Autism affects thousands upon thousands of children in Hong Kong, yet the sad truth is that for many parents here, navigating the care and schooling options is extremely difficult, and access to information and new treatments is extremely limited in many cases. Indeed, some of the best early intervention treatments easily found in other parts of the world have yet to become widely available here in Hong Kong. So what is a parent to do? We chatted with Toby Mountjoy, Associate Director of the Autism Partnership to find out what resources exist in Hong Kong for children with autism, and where their families can go for help and information.
How is autism diagnosed and when? Where can parents in Hong Kong go if they think their child might be on the autism spectrum?
If a parent is concerned with their child’s development they should make an appointment with a psychologist who has extensive experience in testing and assessing children. The government provides assessment services at a number of child assessment clinics (CAC) that are situated around Hong Kong. Many parents have expressed concerns about the long waiting lists for the government assessment services and so often parents will seek help in the private sector. There are many private psychologists in Hong Kong that provide assessment services in English and Chinese.
In our practice at the Autism Partnership, we have seen children as young as 14 months of age, however the diagnosis at that age may not be highly reliable. It is more reliable to be making a diagnosis at around 2 or above. Parents seeking advice earlier can mean treatment can begin sooner. A good assessment would consist of direct testing with the child to measure their language, motor, social, play skills and general development. In addition to measuring these skills, an ADOS (autism diagnostic observation schedule) should be done, as this is the gold standard in current assessment protocol. Structured interviews with the parents would also be conducted, as well as collecting information on the developmental history. Parents should also expect to have 1-2 hours after the testing to go through the results and recommendations with the psychologist. It is recommended that a detailed report (usually around 14 pages) be provided which can be useful when contacting service providers for services.
What sort of services exist in Hong Kong to make sure autistic children get the early care that can be so crucial?
Early intervention is critical. Intervention is all about helping the child catch up with the skills they are delayed in. When children are younger the gaps between them and typically developing children are smaller. As children get older the gaps can become very wide. For example if a child begins treatment at age 5 and has no language we may have to catch up 3.5 years of speech. If the child begins at age 2 the delay may only be 6 months. Current research supports that children with autism need many hours of 1:1 training per week to reach their potential. These services should be highly individualized and year round. The difference for children in receiving these services versus not can be quite dramatic. Research shows that intensive Applied Behavioral Analysis (ABA) intervention, when started early, can result in around 50% of those children being able to attend mainstream schools and have regular IQ’s. Unfortunately in Hong Kong there is no government funding for early intensive intervention, as a result parents are forced to have to pay privately and the vast majority of families cannot afford it.
Do private schools in HK accept children with autism? Are there any schools that have programs for children and young adults with special needs?
For English speaking families finding a school for their child can be very difficult. The waiting lists are long for typically developing children and taking on children with disabilities can prove stressful and challenging without adequate support. Schools are more likely to accept children that are high functioning with few behavior problems. The ESF operate a number of special needs classrooms in some of their schools, as well as a special school and there are a number of other schools that run classes for children with moderate learning needs. The Autism Partnership Foundation was created as a charity in 2007 to establish the first school specifically for children with autism. We currently have 6 classrooms for children up to the age of 18 and we will be moving to an amazing new facility at the end of this year.
What other treatment options exist for families here? Are there independent or government programs or centers that offer services and care for autistic children?
In Hong Kong there are many different services that parents can consider. The government provides EETC (Early Education Training Center) which is a training service for children with special needs. In addition children may be offered a placement in a special childcare center or integrated kindergarten placement. These services are mainly for Chinese speaking children. Autism Partnership provides a comprehensive early intensive program that is the same as we provide in our Los Angeles offices. Our ABA program would be considered the gold standard of autism intervention globally. We highly recommend that you ask any service provider what the current research shows about the treatment they are offering. A good service provider should have research that has been in a peer-reviewed journal to back up their treatment claims. The ministry of health in Singapore recently produced a document for families, doctors and educators that reviewed all the current research and made recommendations based on these findings. The report can be found on the Ministry of Health website.
Raising a child with special needs has so many unique challenges and parents often need support as well. What options are there for parents in Hong Kong?
It can be incredibly challenging when you are juggling work commitments, other children in the house and all the other commitments of life in general. There are a number of support groups that parents can find locally that may provide an opportunity to talk and discuss issues with other parents. We recommend also that parents educate themselves in how to manage and teach their children in the most effective way. Parents at our center enroll in an eight-week, 24-hour program that is practically orientated and very hands on to help them gain knowledge and apply it directly with their children. Parents learn specific, practical techniques to help their children overcome difficulties. As each child is different the skills parents learn would be different. Some parents may be learning about increasing speech and language skills and other how to engage their child more effectively or reduce disruptive behaviours.