Often, when parents are given a diagnosis of their child’s disabilities, the feeling is of despair or guilt. Some give up after a while. Therapy can be expensive, and perhaps regular schooling is not an option, writes Latisha Merican. This is the last of a 3-part series, the first of which is here and the second part is here.

However, developmental psychologist Howard Gardner’s Theory of Multiple Intelligences states that we are intellectually different, with the ability to develop multiple intelligences, which then follows that methods of teaching should be varied. Unlike the traditional passive classroom approach where all children are expected to learn by sitting quietly, listening to the teacher up front and taking notes from the board, and then tested on the same subjects in the same way, there are actually eight components of intelligence: spatial, bodily-kinesthetic, musical, linguistic, logical-Mathematical, interpersonal (social intelligence), intrapersonal and naturalistic.

A child who is not thriving in school may be inclined towards other forms of learning and interests and should be encouraged. Maths for example, a subject feared by many, is taught the same two-dimensional way. However, when I teach lower primary Maths, I incorporate visual and experiential learning and combine it with life skills. Fractions is taught by figuring out how to share twelve donuts equally among five persons, or by baking a simple recipe which would be halved or doubled. Instead of expensive manipulatives, skills are developed using baking tools and ingredients – measuring, pouring, whisking and washing up afterwards. The learning outcome of a topic on fractions is not confined to just numbers, but life skills, hand-eye-coordination, and perhaps most importantly, the discovery of a new interest or innate talent.

While Mirza was superb in Maths and the Sciences and did not require outside help, his lack of coordination and struggles in taekwon-do class induced me to engage Marcel Fabian, a special needs teacher certified in several martial arts disciplines as well as other sports. Marcel identified the disconnection between Mirza’s (and Shiraz’s) upper and lower bodies resulting in feeble turning kicks. He demonstrated step-by-step instructions on how to first rotate the shoulders, then the waist, so that maximum centrifugal force is generated. A year on, with Mirza’s determination and Sensei Marcel’s coaching, I was told by Mirza’s taekwon-do teacher Sir Faisal that Mirza’s reverse hooking kicks were awesome.

Since then Marcel became the designated physical activity teacher who has helped Mirza overcome physical and mental obstacles. From screaming in waist-deep water, under his calm tutelage Mirza has emerged a very confident swimmer. Marcel also teaches ninjutsu, whose components of flexibility and agility allow the child to learn how to roll and fall down safely. Sensei Marcel tailors his program to include parkour activities such as vaulting and balancing atop fences. 

Bushcraft

Mirza is currently doing two types of bushcraft; the first kind going solo into the jungle with Raman Bah Tuin, a Semai Orang Asli. He brings a parang and other essentials. Classes start with collecting firewood, shaving twigs and starting a fire, and then cooking food. Chicken is skewered onto sharpened bamboo stakes, rice is folded in bemban leaves which is then tucked in bamboo, along with sweet potatoes and corn, and water is added. Raman makes a cooking stand on which the stakes are placed while the bamboo is lodged upright close to the fire, boiling its contents. Along with the lesson of the day, Mirza also does his bit of community work by weaving bertam leaves and erecting shelters for traveling Orang Asli while Shiraz put his expertise in solar power to good use by making a portable light unit for the Orang Asli or Raman’s guests to use the toilet at night.

With Campmaster Vee, Mirza learns to be fully prepared before going into the jungle. He dons jungle boots, a hat, light-colored t-shirt and pants (bushcraft emphasizes lighter colors that allow contrast with blood red in case of bleeding), outer long-sleeved shirt, leech socks, a whistle, and is equipped with a knife. His backpack contains a water bladder, lunch, a notebook and pencil, a medical kit, ground sheet and mosquito repellent. He learns to walk safely in the jungle to the campsite where lessons are held. Currently he is learning about the plant kingdom. There was some excitement during one lesson when a wireless camera trap in the area picked up a sunbear meters away just minutes before.

While the goal of this class is jungle survival skills, Campmaster Vee, who has observed him, also imparts valuable life lessons, especially in managing his emotional self-control and insecurity issues. I was overjoyed to know that Mirza is making progress and is better socially. Although he is the youngest in class, as a senior, he has occasionally been given the task to teach the newer students, which helps improve his social skills as well as teaching methods.

Taekwon-do at Synergy Taekwon-do Club

Mirza enjoys taekwon-do at Synergy Taekwon-do Club with Sir Faisal Mustaffa, a fantastic teacher. Mirza is probably the only autistic child at the center, but Sir Faisal recognizes that he needs a little bit of extra help, and continues to encourage and support him. He has come far in his class, and is currently waiting to take his black belt 1^st Dan grading.

We explored mini tennis with Coach Ahmad Fairuz Ahmad Seth and discovered that after just a few lessons Mirza managed to play quite well and enjoyed it immensely. Coach Fairuz meanwhile, learned from Mirza about the magnus effect and ball trajectory.

Initially hesitant at first, Mirza enjoys modeling classes with ARP Elite Model. Teacher and former model Evelyn Nadal is very patient and has trained Mirza to walk calmly and sedately on the catwalk, resulting in a part in a fashion show, wearing designer outfits.

Because he is quite articulate, and has clear speech, I encouraged him to create videos for his YouTube channel. The aptly-named Mirza Michael’s Autistic Adventures has contents as diverse as his interests, from making fried rice to explaining fractals to his father who was just trying to have a peaceful lunch.

Mirza is homeschooled but academically learns on his own via Khan Academy and the various YouTube videos available.

Unfortunately, for the community at large, autism is still a stigma. Nowhere do I feel more at home than with the members of the Autism Café Project (ACP), an initiative started by Adli Yahya, whom I met two years ago. Through this, the children have taken part in bazaars selling Tareq’s awesome chicken rice. The chicken rice components and dinnerware are manipulatives used to help Mirza gain confidence, while taking orders improves their social and listening skills. Because in this ACP group every child has a different dis-ability and talent, everyone is accepted wholeheartedly and we progress together by supporting each other and finding opportunities.

Another form of support that I strongly encourage is to talk to a therapist. Shiraz started seeing a family and paediatric psychologist two years ago, as a supplement to parental guidance. Similar to positive parenting techniques, the psychologist starts by asking background questions and addressing the most urgent matters first. Later sessions include distress tolerance and emotions management, life skills are taught and transferred, with the ultimate goal being the individual’s ability to self-manage, with checkpoint sessions along the way.

Prior to discovering that his children have autism, when faced with a task or situation so simple or straightforward but yet defeated the children, Michael describes often feeling bewildered, losing patience and lashing out at the wrong things, and wondering if something is wrong with them. Now, he says that he KNOWS that something is wrong with them; however, the feeling is of a positive one. He is proud of the things they CAN do, he understands why they do what they do, and adapts the parenting and communication styles.

It is amazing that we subject our children to the same rat race regardless of their proclivities and abilities. School was a must to many, all children the same age were lumped into the same class, exams must be passed with flying colors and a child who can’t do an academic subject is deemed stupid. Shifting perspectives and priorities allowed me to discard traditional expectations. While I do find myself getting frustrated at someone’s inability to perform a task, we now focus our energies on finding out more about our personalities. We embrace, celebrate and enhance what innate skill and talent the children have, while providing support and encouragement and ways in helping them manage their dis-abilities.

I am thankful for my children, who are kind and thoughtful and who have taught me to be patient. This article was written with the assistance of Shiraz who helped provide more examples of his personal coping skills; Mirza and Shiraz’s psychologist who gave his expertise on the subject from a psychological point of view. Shiraz is now 19 and tutoring a child sitting for iGCSEs. He has made many friends, and not to my surprise, his friends are also similar to him, and polite and well-behaved.

If only there were more like us. – New Malaysia Herald

The post Autism Parenting: The Light At The End Of The Tunnel first appeared on NMH.

Unusual Emotional Reactions

We loved eating at a particular tom yum buffet restaurant. However, we realised early on that we could never manage to eat together as no matter whether we sat in the middle of the restaurant or near the exit, baby Shiraz would have an adverse reaction and spontaneously burst into tears. One of us always had to take him outside, while the other ate alone.

Once, we were at a grocery store with my in-laws. My mother-in-law carried him while Michael and I went to look at some items in a different aisle, out of earshot. Shortly afterwards a piece of slow music came on and I automatically stopped what I was doing and went looking for Shiraz, leaving a bewildered Michael behind. As I had expected, Shiraz had reacted to the music and had abruptly started wailing, alarming my mother-in-law. When she saw me rushing towards her, she became even more alarmed, and kept repeating, “what happened?” I quickly gathered him to my chest, told her that it was the music, and left the store quickly, calming him down. They joined us shortly after, clearly unnerved not just at Shiraz suddenly weeping, but my behavior as well. Nobody else was affected by the music, and on my part, I couldn’t understand why they weren’t. Didn’t they feel it as keenly as we did?

Unusual or Obsessive Interests

We did not know it at that time but he had an intense interest in almost anything electrical. At 2, he insisted on helping us assemble Ikea furniture using Michael’s power screwdriver. We lived on the 11th floor near MRT tracks and he would run to the floor to ceiling window each time he heard a train, hoping to glimpse a particular train he called the ‘milk train’ (known amongst train enthusiasts as the C651). With the frequency being very high, you can imagine how many times a day this happened.

In primary school he could do Maths very quickly in his head and refused to write down the working, inducing much stress in his teacher. One of his earliest favourite toys was a battery-operated Thomas and Friends modular train set. This was replaced by car batteries, which he nattered non-stop about in school and home while our brains slowly atrophied. He even found ways to incorporate trains and batteries into ALL his English Language essays, much to his teacher’s despair. I rolled my eyes when he started picking up LED lights and appliances discarded along the road, but we were really impressed when he took his bedroom off the grid and wired everything up to solar panels and upgraded his lithium iron phosphate battery bank bought with cash he received working at a mechanic fixing cars. He was so gifted that he took over the designated repairman job from his handyman father, friends dropped off their appliances for him to repair, and even Michael sought advice from him when restoring an antique KDK fan. He’s now studying aircraft maintenance engineering while continuing to tutor in Maths and Science.

Watching him spend hours on his interests brought back the “cannot sit to task” remark conveyed to us more than 10 years ago. While the teacher may have been correct in her statement, I have observed that the ability to sit to task also depends on interest. At that time he was doing a painting activity, which until now, he has not expressed much inclination for. When we brought him to the impressive Singapore Night Safari and zoo, we expected him to be awed by the animals. To our amazement he did nothing more than to take a quick peek at each animal before dashing off to the next enclosure. Later I learned that he empathized with them because they were not free, and because he couldn’t touch and connect to them, he lost interest. By comparison, he could (and would) spend hours in the pool, or tinker with electrical items. Therefore, a short attention span may not necessarily be a bad thing. Often, an autistic person has the complete opposite problem of being so much in the ‘flow’ of his interest that he is unable to be torn away from it. The challenge becomes to balance the two, as often, as adults we have to do things that are necessities but do not enjoy, like paying the bills.

Awkward Social and Language Skills

From the time they were babies, I used to talk to them incessantly, pointing out objects and always using proper terminology, and never resorting to baby language. A taxi driver remarked that Shiraz didn’t understand anyway, so why bother. In actual fact, they grew to be articulate and spoke in a very adult manner as a result of mimicking their parents’ language skills. Perhaps eschewing the kid-speak contributed to their inability to connect to peers in primary school. It could also stem from the fact that at this time children naturally group up based on common interests and race. My minority third culture Eurasian children unfortunately did not quite fit in anywhere and it broke my heart, seeing Mirza’s bushcraft classmates chatting among themselves, and him sitting away from them, clearly not part of the group, and not invited. He tells me that he is okay and fine by himself. It is not fine with me.

Shiraz often used to come to me sad, angry and puzzled at how the so-called ‘cool kids’ at his previous school, who were frequently badly-behaved, could garner so many friends and girl admirers. Shiraz and Mirza do not bully and do not understand nor participate in making fun of others. Unable to help, we can only assure them that they will perhaps meet like-minded people when they are older and more specialized in their fields of interest. As for girls, well, any intelligent and rational girl would choose and appreciate someone like Shiraz, who would give her the proper respect she deserves.

Autistic Traits and Managing Triggers

Personality- and characteristics-wise, we tend to be:

• literal. Jokes, sarcasm and innuendos escape or confuse us
• incapable of lying, most likely because we are literal
• differently-abled. Just like the apt Orang Kelainan Upaya status bestowed by the Jabatan Kebajikan Masyarakat, Shiraz and Mirza loved mazes and were able to ‘see’ the route of the trickiest ones within a couple of minutes. But when looking for items on a crowded grocery shelf, everything becomes a blur
• socially awkward and have social anxiety
• body-uncoordinated
• hypersensitive. We feel, hear and sense more intensely than others

Often, our hypersensitivity causes pain, unbearableness or overwhelmingness when triggered by the most benign of places:

• New and/or unfamiliar surroundings
• Supermarkets, crowded or buzzing places

However, triggers can also be:

• Certain types of music
• Sudden loud noises or sounds, such as firecrackers, lightning, or the sound of a pulldown shutter door closing with the bang!
• Change in schedule with little or no advance notice, or change in the usual route to a destination due to detours
• Someone doing something we perceive as wrong, or being confronted by an aggressive person
• Unwanted or sudden touch
• An incident that can cause panic like being alone in a lift which has suddenly stopped functioning

Triggers could be paralyzing, or could lead to an episode of:

• Screaming, yelling or tantrum-like behavior. Mirza once had a panic attack before bushcraft class. He was worried that he would not be able to do well that day and that he would disappoint Vee. Vee told me to leave, resulting in Mirza screaming at the side of the road. Later, Vee told me that he allowed Mirza to scream, as a way to deal with his overwhelming feelings of inadequacy. It lasted five minutes, after which, a normal day ensued
• Running away, or back and forth
• Banging their heads or bodies on the wall
• Flapping their arms
• Covering their ears or closing their eyes in an attempt to shut everything out

However, some of this behavior also manifests when they:

• Are excited (for example they might flap their arms when they see friends)
• Need to self-soothe or comfort. Mirza still sucks his thumb and occasionally pulls his hair
• Attempt to communicate and we don’t understand
• Need to address their sensory overload or lack thereof

Shiraz explains that he gets distracted when there is a lack of sensory input like in a too-quiet room or in a library, so he studies best in a train or bus, where the background drone of the engine and the movement help to focus.

It is worthy to note that not everyone who exhibits these symptoms has autism. A neurotypical person may be aware of his behavior and are able to stop or replace it, whereas an autistic person might not be able to.

An onlooker might be apprehensive and have difficulty comprehending what he is seeing. The assumptions are often “that parent is abusing the child” or the autist is labeled crazy or has been possessed.

As scary as it looks, it just stems from an inability to deal with the situation, or to prioritize the subsequent action. During Mirza’s bee incident, if he had had to deal with the bees and a quietly stalking tiger, the harmless bees would be of more concern than the obvious predator cat, simply because the humming causes sensory overload and overrides any logical knowledge he has of the danger from the tiger.

If you are a parent or caregiver and you see an episode, you can try to stop the behavior or distract the person by:

• Removing the trigger or removing the person from the trigger
• Calling the person’s name in order to distract or attract his attention
• Looking at the person in the eyes and getting the person to look at you
• Cover the ears or eyes to block or lessen the trigger, IF the person is okay with touch
• Speaking to the person with a soothing voice and saying something along the lines of “it’s okay”, followed by what action will be taken next

If you are an adult autistic, these coping methods may work:

• Breathing deeply. After the screaming episode before bushcraft class, Vee told Mirza to breathe deeply, which calmed him down and allowed him to join the class
• Counting from 1 to 10 or 10 to 1
• Removing an overwhelming thought and replacing it with another
• In the case of having to deal with an aggressor, after the situation, see it from a different point of view. Perhaps the aggressor was autistic too, and was triggered
• Learn to realize when you are overwhelmed and have gone ‘away’ so that you learn to come back to the present quickly. This takes a bit of practice

Lessening the risk of an episode for next time:

• Don’t go to that place at all if possible
• Do your homework and plan ahead. For as long as I can remember, I have always told the children what the plan is. Not only do I have the plan, I also have, and tell them, alternate plans. So for example, Plan A is if everything goes accordingly. Plan B is an alternate plan, and so on and so forth for every foreseeable catastrophe. I do this even during holidays. For example a year ago we decided to go on a short holiday in Port Dickson. We wanted to try the local food, so I looked up potential restaurants and designated Restaurants A to C in case of one being closed. My long-suffering husband knows better than to ask me to ‘go with the flow’ because we have all experienced disappointment arriving at a restaurant and finding it closed, or producing subpar food
• If the day really is unforeseeable, I label it surprise day. This means that we really do not know what is going to happen, so the kids just need to be prepared for anything, and try to enjoy it
• Bring items especially on the surprise day. A stuffed toy, books to read, crayons and color pencils, a deck of cards, anything to help especially if there might be waiting involved. Water and snacks are a must
• Before leaving any place, whether home or outside, check that nothing is left behind
• Before leaving home, go through the checklist of items needed, visually if needed
• If an adult autistic is triggered and he has a flight response, running after him or pinning him down might be difficult. For this case, Shiraz advises not to go to that place at all if possible, at least in the beginning. If the place is somewhere that he needs to go, for example a new learning center, it helps to have familiar persons to accompany. Slowly increase the amount of time there until he feels comfortable and can be left alone.

Planning and having a routine works not just for the special needs persons, but for toddlers as well. Imagine having a job to go to but each day not knowing which road will be closed; or waking up at different times every day. Does one eat breakfast or lunch? Not knowing what is coming next can induce anxiety and affect behavior.

We have difficulty looking for a particular item on the shelves in a grocery store as we tend to see them all at once. I have found that what works for me is to take a breath and calm down, and look at each item one at a time. If there are many objects on a table that need to be kept away, say eggs, bread, an uneaten meal and unused dishes, I can’t scan the table and see what I need. I have to look at each item.

I asked Tareq how he remembers things when new information keeps coming in. For example, if he has to remember to do 5 things in order, and has done 3, but is then given another 4, it gets very confusing to me. However, Tareq says that he is always organizing things in his head. He can see the items according to when he needs them done, for example, the urgent ones will be in front, then he rearranges them. Shiraz, Mirza and I can’t do this as we see everything all at once.

Similar to an itemised shopping list, if I have to remember six items, it helps to remember the number. More tips in our final segment soon. – New Malaysia Herald

The post Life In A Family With Kids On The Autism Spectrum – Part 2 first appeared on NMH.

As recently as last month I learned that the Autism Society of America was founded in 1965 by research psychologist Bernard Rimland, clinical psychologist Ivar Lovaas and Ruth C. Sullivan, along with a few parents of autist children. The first case of autism was Donald Triplett, who, at the age of 3, was placed in an institution. More than half a century later, the United Nations called for one day to be designated World Autism Awareness day. Since 2008, that day has been on 02 April.

Like many though, this day passed by without much significance until three years ago when I discovered that I, along with two of my three children, could perhaps be autists.

My husband Michael and I have three boys: Shiraz, 19; Tareq, 15 and Mirza, 14. With him always traveling for work and us living in Singapore away from our families, when I became pregnant with Shiraz, I earnestly took up the role of main caregiver. There were no red flags; Shiraz (and subsequently Tareq and Mirza) passed all the milestones physically, cognitively and behaviorally, and I even started a life coaching business for parents who were struggling with their children’s behavior, using Shiraz as a model.

While there were indications that he was a bit different from other children, he was a delightful, gregarious, fearless and happy child, full of life, which outweighed any ‘negatives’ he had. And because I had also manifested many of the symptoms, I dismissed them. 

Arms Flapping

Shiraz tended to flap his arms when he was happy, occasionally tip-toed and sat in a “W” position, loved being in the water, and was obsessed about trains and anything electrical. He also loved spinning things, and wherever he saw anything round, like the tudung saji or plates, he would attempt to spin them. Once he saw the cat sleeping peacefully in a tight ball and tried to spin the poor cat too. However, perhaps the first real indication was when he was 2 and we were told by the kindergarten owner that he wasn’t able to sit to task.

When he was 6, we discovered that unlike in kindergarten, he was unable to make friends at the neighborhood primary school. This was a trend that continued up to secondary school level. We then decided to send him to a small and cosy learning center in which he thrived.

At this time, I started to notice more things amiss in Shiraz, myself and Mirza. Or rather, I noticed that other people noticed that we were different.

Mirza was 10 and showed some puzzling signs during physical activities. At dance class he was half a beat slower than his peers and he had difficulty executing many kicks in taekwon-do which were effortless to Tareq. Because Shiraz had exhibited the same issues, I was annoyed, but never concerned. However, one day at bushcraft class, his teacher, Campmaster Veeraksana Veerak sent me a video of him sawing a piece of wood excruciatingly slowly. While he was sitting in the correct position, his posture was rigid and he held the saw so unnaturally close to the blade that he couldn’t control it properly. By comparison, his female classmate easily managed it.

When he was 11 he went on an overnight camping trip in a jungle in Gombak with Michael, Campmaster Vee, and his classmates. The next day, while packing up to leave, a swarm of stingless bees (lebah kelulut) came buzzing around him and he froze, oblivious to Michael calling out to him several times to hurry up, and to everything else. Michael couldn’t understand what was happening and got angry and frustrated. Because Mirza seemed literally stunned, Michael had to come over, look him in the eyes and lightly touch him on the arms before Mirza was able to break the hold that the bees had on him. Even so, because the bees were still disturbing his auditory senses, Michael had to resort to instructing him to do the tasks one at a time, starting with taking down the hammock and waiting for him to finish that task before directing him on the next one.

Back at home, a baffled Michael iterated this experience to me, which brought back a memory I had at a bustling Chow Kit market, when I was very young. The cacophony of sellers yelling out to potential customers, the sloshing sounds of the seafood vendors pouring water over the fishes on display and splashing my dress and the pushing and shoving of bodies became one single roar until my father selected a chicken to be slaughtered. I was mesmerized by the poultry clucking frantically in their cages, and like Mirza, this had me completely overwhelmed and I froze. My dad was calling me repeatedly and when I came back to the present, I was scolded for daydreaming.

I explained to poor Michael what Mirza was likely going through at that point and how the bees buzzing was at that exact frequency which bothered his already heightened senses.

Symptoms Of Autism

It was probably this event and Michael’s severe reaction that brought forth all the ‘idiosyncrasies’ in the three of us and made me realize that this was not normal. I remember facing the same ridicule from peers and did not wish it on my own children. It prompted me to find out what was wrong with us so that I could rectify it. I searched online and took a few tests and realized that we had symptoms of autism.

Instead of feeling totally dismayed though, it was liberating, and I felt relief to know that it was actually a condition. We were not defective; rather, all of our heightened senses were turned on at the same time without any filtering, which was my experience at the market. In Mirza’s case, the bees added to the unfamiliar jungle sounds, textures and smells, causing him to, in Michael’s words, ‘deactivate’.

Unfortunately there is no ‘cure’ and because neurotypical parents just can’t fathom how debilitating the sensations can be, they may not know what helps and what doesn’t. For example, a distressed child may calm down when hugged by a parent, but to an autistic one, whose senses are already assaulted, being touched may be too much sensation to endure.

Ironically I am grateful to be an autist just like my children. I have the advantage of understanding what it feels like, and being articulate, am able to help others understand it as well. Thanks to Shiraz, I have learned that the techniques imparted in my life coaching program also work for autistic persons. It is my hope that this article helps. While the spectrum is wide and each person is different, I hope that this article serves to, at the very least, provide a lightbulb moment to parents and individuals in similar situations.

In part 2 tomorrow, we discuss the various symptoms that one may look out for in children with autism.- New Malaysia Herald

The post Life In A Family With Kids On The Autism Spectrum first appeared on NMH.