Diversity & Equality in Health and Care Open Access

Keywords

Autism spectrum disorders (ASD); Autism awareness; Knowledge; Parents; Perception; Zarka

Introduction

Autism spectrum disorder (ASD) is a neurodevelopmental disorder that can be diagnosed around the age of three years [1]. It consists of autism disorder, Asperger’s syndrome, and pervasive developmental disorder Rhett’s, Asperger’s and Pervasive developmental (PDD)-note otherwise specified (PDD-Nose). Autism is more common in males and children born prematurely and it has a strong link to the genetic disorder, fragile X [2]. Of the childhood population in Mexico, 0.87% have been diagnosed with this disease whereas 1% have been diagnosed in South Thames UK [3,4]. Its prevalence is increasing over the last few years and 1\ 45 children in the USA are born with it [5]. The reason for the increasing numbers could be due to the inclusion/ diagnostic criteria modifying over time to be more inclusive and vast or because of increased risk factors being associated with the disorder itself. The alarming signs include delayed language development, repetitive behavior, non-responsiveness to their names, and communication delays. Parents of diagnosed autistic children complain of disturbed sleep pattern, resulting in overall drastic effects of daytime dysfunction, all this contributing to very high stress levels in parents/caregivers [6,7].

There needs to be adequate awareness of autism disorder. The reason for individuals to be well informed is because family members of autistic children undergo great financial and mental burden and the more uninformed they are, the greater the risk of misdiagnoses, thus making their child more difficult and resistant to therapy. Earlier recognition and diagnosis will help parents in devising a well-constructed and streamlined treatment plan, helping release stress, as they will be able to discuss and share their burden with the appropriate doctor and research a correct diagnosis. There is a high chance of misdiagnosis or late diagnosis if there is a lack of awareness about the signs of this disorder, especially among parents since they will be the first to observe any unusual behavior compared to other children or siblings of the same age group. An early and accurate diagnosis plays a massive role in outcomes and improvement of behavior in the child. If the parents recognize the symptoms of autism in their child, like lack of eye contact, hyperactivity, increased attachments to toys, no reaction to verbal cues, etc., they can seek medical help, and according to the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM 5), have accurate knowledge regarding the status of their child. After a parent’s child is diagnosed correctly, they will be able to focus on their child’s betterment, and as the demands and teaching strategy of autistic children is unique, they can approach the child’s school teachers with ease about the disorder and work together towards the child’s education simultaneously with therapy, resulting in an improvement in their diagnosed child’s communication skills, etc.

This paper aimed to assess the knowledge of the signs and symptoms of this disease in families who don't have autistic children. , to find out the gap in awareness and the lack of information among the general population in Jordan especially since the estimated number of autistic children in this country is one out of 120 [8]. This resulted in knowing if awareness and knowledge are up to the mark, thus helping in decreasing the burden of families and teachers and eradicating any confusion and discomfort regarding the child’s behavior.

Methodology

A cross-sectional, questionnaire-based study was conducted among non-autistic parents in Zarka; Jordan, from 1 august 2020 to 15 Dec 2020 to evaluate autism-related knowledge, signs, symptoms, and the treatment regime. A sample size of 200 parents was calculated using SPSS. 16, however, 190 people were included in this study to get a better representation of knowledge among the population. In total, 10 participants failed to complete the survey and so those forms were discarded, giving a response rate of 95%.

Eligible study participants included urban dwellers of Zarka between the age of 20-68 years, who had children. Participants belonging to the medical profession, and those who have autistic children, and those who couldn’t completely comprehend Arabic were excluded.

A 27 items questionnaire was designed following an extensive literature review. Furthermore, the questionnaire was also translated into Arabic. The questionnaire was adapted from similar studies [9]. A pilot study was conducted on a convenient sample of 30 people to assess the clarity and comprehension of the questionnaire. The ambiguous questions were omitted and the questionnaire was refined based on the results of the pilot study.

The questionnaire consisted of four parts. The first section included general information details of each participant, which included age, gender, qualification, profession, and number of children. The second part consisted of statements, which assessed participants' knowledge and perception regarding autism, for example, whether it’s an inherited disorder, a mental disorder, preventable, a life-long condition, and other behavioral habits of an autistic child. The signs and symptoms of autism were evaluated in the third part and included (23 statements) specific questions, such as delayed response to name, fails to show interest in other children, emotional reciprocity, inappropriate attachment to toys, limited attention span, etc. All statements were based on the lekart scale which included “agree,” “disagree,” and “I don’t know.” The final part determined knowledge related to treatment regimens and participants were further asked if they would be willing to do a diagnostic test for autism on their children, and if they were diagnosed, would they be willing to seek the appropriate treatment measures.

The data was entered and interpreted using Statistical Package for Social Sciences (SPSS version 16.0,). Individual responses were counted and displayed using percentages and frequency. A knowledge score was calculated to reflect a participant’s opinions about autism and its signs and symptoms by assigning one mark to each correct answer. These were then tabulated individually. We assigned a knowledge score of eight out of 12 (67%) and that of nine out of 13 (69%) as a good score, for opinions about autism and its signs and symptoms, respectively. Each of these knowledge scores was then analyzed with different sociodemographic factors, such as age, gender, profession, etc. Associations among these variables were tested individually using non-parametric independent sample tests. A P-value less than 0.05 were considered significant.

Results

The study consisted of 200 parents of non-autistic children living in Zarka as illustrated in later). Out of the study population 110 (58%) were females while the rest were males. The mean age of the respondents 50.6.They are of different educational qualifications with graduates (60.0%, n=120) being the most common. Among the socioeconomic classes, participants were mainly from the middle-class background (n= 130, 65.0%) followed by the upper (17.0%, n=34) and then lower classes (13.0%, n=26). When asked about profession, housewife (33%, n=65) was the most common response followed by businessman and teacher with a percentage of 15.0% (n=30) and 13. % (n=26), respectively. Fifty eight (29%) of the parents had two children, and 30(15%) had three children, 8 parents (4%) had one child while only 7% (n=14) of the parents had five children or more. Females scored a statistically significant higher score for both opinions and signs and symptoms of autism with a p-value of 0.048 and 0.032, respectively.). Among the category of number of children, parents having five or more children scored significantly the highest among them (p=0.000) in the knowledge score of opinions on autism only. Statistically significant associations were found in the socio-demographics of profession (p=0.014), academic qualifications (p=0.016), and socioeconomic status (p=0.000) with engineers/unemployed, graduates, and upper-class population scoring the highest in their respective category.

The study shows that among the parents participating in the study, (75%) of them had previously heard about autism. There was a significant difference in the mean of correct opinions and an identification of signs with regard to autism among the two groups (p=0.000), with people who had heard previously about autism scoring higher than their counterpart. Media was the most popular source of knowledge among them, with 33.9% of the parents gaining awareness from there. Parents who had gained their knowledge from doctors and health professionals had a significantly higher mean for correct opinions and signs and symptoms 7.47 (p=0.000) and 8.74 (p=0.000), respectively. Parents who had prior knowledge of someone undergoing autism treatment had a higher mean of correct responses regarding both opinions and symptomology (p=0.000).

Partents’ responses regarding opinions on autism indicate it is being a mental disorder (n=140, 74%), the child becomes unsociable (n=130, 68%), and an autistic child has special talents/ attributes (n=115, 59%). A significant population of parents (n=60, 32%) disagreed on considering an autistic child mentally retarded. Upon different opinions on autism, the parents were unsure and responded with “I don’t know,” especially in the cases of considering autism an inherited disorder (n=60, 43. %), if autism is preventable (n=75, 48%), and if autism is caused due to parental negligence (n=66, 45%).

The knowledge of different signs and symptoms of autism can be assessed. Of the parents, 64% (n=113) agreed that an autistic child is obsessed with the same routine and becomes upset at minor changes; 61% (n=102) agreed upon delayed language development and lack of interest in interacting with other children to be a sign of autism; and 62% (n=108) correctly disagreed that an autistic child makes good eye contact and uses appropriate hand gestures while interacting with other kids. An autistic child having no perception of fear or danger was the least sign that parents were aware of (37 %, n=62). About 70% (n=156) people consider parental counseling to be an effective treatment for autism while 47.8 % (n=70) of the population considered diet to play no part in the treatment of autism. Only 17(12%) knew that an autistic child can be tested clinically. One hundred twenty (61.1%) parents were willing to get their child tested for autism while 95.6% (n=180) of the population admitted that they were willing to get their child treated in case of them being diagnosed with autism. Only a few (15.9%, n=18) people were aware of autism centers present in Zarka.

Despite significant effort, there is insufficient data concerning the prevalence of autism owing to factors such as the way autism is perceived and an inability to diagnose autism [9]. Several studies stress on the early diagnosis and thus early intervention in patients with autism spectrum disorder (ASD), which may lead to better outcomes in some patients [10,11]. As signs and symptoms become apparent after children reach 18 months, our study aimed to assess the level of awareness regarding autism among parents.

To give our assessment greater accuracy, we calculated knowledge scores for the sections concerning correct opinions and signs and symptoms. Though our participants weren’t completely unaware of autism, they displayed poor knowledge in both sections. A mean score of 5.59 was seen for the section regarding correct opinions for autism, with eight out of 13 being considered a good score, and a mean score of 6.84 for signs and symptoms was calculated, with a good score being decided as nine out of 14. The poor knowledge displayed by our participants is similarly seen in other studies, such as one conducted in Pakistan among pre-school teachers, of which only 50% were able to identify a majority of disease characteristics and one where only 17% of pre-school teachers being interviewed in China could answer more than 50% of the items accurately [12,13]. However, studies showing better awareness have also been conducted, such as a study among firstgrade nursing and medical students in Istanbul where 70.9% were moderately aware of autism [14].

According the study conducted in Karchi [15], a greater number of females identified correct opinions regarding autism in comparison to males, enforcing the same finding seen in studies. Better responses were also noted regarding correct opinion about autism by unmarried participants and those with five children or more. In analyzing the ability to identify the signs and symptoms of autism, females and unmarried participants again possessed greater knowledge, in line with previous findings [16]. Pickard and Ingersoll found that parents of children with autism and of a high socioeconomic status were more aware of service options for their child in comparison to parents of a lower socioeconomic status, which supports our finding of parents from the upper class identifying more signs and symptoms of autism [17]. My study showed variable results in relation to the impact profession has on the ability to identify signs and symptoms with the unemployed and engineers displaying the most knowledge and those employed in management displaying the least, as similarly noted in a Jordanbased study, with the level of education having no effect on their behavior modification skills towards their autistic child [18].

Approximately 75% of the participants had heard about autism. These individuals could more effectively recognize correct opinions and signs and symptoms in relation to those participants who had never heard of autism. These findings are reinforced by a study conducted in Kerala, which assessed the level of awareness concerning autism among parents before and after awareness program was held, with a greater level of knowledge seen among parents after the program [19]. Not surprisingly, media proved to be the greatest source of knowledge owing to its popularity [20] but healthcare professionals proved to be a more useful source. As detailed by Hansen, our study also proves that participants who knew someone undergoing treatment for autism were more knowledgeable [21].

According to the American Psychiatry Association, (APA) autism is a neurodevelopmental disorder diagnosed in childhood, which leads to impaired social skills and difficulty in adapting to change and is a disorder that can be managed but not cured [22]. Among the participants, the majority managed to identify these characteristics but incorrectly agreed with autistic patients possessing normal eating habits, as existing literature suggests problems in feeding due to compulsive behaviors, motor or sensory difficulties, and gastrointestinal problems [23]. As the concept of autistic children’s possessing savant or special abilities, such as excellence in mathematics, art, music, and rote learning, is frequently portrayed in the media and in books, it isn’t surprising that the majority of participants agreed with this point. Researchers have looked into this particular characteristic repeatedly and though every person with ASD isn’t said to possess these skills, Howlin et al. concluded that one-third of autistic children do so [24]. Even though parental negligence has been established as having a relation to autism [22], the participants remained unsure on this point, along with the disease being inherited and preventable, which matches the degree of uncertainty in the literature available [22,24]. Even though most diagnosed cases of autism are idiopathic, secondary causes, such as German measles, have been identified as well.

Well-documented and established signs and symptoms of autism reported on by multiple sources are an inability to interact with other children, a delay in or no development of important milestones, such as speaking and responding to names, obsessive repetitive behavior, difficulty in adapting to change and reacting to emotions, all of which were recognized correctly by a majority of the participants. Autistic children don’t make eye contact or use which were features the participants were aware of. Despite being known symptoms of autism, participants were not aware of children having a diminished perception of danger and response to emotions. These results from their inability to decipher what another person might be feeling, as they don’t interpret changes in expression and tone [24]. The management of ASD is mainly focused on psychological interventions, and the benefits of providing this treatment as soon as possible have been stressed on repeatedly. As parents are the primary caregivers in most situations, training parents on methods of treatment is known to have a benefit and, over the years, detailed research is being done on this to develop specific training techniques [21,23]. Most of the parents interviewed felt parental counseling is an effective method of treatment but didn’t feel that diet had any effect on the condition despite evidence conflicting with this opinion, with particular importance being placed on gluten- and caseinfree diets. Unfortunately, a minority claimed autism could be diagnosed clinically, despite specific tests, such as the childhood autism rating scale (CARS) and autism behavior checklist (ABC), being the only method of diagnosis [24]. However, on a positive note, parents agreed to get their child tested and, if needed, treated for autism but were unaware of centers in Zarkai, a finding seen repeatedly among studies such as one conducted in China among teachers [13].

Certain limitations were met within this study owing to convenience sampling. A majority of the participants were from the middle class, resulting in inefficiency in assessing the effect socioeconomic status has on the level of awareness among the parents. Other than that, more females participated in the study in comparison to males. As autism is still a relatively undiscussed disorder among the Jordanian population, many people were completely unaware of the disorder and were not willing to respond to any questions regarding it. As this study was carried out in Zarka only, a clear estimation of the awareness regarding autism of the entire Jordan population cannot be made. However, our study is the first of its kind in Jordan as it is conducted on parents and the results we obtained can be used to evaluate how to bridge the existing gap in knowledge among parents, thus allowing them to know which signs to look out for and how to seek appropriate guidance.

It can safely be concluded that there is a lack of awareness and insufficient knowledge about autism among Zarka area in. Other than the signs and symptoms, parents are also unaware of diagnosis and treatment methods. This results in delayed identification and intervention, leading to unsatisfactory outcomes in patients. As parents are the primary caregivers, significant efforts should be aimed at raising knowledge levels amongst them regarding autism, through awareness campaigns. Health professionals and Special education professionals should also be directed to educate new parents on all details concerning autism.

Summary: Knowledge , awareness and perception of autism is an important issues among the community and families because the families mainly the parents are one of the most important team members how interact with the their children.

This article comes to evaluate the level of the parent’s knowledge, awareness and perception of the autism characteristics. The result of this paper can be used to formulate special programs in training the families in the field of autism.

Conflict of Interest

For this paper: The researcher did not receive any sort of funding. The research members do not expose to any sort of conflicts of interestor any type of bio or emotional hazard.

References

1. Myo Foundation for medical Education and research (2018) Autism spectrum disorder.
2. Muhle R, Trentacoste SV, Rapin I (2004) The genetics of Autism. Paediatrics 113:e472-86.
3. Fombnne E, Marcin C, Manero AC, Ruth B, Diaz  C, et al. (2016) Prevalence of Autism Spectrum Disorders in Guanajuato, Mexico: The Leon survey. J Autism Dev Disord 46:1669-85.
4. Baird C, Simonoff E, Pickles A, Chandler S, LoucasT,et al. (2006) Diagnosis and Management of Autism in Childhood. Lancet 15:210-5.
5. Rosanoff M (2015) Behind the science: new 1 in 45 autism prevalence survey. Autism speaks.
6. Klukowski M, Wasilewska J, Lebensztejn D (2015) Sleep and gastrointestinal disturbances in autism spectrum disorder in children. Dev Period Med 19:157-61.
7. Johnson Cr, Smith T, DeMand A, Lecavalier L, Evans V, et al. (2018) Exploring sleep quality of young children with autism spectrum disorder and distruptive behaviors. Sleep Med 44:61-66.
8. Muhammad AK (2018) Final report 29th Adia-Pacific international seminar on education for individuals with special needs. National Institute of Special Needs Education, Japan.
9.  Arif MM, Niazy A, Hassan B, Ahmed F (2013) Awareness of autism in primary school teachers. Autism REs Treat 1:961595.
10. Miller-Wilson K (2018) How many people are affected by autism worldwide.
11. Fermell E, Eriksson Ma, Gillberg C (2013) Early diagnosis of autism and impact on prognosis: a narrative review. Clin Epidemiol 5:33-43.
12. Limon A (2013) Importance of early detection in autism spectrum disorder. Gac Med Mex 143:73-8.
13. Lui Y, Li J, Zhengo Q, Zaroff Cm, Hall BJ, et al. (2016) Knowledge, attitudes, and perceptions of autism spectrum disorder in a stratified sampling of preschool teachers in China. BMc Psychiatry 16:142.
14. Ayub A, Naeem B, Ahmed WN, Suraksha S, Komal A, et al. (2017) Knowledge and perception regarding autism among primary school teachers: across-sectional survey from Pakistan, south Asia. Indian J Comm Med. 42:177-9.
15. Luleci NE, Hidiroglu S, Karavus M, Suzan C, Dicle C, et al. (2016) A study exploring the autism awareness of first grade nursing and medical students in Istanbul, Turkey. J Pak Med Assoc 66:916-21.
16. Shaukat F, Fatima A, Zehra N, Hussein MA, Ismail (2014) Assessment of knowledge about childhood autism a mong medical students from private and public universities in Karachi. J Pak Med Assoc 64:1331-4.
17. Pickard KE, Ingersoll Br (2016) Quality versus quantity: the role of socioeconomic status on parent- reported service knowledge service use, unmet service needs, and barriers to service use. Autism 20:106-15.
18. Deeb RM (2016) Knowledge of parents of children with autism spectrum disorder of behavioral modification methods and their training needs accordingly (Retracted). Int Educ Stud 11:141-54.
19. George L, Sakeer S (2015) Awareness about autism among parents. Int J SCi Res 4:1525-30.
20. Van deBelt TH, Engelen LI, Berben SA, teerenstra S, Samson M, et al. (2015) Internet and social media for health related information and communication in health care: preferences of the Dutch general population. J Med internet Res 15:e220.
21.  Hansen LK (2015) Development and validation of a survey of knowledge of autism spectrum disorder. The University of Southern, Mississippi.
22. Hansen LK (2015) Development and validation of a survey of knowledge of autism spectrum disorder. The University of Southern, Mississippi.
23. Sowmya N (2014) Feeding problems in children with autism.  Therapies, Treatments & Education, Interactive autism network, Interactive Autism Network at Kennedy Krieger Institute, Nigeria.
24. Howlin P,Goode S, Hutton J, Rutter (2009) Savant skills in autism: psychometric approaches and parental reports. Philos Trans RSoc Lond B Biol Sci 27:1359-67.