When someone asks me how many siblings I have and what each of them does, my response normally goes like this: “I have three elder siblings. The eldest is my brother, followed by my two sisters. My brother works for my father’s business, one sister works in a university, and my other sister studies in a special school. She has mild autism.”
That last part of my reply, about my “Ate” Annie, usually catches my listener off-guard. There are instances when a curious, follow-up query is made, and there are times, too, when that conversation subject abruptly ends and awkwardly moves onto another. If my listener picks up on what I have said, a common question that follows is if Ate Annie has any special talent or ability. I understand that this query originates from the notion that people with autism are either geniuses or excellent in a particular field, thanks (or no thanks) to films like “Rain Man” and “Temple Grandin.” Unfortunately, and in contrast to what some expect, my sister is neither a whiz kid nor demonstrates a superb talent or ability. Sometimes, to defuse the serious and awkward tone of the conversation, I jokingly say that my family initially thought that I was the one with autism.
Admittedly, in such a conversation, I find it difficult to educate people about Ate Annie’s condition, or even to celebrate her difference. She turns 31 this year, but her mental age is that of a three-year-old. We cannot hold a long conversation with her, and our verbal communication is limited to asking what she wants to do or have. She understands basic commands such as “open,” “close,” “push,” “wash,” and “write,” among others, but her attention span fails if we engage her in lengthy and complicated tasks, such as paper folding or physical exercise.
She is independent to a certain extent, so that she eats by herself, cleans after herself, and performs routine chores like setting the table, washing the dishes, and sorting the laundry. However, we cannot trust her to go out by herself or stay home alone. In a conversation with any of us she speaks in a soft and sing-song manner, as if we are in a musical. Although we do have communication with her, it can be frustrating and worrisome especially when she is unable to tell us if she is feeling ill or uneasy, like those times when she suffers pain because of her monthly period. In addition, she has certain odd habits—for example, when we introduce someone to her, she smells the person’s hair instead of offering a handshake.
Perhaps one of the major difficulties of a family in such a situation is when the special child has a fit. In Ate Annie’s case, the possibility of her throwing a tantrum often brings us great anxiety, particularly when we are in a public place or even in a private gathering. Sometimes she sobs out of the blue, and people get concerned: Did she hurt herself? Is she feeling lonely? Of course, among her immediate family members this is nothing new, and in most cases her crying stops as soon as we pay attention to her.
However, what keeps us most on our toes is when she suddenly pulls someone’s hair. This episode has happened countless times—at home, in her school, in church, and at family gatherings. When I was around seven years old, an incident occurred in a grocery store where my sister pulled the hair of a young girl. My father was able to restrain Ate Annie, but the girl’s mother was furious and told my dad that my sister should not be allowed in such places. I remember, too, that a bagger boy witnessed the incident and gestured with his hand—drawing circles on the side of his head—to indicate that my sister is crazy. Although I was embarrassed by what Ate Annie did, I was mad at both the mother and the bagger boy for knowing so little about autism and for immediately judging my sister.
Understandably, most families do not find it easy to immediately accept having a family member with autism. My mother once told me that when I was young, I would complain to her and my father as to why they made me the bunso (youngest child), and not Ate Annie. Apparently, I so wanted then to be the “ate” because I thought I was superior to her in many ways.
At family gatherings, I am often asked a hypothetical question by a relative: What if Ate Annie were born a normal person? There are times as well when I sense our relatives’ pity for her, and although they do not say it aloud, I am aware that they think of her as our family’s “misfortune.” I suspect, too, that behind our backs, she is at one time or another the butt of their jokes. Once I was surprised to discover that until now, my grandmother could not accept Ate Annie’s autism. She miserably remarked that my sister is my mother’s lifelong burden.
It is difficult to educate people about Ate Annie’s condition because I myself know little about autism. It does not help when some people tend to be aloof toward her, or stare at her with a wary or judging look. Similarly, I find it hard to celebrate her difference, especially when most people expect every person with autism to be exceptionally gifted. To us, and perhaps to a number of similarly situated families, seeing children with autism being able to perform small things, such as expressing their wants clearly, feeding themselves, and sitting still for the camera, among others, are major feats. In my family, we are delighted whenever Ate Annie is able to recognize and name our uncles, aunts and cousins during gatherings. We praise her whenever she says “thank you” and “sorry,” and we shower her with hugs and kisses for every little task she performs.
Recently, Ate Annie and I started working on a small art project. Each day we draw a couple of images of an animal or insect such as a dog, a turtle, or a butterfly, and then post these on our bedroom wall. Interestingly, our little project is developing into an amusing wallpaper of an animal kingdom that showcases extraterrestrial—or, I daresay, highly evolved—species like a mercat (mermaid cat), a walking fish, and a molar-shaped elephant.
Needless to say, Ate Annie’s artworks are not for those with little or no imagination. Yet her approach to art evokes a lighthearted and warm feeling; this, I believe, emanates from her genuinely serene spirit. Perhaps in the near future I will show her works to people who ask about her. This act can serve as my little contribution to helping people become more aware of the condition known as autism, as well as my way of honoring the families who quietly strive to come to terms with it.
Oma Janessa B. Guatno, 27, holds a master’s degree in policy and human services from RMIT University in Australia. She says she is still looking for a job, preferably in Davao.