It’s World Autism Awareness Day as I write this, and our family has enjoyed wearing blue and seeing buildings in Singapore light up blue for years now. It is the one day there is a visible sign to those with Autism to say “we see you.” Some would say days like this do not do enough, and others say it is no longer needed. There are many who say it was never needed as it implies those with Autism need to be cured instead of being included just as they are. Wherever you stand on this issue, I will say that I have enjoyed listening to all those voices and opinions, especially those that I have the privilege of hearing in person. In reading the strikingly written perspectives of those on the Autism spectrum, such as the many books by the insightful Temple Grandin or hearing her brilliant Ted Talks, I have begun to understand the perspective of at least that one person. If you spend even a short amount of time listening in the Autism community, you will hear the commonly quoted phrase that when you meet “someone with Autism, you have just met one person with Autism.” There is such diversity even within those on similar positions on the spectrum itself. Autistics are certainly not a monolith. There is diversity where each individual is unique. It illustrates beautifully the truth that we still as human beings seem to struggle with grasping that we are all uniquely and beautifully different in more ways than just our fingerprints. However, we do so love to generalize, stereotype, and shove people into proverbial boxes. It is our brain trying to categorize and organize what should be left to fly on it’s on-free from the constraints we place on individuals. We often fear what we do not understand, and in our fear we exclude. What we should be afraid of, however, is the FOMO (Fear of Missing Out in case you “missed out” on that one) of not including those who are different from us. In not including others who are different from us, we miss the chance to grow, to expand our perspective, to be in awe of the struggle and triumph of others who seem to walk on a different plane from us all together. We miss the chance to learn how to love more deeply, to appreciate what we have or can do, or the opportunity to work together to help make our communities better places for all of us to enjoy a quality of life with mutual benefit.
Last Saturday, my husband and I went out to breakfast with a couple that lives in our neighborhood. Over some prata and curry with some Malay coffee at our local street stall, we shared stories about our kids and the joys and struggles of parenting. This couple has 4 children, and their 22-year-old has lived 19 of his years nonverbally. He is Autistic, and also a couple of years ago suffered from a seizure that led to him being rushed into brain surgery that resulted in memory loss and being wheel-chair bound ever since. The love that these parents who have sacrificed so much for him while working as a taxi driver and a supermarket cashier was deeply touching and eye-opening. The wife said that her world was so wrapped up in her son that if something ever happened to him, she was not sure if she would survive it. This was coming from a mom who did not even hear her own son say the Malay word for mom until he was 19-years-old! Instead of a 1-year-old saying “Mommy” for the first time, tears rolled down her face after waiting 19 years to hear her son say it, never knowing if he in fact ever would. The amount of love they had communicated between each other for all those years was completely without words, but clearly never devoid of fully expressing the depths of their familial love for each other. This couple was going to great lengths to provide the very best for their son who due to his wheel chair status was unable to attend school. They were paying out of their low income paycheck (in what is the most expensive city in the world for the past 5 years running) to send their son to a private school for students on the Autism spectrum.
This mother with great hope had recently walked into a community service program area in our neighborhood that provides elderly family members who are in wheelchairs some social interaction during the day while their caregivers are at work. This mom was quickly told that her son was not welcome there as they did not include those with Autism in this wheelchair friendly program. She was devasted, as she only wanted her son to be included in some social interaction while he cannot attend school. Her heartbreak broke my heart too, and from one mother to another, I wanted so much to comfort her. It did not seem like too much to ask, but there are many systems that still exclude those who seem “too different” or “too much.”
Now when I walk around my neighborhood, I see it all so differently. When I cross the street and stand in the median to wait for the city bus to pass before I fully cross to the other side, I am reminded that my friend pushing her son in the wheelchair cannot do that. She has to go further down and cross where there is a ramp, and allow extra time to do so since it takes quite a bit longer. If it is raining, and I am out and about with my umbrella, I am now aware of how challenging it must be for this mom and son. How do you hold an umbrella for yourself while pushing a wheelchair in the rain and puddles while also aiding the son in the wheelchair to hold his large umbrella to cover himself plus his wheelchair? Suddenly, I am cognizant of the challenges simple short jaunts to pick up milk at 7-11 must be like for them, and I am sad at the lack of inclusion for my friend and her son that she loves so much. It makes me want to do something about it, and help in any way I can. I would never have known about this strikingly different experience in my own neighborhood had I not listened and gotten to know this Malay couple in my neighborhood who live so near me and yet so far away from my experience. It makes me wonder how differently all of us are experiencing the exact same neighborhoods, and cities in our own ways. It makes me wonder how much we could do to help each other and how much we could learn to appreciate what works for us. I am now even more curious to find out how we can listen better to each other in ways that teach each of us about sacrifice, selflessness, loyalty and deep love as I was so blessed to learn about from this mother who cared so deeply for her son. Going out of our way to listen and include those around us that seem so different is a simple yet profound experience. If we could trade in fear and apprehension for a heart and an ear extended, I believe love will grow in our communities. It would mean that the blue lights that we shine would represent a desire to include those who are excluded and realize that by including them, we are also allowing them to include us.