What has autism got to do with me?
Why is it important that I should be aware of autism?
You may be unsure of the answers to the above questions but how we respond to autism is important because it can make a difference to the lives of individuals with autism and their families.
According to World Health Organisation (2018), 1 in 160 children have autism. In 2017, it was estimated that there were about 7.7 million children between 0-14 years old in Malaysia (Department of Stastistics Malaysia, 2017). So, that would give us an estimate of about 48,000 children with autism living among us. This not-so-small figure would mean that we are highly likely to meet someone who has a child with autism at some points in our life – our relatives, friends, colleagues and/or neighbours.
Parenting is never easy. Parents who have children with autism experience higher level of stress as compared to parents of children with typical development and other types of developmental delays (Estes et al., 2013). Unlike children who have physical, sight or hearing impairment, children with autism have challenges that are not immediately visible to everyone. Their difficulties with communication, understanding of social rules and sensory processing can interfere with their daily functioning. This can cause immense stress to their parents.
I asked a few mothers who have children with autism to share their experiences with me. In Mrs. Sani’s own words:
Having a child with autism is very challenging from time to time. The stress started from when our child was diagnosed, how to accept the reality that our child is not like other children, and how to tell our extended family and friends about our special son.
What can we as a community do about it? Zai recounted her blessings:
We are grateful that we’ve encountered a number of people who had knowledge about autism and understood our predicament as parents. These people even strived to make our child feel comfortable and secure with them, despite sometimes the response and actions of our child didn’t seem respectful to them. People were still being polite and warm even though sometimes our son disturbed their privacy such as when he suddenly sat at their table in a restaurant or when he wandered around in a train.
It will be helpful if the public could be educated and exposed to the typical behaviours of a child with autism, so that they would not be prejudiced and immediately label our child as ‘troublemaker’ or ‘weird’ due to his unusual demeanours.
Dina has this to say:
Honestly, I can’t force people to go read up about autism in order for them to understand what it is all about. Even without both acceptance and tolerance, there is at least one small thing that the public can do, which will make a great impact to my child, my family, other families with special needs children and every single human being on earth, special or not and that is, being KIND – Kindness in your thoughts, words and actions.
How can we then, be a kind community? Here are some suggestions from the parents.
We were having dinner when suddenly Cinta asked “Daddy, what is cacat?” Daddy explained and I then intervened too. She then said, “My friend said I am cacat.” I stopped chewing my food, was stunned and heartbroken for her.
Although my friend did not say it, I could see that she gave my son a “weird boy” look when we talked about him. It really breaks my heart.
Really hope people will not give me comments about my boys. “Your boys are very naughty. Gotta use rotan to beat them”.
Don’t comment negatively or label the children. Do…
- Teach your child about speaking nicely and not call them names because they are different.
- Praise the children. They too, are children who need us to affirm them.
- Greet the children with a ‘Hi’ and call their names as it can boost their confidence.
My husband and I are often called lousy parents by our relatives, and that we spoil our children.
I hope not to answer questions such as “Why got 2 autistic boys? Got family history? You did something wrong during pregnancy?”
Don’t blame or judge the parents. Do…
- Acknowledge their struggles and not expect them to do more than they can.
- Understand that the children need adjustment to new situations and give their parents time to help them. This can be social events such as parties and weddings, and new experiences such as taking a flight.
- Understand that parents often have to deal with guilt and self-blame. We can help by not adding more guilt onto them.
People make such a big deal of me not coming to family events, kenduri, reunion because I have to prioritise Hana’s schedule, her needs.
Don’t make it hard for the parents. Do
- Understand that the children need to attend multiple therapies and require a consistent routine.
- Understand that the children need to be prepared in advance (visual schedule, social story, etc) to help them prepare for the unpredictability of social events.
I have always, always tried my very best to be on time. But sometimes, things happened unexpectedly, and are not smooth at home, such as when suddenly Hana becomes upset and tantrum or fall sick. I hate being late and being judged on my competency.
Don’t judge the parents as being incompetent or uncommitted to work. Do…
- Ask them how’s their day and if you can help.
- Give them a cup of coffee. They might have had a hard time before going to work.
People stare at us when we are dealing with Hana’s behaviour in public.
Mrs Sani says:
If our children have tantrums and meltdowns in public places and we let them be for a moment does not mean we do not love our children.
Don’t stare. Do…
- Smile sincerely and walk away, or
- Offer to help.
We acknowledge that it is impossible to expect people to behave naturally (or totally ignoring us) when our child is making unusual sounds or movements in public.
I wish for more support from the general public when an autistic child out of the blue has his stimming (e.g. rubbing hands vigorously, shaking hands or flapping hands).
Don’t label the children as weird or give them peculiar looks. Do…
- Smile and acknowledge the parents, or
- Say positive notes, such as “It’s ok boy, we know you are special, we understand you.”
Recently there was a close relative’s daughter’s wedding reception. All the children were placed in a separate room from the adults. That room had games, clowns and children’s food. But Prashantt alone was asked to sit among the adults so that I can look after him.
There are other parents bringing their child to the playground who understand that our son sometimes will not use the equipment correctly or play according to the normal flow. His acts will make their children and other children lose patience or get frustrated.
Don’t exclude. Do…
- Ask if the children would like to join. Their parents will tell you if they think their children would have difficulties.
- Invite the children to parties and ask how you can make the party autistic friendly. The children need friends too.
- Teach your child to be a friend. Your child can help guide them in learning how to play together.
It is every parent’s hope that our community can support, include and accept their children for who they are. As Hayati puts it:
I thank God for all the support that I have from all – family, extended family and friends as well. Haziq has never in his life been excluded in any family gathering, as well as when I brought him along when I have my get together with my school friends. Their children would try to make friends with him, and his response will always be his laughter and smiles. Credit should also be given to his friends in school. He has new friends this year.
Can we show our support to these families of children with autism? As Eva concludes:
I am really glad that I have two boys with autism. We (just) need help and support along the way.
I would like to thank all the proud parents of children with autism for their contributions to this article.
- Dina, mother of Cinta (9 years old) and Kasih (7 years old)
- Eva, mother or Chee Eng (8 years old) and Chee Heng (5 years old)
- Hanem, mother of Hana (8 years old)
- Hayati, mother of Luqman Haziq (9 years old)
- Joena, mother of Nickson (8 years old)
- Malar, mother of Prashantt (8 years old)
- Mrs Sani, mother of Safiyy (9 years old)
- Zai, mother of Zarif (8 years old)
Department of Statistics Malaysia. (2017). Population & demography. Retrieved from DOSM website: https://dosm.gov.my/v1/index.php?r=column/ctwoByCat&parent_id=115&menu_id=L0pheU43NWJwRWVSZklWdzQ4TlhUUT09
Estes, A., Olson, E., Sullivan, K., Greenson, J., Winter, J., Dawson, G., & Munson, J. (2013). Parenting-related stress and psychological distress in mothers of toddlers with autism spectrum disorders. Brain & Development, 35, 133-138.
World Health Organisation. (2018). Autism Spectrum Disorders. Retrieved from WHO website: https://www.who.int/news-room/fact-sheets/detail/autism-spectrum-disorders
Written by Ms Yong Ennie