Research recently conducted at the Hong Kong Institute of Education (HKIEd) revealed that among interviewed parents of children with autism spectrum disorder (ASD), nearly 90% claimed to have experienced discrimination of various kinds. More than 60% of the parents also displayed depressive symptoms, which adversely affected their mental health. The investigators suggest that more public education programmes should be organised to promote understanding of the disorder among the general public, and more support services should be provided to the families of children with ASD.
The study was jointly conducted by the Department of Psychological Studies (PS) and the Department of Early Childhood Education (ECE) at HKIEd from March to December 2015. The interviewees were 424 parents of children with ASD aged between 2 and 18. Almost 90% of the interviewees reported having experienced various degrees of discrimination, with 70% reporting being looked down upon by others and having difficulties in making friends because of having children with ASD.
Table 1: Discriminatory experiences of parents of children with ASD
| People do not treat me in the same way they treat others because I have a family member with ASD | 80.7% |
| People look down on me because I have a family member with ASD | 71.6% |
| People would rather not make friends with me because I have a family member with ASD | 70.5% |
| People would rather not visit me because I have a family member with ASD | 68.9% |
Of those who reported discrimination, more than 60% displayed mild to severe levels of depressive symptoms; more than half reported feeling down, depressed or hopeless, and 20% reported having ideas about self-harm or committing suicide. Additionally, more than half of the interviewees displayed symptoms of anxiety, such as becoming easily annoyed or irritable and worrying too much about various things.
Table 2: Depressive symptoms displayed by parents of children with ASD
| Little interest or pleasure in doing things | 68.3% |
| Feeling down, depressed or hopeless | 58.2% |
| Feeling bad about myself: I am a failure or I let myself or my family down | 50.9% |
| Thoughts of committing suicide or hurting myself in some way | 21.3% |
Table 3: Anxiety symptoms displayed by parents of children with ASD
| Becoming easily annoyed or irritable | 75.8% |
| Worrying too much about different things | 62.6% |
| Not being able to stop or control worrying | 55.4% |
| Feeling afraid, as if something awful might happen | 51.5% |
Furthermore, many of the interviewees reported high levels of subjective caregiving burden. About 98% of the parents felt stressed about caring for their children with ASD while trying to fulfil work and other family responsibilities, and found that they had inadequate time for themselves.
Table 4: Burdens of caring for children with ASD
| I feel that because of the time I spend with my family member with ASD, I don’t have enough time for myself | 98.8% |
| I feel stressed about caring for my family member with ASD while trying to meet other responsibilities (work/family) | 98.3% |
| I feel that my social life has suffered because I have to care for my family member with ASD | 88.9% |
| I feel that my health has deteriorated because of my involvement with my family member with ASD | 84.9% |
Nevertheless, the findings also revealed that the parents of children with ASD who are more “mindful”, accepting their limitations and feelings with positive attitudes while focusing on the present moment, are also better able to cope with parenting stress.
Table 5: Relationship between parental mindfulness and parenting stress
| Low mindfulness | High mindfulness | |
| Low parenting stress | 16% | 33% |
| High parenting stress | 35% | 16% |
Moreover, when the parents of children with ASD are more aware of the gains that come from caregiving (such as being appreciated or needed), they have higher levels of life satisfaction.
Table 6: Relationship between parents’ perceived caregiving gains and life satisfaction
| Low caregiving gains | High caregiving gains | |
| Low life satisfaction | 31% | 20% |
| High life satisfaction | 14% | 35% |
Dr Kevin Chan Ka-shing, Assistant Professor of PS at HKIEd, explained that families of children with ASD are stigmatised partly due to a lack of public understanding. “Children with ASD have difficulties in social interaction and communication and show a markedly restricted pattern of behaviour and interests”, he said. “In public, they may show stereotyped and repetitive use of language and motor mannerisms. Their parents may be blamed for lacking control over or the ability to discipline their children due to the public’s misconceptions about such behaviours. When the parents agree with these attributions, they lay the blame on themselves.” Dr Chan also noted the currently inadequate social services for such parents. He suggested that they participate in mutual support groups for caregivers of children with ASD, in which they would be able to receive support from and share their caregiving experiences with similar others, potentially alleviating their parenting stress.
Dr Ian Lam Chun-bun, Assistant Professor of ECE at HKIEd, pointed out that having a healthy mind enhances an individual’s resilience, or the capacity to withstand stressors. He suggested that the parents of children with ASD could reduce the stress they feel and promote their own mental health by practising mindfulness through breathing and meditation exercises. He also reminded them to learn how to accept things as they are and to see things positively, which could further help to reduce their parenting stress.
(Source: HKIEd website)
