From Surviving to Thriving: How to Truly Support Your Autistic Child

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Worried about your autistic child’s future? A paediatrician shares expert advice on small but powerful steps that can help them grow, thrive, and build independence—one day at a time.

WORDS LIM TECK CHOON

FEATURED EXPERT
DR SHARIFAH AIDA ALHABSHI
Consultant Paediatrician
KPJ Sentosa KL Specialist Hospital
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Consultant paediatrician Dr Sharifah Aida Alhabshi says that, when it comes to raising a child with autism, there are no fixed rules.

“Every child with autism is unique, and what works for one set of parents may not work for another,” she explains.
She adds: “Parents usually develop a comfortable routine at home that allows the child to thrive, by observing and becoming familiar with the child’s habits and preferences as well as by trial and error.”
She, however, cautions parents not to make any dietary changes or restrictions for a child without consulting a dietitian or paediatrician first, as any disruption in the child’s nutritional intake can very well affect his or her physical as well as mental development.

While there are no rules, there are some general guidelines about the needs of a child with autism, as well as yourself, that you can take into account when carving out a healthy, loving environment for your child.

If you want to know more about autism spectrum disorder (ASD), join Dr Sharifah Aida as she shares facts and insight that will help parents understand better how their child with autism perceive the world around them.

Here are four essential needs of yourself and your child that should be met, along with Dr Sharifah Aida’s advice on how to meet these needs.

#1 LOVE AND AFFECTION

Not only will your child need your love and support, but you also need to feel loved in return.
This is only normal, as we as human beings need some form of validation to keep us going, especially when things are tough.
You are not being selfish to feel this way!

“Many parents grieve when they first learn that their child has autism,” Dr Sharifah Aida says. “This is normal, and it is fine to grieve.”

However, it is important not to be overwhelmed by grief—you need to also look ahead.

Understand Autism

Find out all you can about autism. Fortunately, these days it is easier than ever to locate information online.
Find out all you can about autism spectrum disorder (ASD), the treatment options and parenting styles.
However, don’t just blindly believe everything you read online, though. Check and double-check by talking to paediatricians and child psychologists too!

Understand Your Child

What scares or upsets them?
What makes them happy or calms them down?
What are the nonverbal cues (sounds, facial expressions, etc) that your child uses to communicate with you?

The more you understand what affects your child and how, the better you will be at creating a nurturing home environment for your child.

Accept Your Child with Lots of Love

Instead of focusing on how different your child is from other children, try to view your little darling’s quirks as a unique, special trait.
Instead of stressing out over their quirks, cherish and celebrate your small successes in establishing communication and trust with our child.

Most Importantly, Don’t Lose Hope

There will be times when you can get so frustrated that you feel like giving up.
All parents of children with autism go through frustrations and challenges, so you are not alone, so don’t give up!

This brings us to the next important need: support.

#2 SUPPORT

Children with autism as well as their parents thrive best when they have a strong network
of support.

Support Groups

The National Autism Society of Malaysia (NASOM) offers support groups and a variety of services for both people with autism and their immediate family members.
Additionally, there are many support forums and Facebook groups online.
Some parents also find blogging about their parenting experiences (both good and bad) a good form of therapy.

NASOM (www.nasom.org.my; link opens in a new tab) is a charitable organization that offers
support to both people with autism and their immediate family members.
In addition to providing counselling and offering support groups, they also provide vocational training for people with autism in order to become reasonably self-sufficient.
Dr Sharifah Aida recommends parents of children with autism to get in touch with NASOM and take advantage of their support to bolster your own efforts to give the best to your child.

Give Yourselves a Break

Take little “just me” moments, such as catching up on your favorite shows or just chatting over a cup of coffee with your partner once the kids are asleep.
Many support groups organize family outings. These are perfect family getaways, made more enjoyable by the fact that you will be relaxing with other parents who understand what you and your child are going through.

Counselling

You understandably may not want to consider another therapy when your child already has to
go to several on a regular basis.
However, raising a child with autism may take a toll on your relationships with your partner, your other children, and even your career, as you may even find it increasingly harder to deal with stress on a constant basis.
Under such circumstances, it will be good to have someone to talk to, hence, the importance of belonging to a support group.
Dr Sharifah Aida adds that the paediatrician can be a good listening ear and a shoulder to cry on if you want to vent.
However, if the situation continues to deteriorate, you should consider seeing a family counsellor for further support and advice.

#3 STABILITY

“Children with autism thrive on routine,” says Dr Sharifah Aida. “Anything that creates a sense
of security or stability appeals to them.”

Reinforce Consistency

Your child may need some prodding to practice what they have learned
during therapy while at home.
Therefore, find out what your child has learned after every session, and discuss with the therapist how you can further enforce these lessons at home.

Establish a Routine

Create a routine and stick to it as much as possible, preferably every day.
Have your child wake up, eat, go to school or therapy and sleep at regular times every day.
Keep disruptions to a minimum, as these can upset your child.
If you are aware of unavoidable changes ahead of time—for example, starting a new school or moving to a different address—prepare for it in advance, perhaps by discussing with our child’s therapist how to best help your little darling cope with the change.

#4 SAFETY

Because your child may not understand the cues for danger or the boundaries separating acceptable and dangerous behaviours, you should take precautions to ensure that your child is safe.

Make Your Home Safe

Whenever possible, give your child their own space to relax and feel safe.
Some parents use brightly-coloured tapes to mark off areas that are off limits (such as the bathroom and the kitchen), while others prefer to install railings, gating and other safety features around the house.

Keep an Eye on your Child

If your child tends to wander off, find out the cause of this wandering. For example, some children with autism may be fascinated by water, and may wander off into the bathroom to play with the tub or, if you are outdoors, walk off to the pond without your knowledge.
All of these are potentially dangerous situations, and you should take necessary steps to minimize the danger. For example, for your child fascinated by water, you may want to avoid bringing your little darling to places with large bodies of water and allocate “play times” with water for the child under the close supervision of an adult.

Inform Your Trusted Neighbours

They can help keep an eye on your child, especially if your child is prone to wandering outside the house.

Tell the School

Inform in writing the school principal as well as your child’s teachers.
Let them know of the things that fascinate as well as trigger your child, whether your child has a tendency to wander off, and whom to contact should emergencies arise.
Keeping a close and good rapport with the principal and teachers is a good way to enlist their continuous aid and support, as well as to encourage your child to bond with them.

A Mother’s Story

My son would once not even look at me, he would not talk. His body would become rigid and he would pull away if I hugged him. He would not respond to his name and he would self-harm; and he would use my arm like an extension and just hold it and use it to reach something. I too, once felt he did not love me, or even know I was his mother, and I too thought he did not even know I loved him.

When he was 5 or 6 years old, I was so touched and so shocked, when he gave me this sheet of paper he made all by himself. There was a small heart with the word “MOM” in the middle. He had never told me “I love you” in words, but looking at that paper, it was such a beautiful moment, it really was.

So never give up. It is all in there even if they do not write it, show or say it now, it is all in there in their beautiful hearts.

THE JOURNEY AHEAD

Navigating love and autism is never going to be easy, as there will be ups and downs.
There will be moments of pure frustration, when you feel like you have reached a breaking point.
However, there will also be moments when you will feel so proud of what you have achieved together as a family. It just feels like there is nothing that can stop you from doing anything.

Dr Sharifah Aida assures us that, no matter what, you should hang in there, stay
strong, and have plenty of heart. In the end, it will be worth it.

This article is part of our series on autism and the parenting journey one takes with a child with autism.