Autism and me – cultural changes and inclusive support

4th February 2021

My autism journey has taught me that there’s a mountain to climb for families, particularly in the Chinese community, and much more that supporting authorities must do – writes Hazel Lim

When I found that my eldest son Noah, then 7, was different from other children, I felt a huge responsibility to ensure he received the right help and support, my journey of autism started. However, personally I felt helpless as I knew little about the condition itself – growing up in Chinese culture I had never heard anyone talk about it. Within the Chinese community, no one wants to mention the word ‘Autism’ – it is viewed as an affliction, an embarrassment. This leads to a huge disadvantage for children and families affected who become isolated, and the lack of acceptance greatly adds to their stress.

So, from working as an interpreter in London, I moved with my husband and our three children to Swansea where I could complete an MSc in Autism and Related Conditions at Swansea University. Noah was later diagnosed with Asperger Syndrome (AS) in 2016 during this time.

Soon into the course I realised not only that I would learn so much but also that my calling was much greater. I was reminded of the many Chinese mothers that I used to interpret for, and their helpless and depressed faces when they were informed of the autism diagnosis of their children, and how these youngsters are misunderstood. Chinese society and culture lacks knowledge about autism – thinking is led by misconception – probably like the UK a couple of decades ago when there was stigma attached to the condition.

My greatest realisation was that autism should be accepted in society – it is a life-long condition. It is society that needs to change and not the behaviour of children for the sake of inclusion. It is ok to be different, autistic or not. With a better understanding, we can change our perceptions, accept that everyone is unique and encourage recognition of the strengths and talents of autistic children.

I also realised that I could not allow myself to become numb to the grievances of people in my homeland. I felt it was a mission for me to respond positively. I became motivated and enthusiastic and began to use my knowledge and experience to encourage the Chinese people.

I set up the Chinese Autism Support Group in Swansea with the support from the Chinese In Wales Association. Four years on, having painstakingly searched for, and reached out to families who need help, the support has reached different parts of South Wales and the group has grown from strength to strength, and more importantly the parents are more empowered and the children are getting more support.

However, my battles and mission are far from over or complete. I am constantly trying to get those who provide autism support services to understand and remove the barriers faced by families. For instance, translation services, including those from Welsh Government and local authorities, are lacking for Chinese families as we are classed as a ‘small minority’. This needs to change to enable children from all backgrounds to reach their full potential.

Access to services is also an issue, and I’d say to providers that if they don’t have any clients from the Chinese minority ethnic group, it does not mean they do not need your help. I would suggest you reflect on how inclusive your service really is – can adjustments be made? It’s important to remember that just because you don’t hear a voice it does not mean it doesn’t exist.

Funding is also extremely difficult to source. As we are a small organisation and English is not our first language, the application process can be difficult to complete and we’re competing against more established organisations – but that does not mean our needs are less!

To help tackle the taboo of the condition within Chinese culture my aim is to re-introduce the understanding of the condition – and ultimately change its name. You see, the Mandarin term for Autism literally translates as ‘loneliness disease’ and in other Chinese speaking countries means ‘closed-self disease’. Rather than it being a ‘condition’ it alludes that autism is contagious. This leads to amazing children being hidden away and treated unfairly.

However, this is a global scale mission and there are immediate needs for me to do more in the UK. With funding I can expand my work nationwide and set up a Chinese autistic charity, bringing together more authorities, service providers, health and social professional and interpreters.

All the autistic children in my support group are my lights. They show me brightness on the journey we walk together, their improvement, their happiness, their talent and true heart is worth more than anything else. Looking at them, sometimes I can’t help thinking that there are millions more Chinese children still being hidden away and many Chinese parents are still suffering due to cultural stigma. Many of the mothers in my support group give me great encouragement though, I believe if they can do it, many more mothers can too. I see growth, and I see hope.

Hazel Lim is founder of the Chinese Autism Support Group based in South Wales and organised the first Festival of Autism in the area. In 2020 Hazel became Chwarae Teg’s Womenspire Champion and was winner of the ‘someone who changed my life’ trophy at the National Autistic Society’s awards.