About Autism / Asperger’s Syndrome

Exchange Participation Can Be Beneficial

Planning a Group Exchange

Strategies to Deal with Exchange Transitions

Airport Travel

Exchange Staff and Participant Preparations

Resources

About Autism / Asperger’s Syndrome

Autism spectrum diagnosis covers a range of people, from those with high-functioning, verbal and often non-apparent autism or Asperger’s Syndrome, to those with more significant and often non-verbal neurological conditions. People with autism have all different intelligence levels, ranging from some who have savant talents related to memory of facts, languages, music, or numbers to those with average intelligence to others with cognitive disabilities. The range of abilities for people with autism is large.

Autism generally is defined as impacting one’s communication, social and imaginative skills. Some of what a person with autism may experience is being barraged by sensory information, which can lead to hypersensitivity to light, smell, sounds, tastes and textures/touch or shutting down of the senses (hypo-sensitivity). People with autism may respond by using rocking/flapping motions or focusing on fine details or objects that are used as a soothing mechanism. With this sensory overload, a person can become absorbed into what some have described as a separate interior world, different from the physical and social world around them. In addition, spatial, social, dexterity and other issues may impact them when interacting with others. They may find:

• Difficulty with processing body language, deciphering subtle facial expressions or visual recognition of someone by remembering their face;
• Performance anxiety of “going with the flow” since this social expectation and “small talk” is not clear nor explicit to them;
• Lack of social give-and-take conversational skills – not knowing when to stop talking and interrupting the conversational flow;
• Empathy that is not obvious to the other person since feeling responses may not be triggered by the same things or expressed the same as the other person;
• Awkward physical coordination.

As those with Asperger’s Syndrome reach adulthood, they often have acquired ways to make these autistic traits less apparent in daily interactions with neuro-typical people (e.g. non-autistic people) and to decrease some of the sensory impact. They may become good mimickers of non-autistic people’s behaviors, and ritualistic in their daily routines. For more information on autistic spectrum diagnoses and the personal experiences of people with autism, see the organizations listed in the resources section at the end of this document.

In Their Own Words: Why International Exchange Participation Can be Beneficial

People with high-functioning autism or Asperger’s Syndrome often identify as anthropologists, having to figure out the social habits of those around them. With this in mind, Autist Mary-Minn Sirag, who has traveled in Europe, lived in the Middle East and has a B.A. in art, French and classical languages, draws from her personal experiences about the liberating wonders and benefits of overseas travel for autistic people:

“The physical movement of boat and train travel resembles rocking, spinning and jumping up and down, which I think we do to ground ourselves physically; to know where our body is in relation to space and the ground beneath our feet. 

Travel imposes its own structural limitations, which encourages improvisation and creativity, and greatly enhances self-esteem. The novelty seduces us to think on our feet rather than being tempted into the auto-pilot we defensively seek. I don’t need to have everything be in order like at home.

The intellectual stimulation of learning a new language gives us a rare and precious opportunity to shine. Many autists are superior at the categorical thinking and rote learning that mastery of foreign languages requires. Languages make for fun and productive special interests. They keep my brain occupied with something positive, fun and mentally invigorating.

The incentive of novelty and lowered performance anxiety while traveling provides the right combination. Social faux-pas are often mistaken for cultural difference (it can be called ‘the Ugly American syndrome’), which lowers social expectations and pressures on us.”

Autism is a neurological difference, and people with autism or Asperger’s can bring diversity and new ways of thinking to an inclusive exchange program as Autist Jane Meyerding, Program Coordinator for the Jackson International Studies Program, writes:
 
“Everyone has times when s/he feels a split between what's inside and what seems to be required by the outside environment…I think all of us will benefit when our societies acquire a wider appreciation of neuro-diversity. The assumption of neuro-universality is very like a form of ethnocentricity….Our [autistic] strengths and weaknesses are likely to be unusual when compared to the social norm, and sometimes that will cause us problems in working and living comfortably with those who think the norm should be good enough for everybody. If people on the autism spectrum all ‘came out’ and worked towards increasing institutional flexibility to the point where our ‘special needs’ could be accommodated, the world would be a much more comfortable, less alienating place for everyone else as well.” (http://ani.autistics.org/jane.html)

Planning a Group Exchange

With the information above in mind, the question then becomes how to implement inclusive ideas into the structure of a group exchange program. Autism Network International has techniques for gatherings (modified below from the ANI web site, www.ani.ac/autreat.html) that can be applied to group exchange programs to the benefit of people who are at any part of the autism spectrum and who are neuro-typical.

Social Rules and Norms
Begin with an orientation session to introduce participants with and without autism to the social features of the program:

• Provide information on accommodating sensory sensitivities (e.g. perfume and scented personal care products are not allowed or flash photography is allowed only with permission of everyone who is close enough to be affected by the flash);
• Supply name badges to be worn throughout to help people recognize each other and the host families/guides that they may need to identify and find on the program, and include interaction signal badges (e.g. different color badges can mean that interactions are not desired at that point in time, or that others are encouraged to initiate interaction);
• Discuss acceptable behavior (e.g. natural expressions of oneself or needed coping mechanisms, which for the autists in the group may include echoing back what is heard or rocking motions), and not acceptable behaviors (e.g. actions that infringe on the rights of others by violating their personal boundaries or their property boundaries, or by preventing them from participating in activities, or by causing undue distress through physical, verbal, or sensory assault);
• Mention options in the use of the space (e.g. location of the crash or meditative room as described below; warnings about sensory hazards of the space such as fire alarm testing or loud echoing in dormitory hallways; options for people who do not want to eat in the crowded dining hall);
• Distribute a written summary of the orientation information.

Innovations for Autistic Accessibility

A basic principle is that social interactions are only desirable if they are voluntary. The exchange is meant to provide opportunity, but not pressure, for social interactions. Here are some ways to allow for this:

• Request that the host organizers provide a crash or meditation room for people on the program to retreat to during the exchange, to take a break from sensory overload and from social pressures. Place a lamp with an incandescent bulb in the room, and keep any overhead fluorescent lights turned off. 
• Even verbal people with autism are likely to have difficulty being verbal all the time, especially under conditions of sensory overload such as are likely to occur abroad. Many may struggle with speech at these times. It may not be convenient for them to leave and go off somewhere by themselves or sometimes they will still be interested in listening to presentations or being around friends, even it they aren't up to having interactions. A simple solution is to create color-coded interaction signal badges. Setting up guidelines can assist in everyone treating each other considerately.

The absence of any expectation or pressure to socialize, and the knowledge that they’re free to withdraw at any time, seems to free many people with autism to want to socialize.

Decompression and Re-entry

While none of these experiences is universal for, or exclusive to, all people on the autism spectrum, some of the things that can occur when abroad or upon re-entry are:

• Many people with autism or Asperger’s need to know ahead of time what they will encounter and what will be expected of them, so a clear structure and an opportunity to ask questions when planning to go abroad may be important.
• While many people with autism or Asperger’s do have an immediate positive reaction to being abroad and away from typical social pressures to fit in, some may feel initially panicked or disoriented from this freedom – this usually is temporary and will lead to personal growth.
• Immersion experiences are often followed by some degree of sadness upon returning to the home environment. 

Strategies to Deal with Exchange Transitions

Joshua Chen, who participated in a People to People Sports Ambassador exchange to Wales, and Ted Koehler who participated in a cultural exchange to Japan were both students when they went abroad. Because of their autism and Asperger’s both really appreciated the structure found in the short-term program and in the societies visited. Here are some other components of an exchange that they, and Mary-Minn Sirag, an advocate and writer, suggests can be helpful:

• Schedule breaks throughout the day;
• Have a clear explanation of work/intern/volunteer related tasks (repetitive work may be helpful), and a structured program;
• Explain food options of the particular country and alternatives for food intolerances; also discuss how to culturally decline food that is offered but not wanted;
• Inform co-workers and/or homestay hosts and roommates of the specific disability (with the participant’s consent); there may be higher success rate with short-term homestays as opposed to long-term stays, although an autistic person with very predictable behavior may be helpful for fellow roommates;
• Plan schedules and accommodations ahead of time – provide information about the trip as soon as possible to allow time for preparation;
• Provide a list of what could go wrong while traveling and living in another country;
• Discuss the option of personal assistance (e.g. for personal budgeting, laundry, etc);
• Provide acceptance for being really good at some things, and really poor at others to shed the expectation of excellence in everything;
• Set rules in a housing/accommodation setting (e.g. curfew time, food you can help yourself to, when meals are served, clear and specific delineation of chores, if the host family like silence at mealtime, areas of the house not open to guests, etc.)
• Allow immersion in one culture and location;
• Encourage self-advocacy.

Airport Travel

Dennis Debbaudt in his books and online essay “Autism & Airport Travel Safety Tips” (http://www.sath.org/index.html?pageID=2371) advises that at security checkpoints the accompanying sensory-enhancing gauntlet of sounds, lights, and touch can tax the system of some people who have autism. The typical behavior or characteristics of a person with autism includes diverting the eyes, avoiding touches, and repeating phrases heard or seen (which in an airport could mean repeating warning signs about knifes, explosives or guns stored in luggage). If left unexplained, this behavior may cause unnecessary anxiety at security checkpoints and can escalate into misinterpretations and verbal and physical confrontations.

He suggests the person with autism or the traveling companion carry a generic letter (also in the host country’s language) explaining about autism, the typical behaviors and how best to interact, which can be given to security authorities if needed. An example can be found on Debbaudt’s website at: http://www.autismriskmanagement.com. Also airlines can provide special security passes to let a family member who is not flying with the individual, go with him or her to the gate. Some airlines have adult assistants that can be requested as well, sometimes for a fee, to assist in getting through the airport and on the airplane. 

Exchange Staff and Participant Preparations

Preparing for an exchange program involves a lot of planning before departure. For exchange program staff to know the individual needs of participants, in this case for a person with Asperger’s Syndrome who has disclosed, a questionnaire adapted from the disability services office intake assessment form at the University of Minnesota for students entering college, may be useful in the education abroad setting.

Some people with Asperger’s may not request any adaptations or need any accommodations to be made. Ted Koehler found after his first day in Japan, he felt quite comfortable with his host family and in the city – a couple of times he felt anxious but it didn’t disrupt his experience as he could cope by thinking about his interests and phasing the feelings out. Others may choose to travel with a friend or family member to assist. Since some participants with Asperger’s may not disclose, the ideas discussed in this tip sheet may make an international program inclusive in its initial design, and thus setting a successful stage for neuro-diversity that can benefit all potential participants.

Resources

Asperger Syndrome Coalition of the U.S. (ASC-US)
PO Box 351268
Jacksonville, FL 32235-1268
Tel: (866) 4-ASPRGR or (866) 427-7040
Web: www.asperger.org

ASC-US is a national nonprofit organization providing information on Asperger Syndrome and related conditions. The website includes links to local support groups in the United States and Canada.

Autism Network International
P.O. Box 35448 
Syracuse NY 13235-5448
Email: ani@autistics.org Web: http://ani.autistics.org
Autism Network International is an autistic-run self-help and advocacy organization for autistic people. It provides a information forum, peer support, social experiences, public education and advocacy for appropriate services and civil rights for all autistic people.

Global and Regional Asperger Syndrome Partnership (GRASP)
135 East 15th Street
New York, NY 10003
Tel: (646) 242-4003   Fax: (212) 529-9996
Email: info@grasp.org Web: www.grasp.org

GRASP is an educational and advocacy organization serving individuals on the autism spectrum. It provides support group networks, public awareness, outreach, and autism information on its website.

World Autism Organization
Email: wao.info@worldautism.org
Web: http://worldautism.org

Established in 1998 by members in several world regions, the World Autism Organization (WAO), supports the quality of life and rights of autistic people and their families throughout the world. Its website lists autism organizations worldwide in its “other links” section.

Links to International Autism Organizations to contact overseas:
Autistic Society, http://www.autisticsociety.org/
Autism Independent U.K., http://www.autismuk.com/index6.htm

Other Informational Resources:
Aspies for Freedom, ttp://www.aspiesforfreedom.com/

Autism Today, www.autismtoday.com

About Autism, http://autism.about.com

Autism Society of America, www.autism-society.org

NeuroDiversity, http://www.neurodiversity.com

The Real Voice of Autism, http://www.autistics.org

TRIPS, Inc, www.tripsinc.com 

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