Thursday, January 19, 2012
I just read a post from Confessions of an Aspergers Mom about the difficulties she's anticipating involving a long weekend away from home, visiting family, with her husband and her two teen sons (who both have Aspergers). She asked for help and advice, and while I don't know if I have anything new to tell her, I hope she can glean some encouragement from the comment I left on her blog. After I commented, I realized that I had the kernel of a blog post, so I'll expand on what I said.
Traveling with a child or young adult who has Aspergers can present all sorts of challenges. My experience has been that some issues can be overcome, some can be avoided, and some just have to be endured.
The first big hurdle is the change in routine. People with Aspergers are often very routine-driven, and prefer to live within their self-defined comfort zone of routine as much as possible. Any kind of travel messes with their world, and they don't like it. We try to discuss upcoming travel with Safety Guy starting several days to a week ahead of time, so he can think through the change before it happens. We talk about where we're going and why, who we will see, and what we will most likely be doing, how long we'll travel and where we'll stop. We talk about past trouble points and what can be done to make them easier this time around. We try to prepare him for the change in routine BEFORE it's right on top of him. Quick changes are always hard for him, so the advance warning helps. It's a double-edged sword, though, since sometimes too much anticipation can lead to anxiety as well. It's a balancing act. We're finally at the point where shorter trips to familiar places don't need nearly as much preparation as longer trips to unfamiliar places.
The next hurdle is the change in familiar details. I guess that's related to routine somewhat - it deals with the everyday elements of their world that they're used to and expect at certain times or in certain ways. That could be anything from a favorite breakfast cereal to a TV show that's on at a particular time of day. (Oh, the agony we'd go through if Safety Guy wasn't home to watch "George Shrinks" at 3PM when he was 6!) Some details are portable (like bringing the cereal with you to the relative's house), while some aren't (no TV in the car). So, we'd try to keep some details constant, and stretch Safety Guy to accommodate new things as we went. Sometimes we were successful. Sometimes he'd have a rip-roaring meltdown. We kept stretching him, and changing details has gotten easier on him as time has gone on. Now the promise of a particular reward seems to help him weather some trying changes (like knowing he'll get to use the computer first when we get home if he stays calm in the car, or that we'll be stopping someplace familiar for dinner along the way).
One of the most frustrating hurdles for us was the change in personal habits. Not only does traveling mess with daily routine and familiar details, it also discombobulates a person's hygiene and self care habits - like using the toilet. Oh. My. Word. We had more issues surrounding getting our son to use public bathrooms while we traveled when he was younger (4-8 in particular). He was afraid of toilets that automatically flush. Add into that the upset routine, the strange places, his fear of crowds and his sensory issues related to echo-y spaces, and you can see where public bathrooms off of major highways would be one of Dante's circles of hell for him. We couldn't just stop for a minute - every potty break was a half hour (or longer) trial of our patience and his bladder as he nerved himself up to use the toilet. This gradually got better for him over a period of years, and is mercifully not an issue for him any more. Allowing extra time during rest stops is a good idea anyhow, so everyone can stretch their legs and get out of each others' personal space, which leads us to. . .
. . . the too much togetherness thing. Safety Guy loves his family - but not at close range for long periods of time. That can be an issue at big family gatherings, but at least in a house he can usually find a quiet room or go outside to get some space. It's always an issue when we have to go any distance in the car requiring travel for longer than 15 minutes. This is where the sibling thing gets really hairy, because Safety Guy and Princess Yakyak have to sit together in the back seat and they can't get away from each other. (SUVs are funny that way.) Then you get into the whole "two strong-willed kids who don't know how to back down and when to shut up" syndrome, which gets piled on top of the boy/girl, older/younger, and AS/NT dynamics. Our best bet as parents is to distract and divide them as much as possible in that confined space, through isolation techniques (i.e. MP3 players or video games with earbuds) or the strategic use of games, snacks, and other incentives (otherwise known as the "Look, something shiny!" ploy). If we're taking a long trip, I often carry a stash of gum, small candy, music, books, and games (like Mad Libs) to pull out when tempers are getting frayed, hopefully before anyone goes nuclear.
Yet another hurdle is food. Many people with Aspergers have sensory issues or distinct preferences related to food. Safety Guy has always been a picky eater, with a fairly narrow set of preferred foods, which has made travel and visiting relatives for dinner a risky undertaking for years. When he was younger, we'd take certain food items with us or purchase them to add to a family meal. (For years he'd only eat one kind of margarine on his bread - Brummel & Brown Spread, which he called "round butter" to distinguish it from "square butter," i. e. real butter, which he still doesn't like on bread.) He's broadened his food selections gradually over the years, and our extended family is used to his picky ways by now, but we're still working on the food thing. Last weekend my husband's mother served a nice lunch of various cold salads and bread while we were visiting. Safety Guy passed on the salmon salad, and commented to the whole table, "It smells like cat food!" Ack!
And finally, there's the unexpected. The traffic jam. The bad weather. The flat tire. The overheated radiator. The accident. The cancellation. The lost item. The forgotten medication. The electronic device out of battery power. The "wrong" food served at a restaurant. The injury. Any of these things and a thousand others can throw anyone for a loop. It's just that I've noticed that the loop with Aspergers is often bigger and more dramatic. Many people with Aspergers and related ASDs are very linear thinkers. They visualize how their trip should go, with every step a known quantity and a limited tolerance for variables. If something happens that forces them to deviate from their anticipated course of action, it can really cause big problems. The problem is, you can't really anticipate these things. But, like a good Boy Scout or Girl Scout, as a parent you can be prepared as much as any reasonable person can, and you can teach the person in your life with Aspergers how to cope with the unexpected. They learn more about rolling with the punches each time something unexpected happens and you model working through the issue. It's a long process, since generalizing a skill to deal with what are essentially one-off events (emergencies or detours) is very difficult for them, but it's probably one of the most important life skills they'll ever learn.
I'm sure I'll think of more hurdles, but for now those are the ones that stick out in my memory and current experience. Our kids are relatively good travelers now, but that doesn't mean we haven't worked hard to get as far as we have, and there's still room for improvement. I'm open to other ideas and comments about traveling with someone who has Aspergers.