From the vault: Paddling for my life with a hidden disability

Note: This originally ran in the online magazine Fierce by Mitù in late 2018, which is why it is heavy handed with the Latina slant (🙄). I’d point to the link but the website doesn’t work. Also, my mother read this piece and her only response was, “_________ can see that on your Facebook page!” It’s the same response Aidy Bryant’s character gets in Shrill.
It’s Christmas 1989. I’m in the back seat of the car wearing a puffy sleeved velvet dress, patent leather shoes and scratchy lace trimmed socks. And she starts in as usual. “Remember to stand straight. Don’t fidget. Make eye contact. Kiss everyone hello. Respect your tias and tios. Have good conversation. Be amenable. Never leave without saying ‘goodbye’ to everyone. Twice. And never forget that good girls do not disgrace their families.”
My mother’s mantra. Being a nine-year old American Mexican on the border of Mexico when your family’s social circle are upper class Mexicans made childhood a Byzantine labyrinth to navigate. But there was no option for failure. Good Mexican girls are social. Shyness, awkwardness and inability to maintain certain standards are not just a sign of weakness, they are absolutely unacceptable and will be addressed when you get home, desgraciada. 
I knew I was different from a very young age. There were a litany of ways but all of them related to crippling anxiety. I tried to bring these issues up using my limited vocabulary, but saying, “I don’t feel good,” to my mom over and over ad nauseum only got me the look. So like a baby left to cry in a crib, I learned not to complain anymore. I sucked it up and internalized my constant discomfort. It was not that my mother did not care. It was that no one in 1989 knew what autism looked like in young girls.  Rain Man had just come out the year before. And while Dustin Hoffman’s representation of a grown autistic man raised in an institution was respectful, it also set back the autistic community by creating a trope of what autism looked like. 
Apparently I am not the only Latinx child to go undiagnosed. According to a 2015 study, Latinx children are diagnosed on average 2.5 years later than white non-Latinx children. Why does this matter? Autism Spectrum Disorders (ASDs)can be reliably diagnosed, and early diagnosis is associated with improved long-term developmental and family outcomes. However, many children meeting ASD diagnostic criteria are never diagnosed or are diagnosed years after onset of symptoms. But not only are Latinx children deprived of a timely diagnosis, when they are diagnosed, they are more likely to have severe symptoms than white non-Latinx children.
Researchers concluded that underserved Latinx children suffered as a result of parents’ reported low levels of ASD information and high levels of mental health and disability stigma in the Latinx community. Parents had poor access to care due to poverty, limited English proficiency, and lack of empowerment to take advantage of services. Providers sometimes dismissed parents’ concerns. The ASD diagnostic process itself was slow, inconvenient, confusing, and uncomfortable for the child. These factors led many parents to normalize their child’s early behaviors, deny that a problem existed, and lose trust in the medical system.
But back when I was a child, there was no well-known information of ASD among girls, just the extremes that mostly white male children presented with. I did not stutter. I did not have massive breakdowns in public. In general, I presented as normal. But that was not an indicator of having “light” autism. It was that: a) I was a girl and girls on the spectrum are able to adapt better; b) I was highly intelligent so people made allowances for some of my atypical behavior; and c) I was raised to be a good Latina girl and deviation from the ideal was seen as disobedient. There was a lot of spanking. There was a lot of humiliation. And there was a lot of shame. 
Now I am an adult. Or so it would seem. I’m 39, look 25, and sometimes feel 12. But I’m a diagnosed autistic and I am comfortable in my weird skin. I now know that wearing scratchy fabrics, while seemingly inconvenient to most, can lead to a massive breakdown four hours down the road when I have to pick out a bottle of tomato sauce at the grocery stores. The things that set me off are individually insignificant and unrelated but are legion and add up. And I have to live in this neurotypical society where people will not come to my aid if I do break down in the grocery aisle over “nothing.”
You know when you’re watching ducks on a pond and you see the duck gliding along the water, apparently magically floating on the surface? It looks placid. But what you don’t see is that the duck is paddling underwater like a motherfucker to keep afloat. I am the duck. Or in my case, I am the pato. 
As an adult with autonomy and agency I feel enabled to share with friends when an autistic related problem might arise. So now I don’t just say, “I feel bad.” I say to friends, “I can’t bar hop all night through Brooklyn because the lights and the sounds and all the activity that I meter in doses to keep sane overwhelm me.” 
The response, while kindly meant, is usually dismissive and destructive. “Oh that bothers you? Me too!” I get it. They’ve occasionally felt something akin to what I go through on a 24-hour basis, no breaks on weekends or bank holidays. They’ve never felt what I’ve felt. They don’t know the severity and they can never know it fully, no matter what words I use. So I just smile. 
What I want to say is, “No, not you too.” It is ironic that the empathy I now receive that I needed so badly as a child is what stifles me as an adult. People don’t get it. If I was weirder, if I broke down in public, if I presented as “autistic,” they would just take my explanation as fact. But because all of that was beaten and shamed out of me as a Latina girl, my issues don’t seem so big. All they see is the pato gliding on the water. And while I am grateful for my upbringing that served as informal therapy and my inborn ability to imitate normalcy if never actually be “normal,” there is a part of this 39-year old woman who wants to pull a foot out of the water, show my friends what happens when I stop constantly treading water, and break down in public. 
But I never do. For exactly the same reason I never kicked off those squeaky patent leather shoes and ripped off my scratchy lace-trimmed socks in the middle of a fancy dress party as a child. Because I was raised a good Latina. My mother doesn’t have to be around the corner with a fly swatter or a mean look to make me behave anymore. She’s got a permanent residence in my head. 
My real life mother and I have struggled to find peace. In some ways we are more intimately connected that and other two people could be. And in some ways, her rigidity has meant that she will never come to understand who I am. Just this morning while we were talking, she got frustrated at my very literal answer to her question. “Why do you have to be so…” she searched for the right word. “Autistic?” she asked finally. I couldn’t help but smile. She could have called me obstinant. But she finally knew to attribute my action to the right cause. It’s not just that though. She’s starting to pick up on her own symptoms. This is actually quite common. As parents of a child on the spectrum become acquainted with the common factors of ASDs, they see those factors in themselves and realize that they are also on the spectrum. For my mom and me it took years me of repeating that something I did was common amongst autistics for her to first acknowledge that I even had autism and then for her to realize that she did too. 
So at the end of the day, what am I to do? I can’t change the outside world anymore than I can change my autistic brain or my internalized ethnic identity. So I teach one person at a time about the difference between empathy and compassion. What I tell people is that you may never know what my particular brand of pain feels like, but you can be sure it exists if I’m talking about it. And your compassion in my time of expressed need makes this world a little kinder for us all to walk through. Or waddle, as the case may be. 

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s