KUALA LUMPUR, April 15 – Dr Izam Suziani thought her youngest child would enjoy himself at a PlayPlus cinema because of its kid-friendly atmosphere, which includes an indoor play area with slides, toys and other play structures.
However, the moment they left the cinema, her child, who is autistic, appeared to throw a fit, rolling on the ground, yelling and crying.
“At the time, I was so stressed. I also felt embarrassed. Embarrassed because people were looking and we can’t stop people from judging,” said Dr Izam during a webinar on Insights into Autistic Meltdowns Through Lived Experience organised by the Autism Inclusiveness Direct Action Group (AIDA) last December 8.
“I felt guilty. Why couldn’t I control my child? And also, why does he keep acting this way?”
She thought her child wanted something which he couldn’t get and was throwing a tantrum. The former doctor who left her 20-year medical career to focus on raising her youngest child who was diagnosed with autism at the age of two, now understands that what her child experienced was a meltdown.
“Basically a meltdown is something that occurs when an autistic person feels too stressed. So, (it happens) when they are feeling overwhelmed for any reason but it is not intentional and it is not aimed at getting attention.
“If we don’t understand what a meltdown really is, we can easily become stressed too and blame ourselves and also our children.”
She said in the case of the PlayPlus cinema, she thought the environment would be suitable for her child because there were other children running and playing around but excessive stimulation resulted in him having a meltdown.
Meltdowns Not Caused By Bad Parenting
The webinar’s moderator, Chai Jingyun, who identifies as an autistic self-advocate and is a member of AIDA, said autistic meltdowns are largely misunderstood and are often conflated with tantrums.
“This misunderstanding can prevent those experiencing meltdowns from getting the right support and can leave those around them feeling unsure on how to best help,” she said.
“More importantly, meltdowns are often a response to overwhelming external factors and can be just as distressing for the person experiencing them as for those witnessing them.”
Once she understood what a meltdown is, Dr Izam said she learned to change how she reacted in response to a meltdown.
“I changed my mindset by accepting that meltdowns are not something that can be controlled. It is something that has to happen when the children are overstimulated. And it is not caused by bad parenting.”
She said by understanding what causes a meltdown and what the person having it is experiencing, she becomes less angry and no longer embarrassed when it happens. “Because I know this is something that is natural. So, I accept it with an open heart.”
Dr Izam said she is now calmer during meltdowns and will try to identify what triggered it. However, she explained that meltdowns may not occur solely because of something in the moment, but may be due to a confluence of factors that have been building up over time.
Meltdowns Can Manifest In A Variety Of Ways
When a meltdown happens, Dr Izam said she will try to control the situation as best as she can.
“For example, if we are in a shopping mall, I will try to move my child to a location that’s more calm, with less noise and where the lights are not so bright.”
She added that it is important to support your child not just during a meltdown, but also afterwards.
While she accepts that meltdowns will occur, Dr Izam clarifies that it doesn’t mean that the child should be left alone to deal with it.
Responding to a question from an audience member who asked if it would be alright to leave the child to it in the hope that they will get used to meltdowns, she said, “I believe all meltdowns must be managed. Because while they may seem small initially, that’s just our judgment of what the child is going through. So for me, even the smallest meltdown has to be managed.
“And that means we find out what the triggers are and try to avoid them. Because we don’t want something like this to be bottled up to the point that one day it becomes uncontrollable.”
She said that meltdowns can manifest in a variety of ways, not just physically as exemplified by her child upon leaving the cinema, but also mentally and emotionally, which can lead to a complete shutdown.
“However, in my opinion, the way we address it is the same. That is, we must avoid triggers and we must manage them, and not bury our feelings.”
“I Found Myself In An Endless Cycle Of Self-Blaming”
Khoo E-May can personally attest to how detrimental it can be to shut down.
“Most of the time in the past, I always put my best effort to suppress myself by shutting down,” she said.
She had a lot of thoughts running though her mind but felt she could not articulate her feelings accurately. As a result, she wound up internalising them and suppressing her emotions.
“I will appear happy, bubbly, cheerful, even more caring than usual. Crack a lot of jokes to others, even though I have spent countless times battling my harsh thoughts, questioning and worrying that I will bring burden to others,” said Khoo, who is a Human Resource Development Corporation (HRD Corp) accredited trainer and graduated with a degree in psychology.
“But by repeatedly forcing myself to shut down and masking as well, I found myself in an endless cycle of self-blaming, having dark thoughts that pushed me to hurt myself and wanting to end my own life.”
When she has voiced out her thoughts, people have responded by saying that she is selfish, especially when she tells them she struggles with suicidal thoughts.
“When all the time, I’m not a selfish person if you know me,” Khoo said. “It feels like to me, people don’t understand when I’m struggling with my thoughts.
One of the slides for her presentation depicts a person in a suit with black smoke spewing out of their collar where the head is supposed to be, creating a cloud of blackness in the air above. Khoo said that is how a meltdown feels to her. “It feels to me that my head is very heated. And I feel like my brain is burning.
“My meltdowns come in the forms of biting, scratching, cutting myself, or I bang my head to a wall or table,” said Khoo, who explained that she was previously misdiagnosed with schizophrenia. She was only diagnosed with autism in October 2023.
Khoo, who has been receiving psychotherapy care since 2014 and medical treatment based on her earlier diagnosis since 2017, said she often felt trapped. “Like I’m trapped in my body and I could not express (myself).”
A Response To Pressures Building Up Over Time
She concurred with Dr Izam that the “last thing that happens” is not the sole reason for the meltdown. A meltdown is usually a response to pressures that have been building up over time.
“It’s a built-up response and I do not wish to have a meltdown. I’m not giving people a hard time. In fact, I’m always trying not to give people a hard time when I am having a hard time myself,” said Khoo.
She added that her environment, being hard on herself, and the increasing expectations and demands that people have on her are the reasons that contribute to the meltdowns.
After a meltdown, Khoo said she would feel anxious, concerned about what people think of her. However, she added that the meltdowns will not “magically disappear” because she tries to cope with it.
“I cannot control this. As an autistic (person), I often feel unworthy of love, undervalued and disabled by the environment I live in. But I tend to forget that I’m also a human being who deserves love and equal rights. So, for me, my journey of recovery is (through) acceptance,” said Khoo.
“I realise that lots of challenges are happening externally, where it’s outside of my control. I feel like people want to fix me and want to train me to be stronger so I won’t get bullied and I can survive on my own.”
While Khoo said she appreciates their good intentions, the result is that she always feels like “I’m never enough and I’m not strong enough in their eyes.”
However, through gradual and increasing self-acceptance, which she cultivates through education and advocacy, Khoo said she is now able to see herself as a capable and resilient individual.
Harmful To Bottle Up Emotions
Jerry Tong said he began recognising the signs of a meltdown while in secondary school. Faced with the pressure to succeed academically, he floundered under the weight of an inferiority complex that made him feel inadequate compared to his peers.
As a result, he said, “tantrums, emotional outbursts and crippling depression would kick in like a thundercloud appearing suddenly on a sunny day.”
Although he managed to pass his secondary education with six credits in the IGCSE (International General Certificate of Secondary Education) exams, Tong once again felt the pressure to excel in university and it affected his mental health severely.
He would be consumed by an “influx of emotions”, particularly when it came time to complete his assignments and sit for exams.
At the time, Tong said his mental health awareness was at its infancy and it wasn’t until he spoke with a counsellor that he was able to put his meltdowns into perspective, recognising that it was peer and academic pressures that took a toll on him and that it could happen to anyone.
“I realised that in order to manage your stress and become successful you have to know that mental health is an important factor too. Exercise, quality sleep, and dietary habits are necessary in maintaining mental health.
“So, it’s another reminder for me to not bottle up my emotions or hide them since they can be very harmful in the long run,” he said.
A graphic designer by profession, Tong said he finds comfort in and enjoys watching Japanese anime and Disney films as they depict characters who show their emotions and also experience meltdowns.
He is inspired by the characters’ ability to bounce back from their lowest points with the help of people they are closest to.
Aside from the comfort of his beloved plush lion Leo, Tong, who discovered his talent for art at a young age, said his coping strategies include drawing and sketching.
Deep breathing techniques and yoga have also helped him develop a healthier mindset. He is also fortunate that his workplace accommodates his need for calming music and low lighting to help him stay focused.
Emotional Overload, Rage Attacks
While she is not autistic, Ho Lee Ching identifies as a neurodivergent person who lives with Tourette’s syndrome, attention deficit hyperactivity disorder (ADHD), obsessive compulsive disorder (OCD), and other co-occurring conditions.
Tourette’s syndrome is a neurological disorder that causes the person who has it to have tics, which are sudden twitches, movements, or sounds that are uncontrollable.
Ho, who founded Teater Untuk Semua (theatre for all), a research and documentation project for more accessible theatre training, said that her experiences with the various conditions “deeply shaped my understanding of stress, regulation, and how I support others when I facilitate any theatre or movement session.”
There are similarities between her condition and autism, according to Ho. “In the Tourette’s syndrome world, we experience what we often call emotional overload or rage attacks, which from my learnings are actually quite similar to meltdowns.
“So these typically happen when our nervous systems are overwhelmed by environmental stressors or too much demand.” Ho said she experienced such episodes very commonly as a teenager.
“It was quite a scary place for me to be in. I would cry and yell and wail and throw things and hit the wall, hit myself and others.”
Due to the tics, Ho said her body is always in a state of tension on a day-to-day basis. “This constant tension translates into stress in my nervous system, making it difficult to regulate. When you add external stressors, like too much overlapping noises, too little space for the clothes I wear, the demand is big; my body gets even more tense, which then actually makes me tic even more.”
As a result, her body ends up in a never-ending cycle of stress.
While she did not understand what was happening with her body as a teenager, Ho said she began to lean into activities like creative arts, sports and movement because it made her feel good.
This led her to become more involved with movement work and learning about the nervous system.
Neuroception is the body’s unconscious ability to detect safety or danger in the environment, Ho explained.
“We do this automatically, without thinking and whether you realise it or not, our body is constantly responding to a lot of things. If the body senses safety, it will shift into a calm regulated state, while if it senses danger, it will activate a stress response to prepare you for survival.
She gave the example of a baby crying when it is held by a stranger, explaining that the infant may have an inkling that the unfamiliar is dangerous. Another example would be stepping back immediately when we encounter a fire.
Conditions, Situations That May Appear Threatening To Neurodivergent People
However, everyone “neurocepts” differently, according to Ho, who added that neuroception is also shaped from past experiences. What can appear to be dangerous to some, may not be to others.
“For some of us neurodivergents with neurodevelopmental conditions, we neurocept danger when perhaps we’re in a space that’s too crowded or too noisy.”
In her presentation, Ho explained that conditions or situations that may appear threatening to neurodivergent people include crowded spaces, constant or overlapping noises, too much movement or activity, too much cognitive, emotional and social demands, uncomfortable clothes, being in small spaces, and feeling too hot.
“All of these environmental factors combined with the social, cognitive and physical demands can lead to our systems becoming overwhelmed, which can then result in a meltdown.”
In a simplified way, being overloaded is just like in the movie Inside Out where all the emotions gather inside the headquarters, which is the brain Ho explained.
When we experience a stressful event, it will trigger an alarm in the brain called the amygdala, which will activate the freeze shutdown response that is managed by the autonomic nervous system.
“The autonomic nervous system is part of our nervous system that controls our involuntary actions like our heartbeat, breathing, digestion and sweating,” said Ho.
“So, these actions occur without a conscious effort, without us needing to tell our organs like, heart you need to keep beating now.”
There are three branches under the autonomic nervous system: the sympathetic nervous system and two parasympathetic nervous systems, which are ventral vagal and dorsal vagal, according to Ho.
She explained in her presentation that the sympathetic nervous system is responsible for the fight or flight response, while the parasympathetic nervous system (vental vagal) activates the safe and social response, and the parasympathetic nervous system (dorsal vagal) is what causes the freeze shutdown response.
“The freeze shutdown mode is where some of us may go during a meltdown or rage attack. So we verbally shut down, feel hopeless; we can dissociate, we just don’t feel like moving. When we look at animals, this is when they play dead.
“When we are undergoing fight or flight, or shutdown, our thinking part of the brain gets less blood flow and support, which makes it a little bit harder to think clearly or rationalize better.
“But of course this depends on the degree of the fight or flight, or shutdown we go into,” said Ho, adding that the window of tolerance varies from one person to the next.
“For autistic individuals and myself, our window of tolerance is often smaller, due to the naturally higher cortisol levels in our system, and also because of the constant sensory and environmental demands of the world.”
However, fight or flight, and shutdown is not necessarily a negative reaction, said Ho, adding that it is part of the natural stress cycle. “It is because our body is protecting us.”
Meltdowns Are Alarm Systems To Protect Our Brain
Ng Lai Thin, project lead at the National Early Childhood Intervention Council (NECIC), agrees with Ho that “meltdowns are alarm systems to protect our brain.” She quoted Maxfield Sparrow, an autistic author, who wrote: ‘I melt down because something in my environment is intolerable and I’m having a normal reaction of pain’.
“Credible studies have shown that a large majority of autistic children and adults have sensory processing differences.
“But unfortunately, a lot of buildings and common spaces can be a sensory nightmare to autistic people,” said Ng, who has a Masters in Special and Inclusive Education and a Bachelor of Education in Psychology from Help University.
Many autistic persons and also people with ADHD are actually monotropic, according to Ng. She explained that monotropism is a theory developed by autistic researchers.
It posits that a monotopic person focuses on fewer things at a time compared to a non-monotropic person or polytropic individuals.
“And for them, shifting between channels of attention can be very difficult and takes up a lot of their energy.”
Ng said another way of understanding autism meltdowns is through the energy budget lens.
“When a person is very low in physical and mental energy, and most of us can relate to that, we have less energy budget to cope with stress and triggers.
“Because autistic persons often find themselves in overwhelming, sensory unfriendly, socially demanding environments, all these take away a lot of their energy budget and they go into meltdown more frequently than non-autistic people.”
Prevention is very important, said Ng, who has a neurodivergent sibling and writes for the OKU Rights Matter Project.
“We can do that collectively as fellow human beings by creating a safe and inclusive environment that accommodates the needs of autistic individuals.”
If you are feeling lonely, distressed, having negative thoughts, and struggling with other mental health issues please contact any of the following hotlines for free and confidential support:
- Befrienders: 03-76272929 (available 24 hours every day). A full list of Befrienders contact numbers and state operating hours is available here: https://www.befrienders.org.my/centre-in-malaysia.
- Talian Kasih at 15999 or 019-261 5999 on WhatsApp (available 24 hours every day)
- Mental Health Psychosocial Support Service (03-2935 9935 or 014-322 3392)
- HEAL Hotline 15555
- Buddy Bear 1800 18 2327 (BEAR) (for children and teenagers from Monday to Sunday 6pm to 12 am)
