Science of Sisterhood

This is Iris and me in 2012. (Submitted by Jasmin LaPointe)

Years ago, my sister, Iris, and I liked to walk the hidden trails behind my grandparents’ property in Big River, a small town in the valley of the Nepisiguit River that flows into Chaleur Bay in northern New Brunswick. The walking path was small and narrow. Iris tried her best to stay within the path, keeping her feet on a small strip of light brown soil. Tall maple trees surrounded us and sprinkled ashy brown, red and yellow leaves onto the path.

Long, piercing branches stretched into the walkway from all directions. I took Iris’s small, dainty hand and guided her through the branches until we arrived at a small pond. You could see the reflection of tall trees in the water, and leaves rested on the water’s surface. The ground was marshy, and our bright pink rain boots sank into the mud. Iris jumped with excitement every time we saw our two mallard duck friends, one male and one female. She would scramble through her coat pockets, searching for breadcrumbs, and I would watch the ducks glide across the water, approaching us.  

Iris was diagnosed with autism at age three. Rather than telling you about her disability, let me first tell you about Iris. She is kind, empathetic, curious, and a light that spreads joy. She loves to sing and watch musicals. She loves Disney movies and can recite every line from most of them.  She hates jam and mustard with a passion. 

The way she bounces and jolts her head back and forth is something she does when she is happy. And when she stares at her hands, mumbling to herself is because she is in awe of something. These are simply the things that make Iris Iris. 

Iris is 18 now and graduated from high school last June. My mother and I worried she wouldn’t be able to find a job that appreciated her set of skills. But now she works part-time at the Prestige Nursing Home in Bathurst, New Brunswick, our hometown. Her job involves socializing with seniors, helping them play bingo, painting their nails, doing laundry and helping in the kitchen. In her spare time, she sings for them in the common area. It’s a relief to see her so happy, fulfilled and content in her new routine.  

The cause of autism is a question many people want answered. But I could go the rest of my life not knowing. There is a beauty to Iris as Iris. She can think simply and not overcomplicate things. When Iris was younger, she was convinced she could reach the stars with “a very tall ladder.” It was that simple, that achievable.  

Iris visits a senior every shift, whom she considers to be a close friend. He is always thrilled to see Iris and appreciates her company. He doesn’t receive visits from his family. His wife is in a different home and suffers from dementia. So, Iris is the company he looks forward to. He tells Iris he doesn’t feel like himself anymore without his family.  

Iris has always cared deeply about the feelings of others and believes there is a solution for every problem. She believes that if she can talk to his wife, she could help restore her memory and “then he would be happy again,” she explained to me.  

Over the years, there have been many theories about the causes of autism. In the 1950s, psychoanalyst Bruno Bettelheim developed the refrigerator mother theory. The theory suggested that autism was caused by cold or distant parenting; it’s really a theory that points the finger at mothers for their child’s disability. Although this theory is now universally rejected, scientists continued to place blame on mothers. 

In 1998, Andrew Wakefield linked the MMR (measles-mumps-rubella) vaccine to bowel inflammation and autism. This study was highly unethical, lacking proper controls, misrepresented data, and involved only 12 children. As a result, the study was fully retracted, and Wakefield lost his medical license.  

I asked my mother when she began to notice Iris’s disability. She said it was after Iris’s 12-month childhood vaccine. Development-wise, Iris was no different from her other two children until that age. She began walking at the same time and talking at the same time, but after her shot, my mom started to notice changes. She began showing her stims, which involve jumping, rocking her upper body, staring at her shaking hands and pairing it with humming and different vocalizations. My mom also recognized slower speech development.   

But my mom was missing a big piece of the puzzle. Autism traits typically become noticeable from one to three years of age. This overlaps with the same time children get their routine vaccines, including MMR, around 12-15 months. So, it is easy for parents to believe the cause of autism can be linked to childhood vaccines. But really, it is just the child beginning to show their disability traits, which would have appeared with or without childhood vaccines.  

For decades, researchers have believed there is no singular cause for autism.

Autism is complex and a lifelong condition that is likely rooted in genetics, not based on one simple factor. Still, there continue to be many theories that point toward a single cause for autism. And the continued claims of things that “may” cause autism continue to lack scientific evidence. 

I was scrolling through TikTok the first time I heard President Trump link the increased rates of autism to the consumption of Tylenol (acetaminophen) during pregnancy. I was baffled and wondered how other people would react.  

Major medical groups such as the American College of Obstetricians and Gynecologists, the American Academy of Pediatrics, and the Autism Society of America have outright condemned Trump’s claims. Trump’s theory is being described as “dangerous,” “irresponsible,” and “not backed by scientific evidence.” There is no question that his statement can be harmful, causing parents unnecessary fear and guilt.  

My mom stopped blaming herself for Iris’s disability a long time ago. She used to question if it was something she did during pregnancy, or if it was the vaccine she took Iris for when she was 12 months old. But wondering what she did or didn’t do wouldn’t take away Iris’s disability. I remember my mom posting on Facebook, “It wasn’t the Tylenol. You’re not to blame, mamas.” 

According to the Centers for Disease Control and Prevention (CDC), one in 31 eight-year-olds in the United States is diagnosed with autism. This is a dramatic increase over previous decades. In 2000, the CDC found that one in 150 children was diagnosed with autism.  

But this “increase” isn’t necessarily an increase. Today, we have improved diagnostic methods that we didn’t have decades ago. The difference between now and then is that children with autism spectrum disorder are getting diagnosed, while people decades ago weren’t. 

All this has me thinking about nature’s mysteries, sisterhood, and the ducks we used to visit in Big River. Female mallards line their nests with their own feathers to keep their eggs warm and hidden from predators. I always felt it was my job to protect Iris from people who didn’t understand or accept her. Iris wasn’t included in games or activities like other kids. She would frequently be ignored or rejected. But she always had me and our visits to the pond.  

After her eggs hatch, the mother takes the ducklings down to the water and teaches them to swim. I have always felt like a second mother to Iris. I taught her how to tie her shoes, zip up her coat, use a fork, wash her hair and brush her teeth. We did everything together as kids; she would follow me like the ducklings that swim behind their mother in a line. And I wouldn’t have wanted it any other way; it kept her near, so I could guard her from a world that didn’t always accept her.   

Iris would compare us to the two ducks we would find at the pond. The male mallards have iridescent green heads, yellow beaks and brown chests. Iris said I was the green duck because my favourite colour was green. She was a female duck with brown and beige feathers and an orange beak. Only the female ducks make the classic quack sound, and Iris would quack back to them, making me laugh. After a while, I realized the only reason she quacked was to make me laugh.  Iris’s greatest joy is to see others happy. But my greatest joy is to see her happy.

Some mallards migrate, especially those in northern climates. Migration has always been a mystery to science. We know that it involves inherited instincts and navigational skills. But there are things science can tell us and things science cannot tell us. Here are the things I do know about Iris without science:   

I know that Iris can stare at herself for hours in the mirror; she was always mesmerized by her appearance, especially when she was younger. When she was upset, I sat her in front of the mirror, and it always calmed her.  

I know that she likes movies and refers to specific lines or scenes to communicate with others. She recites a line from a movie, and I respond with the line that comes after. When she was younger and didn’t have the words she has now, Iris would refer to a scene from a movie to spark conversation.   

I know that she can have laughing spells for hours. She laughs so hard she cries. Her laughter always lit up our home, making us smile.  

Iris and I are on our way to feed the ducks in 2013. (Submitted by Jasmin LaPointe)

Mallard ducks can swim just hours after hatching, but they only learn to fly after 50 days. And when they do fly, you can see a blue speculum patch on their wings that is only visible during flight. Sometimes it takes Iris more time than others to achieve things. But she never lacked heart and determination. I had no doubt she would find a way to fly on her own. All my life, I hoped other people would see the blue patch under her wing.

Iris’s face would light up as she threw breadcrumbs into the water and waited for the ducks to swim close. She would laugh watching them splash their beaks into the water, retrieving the breadcrumbs, and would bounce up and down with a big smile. 

Sometimes when the world feels heavy, I think about that smile, and suddenly all my problems vanish, and everything is right in the world.