respondents recognized the name of autism, schizophrenia and bipolar disorders, however, less than 70% can report specific characteristics. This study also indicated that most public attitudes and behaviours towards different disorders appear to be based on assumptions rather than knowledge or evidence. The study highlighted that the stigmatization of individuals with mental disorders can be changed with certain alterations in mental health literacy (Durand-Zaleski et al, 2012). There are several factors that affect the attitudes of people towards individuals with disabilities. Among the factors highlighted by Cathryn T.Ryan (2013) in his study is the perceived causality of the disability, gender, age, education and social desirability. Source of information is also important to offer more accurate information about autism. It was reported that most people in Britain think that individuals with mental illness deserve sympathy, and more than 80% of British people think that society should be more tolerant to them.



However, not all the attitudes towards mental illnesses are so positive. It is common that the mental illness of any kind such as autism will have certain stigma (Edyvean, 2008). Like autism, since the autistic children look like ordinary people, therefore, people who could not understand them often see these children as selfish, slow and odd (Jasni et. al, 2011). Study conducted by Jasni (2011) discovered that there is a big lack of awareness about autism among people in Malaysia and something needs to be done to raise this awareness. 5. Methodology

This preliminary study used the quantitative approach in assessing the data. The descriptive study was carried out by distributing 250 questionnaires to people from selected public places included shopping complexes in Klang Valley. From 250 sets of questionnaires, only 242 were returned in all fully answered. The data was collected through random sampling. The study was recently conducted at some public locations included commercial areas near Bandar Seri Putra, Bukit Mahkota and Putra Jaya as well which are located in Selangor. The participants consist of the staffs or owners of the shops and customers who came to visit the selected public places. To ensure that the survey instrument is brief, user-friendly and acceptable to a sample in this study, the items are limited to only 12 questions and it is written in both Bahasa Malaysia and English languages. The questionnaire in this study consists of 2 parts: part A is about the demographic profile of respondents and part B contains questions to assess the public awareness towards children with autism. This questionnaire is used to collect data. The data is collected either through face to face interaction or by distributing to people in certain places. SPSS version 17 is used for primary data analysis. 6. Analysis and Interpretation

DEMOGRAPHIC FREQUENCY (N=242) PERCENTANGE

Male 102 42.1 Female 140 57.9

Age below 21 Years 40 16.5 Age 21 – 30 82 33.9 Age 31 – 40 65 26.9 Age 41 – 50 38 15.7

Age Over 50 Years 17 7.0

Single Married

98 140

40.5 57.9

Others 4 1.7

PMR/SRP SPM/STPM

9 92

3.7 38.0

Certificate/Diploma 45 18.6 Degree 46 19.0 Masters 48 19.8 Others 2 .8

Academic Staff 30 12.4 Managerial Staff 51 21.1

Non-Managerial Staff 60 24.8 Self-Employed 21 8.7

Others 80 33.1

Muslim Non-Muslim

222 20

91.7 8.3



Malay Chinese Indian Others

220 17 4 1

90.9 7.0 1.7 .4

Table 1.0: Profile of Respondents From Table 1.0, it shows the demographic profiles of all the 242 respondents. Respondents between 18-60 age groups have been chosen and most of them are at the range age of 21-30. Out of 242 respondents, 140 are women. Most of the respondents are Malay, Muslim and married. The degree holders (46) mostly worked as a managerial staff, Master's degree holders (48) mostly worked as an academician and the others mostly worked as a non-managerial staff (60).

Table 2.0: Socio-demographic characteristics of sample know about the term autism.

Socio-demographic variable Frequency (n=242)

Yes No Not Sure

Gender: 69

107

28 24

5 9

1. Male 2. Female

Age: 21 60 52 31 12

12 17 12 7 4

7 5 1 0 1

1. Below 21 2. 21-30 3. 31-40 4. 41-50 5. Above 50

Marital status: 1. Single

2. Married 3. Others

59 114

3

27 24 1

12 2 0

Academic: 1. PMR

2. SPM/STPM 3. Certificate/Diploma 4. Degree 5. Masters 6. Others

3 51 31 43 47 1

6 30 11 3 1 1

0 11 3 0 0 0

Occupation: 1. Academician

2. Managerial 3. Non-managerial 4. Self-employed 5. Others

29 45 36 9

57

1 6

22 6

17

0 0 2 6 6

Religion: 1. Muslim

2. Non-Muslim 171

5 40 12

11 3

Race: 1. Malay

2. Chinese 3. Indian 4. Others

169 4 2 1

40 10 2 0

11 3 0 0



Table 2.0 shows the breakdown of the respondents characteristics based on their answers to the question of “Have you heard about autism?” Overall, it shows that 76.7% of the respondents have heard about autism, while 21.5% had never heard the term autism and 5.8% are not sure of the word autism.

SOURCE FREQUENCY PERCENTAGE

TV 69 28.1

Radio 15 6.2

Friends 34 14.0

News paper 41 16.9

Conferences 6 2.5

Others 26 10.7

Do not know 51 21.1

Table 3.0: The Main Source of Information Chose by Respondents

Figure 1.0: Source of Information

Table 3.0 and Figure 1.0 show the main source of information about autism that is chosen by the respondent. It came out to be television (TV) (28.5%) followed by newspaper (16.9%) and the lowest was conference (2.5%). Respondents who use internet as their main source chose others (10.7%) as the answer. Meanwhile out of 242 respondents, 21.1% answered do not know to represent respondents who do not know anything about autism.



Regarding the question “Can you better recognize the children with autism?”, only 25.2% replied as “yes”, whereas the other respondents replied “no” (34.3%) and “do not sure” (40.5%) as their answer.

Figure 2.0: Respondents recognize the children with autism

In response to the question “Do you know about the characteristics of children with autism?”, only 33.1% replied “yes”, 28.1% replied “no” and the other 38.8% are not sure about the children with autism characteristics.

Figure 3.0: Awareness about the characteristics of children with autism

To determine whether Malaysian people better able to recognize the children with autism, it is found in Figure 2.0, only 25.2% of respondents replied “yes”. In the meantime, figure 3.0 indicates that only 33.1% of the respondents know the characteristics of children with autism. Others are not aware of the physical characteristics of children with autism. It is interesting to note that the total responses to the not sure answer are quite high for questions to represent whether or not the public know the physical appearance and characteristics of the autistic children. 7. Discussion and Suggestions

This preliminary study provides an insight into the current scenario that presents the current data of public awareness among people towards children with autism in Malaysia. It was found in this study that, although 76.7% of the respondents reported familiarity with the word of autism (76.7%) but not all can describe the physical appearance of the autistic children. In fact, more people do not really know the specific characteristics of children with autism. While giving answers to the questions, it was found that some of them think autism is similar to hyperactive children. Meanwhile, this study also discovered that there are still people out there who never heard the word autism (21.5%). Referring to the study done by Durand-Zaleski et al (2012) in



France, this study also discovered that awareness of autism by name is not necessarily accompanied by knowledge about the characteristics of particular disorders. This present study indicated that only 25.2% of respondents are able to recognize children with autism and only 33.1% know the characteristics of autistic children. A study conducted by Jasni (2011) also found that majority of the respondents do not understand about autism in general and how to recognize them. It is suggested that researchers need to address the lack of awareness among Malaysian people and this problem could be solved by using ICT or multimedia learning (Jasni, 2011). It also found that the result of this preliminary study is almost similar to the data for the previous study done in Pakistan (Nahida et al, 2011), even the study was to determine the awareness of people towards organ donation among adult population but here it still discovered that the major source of information comes from television. While in this study it showed that 28% of respondents obtained information from TV, more than 16% obtained from newspapers, followed by friends (14%). The result also shows that many people do not prefer to choose conference as their main source for information. TV as the main source of information to the public, therefore, can be used to aggressively educate the public about the autistic child and their characteristics. Information about autism on TV should contain the right information and appropriate ways to convey messages must be used to attract more people to view and understand autism. People attitudes towards individuals with ASD improved when receiving information from formal sources but show little improvement when information comes from informal sources (T.Ryan, 2013). Although, this is only a preliminary study, however it can encourage numbers of people to know about autism and it was found that some of the respondents directly surf the internet to find about autism after completing the questionnaires. It also provides direction for the future research to be conducted in order to motivate more people to obtain further information and have a better understanding about autism. With these findings, therefore, all parties involved must work together and strive to increase public awareness and knowledge toward the autism and at the same time reduces negative views about autism. The public awareness and understanding may also be important in formulation of public health policy and allocation of fund (Neni et. al, 2010). There may be ways to foster better understanding and tolerance of people towards those with autism, a collaborative effort between all components of the health care team is important to ensure successful treatment for ASD and to provide the best life possible. The collaboration should include clinicians, teachers, school workers, agents from outside support groups or foundations, the family and the autistic individuals themselves (Quirantes, 2009). 8. Conclusion Overall, it can be concluded that there is a lack of public awareness towards children with autism in Malaysia. Even there are many Malaysian people have heard about autism but still many of them do not really understand the nature of children with autism. Some of them even cannot recognize the physical appearance of autistic children. True, the parents, family or caregivers of autistic children are strongly advised to monitor their autistic children when shopping or go to public places but sometimes these autistic children will do something that cannot be controlled by parents. Due to this scenario, it is therefore essential to raise awareness among Malaysian people about autism and the characteristic of the autistic children. People other than parents, family or caregivers of autistic individual should aware that autistic children tend to create behavioural problems.



This study is a preliminary study to seek the awareness among Malaysian people towards children with autism. The findings of this study are expected to raise awareness among all Malaysian people including not only the parents, families or caregivers but also to society as a whole about the importance of understanding the characteristics of autistic children. The increasing number of children with ASDs creates more challenges not only to the individuals and families but also society as a whole. Therefore, it is necessary to increase awareness and build a better understanding about autism to all parties so that the responsibility for children with autism not only taken by parents or caregivers but all parties will play a role to help reduce the stress suffered by families with autistic children. At the same time overcome all the stigmas from people who may not understand autism. 9. Limitations There will be limitations in doing this research that need to be acknowledged. One of the limitations of this study could be due to limited articles and journal relating to the public awareness, knowledge and attitude towards children with autism. Since this is only a preliminary study, therefore the low sample size may not represent the whole population of Malaysia. Finally, time constraint becomes the most limitation that could affect the result of this study especially in finding more information about awareness, knowledge and attitudes towards children with autism through literatures. It is suggested that further studies need to be conducted to investigate the determinants that influence attitudes and analyze the relationship between each determinants and the attitude of Malaysian people towards children with autism. References The Holy Quran and Hadith Carrie Edyvean (2008). Attitudes toward autism: reducing discrimination with contact. Honors Thesis. Ball State University. Retrieved 12 May 2014 from http://cardinalscholar.bsu.edu/ Cathryn T.Ryan. (2013). Disability literacy and attitudes towards autism spectrum disorders. Honors Scholar Thesis. University of Connecticut. 5-1-2013. Paper 327. Retrieved 12 May 2014 from http://digitalcommons.uconn.edu/srhonors_theses/327 Danielle N. Martin (2012), The ever-changing social perception of autism spectrum disorders in the United States. Project completed in partial fulfilment for graduation from the Honors College of East Carolina University. David E.Gray (1993). perceptions of stigma: the parents of autistic children. Sociology of Health & Illness Vol. 15. No. 1 1993 ISSN 0141-9889 David E.Gray (2002). Everybody just freezes. Everybody is just embarrassed’: felt and enacted stigma among parents of children with high functioning autism. Sociology of Health & illness. Vol 24 No. 6 2002 ISSN 0141-9889, pp. 734-749 Kelli C. Dominick, Naomi Ornstein Davis, Janet Lainhart, Helen Tager-Flusberg, Susan Folstein (2007). Atypical behaviours in children with autism and children with a history of language impairment. Research in developmental disabilities 28 (2007) 145-162



Isabelle Durand-Zaleski, Jan Scott, Frederic Rouillon and Marion Leboyer (2012). A first national survey of knowledge, attitudes and behaviours towards schizophrenia, bipolar disorders and autism in France. An open access article distributed under the terms of the creative commons Attribution Licence. Retrieved 12 May 2014 from http:/www.biomedcentral.com/1471-244X/12/128 Jasni Dolah, Wan Ahmad Jaafar Wan Yahaya and Toh Seong Chong (2011). A preliminary investigation: potential of interactive multimedia learning awareness (imla) in enhancing awareness among autism parents in Malaysia. Proceedings of the 3rd International Conference of Teaching and Learning (ICTL 2011), Inti International University Malaysia. Nahida Khan, Zahid Masood, Nadia Tufail, Hina Shoukat, KTA Ashraf, Sumera Ehsan, Sabeeka Zehra, Nosheen Battol, Sadia Akram, Sehrish Khalid. (2011). Knowledge and attitude of people towards organ donation. Journal of University Medical & Dental College, Vol. 2, issue 2, Jul-Dec 2011 Quirantes, D. (2009), Collaborative Approach to Autism: A Parents’ Perspective, Journal for Specialists in Paediatric Nursing, 14, 14(3), 203-205 See, C.M. (2012). The use of music and movement therapy to modify behaviour of children with autism. Pertanika Journals Social Sciences & Humanities 20(4): 1103 – 1116 Selamat Widiasmoro Neni, Ahmad Zubaidi Abdul Latif, Sok Yee Wong, Pei Lin Lua (2010). Awareness, knowledge and attitudes towards epilepsy among rural populations in East Coast Peninsular Malaysia: A Preliminary Exploration. Seizure. June 2010. Vol. 19(5): 280-290 Yeo Kee Jiar and Lu Xi (2012). Parenting stress and psychological distress among mothers of children with autism in Johor Bahru and Hangzhou. Journal of Educational Psychology & Counselling, Volume 6 June 2012, Pages 129-153/ISSN: 2231-735X Prevalence of the autism spectrum disorders (asds) in multiple areas of the United States, 2000 and 2002. A community Report from the Autism and Developmental Disabilities Monitoring (ADDM) Network. Funded by the Centers for disease control and prevention (CDC), US Departmental of Health and Human Services. Retrieved 13 May 2014 from http://www.cdc.gov/autism Being the voice of autism – The Star Online dated 12 May 2012, Retrieved 13 May 2014 from http://www.thestar.com.my


http://www.cdc.gov/autism

http://www.thestar.com.my/

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