Light at the end of the tunnel

Until my son reached 2 years old there was nothing in his manner to make us expect that we would shortly have to deal with the biggest challenge of our lives. A handsome boy who was beginning to speak single words and who loved music and dancing, Ben was an active crawler and demonstrated intelligence and wit. The first alarm bells rang when, having been a good sleeper, he would wake in the night and often not settle for several hours. He also developed a reaction to cow's milk, which he had happily drunk before.

Ben was very energetic; all he seemed to want to do was run around, almost hyperactively. We noticed that he was speaking less and seemed incapable of listening and following simple instructions. At playgroup, he had little interaction with other children or class activities, and when he began kindergarten at 3 the teachers advised us to seek professional help.

In October 2002 I took Ben to the Government Child Assessment Centre and was given an appointment for March 2003. For quicker results, we took him to a private doctor for a development assessment and were shocked to find that his development was delayed by more than a year. His language ability scored the lowest of all the tests.

We enrolled Ben in the private training programs run by the Heep Hong Society. We began one-on-one sessions with a therapist to get Ben to the stage that he would sit down and pay attention. At first Ben cried a lot, but he soon developed an excellent relationship with his therapist, who was extremely kind and supportive.

Finally the day of our appointment with the Child Assessment Centre came. Ben's abilities seemed to have improved, and we were hoping for good results. However in the waiting room Ben fixed his attention on a toy hippo and refused to co-operate. We were told he showed some features of autism spectrum disorders and may need to go to a special school.

It was a hard diagnosis to swallow and I confided in some of my close friends. A few days later I received an email from one of them who had taken the time and trouble to search the internet for information on autism. I was touched and felt the doorway to my journey to understanding the disorder had opened.

I learned one hard fact; autism is a disorder with no real cure. Research showed various intervention therapies may help to an extent, and one thing most of the experts agreed on was that if I could get help for my son before he was 5, then we had a better chance that he would be able to lead a relatively normal life.

A week after the diagnosis I visited another private doctor to discuss biological treatments. We eliminated dairy and wheat products, and began vitamin supplements and cod liver oil - in very high dosages. For Ben, the cod liver oil was highly effective and within just one week he seemed a lot calmer and he was able to sit and learn simple words through flashcards.

During SARS when the schools were closed, my son spent a lot of time with his caretaker (an English speaker), and he seemed to be learning new words and his concentration was improving. It was at this time that we realized he was an English speaker.

In May we took Ben for an assessment with a psychologist, who confirmed Ben's previous diagnosis but added he was emerging on the high-functioning side. Ben's vocabulary was judged to be at the low end of the normal range expected for his age, however his spoken and receptive language was only at the level of a child of 1 year 7 months - at this stage he was just over 3. The psychologist recommend we keep his language as English, as his Chinese was virtually zero and it would only serve to confuse him, so we moved from Heep Hong to Watchdog and joined the waiting list for the government subsidized program. In the meantime we began seeing a language therapist.

By now I had read up on lots of different treatments and cases of autistic children. One book was about a boy called Ryan and when I finished the book I reflected that I had just read the story of Ben's life to date. This was when I first began to hope that we could help him to live a 'normal' life as Ryan was now doing.

Another article I read talked about homeopathy as an alternative treatment. I found a practitioner and took Ben to see her. We left the appointment with a bottle of medicine and were told to administer 10 drops three times a day. The next day our helper was astounded at the change in Ben, and even the speech therapist questioned whether we had returned with the same child. Ben was a lot calmer, was starting to reach out and interact with other people and seemed to enjoy playing with other children. I was delighted when one day I took him to the park and he ran off after one of the older children.

In late August we started the ABA program at the Autism Partnership. Ben was signed up for 15 hours a week and the improvement was amazing. From a limited word vocabulary when he joined, he now speaks in sentences and answers questions. In December we had another language assessment and Ben was shown to have the receptive language of a child 2 years and 8 months and the spoken language of 2 years 3 months.

I don't know which element of all the treatments we tried has been the most effective, or whether they work together to produce these great results. Certainly, I believe that these treatments enabled Ben to reach a level where he was ready for learning and therefore able to adapt to the intensive ABA program. Nutrition and diet intervention are not recommended by behavioral therapists, and traditional doctors will tell you the dosage of vitamins and cod liver oil is harmful to children and that homeopathic treatment is a fairy tale. Speech therapists will tell you the ABA program is for training animals and good for making a kid sit down but it's not about language learning.

The Hong Kong Chinese are less accommodating of syndromes such as autism. They tend to believe that sufferers should be institutionalized, rather than given a chance at normal life. Many local parents don't want to talk about things like this - it is considered a loss of face. I want to and if I hadn't talked about it to my friends, I would have never got the original email and begun such a successful course of treatment for Ben.

We are delighted that Ben will start at an English pre-school this month. He will continue to spend half of each day at the Autism Partnership, as well as two half days at Watchdog. I now feel a lot of hope for my son. His progression over the past three months has been even faster than Ryan from the book. Looking ahead I want my son to be accepted to either ESF or another international school. I must admit there is still a big gap but it seems to be closing up.

** Original article published in February 2004 issue of Playtimes magazine.

To read more about Ben's treatment journal, pls click here


See also related posts :
Autism: A gift of hope, courage and inspiration
Autism - Checking for Symptons
Light at the end of the tunnel
Autism : Brief List of Where to Begin
Autism (part 2): Signs of Autism
Raising a Child with ADHD
Autism Resources for English speakers in Hong Kong
Go Back To Main Page