‘They just want to hear them say mum or dad’: parents of Hong Kong’s autistic children struggle to get the support they need
Hong Kong is home to some 25,000 registered autistic children, and many face long waiting times for government-subsidised rehabilitation services
US scientist Dr Andy Shih has handled many different autism cases since he became an advocate on the issue more than 10 years ago. But the cases have all had one thing in common: the parents just wanted to hear their children call them mum or dad as soon as they could speak.
“For many families, autism is an economic burden, and the social isolation and stress experienced by the family add to the daily challenges ... But many tell me that all they want is to be able to hear their child say ‘Baba’ or ‘Mama’,” says Shih, the senior vice-president for scientific affairs at Autism Speaks, a US-based research organisation studying treatments for people with autism.
Autism, or autism spectrum disorder, refers to a range of conditions characterised by challenges with social skills, repetitive behaviours, speech and non-verbal communication. Most autistic children show signs between two and three years old.
There is no known single cause of autism, nor can it be cured or prevented.
Hong Kong is home to 25,000 registered autistic children, according to the Autism Children Foundation. Many of these youngsters are facing long waiting times for government-subsidised rehabilitation services that provide intensive training programmes.
Last month, a Legislative Council panel meeting revealed that children and teenagers with emotional or mental health problems had to wait up to 17 months to receive treatment from the city’s overburdened public hospitals facing a manpower shortage.
More than 32,000 of these children and adolescents were treated last year, according to Dr Linda Yu Wai-ling, the Hospital Authority’s chief manager of integrated care programmes. Most of them had autism or attention deficit hyperactivity disorder.
Shih, who was in Hong Kong last month to meet local NGOs to discuss initiatives that could help families with autistic members, suggests the problem could be solved by enhancing parental training, as many families still know little about the developmental disorder.
Never give up: Autistic teenager makes mum proud and conquers 100km Trailwalker as finishers crack open the bubbly
“While training of specialists or professionals remains important, there are new ways to enhance capacity and delivery services such as through parental training,” he says. “Training of non-specialists must be explored in order to meet the pressing need now.”
Shih cites local programme JC A-Connect: Jockey Club Autism Support Network as a good example of an exercise in supporting families with autistic children.
The programme, funded by Jockey Club charities, partners with six local NGOs to improve social communication, emotional regulation and learning strategies for autistic children through supporting schools and families as well as educating the public.
Shih says the capacity problem is not one in Hong Kong alone but a “shared challenge” for all autism communities worldwide. Governments in mainland China and South Korea are “aggressively” supporting capacity building programmes for both specialists and non-specialists. In Singapore, there are “robust” government initiatives that try to enhance outcomes through early identification and better care coordination, which he finds “impressive”.
But Shih says support for families in Hong Kong is still better than in many other places, but the capacity and access issues are “probably exacerbated by the high population density, general lack of awareness and corresponding needs”.
Throughout his over a decade long career with Autism Speaks, he has seen awareness grow about autism globally, although misconceptions and misinformation still abound, such as wild theories stating it can be cured by taking large doses of vitamins.
And Shih’s thoughts on the condition have also changed since he joined the advocacy organisation.
“The key transformation has been to move away from a medical model of autism to one that is more social or public health-oriented,” Shih says. “We know that many people with autism require lifelong support so the emphasis has shifted from a ‘cure’ or ‘medical treatment’ to one of ‘inclusion’ and ‘quality of life’.”
“Individuals with autism share the same aspirations for a better life as the rest of us,” he says. “So having access to quality health care, education and social support are similarly important.”