Web Extra: Challenges of traveling with autism

June 25, 2008 4:07:06 PM PDT
"Already distressing" situation for family goes out of control in an airplane at Raleigh-Durham International Airport.

The news that a child with autism was put off an airplane because he was unruly saddened, but didn't surprise, one local expert on the behavior disorder.

Dr. Caroline Eggerding, chief medical officer of Bancroft Neurohealth in Haddonfield, New Jersey, says it "didn't have to deteriorate like that." However, she says parents should not let it discourage them from traveling with their children with autism. Dr. Eggerding says outings and vacations can be a challenge, but can be accomplished if parents accept, adapt, and are flexible.

She says many children with autism are distressed in new situations. Reports on the North Carolina airport incident indicate 2 and a half year-old Jarrett Farrell was upset when a flight attendant tried to tighten the child's seat belt.

Dr. Eggerding says Farrell may have been reacting to the presence of a stranger. She says children with autism communicate differently, and sometimes, their only way to show distress is with a "meltdown." That may be misinterpreted as conscious defiance by those unfamiliar with autism.

She says there are simple things to reduce stress in situations that appear headed out of control. She says children should be surrounded with familiar things - perhaps a car seat for a younger child, or toys and games. If the trip is by airplane, be sure to board early, to give the child time quiet time, before the rest of the passengers get on.

Dr. Eggerding also says flexibility is vital for families. "Be ready to shift gears," she told Action News.

And she gave these additional tips:

1. Know your child first. Learn from each past experience. Keep a journal if necessary to know what events, sights and sounds trigger negative behavior. Your child may not be able to handle certain experiences no matter how well prepared you are. If you want to attend the event with all of your children, you may have to limit your time there. Watch for distress signals. If you see any, move your child to a quieter area where he or she can play with a comforting toy you brought with you. If this does not work, be flexible and leave earlier than planned.

2. Keep the "family" in family fun. You may have to forego some family occasions - but not your whole family. Find a way to see that your other children can attend, with you if at all possible. Is there a caregiver you could hire to stay with your child with autism so the rest of the family can enjoy the celebration? If so, do it and attend the party and enjoy yourself. Do not feel guilty. That guilt can be exceedingly detrimental to the whole family.

3. Rehearse the situation. The rehearsal visit offers an opportunity to scout out an area where you and your child can quietly retreat if you see over stimulating activity is taking a toll. If you plan to visit an amusement park, then find a local amusement park. See how your child reacts. Note sensory likes and dislikes. If you plan to vacation in a seashore area, find a local lake or even a sandbox where you can test how your child reacts to sand and long-exposure to the sun or the water. A child with autism can experience sensory overload very easily. Sand between his or her toes may be unpleasant.

For a nonverbal child, visit the place ahead of time where your family outing will be held. For a verbal child, talk through what will be happening that day. Arrange secret signals and honor your commitment to respect those signals. If you have to leave, remember that face saving can be very important for older children with autism. Offer an age-appropriate reason why your child may not be participating fully in the event.

4. Be realistic. High stress vacations with multiple events and moves or long travel plans will not work with your child. If you and your family are planning such a vacation, then consider respite care for the child who could turn your enjoyable time together into a time of tears and tension. There are many sensitive, reputable organizations that offer respite care. Visit them until you find one with which you are comfortable. Do not feel guilty. Your entire family will suffer if your child with autism becomes out of control and your unaffected children have to sacrifice their vacation.

5. Keep it simple. During your vacation, plan to arrive early or late to avoid crowds. Avoid tight schedules. Some destinations accommodate children with autism. For example, Disney World offers a separate area when you can wait out of crowded lines. You should call ahead to see if your destination offers this and always travel with a doctor's note because it will be needed to access these areas.

6. Remember familiarity. Always bring along items that your child enjoys - favorite food, comforting toys, etc.

7. Stay with the routine. Children with autism like routine so try to keep as much of a routine as possible. If your child is used to wearing certain clothes on specific days of the week, getting up at a certain time, eating certain foods for breakfast and napping at a certain time, then maintain that routine.

8. React to distress signals. If you see that your child is becoming overwhelmed, respond promptly to the signal. This does not mean the entire family has to stop what they are doing. One adult can accompany your child back to the hotel while the other continues the day with your other children.