When Hazel Lim first moved to Swansea with her family, she felt isolated and alone. Following her son's referral for an autism diagnosis by his school in London, Hazel decided to move to Wales with her family, giving up her successful career in translation to better understand her son's behaviours through a Master's in Autism and Related Conditions at Swansea University.
Her son Noah was five at the time. From the way he interacted with his peers to how he responded to instructions, Hazel could tell her son was navigating life differently to others around him. Years of being on a waiting list for a formal diagnosis and a lack of support from friends and family when she tried to discuss her son's behaviour left Hazel feeling disheartened not only by the system but by cultural taboos surrounding autism.
The mother-of-three was looking to her friends for moral support but she realised through her own personal experience with them and her research at Swansea University that attitudes towards autism in Chinese culture were very complicated and people did not want to talk about autism. "I came across the big impact of Chinese culture on how autism is perceived. I was very interested and it was almost like a calling to me. I needed to look into how we can better support Chinese people," said Hazel. You can get more Swansea news and other story updates straight to your inbox by subscribing to our newsletters here.
Now Noah is aged 15 and has been formally diagnosed with autism, his younger brother is also neurodivergent and Hazel is a specialist in the field. Hazel has also been diagnosed with ADHD and autism later in life and said symptoms in women and girls are very different. She said her son's diagnosis was the beginning of her family's journey with autism and she is open about their experiences because she wants to break the taboo.
Hazel is the award-winning founder of the Chinese Autism Support Group in Swansea and the group currently supports more than 40 Chinese families with children who have autism. The Group recently launched its website Chinese Autism which Hazel says is 'all about empowering people in the community'.
Discussing why her support group is so vital, Hazel explained that Chinese cultural values often clash with the behaviour of some people with autism. With this in mind, she has dedicated her life to reducing the stigma around neurodiversity amongst Chinese people living in Wales. "Disability is something that we don't talk about in our culture. It's almost a taboo. But when you don't talk about it people think it's a very rare thing to happen. They think it's a disease," said Hazel.
In Chinese culture, due to the popular teachings of Chinese philosopher and politician Confucius, there is a huge focus on manners and harmony in the community, explained Hazel. This can contradict with the behaviours of people with autism. For example, a child with autism may find it difficult to maintain eye contact or greet elderly people in the community which would be seen as the product of bad parenting, said Hazel.
Academic excellence is also of high importance in Chinese culture, explained Hazel. "You need to secure a good job and earn a lot of money. You need to provide for your family otherwise you bring shame to them. So, autistic children do not have an advantage in Chinese culture because everything they are presenting is contradictory to the traditional cultural values."
Instead of parents thinking of ways they can support their neuro-divergent children, they reject the idea and wonder why such a "disaster" could happen to them, said Hazel. In mainland China, terms used in Mandarin and Chinese-speaking countries which are associated with autism literally translate to "loneliness disease" and "closed-self disease". In this way, language creates a cultural perception that autism is a contagious disease which is curable.
"When I first came to Swansea I did not know anybody," said Hazel, who grew up in Malaysia and lived in London for 15 years. "I had no friends here. I only wanted to come here for one year but my plans changed." Hazel said she could not find any Chinese parents or carers who had children with autism.
When she met a health visitor, she asked if she knew of any people with autism within the Chinese community in Swansea and was told there were quite a lot but the health visitor could not disclose any more details. "From then on I was on a mission to find those families," said Hazel.
Running workshops to educate families on autism and advocating for families across Swansea, Hazel runs two projects with the Chinese in Wales Association. The projects are called Find Me and Allow Me and aim to ensure children with autism from the Chinese community in Swansea have their voices heard and are able to take part in regular workshops and fun activities.
Although Hazel said the amount of families she supports may not seem huge, she explained the needs of these families are great. "This small group of people, you probably do not know about their difficulties. Why? Because they do not have a voice because of the language barriers and the fear they live in due to cultural beliefs. They are so isolated. They don't even step out of their house other than the school run. These people need help in lots of different aspects of their lives to feel more accepted in society and for their children to have better opportunities."
Despite Hazel's husband, who has Asperger's Syndrome, wanting a private life, he supports his wife in speaking publicly about their family's experiences, she said. "When I voice these issues, I'm representing a lot of unheard voices. Some Chinese people don't like me talking so loudly about my son having autism. I say, 'I don't like it either but I do it so other people know it is okay to talk about it and not a shameful thing to talk about.'"
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