Vacations are supposed to be a break in reality. At least, that is what they are designed to serve in our harried lives. They are meant to be a period when the unrelenting realities of the real world back off for at least a few days. But for individuals who are on the autism spectrum, it is usually never that simple. When you live under the cloud of autism, traveling is often synonymous with suffering and nothing feels like a gentle day at the beach!
As is often the case, the bad vacations stand out in my mind far more than the rare vacation filled with uninterrupted euphoria. There was the trip to Disney World in fourth grade when I drove my family nuts because they took us to EPCOT Center for two days instead of the Magic Kingdom. (I was expecting the same rides as two years ago.) Or there was the week at the beach that was nearly ruined by a case of Athlete’s foot that had to be treated at a doctor’s office while in Ocean City, MD. For some reason, I did not have the sense to tell my family about the problem nor speak up at least a week ago when it could have been treated at my sleep-a-way camp’s infirmary. The same anger, rituals, and occasional tantrums related to provocations like video games pursued us during the one week of the year that should have been a reprieve from any madness that plagued us at home.
It helps to understand that autism rarely, if ever, takes a holiday. Therefore, supports are needed even during vacation periods to assist with “crisis” like ice cream melting too fast, travel delays, sunburns, airplane air pressure distress, and lack of video game stimulation. Individuals with autism drink and bathe in predictability. With that said, a vacation can be the most unpredictable situation imaginable that invites a conga line of meltdowns. It also offers a chance for problems to arise that seem to defy reality. For example, one family in Minneapolis had their child maneuver the Internet to extend a family vacation by at least a few days while also changing the room to his preference after memorizing the credit card numbers. And try explaining to a TSA agent why their child blurts out a wisecrack about their family smuggling drugs. Instead of doing the sensible thing by “letting it go,” the TSA agent may strip search every family member.
What are we saying? Vacation can be difficult for anyone including the most seasoned traveler. Who has not wanted to experience the short-term joy of throwing a chair against the window of an airport that would be inevitably followed by the long-term consequences of incarceration in “Airport Jail”? This is usually provoked by the Catch-22 situation of a plane delayed in increments of half-an-hour for at least eight hours. Life is not fair, but there should be limits to how unfair life can get for the long-suffering individual who needs just one week where nearly everything goes right. The frustration and reaction will be multiplied by at least ten for those struggling with autism.
It is uncommon for supports to be extended during vacation periods for families who deserve to jump into that Wonderland Rabbit Hole away from reality. Autism never takes a holiday, but it should at least take half-a-day off once in a while for the sake of family togetherness. In my new book, “Getting a Life with Asperger’s” I discuss how my case of Asperger’s syndrome affected the life of my sister, Dena who is two-and-a-half years younger. It must have been unbearable for her to have my neurosis intrude upon a perfectly good vacation that required the attention of our parents at exotic restaurants and others places that should have been synonymous with undiluted joy.
How amazing is it that there is actually a company that caters to this obscure niche in the special needs world? Society has come a long way, but we still have light years of progress remaining. In the future, there should be an abundance of restaurants dotted with the puzzle piece-checkered autism logo indicating that staff are trained in recognizing the condition and will be ready with compassion as well as autism-friendly toys to enhance the dining experience. Karen Kosack, who founded the Hudson Valley Autism Society, blossomed with the inspiration to create the organization after visiting Disney World. She and her children were mercilessly heckled by other park guests when they were allowed to circumvent the infamously long lines for the rides. They could have used an advocate who would reassure them that the guests could not and may never understand. Or for the most relentless complainer, this advocate could have further explained the situation and provided a card with a phone number in which to make a ridiculous complaint to the park.
It would have helped in my life to have ASD Vacations during the throes of autism. An advocate could have taught me coping strategies that would avoid spoiling the magic that would-have, could-have, and should-have been pure. As an individual gets older, these seeds of coping mechanisms will flourish. The strategy of a “Practice Vacation” is ingenious especially considering it is better to have one-fifth of a vacation robbed by autism as opposed to the entire week. ASD Vacations send the message that hotels worthy of our business should be required to make reasonable accommodations and allow themselves to become educated. One must have their hand held before they are able to cross the street on their own. As an adult, I have an unusually heavy travel schedule due to my public speaking career, and the hardships that I endured as a child have seasoned me to meet these challenges. There was the time I narrowly avoided trouble that could have been a YouTube-worthy moment. I had asked an airline employee whether she would mind me leaving my belongings on a chair and then asked, “Will the police come to blow it up?!” Apparently, they had issues with the words, “blow it up” even though it was obviously used in an innocuous fashion.
Traveling is just another skill that must be mastered by those living with autism, and it is accomplished the same way as any other skill. Through experience and the willingness to accept feedback, it is possible to alleviate suffering in the future. Some of the greatest victories will be achieved when a person with autism understands they have the power to navigate new territory and deal with minor setbacks as they come.
It is also a fallacy that maturity will flourish due to age and the natural development of the human brain. Maturity is definitely a phenomenon that must be earned by putting oneself out there and creating Tinker Toy blocks of confidence. I remember the first time I drove home in broad daylight from Staten Island in heavy traffic! Traffic and the possibility of getting into a car accident have always been a potent fear. But the experience was conquered one step at a time until I found my way home where the familiar surroundings embraced me like a blanket. As human beings, we are instinctively attracted to environments that offer predictability, which is why certain franchises will be forever popular even if the food is essentially the equivalent of edible sewage. But once in a while, it is a good idea to escape from that cocoon where everything is in its place to experience a real adventure. Trust me…it will be worthwhile when the rewards finally come.
Last year, I decided to drive a friend of mine with Asperger’s and myself to the quasi-paradise in Wildwood Crest, NJ. We ended up checking out of a motel after the first night, which we should have researched beforehand. If I had bothered to type in two words on the trip advisory site then I would have read the seventy-five one star reviews describing it as the most dilapidated, dirtiest place in Wildwood. With my back singing out in pain from the uncomfortable bed…I ended up laughing off the experience and checked into another motel that was sheer paradise compared to the place we had just escaped. These days, there is a Garden of Eden’s worth of resources compared to the primitive technology available when I was a young boy. Internet on cell phones and GPS devices definitely shave something off the distress that is inevitable when one travels. But the greatest resources are those garnered from years of traveling and uncertain vacations. I am now aware that there will be difficulties, and they will be surmounted just like nearly all of my life obstacles.
Hopefully the purpose of ASD Vacations will be to teach youths how to congratulate themselves for rising above certain challenges that would have previously been crippling in nature. Everyone deserves at least a few days a year where the less-favorable of autism may not disappear, but at the very least it is placed on a backburner.