There are many important moments and discoveries throughout our journey with my brother. These moments have helped us understand him and decode his Autism to develop an approach to better connect and communicate with him.
Many a time it would seem my brother was emotionally disconnected and we couldn’t understand his intelligence as he couldn’t communicate it …
Yet, over time a different picture surfaced of his emotions and intelligence.
When my brother was a toddler- most of the time was in his own stimulatory world- watching the quick images on tv, playing his music toy over and over again, loving to play on swings and slides, vocalizing to himself, shuffling a pack of cards to see the movement. But he was very aware of the surroundings around him as these discoveries revealed.
So, here is the top 10 list of small discoveries that made a big difference in our understanding of my brother. The countdown begins.
(1) The care connect
When my brother was 2, I always thought he didn’t really notice me and how I was feeling. He always seemed to be in his own world. However, there was a time where for a few days I fell sick and was bundled up in the couch. I was really tired and out of it. Suddenly I noticed my brother coming sitting close to me and smiling – trying to get me to smile as well. He knew I was down and was trying to cheer me up!
Of course, the irony! We wanted him to stay away from me so he won’t fall sick. LOL
But, I will never forget that moment. It was the first time I observed the emotional connect between us and that connect remains between us- he can tell exactly when I am happy, upset, sad, or tired.
He may not be able to express that emotional connect but we can feel it. Hence, I realized two things:
– I have to be careful what emotions I show when I am around my brother, including fear and anger, as it may influence him. For example, if I am lost while driving on the road, there are times my brother has sensed my fear and panicked.
– Just as my brother was trying to give me emotional support, he would need support for his emotions as well.
You will find that the approach we developed for my brother is very much focused on emotional support … What could be more frustrating then having emotions that we cannot express? We all must have an experience of not being able to express what we mean and understand what that frustration is like.
(2) Laughter is the best medicine
As part of this journey of understanding his emotions, another important moment came at an unexpected time – when we were watching a comedy movie at home. We were all sprawled across the family room- my brother looked like he was hardly paying attention.
A joke came on screen – my parents and I started laughing … But we paused for a moment as we heard another laughter. It was my brother who was heartily laughing at the joke playing on the screen. The humor had caught his attention.
We discovered many things at the moment- simplest being, he can understand our language (our mother tongue is Tamil!) While he had seemed to be in his own world, he had actually picked up words in our mother tongue.
Most importantly, we discovered his ability to grasp more complex tone and language, especially humor.
His humorous side peeks out quite a bit. He particularly has a flair for sarcasm and sarcastic humor. One of our aunts in India is particularly sarcastic and witty and my brother is frequently smiling when we are visiting her place.
Takeaways from this experience has been two-fold:
– First, we can leverage his sense of humor to connect and communicate with him. For example, he often gets upset when his clothes gets wet with water and wants to dry it immediately as he thinks he has made a mistake. We have worked to desensitize him to this through his sense of humor. When his shirt is wet, we will playfully ask him “Will it dry? I don’t think it will.” And he will respond “It will dry” with a smile.
– Second, it continued to emphasize how my brother is very perceptive to tone and emotions of those who are around him. While humor and sarcasm have a positive impact on my brother, this also means my brother can understand negative emotion, e.g., anxiety, fear, and anger. Hence, we need to be careful they do not have a negative impact on him.
Again, it reinforces why emotions have been a critical part of the approach with my brother.
(3) Behaviors are a language
If you or I want to call someone’s attention, we can simply say “Hey there, come take a look at this.”
For my brother, it manifests as behaviors – shouting, making noises, fidgeting his hands, and tantrums. Yes, we can call it attention-seeking behaviors, but in actuality they are conveying more.
I always had a sense of this … But over the years as we have practiced more speech with him, he has shared more on this front. Here are two examples of what we learned:
Example 1: When my brother was at school, he would frequently hit his iPad in anger. No one knew why he would get angry at the iPad as he was only playing games on it. Then one day my brother was playing the iPad at home. He finally asked me to get him a “stickie”. Then we finally figured it out! We often used stickies to cover clocks and other numbers as they distract him. He especially did not like the number 5 for some reason. He was getting angry at the iPad when he saw the number 5. He did not know how to tell someone that he wanted the number 5 covered; hence, he was hitting his iPad. Hence, the behavior was actually his way of expressing the problem or rather his frustration of not being able to communicate it.
Example 2: Come the fall season, my brother’s anxiety and anger would be heightened. We wondered if he did not like the switch to colder weather or that the days were getting shorter. Especially as evening came, he would start shouting and was always on the edge. At this time, we had begun using new strategies to increase his speech including the daily talking journal. One evening we explained to him that getting angry does not help us understand what is bothering him and encouraged him to use “one word” to describe why he was upset. He finally said “dark clouds” — that made us understand that he did not like the darkness setting in earlier. We were able to explain why it got darker sooner in the Fall / Winter seasons and were able to alleviate my brother’s anxiety. Though my brother’s anxiety never completely disappeared till the longer days and Spring returned, knowing the cause of his anxiety helped us support him.
Understanding that the behaviors are his way of expressing something has made us focus on getting at the root of what my brother is trying to say with his behaviors (Read more in the blog on the ABCs of behavior … )
(4) He can read … what he wants
We were in a store in India when I was pulled towards an aisle in the store … I thought as always he was pulling me towards the candy aisle. But no, this time it was something else. There was this pain relief rub my brother liked the smell of. I thought he was pointing at the usual pain rub we buy. However, my brother went a step further — he wanted the “extra strength” version. He had somehow managed to identify the words “extra strength.” This showed that he could read and recognize words more than I had ever known. The security guard in the store observed how sharp my brother was in knowing exactly what he wanted. And I had to agree.
Moments like this have helped us realize that my brother is actually very good with sight reading and identifying words he has seen before. He is constantly learning from the environment in ways that we never realized. Hence, we have worked to teach him many key words that are relevant to him so he can identify them.
(5) An eye for perfection
My brother is the ultimate perfectionist. He is always correcting things in his environment, e.g., making sure everything is in the right place. He also does not like to leave anything unfinished, whether a snack or a worksheet.
This has been an important consideration in two dimensions:
- We can leverage his perfection to motivate him. Often when he takes a long time to do something or does not want to do something, we remind him how it would be incomplete if he does not do it.
- However, he is also very sensitive and gets upset when he is wrong.For example, if he completes a math worksheet he gets very upset if I mark any of his answers wrong. So instead, I talk through all the answers with him. When he is correct, I praise him. When it is incorrect, I gently ask him “Do you think it is right?”
And at a closer look a the question, he will realize his mistake and tell the right answer. This is a win-win, as my brother is happy he got it correct in the end and he found the answer without any help for me.
My brother’s eye for perfection can sometimes be irritating for us- as he expects us to be perfect too. But, there are ways to use it to push his potential as well.
(6) Musical magic
One day I suddenly heard one of my brother’s favorite songs playing on the piano in the basement … he was hanging out with one of his teachers, who was also a close friend of my brother’s. But his teacher did not know that song … so who was playing it? It was my brother. And it was a song that he only heard as we drove in cars … not one that had been taught to him. We realized my brother was extremely talented at playing the piano! His teacher had done an amazing job extracting this talent from my brother by playfully interacting with him on the piano.
That day opened the doors to one of my brother’s biggest talents: his ability to play any song on the piano that he has heard without being taught. It is an amazing talent and one that has revealed at least one thing my brother is truly passionate about: music. This has allowed us to use music as a calming factor— playing his favorite songs when he was stressed or anxious. In addition, we began communicating things to my brother in a musical manner. For example, I would sing “Good Morning, time to get up” to the tune of his favorite song— now, that would catch his attention and if I was lucky, his smile as he woke up.
This discovery also helped us identify one more thing. In the car, we would play songs in the radio system. It seemed that he was not paying attention— he was in his own world, looking out the window and making noises. However, he was paying attention to every detail in the song … as he is paying attention to everything else.
(7) Mathematical matters
My brother was amazingly strong at math … He has always been able to do addition, subtraction, and multiplication in his head. There was some challenges in explaining certain concepts, such as greater than (>) and less than (<). Till date, I am confused on which way is what and the symbols are not quite intuitive. I even tried to explain the alligator story for greater then. But then, I was like … Wait a minute.
I asked him – “Did you want 3 candies or 5 candies?” He immediately answered, “5 candies.” It was very clear he understood the concept but couldn’t process the symbols (< and >).
It was an important realization that my brother learned and applied concepts more effectively when they were practical and relevant to him. He responded quickly and accurately when he knew how and why the concept mattered. It helped us structure materials to break-down and teach concepts in a way that are more practical and relevant to him. (Sample tools here)
(8) The power of respect
My brother is terrified of getting blood work done … It takes him about 4 people to hold him down to draw blood for lab tests. Till, a high school teacher of his, Mr. T (name hidden for anonymity), came into the picture. Mr. T had an amazing command over my brother- Mr. T would say “You are a big guy now. You can do the blood work.” And my brother would give his blood without issue.
I was amazed to see this and hence, keenly observed how Mr. T interacted with my brother. There were three key elements to his approach:
- He treated my brother with respect as a teenager. He never ordered him; but rather he said, “You are a grown up now. You can do this.”
- Which brings me to my second point, Mr. T always emphasized how my brother can do it; he focused on what he “can do” to motivate him
- He always had a calm tone with my brother (with a hint of sarcasm which my brother enjoyed); this helped keep my brother calm as well
(9) The magic of role models
One day my parents and I were walking through my brother’s high school … We passed by his science class. There was a pin-drop silence and we were wondering where my brother was. Perhaps, he had left the classroom for some reason. To our surprise, my brother was right there. He was quietly sitting in the class taking notes on his iPad.
He was again with the aforementioned Mr. T. But there were a few other distinct elements that this situation highlighted:
- He was engaged when content that was interesting to him
- Role models mattered to him. When he was included with his peers, it was a positive influence on him and he would model them. Or else, I have never seen my brother as quiet as that. It showed the importance to model what we wanted my brother to do as he did keenly observe his environment.
(10) Variety is the spice of life
We all get bored when we do the same thing over and over again. My brother is no different. Every time I saw data for an activity at school, e.g., addition, I would see a pattern — a “hump”, where his performance would improve and then show a marked decline as he got bored with the activity. My brother would never meet the criteria of 75%+ accuracy over multiple consecutive trials of the same activity and he would never move on to the next activity. Based on this approach, it would look like my brother did not know basic addition — though he exactly knew that if I gave him 2 more candies to the 2 he had, he would have 4 candies.
The challenge here was boredom — doing the same basic activities again, my brother was bored. And he also did not understand that he would have to prove he could do the boring stuff multiple times, to get to the interesting stuff.
In addition, my brother began to create “patterns” and give the same set of answers without paying attention to how the questions changed.
Hence, it was an important discovery for us — that no matter what tools and resources we developed for him, we would make sure to vary it and change it up.
As you can see these discoveries helped us understand diverse facets of my brother — from how he connects emotionally to his strengths and talents to how he learns and processes information from his environment. These discoveries helped us develop an emerging approach to better connect and communicate with my brother.
