An Explorative Study of Affiliate Stigma, Resilience, and Quality of Life Among Parents of Children with Autism Spectrum Disorder (ASD)

Figures & data

Table 1 Parents’ and Child’s Demographic Characteristics (n = 11)

Demographic Information	n	Mean (SD)
Relationship to child with ASD
Mother	8
Father	3
Age (years)		36.30 (7.07)
Family ethnicity
Malay	10
Others	1
Member of ASD support group
Yes	9
No	2
Participated in any activity organized by Support group
Yes	8
No	3
Monthly family income^a
3000 MYR and less	4
3001 MYR – 5000 MYR	2
5001 MYR and above	5
Age of child with ASD (years)		4.36 (1.63)
Age of child at diagnosis of ASD		3.27 (0.91)
Gender of child
Male	9
Female	2
Type of school
Not yet started	2
Playschool/nursery	4
Special needs class	5
Receiving a disability allowance
Yes	9
No	2
Disability card holder
Yes	6
No	5
Comorbidities^b
Yes	2
No	9
Presence of other conditions associated with ASD
Hyperactivity	4
Speech and/or language difficulties	11
Sleep difficulties	4
Learning difficulties	5
Feeding difficulties	10

Notes: ^a4.16 MYR = 1 USD. ^bThe “comorbidities” included asthma (n = 1) and hearing impairment (n = 1).

Abbreviations: SD, standard deviation; ASD, autism spectrum disorder; MYR, Malaysian ringgit; USD, United States dollar.

Table 2 The Interview Guides

Domain of Inquiry	Sample Questions
Experiences of caring	Could you elaborate on your experiences of caring for your child? Could you elaborate more on before or after the diagnosis? Did you have any adverse or difficult experience in caring for your child with ASD?
QoL definition	What does “Quality of Life” mean to you? What is the most important aspect that will make you happy in your life?
Satisfaction with QoL	Can you explain why you think you have a lower QoL?
QoL and ASD diagnosis	How do you think receiving an ASD diagnosis affects your QoL? Did your life change after receiving the diagnosis, or did it remain the same? Can you give me an example? What are the challenges that often affect your QoL when caring for a child with ASD?
QoL and affiliate stigma	How do you think your family, relatives and friends view you and your ASD child? What adverse experience have you had in caring for your child, if any?
QoL and resilience	Do you think of yourself as resilient to difficult experiences when caring for your child? What adverse experiences have you faced in relation to caring for your child, if any? What sources of help have been available to you during this difficulty?

Abbreviations: ASD, autism spectrum disorder; QoL, quality of life.