Life In A Family With Kids On The Autism Spectrum – Part 2

In Part 1, we described some of the more generic symptoms, and here, we share some other symptoms of autism in my children.

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