'My kids don’t want hugs and kisses': The cultural dimension of traveling with an invisible disability

Ana Karina Suarez
Special to USA TODAY
  • As an autistic parent, I feel the weight of generations judging my autistic children's behavior.
  • Because their autism is invisible, I often get the dreaded comment: they don’t look autistic.
  • The best way to support your autistic children is to listen to them, and sometimes this will require you to stand up against tradition.

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When you're autistic and part of the Latine diaspora, travel poses additional challenges. More so if you’re a child at the mercy of family expectations.

I should know. I'm a late-diagnosed autistic immigrant from Ecuador and mother to three autistic children. And I've chosen a different path as a parent, one where I don't focus on making my kids be obedient or train them to behave a certain way to please adults. I've chosen collaboration and compassion.

While traveling to visit your abuela, your tía or your primos can be a joyful experience, it can also be fraught with uncertainty. I've seen my own kids react exactly the way I used to when meeting our Ecuadorian relatives.

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Monica Sanjur reads with her son, Patxi Uy, 11, as they wait at their boarding gate at Baltimore-Washington International Thurgood Marshall Airport, on Dec. 6, 2014, during Wings for Autism, an airport rehearsal for children with autism spectrum disorders, their families and aviation officials.

They shy away from physical greetings and avoid eye contact. If they’re overwhelmed by too many new sights, sounds, smells and people, they shut down and appear indifferent.

Because their autism is not accompanied by other intellectual or physical disabilities, it’s invisible, and I often get the dreaded comment: They don’t look autistic. (Really? There’s a look?) There’s added pressure on them to perform and skepticism of their support needs.

As a parent, I feel the weight of generations judging my children’s behavior: Malcriado. Hace lo que le da la gana. I bristle when well-meaning relatives make demands: Coma callado. Salude con beso a la abuela para que no se resienta. Dele un abrazo al tío.

This is where I make a choice. I don’t do what my own parents did and force my kids to ignore their own discomfort so los abuelos will perceive them as obedient and polite “good” children. I become their advocate, respect their right to be their wonderful neurodivergent selves and protect their boundaries.

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I tell the abuelos and tías ahead of time that my kids don't want hugs and kisses and repeat this when they inevitably forget in their excitement at being together. I tell them that wearing noise-canceling headphones at the dinner table is what makes participation in mealtimes possible. That they need breaks away from everybody and may need to leave the table early. That they listen better if they're not forced to make eye contact and if they can move their body. That they connect better one-on-one bonding over sharing a favorite interest or activity.

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Maybe you're familiar with these tried and true strategies that help travel with your autistic child go more smoothly:

  • Tell them what to expect: Where are we going? What will we do? Who will be there? How long will we stay?
  • Show them photos of places, relatives and friends you’ll visit.
  • Create a visual schedule they can refer to.
  • Keep daily routines as close as possible to daily routines at home, especially mealtimes and bedtimes.
  • Take advantage of disability access features, like access passes and quiet hours.

You might find these additional strategies from my occupational therapist "tool kit" useful:

  • Build downtime into the schedule. Autistic sensory processing differences often result in overwhelm, which can lead to shutdowns and meltdowns. Shutdowns and meltdowns are extremely distressing and exhausting for your child, and the best support is prevention.
  • Make sensory accommodations. If your child says it’s too bright or too loud, believe them. Provide ear defenders, noise-canceling headphones, sunglasses, hoodies.
  • Know your child’s distress signals, and make a support plan with your child in advance when they are calm. Ask: How can I help you calm down? How can I help you feel safe? Maybe they need more physical activity or to retreat to a quiet place. Maybe they need screen time, a book, time alone or one-on-one time with you.   
  • Make an "escape plan" together. Sometimes, knowing they can get away from a situation when they’ve had enough is all it takes to reduce anxiety over being in a new place with new people. 
  • Free the stim! Stims are repetitive actions that help autistic children self-regulate. It can be listening to the same song on repeat, rocking, flapping hands, humming, twirling their hair around a finger.

Whether you're at home or abroad, the best way to support your autistic children is to listen to them, believe them, and accept and value their differences. Sometimes this will require you to be brave, speak up for them, and stand up against tradition and deeply ingrained cultural practices.

Ana Karina Suarez is a late-diagnosed autistic occupational therapist from Ecuador. She works to provide neurodiversity-affirming therapy and focuses on changing attitudes and adjusting the environment to support students develop a positive autistic identity and self-advocacy skills. She lives in Europe with her American husband and their three children.

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