Light the World Up Blue: Advocating for Autism Awareness in Education Abroad

Photo credit www.autismspeaks.org

Photo credit www.autismspeaks.org

Today is World Autism Awareness Day, and advocates for autism awareness across the globe are encouraged to “light it up blue” – in other words, show support for those impacted by autism spectrum disorders by wearing or displaying the color blue, which has in many circles become the symbolic color for this cause. And indeed, my front porch light is perennially blue, and I will certainly be wearing royal blue on this day to support the goal of raising awareness about autism. However, in my world, yellow is the color of autism, and I see everything now through a new, yellow lens. You see, my son, Evan, is on the autism spectrum. When he was initially diagnosed at the age of five, his paperwork indicated he had what was then called Asperger Syndrome, which has now been renamed “High-Functioning Autism.” And Evan’s favorite color is yellow, because, as he pronounced when he was five, “Yellow is the color of sunshine, and sunshine makes me happy.”

I recently had a conversation about the concept of identity, and how we form and focus on our multi-faceted identities, which can at times conflict with one another. Interestingly enough, the identities for which I am most widely known now are identities that were bestowed upon me, not by my choice, but rather by circumstances beyond my control. Specifically, I grew up overseas due to my father’s job, so I am forever internationally focused. And many have come to know me as an advocate for autism awareness. Despite the fact that I have many other identities that I actively chose as my own (wife, mother, friend, runner, writer, hater of roller coasters and donuts, etc.), these two identities are the driving factors in so much of what I do on a daily basis. So in honor of Autism Awareness Day, and in light of my role as Vice President for University Relations, Outreach, and Diversity Initiatives at API, I will focus on the intersection of the forces that drive these two distinct components of who I am.

PEOPLE WITH ASPERGER’S SYNDROME/HIGH-FUNCTIONING AUTISM CAN STUDY ABROAD.  I know, because we have hosted students on the spectrum. However, common advice to those who parent or work with people on the spectrum is actually quite to the contrary. So much of helping people with autism to cope in a world that is frequently overwhelming and confusing is to allow for them to stick to routine, to provide consistent structure, thereby mitigating factors that can impact their ability to function and thrive. So how can I possibly advocate sending somebody to another culture, full of different routines and a different language and unexpected sights and sounds and smells and tastes? I won’t pretend that international educational experiences are feasible for every student on the spectrum, but I can say with complete certainty that it is patently unfair to dismiss study abroad as an option for an entire population. Allow me to explain.

First, a definition:

What Is Asperger Syndrome?

Asperger Syndrome is an autism spectrum disorder (ASD) considered to be on the “high functioning” end of the spectrum. Affected children and adults have difficulty with social interactions and exhibit a restricted range of interests and/or repetitive behaviors. – Autism Speaks

Common Traits of Autism

Inability to read social cues:

  • Difficulty interpreting body language (non-verbal clues), to include facial expressions, posture, stance
  • Little to no awareness of appropriate personal space: they will often stand very close to the person with whom they are speaking, and do not recognize when that person is uncomfortable

Difficulty with appropriate conversation:

  • Limited understanding of the reciprocal rules of conversation: they tend to speak on a topic of interest to them, often not allowing for any contribution from the person with whom they are speaking, and do not notice when the other person has lost interest
  • Often speak at a loud volume
  • Struggle with maintaining eye contact
  • Interpret words and phrases literally (problem with colloquialisms, clichés, idioms, turns of phrase, common humorous expressions). (E.g.: “My door is always open, if you ever need to talk.” “No, sometimes your door is shut.”
  • Failure to understand puns or sarcasm;
  • ADHD is often a corresponding diagnosis, and this can manifest itself in the tendency to interrupt others
  • Bluntness/extreme honesty: they struggle with the concept of keeping an observation to themselves – particularly in regard to physical appearance (e.g. “Why do you not have hair on your head?”)
  • Excessive questions when discussing a topic of interest (e.g. “When does a seed become a plant? When is it considered alive? How many particles are in a seed? How does water make a seed grow? Why does sunlight make a plant grow? Why don’t some plants need water?…”);
  • Inability to engage in “small talk”

Emotional and behavioral tendencies:

  • Difficulty in accepting criticism or correction
  • Extreme or intense reactions appearing “out of nowhere”
  • Reaction to interruptions (either when speaking, or when asked to change tasks or activities before “completed”) may range from stress to anger to confusion
  • Rigid fixation on routine; severe reaction to change
  • Difficulty understanding the emotions of other people
  • React very negatively or angrily when losing a game or when teased, even when the teasing is in good-natured

Restricted and repetitive interests and behavior

  • Often display behavior, interests, and activities that are restricted and repetitive and are sometimes abnormally intense or focused
  • Repetitive routines provide feelings of security; stress when routine suddenly changes
  • Limited diet, and disinterest in trying new foods

The list above can be daunting. However, there are some ways in which international educators can work with students on the spectrum to make the experience easier on-site, and to foster a successful relationship and a successful experience abroad.

Before the student departs:

  • Speak to the student about strategies for success, and areas they find challenging.
  • When possible, speak to the family, therapist or counselor, advisors, and disability services office regarding coping mechanisms and accommodations.
  • Encourage the student to allow permission to share the diagnosis with parties on-site.
  • Educate on-site staff, host families, faculty, and fellow students about autism spectrum disorders, when given permission to share the diagnosis.
  • Schedule Skype meetings for students with on-site staff prior to departure to build rapport in advance of arrival.

On-Site:

  • Avoid idioms, especially when giving instructions.
  • Provide notice when a routine must be changed.

Example:  if you normally have dinner together, but you have a social event so you’ll not be able to dine with the student, let them know in advance.

  • Provide notice when they need to transition between activities.

Example: the student is working on the computer, but you are preparing to depart together for an errand. Tell them “we need to leave in 15 minutes.” You can remind them again, “we need to leave in 5 minutes.”

  • If you are sad, or angry or pleased or uncomfortable with something that happened or something they did, tell them. They may be unable to recognize this emotion based on your facial expressions or behavior.

Examples:

*I am angry that you used my computer without permission.

*I am extremely sad because my sister was in a car accident, and I’m worried about her.

*I really appreciate that you helped clean up the kitchen.

*It upsets me when you say I am a big person.

*I really appreciate that you apologized for running late!

  • When conversing with the student, be candid when their conversation is not appropriate, or you’d like it to end.

Examples:

*I’d like to talk about something else now.

*I do not know the answers to your questions, but we can look it up on the Internet.

*I’d rather not talk about that – it’s too personal.

  • Ask them what their favorite foods are, and if there are any they intensely dislike. Share this information with host families who may be preparing their meals.

Remember: many similarities exist between people with high-functioning autism and newly arrived study abroad students in the height of culture shock. Specifically, both groups:

  • Do not understand idioms, sarcasm in the host country language, and can interpret instructions literally.
  • Cannot understand social cues or personal space, because these are very much culturally influenced.
  • Become saddened by the lack of their familiar routine.
  • May not like local foods.
  • Do not understand the local norms regarding conversation.

Autistic students may never progress to the point their neuro-typical peers do in terms of adjusting to the new culture, learning the nuances of language or adapting their behaviors to be culturally appropriate. However, you can rest assured that students on the autism spectrum deserve the opportunity to try, and with additional support throughout all stages, they can succeed and grow from an experience abroad. Likewise, their fellow program participants can also learn from exposure to yet another population that is unlike them, which is without question a goal we have for our students who elect to study abroad.

Photo credit - https://ansam518.wordpress.com/2010/04/01/light-it-up-blue/

Photo credit https://ansam518.wordpress.com/2010/04/01/light-it-up-blue/

Interestingly enough, there are some ways in which Americans with Asperger’s are actually far more like those from other cultures than they are like neighbors they grew up next door to. American culture demands that we look at one another in the eyes when speaking, which is very challenging for my son. But it is also not culturally appropriate in many places. And the American construct of personal space is vastly different than Evan’s preference of standing in extremely close proximity to others.  However, it aligns very closely with the European and Latin American approaches to social interactions. His literal interpretation of what is said is in stark contrast to our culture, which depends on idioms and sarcasm to express ideas and to convey humor.   However, so many of us waste far too much time dissecting comments from family and friends and loved ones and colleagues to determine “what they meant by what they said.”  Isn’t it possible that the literal interpretation is actually much, much easier?

My identity was certainly affected by my experiences abroad, and my worldview has become colored by life as the mom of a person on the autism spectrum. I see things through a lens I’d never planned for, but one that has made me a better person as a result. I am far more aware of how much I have taken for granted in this life. I am unquestionably more patient and understanding. I’m less inclined to judge others, as one never knows what strangers must contend with on a daily basis that is not visible to others. I no longer assume that people understand me, even if English is their native language. I am more conscious of how others might react differently than I might expect, and that’s okay. I have learned to admit when I do not know the answer to one of his multitude of questions, but have also learned how to research topics I never thought I would explore, and as a result, I have improved my knowledge of how the world works.

In conclusion, having Evan (and by extension autism) in my life has taught me the very same life lessons I hope that studying or interning or working abroad might impart on our students. I encourage anyone with questions on this topic to contact me!

Christie Johnson has been with API for 15 years and serves as API’s Vice President for University Relations, Outreach, and Diversity Initiatives. She is also the proud mother of Evan – a 9 year-old wonderkid on the Autism spectrum. 

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