Daily activities of teenagers with autism at home: a case report study

INTRODUCTION

Experts define autistic disorder or “Autism” as a qualitative weakness covering three practical areas; social interaction or connection, communication, and examples of monotonous behavior, interests, and activities and limited generalizations. Common indicators range from poor eye contact, lack of ability to read social signals, terrible expressive movements, inability to create friend connections, lack of social reciprocity, delayed development of speech, inability to maintain dialogue, lack of ability to perform ‘roles’ or role-playing games, repetitive motoric behavior, and following inflexible routines. These symptoms occur before the child turns 3 years old.¹ Thus, autism is defined as a spectrum disorder because children with autism have attributes that fall within the range from very moderate to very severe.²

Some autistic children have difficulty doing their daily life activities, but the level of difficulty experienced by children varies depending on the level of autism, age and parental factor. The higher the level of education parents have, the more prominent and better the use of the self-care system applied by parents. Nonetheless, the capability level of a child with Autism spectrum disorder to carry out his physical self-care depends on the age of the child which is a concern among parents.³ Parents share a role in parenting a child with autism, but mothers have a greater role and responsibility in fulfilling an autistic child’s daily living activities because in a household a woman generally acts as a primary caregiver.^4-7 Specifically, 91.2% of activities to fulfill the daily living activities of an autistic child are carried out by a mother.⁷

This study is important because it provides an overview of how a mother teaches and trains her autistic teenager child in her daily living activities at home. Ideally, managing and caring for children is not just the responsibility of a mother, all family members should take part in supervising and guiding children in their daily living activities at home. Thus, the results of this research can be beneficial for nurses because they can use this case study report to create training and counseling programs for parents in dealing with daily living self-care for their autistic children at home.

CASE REPORT

Data in this case study research were collected through in-depth interviews and observations. This case was taken from one of the foster families in the community health center. A nurse made home visits to one of the families who has a teenage child with autism. Miss A is an only child aged 18 years old who suffers from autism. She does not attend any schools and only lives with her mother at home. While, her father passed away a long time ago. She still shows some symptoms of autism that still exist till today. For examples, she can only say 2 or 3 simple words or simple sentences. When asked to talk with, sometimes, she cannot provide answers relating to questions, she also tends to speak repeatedly and what she says cannot be understood. She also likes to be alone and smiles to herself, and when she is angry, she likes to bite and claw her hands until they bleed. It is difficult for her to focus when asked to speak, and she cannot maintain eye contact while talking.

Her past history, when Miss A was born, her mother was 40 years old and her father was 45 years old, and she was born with the help of a traditional midwife. As related by her mother, at the age of 2 years she still could not speak and showed strange behaviors such as hitting herself when she was angry and raging. She, too, did not want to play together with neighboring children. Besides, when she was 3 years old, she fell and hit her head. Ultimately, when she entered the age of 3 years and 6 months, her mother took her to the doctor, and the doctor diagnosed her suffering from autism.

The results of interviews with her mother revealed that her mother has always been involving and teaching her daughter in carrying out activities of daily living. She wants her daughter to be independent one day so she believes that her daughter needs to be trained from now on. Her mother also said that wherever she goes, she always brings her daughter because she is worried about leaving her alone at home.

Currently, Miss A’s daily living activities at home are as follows: in the morning at around 08:00 Miss A as usual still needs to be awakened by her mother. After that, her mother teaches her to make up her bed until the bed is tidy. Once that first task is completed, Miss A immediately goes to watch TV up to 10:00. She then is asked by her mother to take a bath. As for bathing, Miss A can spend up to an hour in the bathroom. According to her mother once she enters the bathroom, she does not take shower right away but daydreams while talking to herself and playing with water in the bathing basin. After finishing bathing and dressing, Miss A is sometimes told by her mother to wash her own clothes while her mother is watching her doing it. Miss A is also often told by her mother to help work in the kitchen such as washing rice and vegetables. After her mother finishes cooking, Miss A and her mother eat together. Afterwards, Miss A does the dishes and cleans the kitchen floor. Every day her mother asks Miss A to help make traditional cakes to sell and stock at several stalls. Her mother also teaches her daughter to fold clothes, the activity is usually carried out by Miss A while watching television. They usually eat dinner around 6:00 pm, and after that her mother teaches Miss A to read, count, draw and color. At night, Miss A spends her time watching television until late at night as she will get angry if the television is turned off. Her mother said that Miss A has a habit of staying late at night and going to bed at around 12.

DISCUSSION

The teenage phase is a period of transition. Teenagers with Autism spectrum disorder (ASD) pay heaps of their time in discretionary activities, craving for watching TV all the time and using computers frequently. They most frequently spend time along alone or with their mothers. They spend less time participating in conversations or doing activities with peers. In this regards, age, sex, intellectual incapacity, severity of syndrome symptoms and dysfunctional behavior, number of siblings, mother’s education, legal status, and family financial gain are related to the utilization of adolescent time.⁸ Mothers of adolescent and adult youngsters with ASD spend longer caring for his or her youngsters and managing household chores than mothers of kids who have no disabilities. There have been no vital variations between the 2 groups (ASD and with no disabilities) within the time spent for sleeping, watching TV, or participating in sturdy physical activity.⁹

A mother takes care of all the care needed in a household, particularly caring for her autistic child ranging from physical needs such as eating, cleaning, and giving affection.¹⁰ Mothers at home have a dual role as housewives and educators. As a housewife, she has to do housework such as cooking, washing, cleaning the house, while she must also be able to be an educator for her children by helping and teaching them to do some tasks from school. Therefore, it is not uncommon for women to feel stressed out because of this dual role.¹¹ The capability of autistic children to fulfill their everyday needs is below those diagnosed with alternative non-spectrum.¹² For this reason, parents need to teach autistic teenagers to carry out their daily living activities so that little by little teenagers can independently carry out their own daily living activities. Thus, their dependence on their parents decreases.

CONCLUSION

Teens with autism need special attention from parents and other family members. Parents need to teach and involve children in various activities at home, both involving children in daily living activities and involving children in helping household chores. Thus, children can grow independently and can meet their daily needs. Especially, not only a mother has a duty to teach children at home, but all family members must also be involved in doing that task. In addition, it is necessary to share a role in caring for children and adolescents with autism.

ACKNOWLEDGEMENTS

We would like to thank the doctors, nurses and health workers in the community health center who kindly helped us in the process of collecting data in this case study.

Funding: No funding sources

Conflict of interest: None declared

Ethical approval: Not required

REFERENCES

1. 1. Lindgren S, Doobay A. Evidence-Based Interventions for Autism Spectrum Disorders. Department of Human Services by the Center for Disabilities and Development of the University of Iowa Children’s Hospital; 2011:2-24.
2. 2. Willis C. Teaching young children with autism spectrum disorder. Beltsville, MD: Gryphon House, Inc; 2006.
3. 3. Gorsky SM. Self-Care Strategies Among Parents with a Child Diagnosed with Autism Spectrum Disorder. California State University - San Bernardino, gorskys@coyote.csusb.edu; 2014:1-47.
4. 4. Jiu CK, Rungreangkulkij S. The life scenarios of family who have autistic child at home. J Health Technology Assessment Midwifery. 2019;2(1):1-9.
5. 5. Gray DE. Gender and coping: The parents of children with high functioning autism. Social Sci Med. 2003;56:631-42.
6. 6. Meadan H, Halle JW, Ebata AT. Families with children who have autism spectrum disorders: Stress and support. Exceptional Children. 2010;77:7-36.
7. 7. Suprajitno, Arisky FI. The Family Role in Fulfilling the Activities of Daily Living (ADLs) among Children with Autism Spectrum Disorder. J Ners Dan Kebidanan. 2019;6(1):14-18.
8. 8. Orsmond, Gael, Kuo HY. The Daily Lives of Adolescents with an Autism Spectrum Disorder: Discretionary Time Use and Activity Partners. Autism. 2011;15(5):579-99.
9. 9. Smith LE, Hong J, Seltzer MM, Greenberg JS, Almeida DM, Bishop S. Daily experiences among mothers of adolescents and adults with ASD. J Autism Dev Disord. 2010;40:167-78.
10. 10. Maulana MP. Family Role for Autistic Children (Case Study: 3 Families with Autistic Children in Child Care Center). Faculty of social and political science, University of Indonesia. Acad Pediatr. 2014;14(4):398-407.
11. 11. Kidd, Theresa, Kaczmarek, Elizabeth. The Experiences of Mothers Home Educating Their Children with Autism Spectrum Disorder. Issues Educational Res. 2010;20(3):257-75.
12. 12. Bal VH, Kim S, Cheong D, Lord C. Daily living skills in individuals with autism spectrum disorder from 2 to 21 years of age. HHS Public Access. 2016;19(7):774-84.