The Quality of Life of Mothers Who Have Children with Autism Spectrum Disorder

Authors

  • Sylvidire Maharani Hayu Pertiwi
  • Irwanto Irwanto Faculty of Psychology Atma Jaya Catholic University Jalan Jenderal Sudirman 51 Jakarta 12930 Indoensia

DOI:

https://doi.org/10.21776/ub.ijds.2020.007.02.02

Keywords:

Autism Spectrum Disorder, parenting, quality of life, stigma

Abstract

Autism Spectrum Disorder (ASD) is a complex intellectual and developmental disability clinically diagnosed when s/he is 2 or three years old. These children demand special care to meet their special needs to enable optimized potentials in their development. This qualitative study aims at understanding the stressors affecting the quality of life of the primary care-giver. Parenting for children with ASD is usually more complicated and demanding than for children without disabilities. Four case studies were selected to represent typical mothers of ASD children in different phases of development. Their ages ranged from 29-50 years old and the ages of their children were 6 to 22 years old. Research credibility is constructed through interviews with significant others and observation of social media activities. The instrument for the study is WHO-QoL-BREF which is adjusted for an interview protocol. The results indicated that mothers who were not supported by their spouse and family members often had to deal with the uncertain future alone. Those who felt accomplished in caring for their children were strengthened by the parenting experiences. Support from professionals is crucial for mothers in addition to support from significant others and peers, in maintaining their quality of life.

Author Biography

Irwanto Irwanto, Faculty of Psychology Atma Jaya Catholic University Jalan Jenderal Sudirman 51 Jakarta 12930 Indoensia

Dr.  Irwanto, PhD, MSc, is the founder and director of the Center for Disability Studies and the co-director for the Center on Child Protection at Universitas Indonesia, where he is an adjunct professor in the Department of Social Welfare within the School of Social and Political Sciences at Universitas Indonesia. In addition, Dr. Irwanto is currently a professor in the Department of Psychology at Atma Jaya Catholic University in Jakarta, Indonesia.

Dr. Irwanto served as a member of an expert panel on setting a national agenda for disabled people’s organizations after the ratification of the UN Conventions on the Rights of Persons with Disabilities (UN CRPD), and served as a resource person on the sexual and reproductive health rights of young people with disabilities for the UN Population Fund. Additionally, he served as the Chief Organizer and a Lecturer on the social protection of people with disabilities for 2010-2011 summer courses focusing on disability and development at Vrije University in the Netherlands. His active involvement in social studies won him the Excellence in Social Work Education award from the Association of Social Work Education in Asia and the Pacific in Penang, Malaysia in 2007. Dr. Irwanto was a recipient of a Fulbright-Hays scholarship, and earned his MSc and PhD from Purdue University. In 2002, he was awarded a Postdoctoral Fellowship at the Department of Community Health at the University of Illinois, Chicago.

irwanto_i@yahoo.com

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Published

30-11-2020

How to Cite

Pertiwi, S. M. H., & Irwanto, I. (2020). The Quality of Life of Mothers Who Have Children with Autism Spectrum Disorder. Indonesian Journal of Disability Studies, 7(2), 141–150. https://doi.org/10.21776/ub.ijds.2020.007.02.02

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Articles