Growing up, Moni Avello struggles to understand her younger sister, who has Asperger syndrome.

Moni (Monika) Avello transplanted herself from Miami, FL to Cambridge, MA 7+ years ago in the pursuit of science, and has yet to regret her northward relocation. Moni prefers her hair a quarter shaved for temperature control and generously dyed to honor the rainbow. She is willingly addicted to strong espresso, a habit she picked up in the 3rd grade. Moni loves to social dance blues, salsa, and bachata. In her free time, she experiments with her favorite bacteria Bacillus subtilis, trying to figure out how it blocks unwanted sex, because science is wonderful fun and the Ph.D. degree in Biology from MIT is a nifty bonus.

This story originally aired on June 1, 2018, in an episode titled “Coming of Age.”

Story Transcript

So my family arrives at a restaurant and we make the fatal mistake of trying to sit at a table that Aika, my younger sister, did not choose.  The showdown begins. 

She unleashes a high screech that grows in both length and volume, the telltale signs of a fit.  My mother, a petite Japanese woman, speaks to her in hushed tones.  “Shh, Aika,” trying to get her to calm down. 

My father, a tall, hefty Cuban man, former marine not having it.  He does the exact opposite, scolding her directly with, “No!  Stop that!”  Which only gets her going.  Eventually, he just picks her up kicking and screaming over his shoulder and just marches out of the establishment, not giving a damn about all the eyes on us.  And my mother is trailing behind, horrified to be causing a scene in public and to be disturbing everybody around us. 

And amidst all this chaos is me and I’m hanging out.  Like this is business as usual.  Welcome to my childhood. 

So Aika was four when she was diagnosed with Asperger’s syndrome, which, today, is the high-functioning end of autism spectrum disorder.  It’s a developmental disorder that manifests in social behavior.  There's great difficulty with social interaction, there's need for routine and control, there's unusual emotional reactions to things and sometimes very unusual strong interest and topics. 

I was five when we figured this out.  I actually don’t remember much about when we did because, for me, it wasn’t this big Aha! revelation.  It was like saying that Aika was Aika. 

Yeah, she was weird.  She liked crying babies.  She would run to them to watch them cry.  She once pushed a carriage over.  The baby was fine.  You get the point?  She threw these insane fits everywhere, she was super compulsive, she didn’t listen to anybody, and that was her normal.  In my mind, we’re siblings and we’re on the same playing field so I expected us to be treated the same, especially by our parents.  No. 

So when I was nine, my family went to Juniper Springs, Florida, for the first time ever to go camping.  My dad decides it would be brilliant to hike ten miles into the campgrounds.  So he loads himself, my mom and me with tons of gear and I’m carrying all of our water which is one kilogram per liter or 8.35 pounds per gallon for those of you who don’t speak metric.  The point is it is heavy.  Aika is carrying a regular backpack. 

Stroke of genius number two.  We start out late in the day so that it begins to get dark and we are not near campgrounds yet.  My dad is starting to get all military on our asses.  “We can’t stop now!”  What’s going to happen? 

And I am so tired of lumbering with this heavy bag while Aika is just flitting around on the trail.  I complain enough that we actually stop to trade bags. 

So I put on Aika’s bag and it feels like feathers.  And Aika puts on my bag and doesn’t even last a minute before she starts to go (groans) which is like, “Oh, we can’t do that here.”  The bag comes back to me. 

I’m like, all right.  We’re going to change tactics.  We’re going to drink all this water and by ‘we’ me so that I don’t have to carry this much on my back so that we get to the campgrounds before dark and we don’t die in the woods at night. 

So we made it to campgrounds.  It’s fine.  We had water.  It was a great time and we never went camping again.  This ten-mile hike really captured the core sense that I had growing up side by side with my sister.  It often felt like my parents let Aika slide by with basically an empty bag while they handed me this heavy bag full of expectation and responsibility and struggle. 

I get that I was the older sister and I could handle my way but, really, we could have distributed that weight a little more equally between us.  Aika could obviously handle more than a featherweight bag.  It just felt like with her they just didn’t even try.  That was so frustrating. 

The reality was that my parents were just a phenomenal cultural clash all on their own and my sister just kicked it into overdrive.  They couldn’t agree on how to handle her fits in private or in public and my dad worked a lot and often abroad, which was why my mom was juggling the two of us by herself.  And I see that, now, those are really hard circumstances but, as a kid, I didn’t get that.  There were no excuses in my mind so I just didn’t go easy on Aika. 

My mom would take us shopping and Aika would be following me around and I'd run away from her because, uh, get off my trail.  Then she’d throw a fit and my mom would be really mad at me. 

Or I'd kick her out of my room when my friends were over because, “No, you can’t participate.”  Standard older sibling stuff. 

But there was more serious stuff that I should have stepped up to the plate for but didn’t.  Like when the neighborhood kids made fun of her and I said nothing and I did nothing.  I had this instinctual you're-on-your-own-attitude towards her and I never considered defending her when the outer world was being unkind.  This isn’t to say that if someone was about to do serious harm to my sister that I wouldn’t have said something but I know it wasn’t my primary response. 

One time in middle school, I disappointed my mother in something and she was going tiger mom on me yelling very harsh things and I was getting really upset.  Aika comes into the room and she tries to intervene saying, “Stop yelling at sis.” 

I remember in that moment feeling so angry at her. 

“I don’t want your protection.  I don’t deserve it.  I wouldn’t do this for you.”  

That moment really haunts me because, at the core, Aika was a better sister than I ever was.  I bet that if the neighborhood kids were making fun of me that she would have stood up for me.  To this day, I feel this deep shame that I let Aika down. 

I recently apologized to Aika about not having been a great sister.  This was via text because she doesn’t like to talk.  Also, I think she destroyed her old phone, probably in a fit, so she's chatting me on her computer. 

In great Aika fashion she responds with a waving hand emoji.  And I type, “Did you just wave at me?” 

“Yeah.” 

“What does that mean?” 

“The wave?  That means hello.” 

She's hilariously dry in the emotions department and she's always been brutally honest about how I treated her in the past, and she's also never held it against me. 

Aika is moving forward.  Aika has got dreams.  She wants to be a cartoon artist.  Her style is this odd mash up of Disney’s It’s a Small World meets South Park.  She draws pictures of people from around the world with irreverent humor in there.  Once in a while, there's genuine reflection about how she feels about herself, a girl looking down saying, “I wish I don’t have mental retardation in me.” 

And Aika struggles really hard with anxiety and she’ll send me the longest walls of text ever saying things like, “Hey, sis.  How’s it going?  Listen.  At this moment I am having a terribly hard time keeping my thoughts in the positive side by having the positive thoughts beat out the negative thoughts, but instead the negative thoughts is winning over the positive and it leads me to severe anxiety.”  Two sad faces. 

I don't know what to do.  It’s painful.  And I don’t know what to say to that except I’m sorry. 

Aika needs help and my parents are trying.  They don’t want to involve me.  They tell me to focus on myself, to focus on graduating on time, to focus on my career.  But that’s what I've always done and I’m really sick of having always looked away.  It’s like the tables have turned and Aika is now carrying the really heavy bag, except instead of water it’s full of her anxiety, her hopes, her frustrations.  And my parents are giving me the real light bag and saying, “Don’t worry about this.  We’ll take care of it.” 

But that’s not what I want.  I want to help my family and I want to help Aika and I want to be the sister that Aika has always deserved.  I want to be her champion.  Thank you.