Family Life Education Series
Mutual support for families with special needs : A Lifelong Pledge

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Of all the childhood disorders listed in the Diagnostic/Statistical Manual of Mental Disorder (IV), autism is the most devastating and perplexing developmental disorder in childhood. The disorder involves problems in many domains of functioning: language, attention, social responsiveness, perception, and motor development.

The essential feature of autism is that a child's ability to respond to others does not develop normally within the first three years of life. Even at this young age, the child's social deficits are obvious because of the lack of interest in people and failure to develop normal attachments to adults. In infancy, they tend to resist cuddling, lack eye contact, or are even averse to physical affection. Their language development may be poor as a result.

Children with autism often have severe temper tantrums, particularly when their environment suddenly changes. The cause of autism remains inconclusive yet the symptoms are treated with medication. The medication aims at improving attention capacity and reducing the mood swings for certain behavioural therapy and educational intervention. Autistic children sometimes can be hyperactive because of the limited attention span.

The following article is written by one of the parents in our "Self-help Group of Parents with Special Needs Children". Tony and Jean have been married for over 10 years and they are raising two children, Jenny (aged 12) and Billy (aged 9). Jean has a mental problem and needs daily medication for maintenance, and her compliance with medication is sometimes poor. This is Tony's story:

Jean, my wife, has been ill for many years. Billy, my son, is autistic and hyperactive. Luckily he has average intelligence and attends regular primary school. Jenny, my daughter, is attending Year 2 in a secondary school, and is happy, sincere and healthy.

Jean and Billy have one thing in common - they need medication to maintain daily functioning. Without medication, Jean's illness will relapse and she will end up in hospital; Billy's behaviour will disturb classmates and the teacher cannot control him in class. However, medication brings unbearable side effects and discomfort and that is why it is so difficult for them to comply. They asked me constantly 'when can I stop the medication?' My answer is 'when you get better'. I wonder myself 'Are they getting better?' I have no choice and so do they.

Most doctors say the effects of medication are inconclusive; I know I have to face up to this for the rest of my life. I still remember our wedding day when Jean and I exchanged rings and sworn to love and take care of each other as long as we live. Then, Jean got sick and was hospitalised from time to time. Her condition appeared to have deteriorated following the birth of our second child, Billy. It seems I have an endless day, working to support my family, taking care of my two young children after work, finding child-care for them, and visiting my sick wife in hospital. I was totally exhausted physically and mentally. I find I am shying away from people and feel lonely and painful.

Luckily, I met a friend who reminded me that I was not alone in my plight. I stop blaming my wife and son, accept their sickness and give them better care. I shared my feelings with people who had gone through the same experience. I joined the support group for "Parents with Special Needs Children" in 2004. I attended the group's meetings every month and later became a committee member.

When I was with them, I felt comforted and cared for. I felt recharged and in control again. No pain no gain: you can only experience it at first hand.

PS&SR Branch Welfare Services Group