Social Problems of Caregivers of Autism Spectrum Disorder Children

Social Problems of Caregivers of Autism Spectrum Disorder Children

Dr. G. Singaravelu

ICSSR Senior Research Fellow Former Professor& Head Dept of Education, Bharathiar University, Coimbatore-641 046.

DOI: https://doi.org/10.51244/IJRSI.2025.120500193

Received: 03 June 2025; Accepted: 13 June 2025; Published: 24 June 2025

ABSTRACT

This article exposes about Social problems faced by the Caregivers of Autism Spectrum Disorder Children in Special schools at Primary level.  Investigator strained to reduce the Social problems of Caregivers of ASD children . . . Objectives of the study: 1.To find out the distress of Social problems of Caregivers. 2. To find out whether there is any significant difference between Male and Female of caregivers of ASD children in related Social problems of Caregivers. 3. To find out whether there is any significant difference between the qualification of Under graduate and Post graduate of caregivers in related to Social problems Methodology: Normative Survey method was adopted in the study. Sample: Fifty caregivers those who were looking after the ASD children, Coimbatore were taken as sample for the study. Tool: Researcher’s self-made Interview schedule was used as a tool for the study. Validity of the tool was established by the opinion of the juries. Reliability of the tool was established by the equivalent form method. Statistical technique:’t’ test was used to analyze the study.  Findings: There is a significant difference between the qualification of Under graduate and Post graduate of caregivers of ASD children in related to social problems of Caregivers.. Educational implications: It can be implemented all the Special schools.

Index Terms: Social problems, Autism Spectrum Disorder Children, Caregivers, Special school

INTRODUCTION

Even if many distress among Caregivers of ASD children, social problems are major distress to the Caregivers. Hence the researcher took the study on distress of Caregivers on Social problems through collecting data from the Caregivers of  ASD children. Autism spectrum disorder (ASD) is a neurodevelopmental condition that presents challenges for both the individuals diagnosed and their families. ASD impacts individuals in social communication and interaction, as well as in behavior patterns, interests, and activities, across different areas such as social, educational, and occupational domains  In recent years, there has been a significant rise in the prevalence of ASD. Current estimates show that, in 2016, there were 20 cases per 1000 children aged 8 years, which is almost three times higher than the numbers reported in 2000 and 2002 . This rise, attributed to enhanced diagnostic criteria, genetic factors, and increased awareness, underscores ASD as a growing public health concern, particularly in light of the considerable burden it places on caregivers. Studies have shown that parents of children with ASD often experience increased stress, anxiety, fatigue, and depression due to the challenges of caregiving, accessing support systems, and facing societal biases. This stress impacts both their health and well-being, as well as their ability to deliver the best care possible. Facing unique challenges highlights the need for customized support services, stressing the significance of recognizing ASD’s frequency and impact on families to meet the community’s needs efficiently.

Need and Signifigance Of the Study 

Caregivers of ASD children face the many problems such as personal problems, Health issues, Psychological problems, Mental problems, and social problems. All the above problems affect them physically, mentally and psychologically. Social problem is a major issues to the Caregivers of ASD children. Wellbeing of Caregivers of ASD children is need of the hour to foster ASD children. Hence the researcher selected this study to alleviate the Social problems of Caregivers of ASD children.

Theoretical Framework

Abiola Olubunmi Taiwo (2023) reflects on the Caregivers of children with developmental delay (DD) or disabilities are at a higher risk of developing mental health problems like depression when compared to caregivers of children who are typically developing. Several factors, including child diagnosis and child challenging behavior, have been known to exacerbate caregiver risk for mental health problems. Social support has been investigated as a way to cope with caregiver depression, but limited research has examined these associations in the DD population, particularly among diverse caregivers. This exploratory study sought to provide information about the association between types of social support and caregiver depression in a sample of 175 ethnically and linguistically diverse caregivers who have children with DD or autism spectrum disorder (ASD). The following research questions were addressed: (1) Which types of social support (family, informal, formal) are viewed as helpful to caregivers of young children with DD/ASD? (2) Does utilization of social support vary by ethnicity (Latinx, non-Latinx)? (3) Which types of social support (family, informal, formal) are associated with caregiver depression? (4) Is the association between social support and caregiver depression moderated by child challenging behavior, child diagnosis (ASD vs DD), or ethnicity (Latinx vs. non-Latinx)? (5) After accounting for family sociodemographic variables (i.e., income, caregiver education, and ethnicity) is social support associated with caregiver depression? Study results for the first research question demonstrated that caregivers rated formal support as most helpful, and informal support as less helpful. The second research question indicated that caregivers’ ratings of the utilization of support did not vary by ethnicity. Results for research question 3 revealed that 1) total and family based supports were associated with caregiver depression and 2) neither formal nor informal supports were associated with caregiver depression. The fourth research question showed that the relation between social support and caregiver depression was not moderated by child challenging behavior, child diagnosis, or caregiver ethnicity. The fifth research question indicated that after controlling for caregiver income, education, and ethnicity, social support explained unique variance in caregiver depression scores. The results of this study have implications for professionals and clinicians, particularly when working with Latinx families during the early childhood period, as well as implications for effectively and efficiently accessing interventions aimed at improving access to support, and caregiver depression when parenting children with developmental delays and disabilities.

Aikaterini Dolyka; Christina Evaggelinou; Katerina Mouratidou; Irini Koidou; Efthymia Efthymiou; Eleni Nikolaou; Dimitra Katsarou(2024) investigates the effectiveness of the “Power of Camp Inclusion” program in enhancing social skills among children with autism spectrum disorder (ASD) in an integrated educational environment of a camp. Caregivers, who received pedagogical training on disability issues, evaluated the program. The study involved 22 individuals with ASD, aged 7-25 years (mean age: 14.82), and 22 companions, aged 20-56 years (mean age: 25.27). Caregivers received in vivo training on social skills to support their role in the program. The Autism Social Skills Profile (ASSP) was used to assess social skills, including Social Reciprocity, Social Participation, and Harmful Social Behaviors, as well as the overall index of social skills. In addition to ASSP, all participants underwent semi-structured interviews. Statistical analysis examined demographic data, internal consistency of variables, their correlation, and t-test analyses of a sample and paired observations. The results indicated that the implementation of the “Power of Camp Inclusion” program had positive effects on the development of social reciprocity, social participation, overall index of social skills, and reduction of harmful social behaviors among children with ASD. The findings of this study highlight the importance of educational programs that support the development of social skills for children with ASD and emphasize the need for such programs to be integrated into modern educational policies.

Objectives

1. To detect the Social problems faced by the Caregivers of ASD children
2. To find out whether there is any significant difference between Male and Female of caregivers of ASD children related to Social problems.
3. To find out whether there is any significant difference between the qualification of Under graduate and Post graduate related to distress of Caregivers
4. To find out the need to minimize the Social problems of caregivers.

Hypotheses

1. Caregivers of ASD children have Social problems
2. There is no significant difference between Male and Female of caregivers of ASD children related to Social problems.
3. There is no significant difference between the qualification of Under graduate and Post graduate of caregivers of ASD children related to Social problems of Caregivers
4. Need to minimize the Social problems of caregivers.

METHODOLOGY

Normative survey method was adopted in the study.

Population  

Caregivers of ASD children from three special schools Coimbatore were population of the study.

Sample

50 Caregivers of ASD children from primary schools named Gowmaran Special School, Saravanampatti, WVS Special School, Goundam palayam and Amrit Multi speciality school, Goundam palayam   from Coimbatore district were selected as sample for the study.

Tool

Researcher’s self-made Interview schedule to the Caregivers was used as a tool for the study. Validity of the tool was established by the opinion of the juries. Reliability of the tool was established by equivalent form method.

Preparation of Tool

The investigator’s self- made Interview schedule was used for collecting the information about social problems of Caregivers of  ASD children. Three point scale was prepared. Three points are considered as Agree, Disagree and Neutral.

Reliability of the tool 

Reliability of the tool had been computed using equivalent method and the calculated value is 0.86. The value is quite significant and implies that the tool adopted was reliable. Hence the reliability was established for the study.

Validity of the tool

Subject experts and experienced were requested to analyze the tool. Their opinions indicated that the tool had content validity and construct validity.

Scoring procedure of the tool

Three point scale was prepared and used after standardize the tool. Three points are considered as Agree, Disagree and Neutral.    Scoring marks are given   the value for caluculation as follow ,  AGREE-2, DISAGREE-0 and NEUTRAL-1. Highest score is 300, lowest score is 50 and 0 value is nothing.

Steps of the study

The Researcher got permission to collect the data from teachers of Special schools by approval of District Differently Abled Officer, Collectroate , Coimbatore. After getting permission from Collectorate and getting permission from principals of selected schools. The researcher approached the Caregivers of ASD children   and discussed the social problems.

Data Collection

The Researcher interviewed the Caregivers of ASD children about their social problems and explained the need of the study. The Caregivers understood the purpose of interview for the study. After the interview with Caregivers, the collected data were analyzed by using SPSS package.

Statistical Technique

t test was used to compute the study.

RESULTS

Descriptive statistics

Hypothesis 1

Caregivers of ASD children have social problems

Table-1 Social problems faced by the Caregivers of ASD children

Sl.NO	INTERVIEW STATEMENTS	Agree	Diagree	Neutral
1	Relationship of Caregivers with their relatives cannot be maintained	35	7	8
2	Social problems give more depression to Caregivers	34	4	12
3	Society is not understanding the problems of Caregivers	36	13	1
4	Do you have good rapport with ASD children?	38	11	1
5	Do you want any social skills training?	26	12	12
6	Are you frustrating by societal reaction?	46	3	1
TOTAL		215	50	35

The above table shows the Interview schedule of Caregivers of ASD children about the social problems related to Caregivers. Interview towards Caregivers of ASD children on “Relationship of Caregivers with their relatives cannot be maintained?” is accepted by 35 Caregivers out of 50 Caregivers. In this statement, 7 caregivers not Agreed but 8 Caregivers responded as neutral. Accepted statement of Caregivers is higher than Disagree and Neutral. . Interview towards Caregivers of ASD children on “Social problems give more depression to Caregivers” is accepted by 34 Caregivers out of 50 Caregivers. In this statement, 4 caregivers not agreed but 12 Caregivers responded as neutral. Agreed statement of Caregivers is higher than Not agree and Neutral.  Interview towards Caregivers of ASD children on “Society is not understanding the problems of Caregivers” is accepted by 36 Caregivers out of 50 Caregivers. In this statement, 13 caregivers not agreed but 1 Caregivers responded as neutral. Accepted statement of Caregivers is higher than Disagree and Neutral. Interview towards Caregivers of ASD children on “Do you have good rapport with ASD children?” is agreed by 38 Caregivers out of 50 Caregivers. In this statement, 11 caregivers not agreed but 1 Caregivers responded as neutral. Accepted statement of Caregivers is higher than Disagree and Neutral.  Interview towards Caregivers of ASD children on “Do you want any social skills training?” is accepted by 26 Caregivers out of 50 Caregivers. In this statement, 12caregivers not accepted and 12 Caregivers responded as neutral. Accepted statement of Caregivers is higher than Disagree and Neutral.  Interview towards Caregivers of ASD children on “Are you frustrating by societal reaction?” is accepted by 46 Caregivers out of 50 Caregivers. In this statement, 3caregivers not agreed but 1Caregivers responded as neutral. Accepted statement of Caregivers is higher than Disagree and Neutral.

Inferential Analysis

Hypothesis 2

There is no significant difference between Male and Female of caregivers of ASD children related to Social problems.

Table-2 Difference between Male and Female of caregivers of ASD children in related Social problems

Experiences	N	Mean	S.D	df	t-value	Result
Male	10	36.30	4.32	48	5.057	significant at 0.05 level
Female years	40	30.26	3.12

The table showing mean scores between between Male and Female of caregivers of ASD children in related Social problems. Mean difference is 4.04. The calculated” t’ value is (5.057 ) less than table value (1.96). Hence null hypothesis is rejected at 0.05 levels. Hence there is  a significant difference between Male and Female of caregivers of ASD children in related social problems from Interview schedule of Caregivers. .

Hypothesis 3

There is no significant difference between the qualification of Under graduate and Post graduate of caregivers of ASD children in related to social problems of Caregivers

Table-3 Mean scores between the qualifications of Undergraduate and Postgraduate Caregivers of ASD children in related to Social problems of Caregivers

Stages	N	Mean	S.D	df	t-value	Result
Under graduate	15	42.41	7.32	48	2.186	significant at 0.05 level
Post graduate	35	38.32	5.46

The table showing mean scores between the qualifications of Undergraduate and Postgraduate caregivers of ASD children in the interview with Caregivers of ASD children. The calculated’t’ value is (2.186 ) greater than table value (1.96). Mean difference is 4.09. Hence null hypothesis is rejected at 0.05 level. Hence there is a significant difference between the qualification of Under graduate and Post graduate of caregivers of ASD children in related to social problems of Caregivers.

Hypothesis 4

Need to minimize the social problems of caregivers

As per the result of the study in the table no-1, Caregivers” interview score on AGREE is 215 compared to DISAGREE is 50. So the Social problems have to be minimized to the Caregivers of ASD children.

FINDINGS

Interview towards Caregivers of ASD children on “Relationship of Caregivers with their relatives cannot be maintained?” is accepted by 35 Caregivers out of 50 Caregivers. In this statement, 7 caregivers not Agreed but 8 Caregivers responded as neutral. Agree statement of Caregivers is higher than Disagree and Neutral..

Interview towards Caregivers of ASD children on “Social problems give more depression to Caregivers” is accepted by 34 Caregivers out of 50 Caregivers. In this statement, 4 caregivers not agreed but 12 Caregivers responded as neutral. Agreed statement of Caregivers is higher than Not agree and Neutral.

Interview towards Caregivers of ASD children on “Society is not understanding the problems of Caregivers” is accepted by 36 Caregivers out of 50 Caregivers. In this statement, 13 caregivers not agreed but 1 Caregivers responded as neutral. Accepted statement of Caregivers is higher than Disagree and Neutral..

Interview towards Caregivers of ASD children on “Do you have good rapport with ASD children?” is agreed by 38 Caregivers out of 50 Caregivers. In this statement, 11 caregivers not agreed but 1 Caregivers responded as neutral. Accepted statement of Caregivers is higher than Disagree and Neutral.

Interview towards Caregivers of ASD children on “Do you want any social skills training? ” is accepted by 26 Caregivers out of 50 Caregivers. In this statement, 12caregivers not accepted and 12 Caregivers responded as neutral. Accepted statement of Caregivers is higher than Disagree and Neutral.  Caregivers of ASD children have Social problems

Interview towards Caregivers of ASD children on “Are you frustrating by societal reaction?” is accepted by 46 Caregivers out of 50 Caregivers. In this statement, 3caregivers not agreed but 1Caregivers responded as neutral. Accepted statement of Caregivers is higher than Negative and Neutral.  .

There is a significant difference between Male and Female of caregivers of ASD  children in related social problems

There is a significant difference between the qualification of Under graduate and Post graduate of caregivers of ASD children  in related to social problems of Caregivers

Educational Implications

1. This study may be experimented in all the Special schools.
2. Multimedia package may be prepared and the training programme may be arranged to ASD Caregivers.
3. It may be activated in Special school education.
4. It can be implemented in Special school education.
5. Government and policy makers have to take steps to alleviate social problems of Caregivers of ASD children

REFERENCES

1. Amelia Rizzo , Luana Sorrenti , Martina Commendatore , Aurora Mautone , Concettina Caparello , Maria Grazia Maggio , Ahmet Özaslan , Hakan Karaman  , Murat Yıldırım  and  Pina Filippello  ( 2024 ) caregivers of Children with Autism Spectrum Disorders: The Role of Guilt Sensitivity and Support, . Clin. Med. 2024, 13(14), 4249; https://doi.org/10.3390/jcm13144249
2.     2.      Abiola Olubunmi Taiwo(2023) Associations between Caregiver Depression and Social Support among Diverse Caregivers of Children with Developmental Delay and Autism, ProQuest LLC, Ph.D. Dissertation, University of Oregon
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5. Aikaterini Dolyka; Christina Evaggelinou; Katerina Mouratidou; Irini Koidou; Efthymia Efthymiou; Eleni Nikolaou; Dimitra Katsarou(2024) Enhancing Social Skills Development in Children with Autism Spectrum Disorder: An Evaluation of the “Power of Camp Inclusion” Program, Open Education Studies, v6 n1 Article 20240004