An extensive population census by the National Bureau of Statistics of China in 2021 found that 1% of its children (approximately 3.1 million) have autism. Even though records of the symptoms of autism (speech delay, “muddle-headedness”) were found in China as early as the seventh century, autism was not recognised or acknowledged until 1982. Due to cultural beliefs and social stigma, this neurodevelopmental disorder is often neglected in children.
Although awareness about autism has increased over the years, it is believed that the numbers are still understated. China is a big country with a large population, and previous prevalence estimates only considered children with severe ASD who attended special education schools. In addition, all cases of autism in children attending mainstream schools are newly diagnosed. This suggests that there may be more children who are undiagnosed. As a result, there could be millions of children with autism who lack access to necessary treatments and interventions, including behavioural therapy and educational support.
The Role of Society, Culture, and Beliefs
Children with autism spectrum disorder (ASD) exhibit restricted and repetitive behavioural patterns and have atypical social communication and social interaction development. One of the key diagnostic indicators of ASD is difficulties in speech and communication. More than 30% of young children with ASD are incapable of speech, may struggle to comprehend language in context, and may never acquire functional speech. And since one of the cultural beliefs is that “clever children speak later”, children with ASD are left as they are.
Rather than acknowledging the disorder, parents may regard the symptoms of ASD, such as non-compliance behaviours or food selectivity during mealtimes, as the child being disobedient or having an unusual personality. The lack of knowledge also contributes to parents’ denial of the condition.
Chinese culture historically believes that physical punishment is a beneficial parenting strategy to encourage the development of virtues like diligence, integrity, and obedience. The popular phrase goes, “to hit is to dote, to scold is to love” (打是疼，骂是爱). Parents who regard the symptoms of ASD as disobedience in the child might resort to physical punishment as discipline. Without a proper understanding of the disorder and the lack of resources, parents hold inappropriate expectations about their child’s development, thus increasing the use of physical discipline.
The long-standing stigma against people with disabilities may also add to the burden of the parents. As McCabe studied the experiences of 43 families of children with ASD, parents shared about the overtly discriminatory attitudes and practices against people with disabilities and their families. For instance, public schools would not accept children with ASD (2007). In another systematic review, Fang et al. found that parents of children with disabilities often feel socially isolated (2020).
Parents of children with ASD already face high levels of stress in parenting. More challenges and stressors befall them when they have limited access to education, rehabilitation programs, and state financial aid. Parental stress can intensify a child’s emotional and behavioural problems and raise the risk of physical discipline, which may increase the risk of abuse. According to the WHO, one of the seven essential methods for preventing child abuse is the adoption of parenting training and support.
Short-term Intensive Parent Training Program in China
According to Ratliff-Black & Therrien, there are two major categories of parent training – Parent Support and Parent-Mediated Interventions. They are differentiated based on the program’s goal and its agent of change. Parent Support programs promote knowledge by providing psychoeducation and care coordination to parents of children with ASD. Whereas in Parent-Mediated Interventions, parents are actively involved in helping their children with ASD learn new skills or modify behaviour. It can be a primary or complementary intervention, where professionals coach and guide parents to facilitate positive outcomes in their children. (2020)
About the Program- SREIA
Stars and Rain Education Institute for Autism (SREIA) is China’s first private organisation that supports children with ASD and their families. In its intensive parent training program, parents are the primary agent of change. Parents learn about ASD and pick up parenting techniques to promote child development and reduce problem behaviours. The program is conducted five days a week over 11 weeks, with the primary caregiver to the child with ASD. Based on applied behaviour analysis, social learning theory, operant conditioning, and developmental and cognitive behaviour theory, the program teaches practical skill sets like behaviour management techniques, visual support, and maintaining daily structure and routine.
The program starts with individual consultations to help program facilitators better grasp the strengths and concerns of the families. Each parent-child dyad then receives a treatment plan addressing specific child behaviours, areas of growth for caregivers, and any other concerns raised by caregivers. The program will address these particular concerns and other generic topics about ASD. Program delivery consists of didactic lectures, training and in-person practice in small groups, and Caregivers are encouraged to do their homework in written or video format.
Reported Outcomes of the Program
In the evaluation of SREIA by Fang et al., parents reported improved mental well-being when they learnt how to manage their emotions and received moral support from peers and professionals. They also had greater self-efficacy, used more positive parenting practices and moved away from harsh discipline methods. Having a deeper understanding of ASD allowed them to make better decisions about what other services are needed, and it also helped them better accept their child’s condition. The training even gave them a sense of hope regarding their child’s progress (2022).
Caregivers also reported positive changes in their children. Not only did they feel better, but they also had better behaviours and seemed more flexible. These positive outcomes could be the results of positive parenting, improved communication and more parent-child play and interaction.
As a result, caregivers noticed positive changes in their spouses, where there was more collaborative parenting and less tension and stress. However, it did not make a difference for the elderly family members. These perceived improvements might have sparked a “virtuous circle” where one positive result leads to another, further encouraging a continuous process of progress.
Parent Training as a Form of Support
Mytton et al. found that parenting education programs can enhance parents’ and children’s health and well-being. They noted how participants felt that having a child with ASD resulted in social marginalisation. Parenting programs provide respite by being a non-judgemental and inclusive space where they can normalise their experience and widen their social support network (2014).
Similar sentiments were found in the participants of SREIA. One of the significant facilitators for the program was the presence of social support. In addition to the support from partners and extended family, participants reported receiving support from the trainers and their peers. The open and flexible communication channels with the professionals allowed parents to receive guidance, even outside the sessions, when they were at a loss. Caregivers see themselves in a similar situation, with common goals for their child’s progress; thus, they display a strong sense of solidarity and peer support.
After going through the training program, some participants suggested the need for formal mental health support, such as counselling, for caregivers. Many parents of children with ASD pay lesser attention to their own needs, often reporting having little time for themselves. Parenting programs do more than teach skills; they provide the support that changes how parents function, helping them with their mental health.
Regardless of geographical location, culture, and beliefs, raising a child with ASD is stressful. Parenting training programs like SREIA have the potential to increase knowledge about ASD, provide intervention for the children, and support caregivers with skills and knowledge, resulting in the “virtuous circle” of continuous progress.
Understand more about Children with ASD:
- Benefits of Exercise on Sleep and Behaviour
- How Music Affects Speech
- How Face Perception Affects Social Skills
- Food and Nutrition Matters
References:
Fang, Z., Lachman, J. M., Zhang, C., Qiao, D., & Barlow, J. (2022). A virtuous circle: Stakeholder perspectives of a short-term intensive parent training programme delivered within the context of routine services for autism in China. Autism, 26(8), 1973–1986. https://doi.org/10.1177/13623613211070869
National Bureau of Statistics of China. (2021). The Seventh National Population Census of the People’s Republic of China. http://www.stats.gov.cn/tjsj/pcsj/rkpc/6rp/indexch.htm
World Health Organization. (2016). INSPIRE: Seven strategies for ending violence against children. Retrieved from https://www.who.int/publications-detail/inspire-seven-strategies-for-ending-violence-against-children
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