by Kenneth Lyen
INTRODUCTION
Just as there is a spectrum of autistic individuals, there is also a spectrum of families into which they belong. Some families are thrown out of balance when they are challenged with a child who needs extra support and management. Others cope with the myriad of difficulties with self-assurance. Here we will focus on the more severe end of the autistic spectrum that poses stresses upon their families. What are the challenges facing them?
COPING WITH AN AUTISTIC FAMILY MEMBER
1. Challenge: How to come to terms with the diagnosis?
Approach: It can come as a shock to learn that your child has autism. None of us are prepared for this. And we will go through a wide range of emotions ranging from fear to anxiety and despair. We love our child so much, and we want to give them the very best in life, but now we fear the worst, our hearts suffering agonizing pain. Initially you may deny the diagnosis, and later you might become angry and even depressed, before finally you begin to accept the diagnosis. Some of your friends may try to convince you that autism is not a disease, but just a different condition, that will sort itself out in the end. But this will probably not help your grief.
It is important to try to obtain more information, either through online sites, books, or talking to recognized teachers, psychologists or medical specialists about the diagnosis. Given the characteristics of autism, it is important that you and your family seek professional advice early, as this can help you learn how to engage and connect with your child, and to become more flexible and understanding of your child’s behaviours, feelings, and development.
2. Challenge: How would you deal your other family members’ reactions to the diagnosis?
Approach: You may have begun to accept the diagnosis of your child, but then you have to inform other members of your family. Each one will probably respond differently. Perhaps you might want to talk to each member separately, including your spouse, your siblings, grandparents, and other caregivers. The reason is that autism is a lifelong condition that requires teamwork and long-term management. This can only come about when everybody accepts and understands the condition and learns how to work together to cope.
Having a child with autism can be very lonely for you. It is not uncommon for parents to keep the child’s diagnosis hidden from their immediate family and even their friends and colleagues. It is probably better not to conceal your child’s condition from others, because eventually you will need to enlist the help of your friends, neighbours and other members of the community.
3. Challenge: How should we accept our autistic child?
Approach: Accept your child as they are. Accept their idiosyncracies, their unusual mannerisms, their quirks. There are times they will be exasperating, like crying for long periods, and nothing you do will stop the crying. Don’t give up. Engage with them, love them. Children will grow up and change with time. You too will learn to adapt.
4. Challenge: How should we change the physical environment of our home?
Approach: Autistic children are sensitive to the environment. First, the home environment should be safe. Avoid getting furniture with sharp corners. Keep dangerous implements away. Cover electric sockets with electric plug protectors. Construct window grills to prevent the child jumping out of the flat.
Reduce noise because many autistic individuals have sensitive hearing and cannot stand loud noise. This also applies to television, radio, and home cinemas. Same treatment with bright lights. Many autistic people do not tolerate lights that are too glaring.
Have a variety of safe toys. Some autistic children like to line up objects, like cars, so perhaps one should not buy too many similar vehicles.
5. Challenge: Should we set a timetable?
Approach: Yes, autistic children learn and develop better with a predictable programme. You should set up a detailed structured schedule that can be followed every day. This includes waking up at around the same time, brushing teeth, washing face, toileting, changing clothes, having breakfast, playtime, exercise time, etc, all the way to bedtime.
6. Challenge: How should we communicate with our child?
Approach: Some autistic children may have delayed speech, and some remain silent for much of their lives. Look out for nonverbal cues. Look at their facial expressions to determine their mood. Look out for body language, their gestures, their responses to food, toys, and other activities. If they are not looking at you, turn the head to look at your face. Use a combination of visual and auditory clues to communicate, supplemented by your supplying the words to describe the activities or objects.
Try not to spend too much time watching television, playing on the mobile phone, or laptop computer. Anecdotal evidence suggests that such activities do not stimulate communication or speech.
7. Challenge: How to optimize learning?
Approach: Find out their strengths and weaknesses. What do they enjoy? Do they enjoy certain activities like drawing, playing the piano, or constructing objects with Lego? Make playtime fun, but cap the time devoted to any particular activity, so it does not become obsessional.
8. Challenge: How to tackle undesired behaviours?
Approach: Some autistic children indulge in prolonged repetitive behaviours, like clapping, flapping hands, rocking, and even self-injurious activities. They may make unusually loud noises, or scream continuously. One approach is to distract them and try to persuade them to take part in another activity or play with another toy. Try to discover if there may be some recognizable triggers for these behaviours. For example, is it in response to your refusal to give them what they want? Maybe you do not realise what they really want, and they are unable to express themselves in words. So in frustration they start screaming.
In the case of self-injurious or dangerous behaviours like head-banging, biting, pushing, or scratching, you need to stop these activities immediately. If necessary, make an appointment to consult a doctor.
9. Challenge: Should we engage in special therapies
Approach: The special therapies referred to include speech and communication therapy, occupational therapy, physiotherapy, music and art therapy. Most special schools, nurseries and kindergartens with interest in autistic children, should be able to provide some of these therapies. When you have identified those areas that you think your child might need extra encouragement and help, then you might like to discuss if they are really beneficial, and where to find these therapies.
10. Challenge: A brief overview of the autistic child’s future.
Approach: Different stages of the autistic individual’s life will require different approaches. The young autistic child may need early intervention centres that may help in several ways, including giving family support, and providing speech therapy, occupational therapy, and special education. Opportunities for socializing needs to be organized, so the child can mix with other children, be given opportunities to engage in art, music, sports, and outdoor activities. The long-term future may require drawing up a will, and setting aside some funds in the event that the individuals are unable to take care of themselves, especially after the parents have passed on.
11. Challenge: How not to be overwhelmed by too much information on the internet.
Approach: It is a typical response for parents to be overenthusiastic in seeking (too much) information for the sake of their child on the world wide web. The internet is a vast storehouse of information, but unfortunately not all the information is accurate. It is important to check the facts to verify whether they are reliable. Also discuss the data with other professionals to evaluate their accuracy and relevance.
12. Challenge: Strain on marriage
Approach: Looking after an autistic child can be a heavy strain on one’s marriage. Sometimes getting relatives and friends to help out can alleviate the problem. If not, one may have to look for marital or family counseling for help.
13. Challenge: Who would be best to confirm a diagnosis of autism?
Approach: The diagnosis of autism spectrum disorder should be an experienced paediatrician, psychiatrist, or psychologist familiar with autism. A teacher or a general practitioner, or another parent, should also be able to guide you. You can also search the internet for online websites that can lead you to resource centres, special schools, and government websites dealing with autism. These websites might be able to provide information, advice, and direct you to the appropriate psychologists and medical specialists to obtain a diagnosis.
The Autism Resource Centre (ARC) was set up specifically to focus on the education of autism for families and autistic individuals. ARC has also been running Certificate and Diploma in Autism courses for educators from both mainstream and special education institutions. They also run parent training workshops for parents and the public.
14. Challenge: Which pre-schools and schools to choose from?
Approach: There are several factors to consider. This includes which end of the autistic spectrum your child comes under. Are there any co-morbid problems, like attention deficit hyperactivity disorder, epilepsy, aggressive behaviours, etc? How far is the school from where you live, and is transport provided? Best to visit the schools and discuss your child with the teachers, principals and other parents.
15. Challenge: How to find help for low-income families?
Approach: Some children with autism require special education, early intervention, and other therapies, but these can be quite costly. What kind of help is available for low-income families who are raising children with autism? Fortunately, there are government organisations and charitable foundations that can give a helping hand. See the list below.
CONCLUSIONS
Teamwork is the foundation of coping with autism. The good news is that there are now quite a number of organisations, schools, psychological and medical services that can help. The problem is trying to find what would be best for your child and for your family. The internet can overwhelm you with too much information, and the most attractive site may not offer the best advice or therapies. Discuss it with as many people as possible, including teachers, psychologists, doctors, and other parents.
Final advice: Love your child, and don’t give up!
RESOURCES
Singapore Autism Resource Centre. https://www.autism.org.sg/
Singapore Rainbow Centre. https://www.rainbowcentre.org.sg/
Singapore St Andrew’s Autism Centre. https://www.saac.org.sg/
Malaysia Autism Link. https://www.autism.my/
Malacca Malaysia. http://www.wingsmelaka.org.my/
UK National Autistic Society. https://www.autism.org.uk/
Free Online Courses:
http://www.autism-society.org/living-with-autism/how-the-autism-society-can-help/online-courses-and-tutorials/
Floortime DVD Autism Training: https://www.amazon.com/Floortime-DVD-Training-Basics-Communicating/dp/B0009XZITG
Online resources screening tools:
0-2 years – http://asdetect.org/
18 months – Checklist for Autism in Toddlers (CHAT)
https://www.rch.org.au/genmed/clinical_resources/CHecklist_for_Autism_in_Toddlers_CHAT/
4-11 years – childhood Asperger syndrome test (CAST)
https://www.autismresearchcentre.com/project_9_cast
Ken's Reflections 
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