Unlike most Instagrammers, Iman Wan Tuck Meng doesn’t post photos and videos of food, travel or pets with smiley emoticons on his page.
His posts are about the realities of his life, focusing on the ups and downs of raising Adam Wan Mun Yu, his 18-year-old son with severe autism.
“Children with severe autism have behavioural and sensory issues. They live in a world where they are not understood by people. Not many individuals can comprehend my family’s struggles and joys to bring up a low functioning autistic child,” says Iman, 53, who set up his Instagram page (@adamsautismfamily) two years ago.
Iman’s postings on autism aren’t sugarcoated. Neither do they contain edits, re-enactments or any app enhancements.
“The postings are authentic. It ranges from Adam’s meltdowns, family members having to work together to handle his behavioural crisis to happy moments,” says the former music executive who quit his job in 2006 to look after his son.
Since 2017, he has been working from home, operating an online business specialising in therapeutic essential oils. He also actively promotes his business on his social media feed.
Adam was diagnosed with severe Autism Spectrum Disorder (ASD) and Attention Deficit Hyperactivity Disorder (ADHD) when he was two years old. He is non-verbal, lacks social skills and tends to present aggressive behaviour when agitated.
Iman does not hide his family’s struggles. There are photos of scratch marks on Iman and his wife Norhaida Hasan’s face, and bruises on their limbs, that were the results of calming and restraining Adam during these episodes.
A number of Iman’s outbursts has been documented, showing him screaming, shouting and biting his parents. The images may be disturbing to some people but in reality, they are part and parcel of the Wan family situation.
“A large number of Malaysians lack awareness and knowledge of autism. When an autistic child acts up in public, people assume the child is badly brought up. People need to understand autism before making assumptions,” says Iman who also posts updates on his Facebook account, adamsautismfamily.
Dealing with severe autism
Through his social media postings, Iman hopes to create more awareness on autism.
“Many organisations have campaigns to create awareness on what is autism. Most of the time, the focus is on savant syndrome and how these special needs children excel in certain skills. While these campaigns are great, there is not much highlight on the challenges of raising children with severe autism,” says Iman, who lives in Petaling Jaya.
A meltdown is different from a tantrum, and has nothing to do with discipline or parenting abilities. A meltdown usually happens when a person with autism is unable to cope with sensory overload. Trigger factors include loud music, bright lights or crowded places. A meltdown is one of the ways that an autistic person copes or displays their emotion when overwhelmed.
According to Iman, Adam’s meltdowns can last anything between 15 and 30 minutes.
“Three or four people need to help to calm Adam after a meltdown. Two people need to hold his head and legs, as I try to talk to him. My son is very strong and it’s always a struggle to calm him down,” explains Adam who conducted the interview with StarLifestyle via video conferencing.
Iman was apprehensive about doing the interview in his home, out of concern his only son would not take well to strangers in their house. Adam’s injuries are undoubtedly painful but his parents take it in their stride. They love their son and have accepted Adam’s condition.
“Adam’s meltdowns are unintentional. Sometimes, it happens when we don’t pay attention to him, especially when’s he hungry or tired. Deep down, he is a caring and affectionate child. He gets along really well with his sisters, Arena and Ara,” says Iman, adding patience and a calm composure are essential when dealing with children with severe autism.
Iman is thankful his daughters have been supportive in caring for Adam. Given their circumstances, the girls have made endless sacrifices to help out with Adam. Unlike most girls their age, Arena, 19, and Ara, 8, have had to forego birthday parties and sleepovers with their peers due to their brother’s unpredictable temperament.
Iman shares this in one of his posts: “While many girls her age hung out with friends, Arena hung out only with Adam. She can’t even have friends over. Circumstances resulted in Arena falling behind in her social skills. She has spent her teenage years caring for her brother. Arena understands about life in ways girls her age, even grown ups may never. She has a heart of gold.”
Arena (@arenawan) tweeted in April 2018, “I’ve learnt a lot through this rough journey of having an autistic brother and to be honest, I’m grateful. Though it maybe sad, autism has taught me to be more confident, patient and thankful. I would never be the person and I today if it wasn’t for Adam.”
Sharing their journey
Often, parents of children with severe autism are overwhelmed by the responsibilities on their shoulders. Apart from having to juggle between work and family commitments, they also need to organise therapy sessions for their special child. They also need to be attentive to their special child’s challenges, while not neglecting their other neurotypical children.
Given their packed schedule, parents like Iman and Norhaida have little time to socialise.
“A large portion of our time is spent caring for Adam. With my son’s condition, we can’t have social gatherings at home. Since my wife and I hardly go out, we turn to Facebook and Instagram to stay connected with the outside world,” says Iman, whose initial Instagram postings featured mostly family photos, with a handful of Adam’s photos.
Whenever Iman posted updates on Adam, it garnered hundreds, if not, thousands of likes and encouraging comments.
“My wife and I were surprised that people wanted to know more about Adam. We began to realise that he is growing his own fan base.
That was the turning point that inspired us to use Instagram to create autism awareness,” explains Iman, who has over 291,000 followers on his Instagram account.
To date, he has posted close to 1,900 posts on his page. Most of Adam’s videos were recorded by his sisters.
But Iman’s Instagram postings aren’t solely on their family’s struggles. Fun and positive moments are also shared with followers, including outdoor games, birthday gatherings and Adam’s loving relationship with loved ones.
Above all, it’s the family’s unwavering love and empathy as they live bravely and sensibly with Adam’s autism that their followers find most inspiring.
It’s also great that they haven’t lost their sense of humour. One of Adam’s latest video posting is of them chasing after Adam who then decided to jump into a water feature for a soak… “Always an adventure,” Adam ended his story.
Over the years, their followers have also gotten to know Adam’s sisters, and they cheered Arena on when she took part in the recent Dewi Remaja contest and won the title most popular Dewi.
Other parents going through their own journey with autism have also found Adam’s posts informative and inspiring, finding comfort and solidarity in their shared experiences.
One thing for sure, there is ample support and well wishes for this family as they carry on and continue to live with Adam’s autism. – Additional reporting by Nur Izzaty Shaifullizan