Travels with Autism: My life on the road12 min read

In May of 2015, I was lost. My career as a psychotherapist was slowly going the way of the buffalo after I left my PhD program at University of New Mexico the previous October, a unwittingly traumatic experience, which landed me in a residential treatment facility for the month of November.

I emerged and started my own practice, a consultation and counseling service where I could make my own hours, i.e. work as little as necessary to assist my recovery. Most importantly, autism wasn’t even on my radar (this should go to show how little common clinicians and researchers understand about autism).

I was working less than ten hours a week, and I was melting down multiple times a day. It was the same experience I’d had with every other job: I just couldn’t hold it down.

My wife was the one who told me to quit. “Maybe it’s time you finally focus on music?” She asked one evening. That was all it took: the next day I informed my partners that I would be leaving the practice, and that my office was officially available for rent. I started booking tours in earnest, and within six months, I was living part of my life on the road– inside a 2011 Honda Element converted into a mini-camper.

Since then, I have lost count of how many tours I’ve embarked on. I’ll say this: We got the Element with less than 100k on the dash; now it reads 260k. Most of the tours I go on are a mixture of extreme excitement and ecstasy and obstinate anxiety and pain.

It has taken my wife and I these four years to figure out how the touring lifestyle can work for me, because honestly, there isn’t much about having a career in music that mixes well with autism.

I have been stranded in South Dakota because of autism burnout, I’ve been stuck in Twin Falls, Idaho with a case of suicidality so intense my wife had to fly into Salt Lake City and drive me the rest of the way home (and it wasn’t the first time this has happened).

Late nights in noisy clubs assault my senses. Strangers talk to me after shows, each one wanting an authentic interaction, and I am unable to give them one (but I can sell them a T‑shirt, no problem). At the end of my typical day, all I want is to crawl into my Honda Element (named “The Gray Haven” for a reason), and rest in my cocoon while I recover, watching episodes of Community and Ducktales.

But I can’t.

I have to talk to these folks, I have to settle with the talent buyer or club manager, I have to load out, and I have to sit at the end of the bar until 2 a.m. until all of these social and financial transactions can finish. Then I get into the car, wired tight with the sensory and social explosions of the night, and I drive a few hours to let my mind wind down. I often don’t fall asleep until 4 a.m.

I can’t stop doing it because I have these barriers. It’s one of the only things in my life I find meaningful. It gets me out of my autism shell, forces me to see and experience beautiful and wonderful new places, and it has definitely introduced me to a couple of the finest musicians and people across the country.

So, I can’t ditch it because it’s hard: it would break me. In place of that, my wife and I have been working very hard for the past fifteen months on how I can tour and continue my meaningful existence, without her having to fly halfway across the country to drive me home.

It’s a living document, a work in progress, and continually evolving and adapting to whatever my current autism needs are (because we autists know what we struggle with today may differ completely from what we’ll struggle with in six months).

Think of traveling as a sweater with several threads loose that need to be cut. The threads are stressors.

Preparation

The seemingly-obvious first step is prepping for your trip. It seems obvious and something that naturally happens, but it doesn’t. As an autist, prepping takes a new, and wholly obsessive trait.

My prep routine is the same for every trip, and that’s part of the coping skill. Keep it the same, don’t change stuff around. Change is going to be enough of a roadblock while you’re actually traveling, you don’t want change-stress hanging around your head if you can avoid it. I start my prep with one of my favorite things: Lists!

Lists

I use several exhaustive lists, all on one document for easy reference. My first list is always what clothes I will bring, and then I list the contents of my personal bag carrying iPad, books, etc. I eventually get to toiletries after I list what food I need to bring and what camping equipment will be necessary.

Often, the most important list I make is what music equipment or gear I need to bring along (getting caught without a microphone in Minneapolis sucks). This document often reaches 3–4 pages long. I save to the cloud so I can access it from my phone, and before I leave, I read through it and recite where each item is located in the vehicle. I rarely forget things now, which cuts off that thread of stress.

Itinerary

Second in my preparation is writing my itinerary. I spend a few days planning my days sometimes down to the minute. It seems obsessive, but when my brain clouds up and I’m feeling really toasty (see: almost burnt), it’s important to have every detail written out.

I include information regarding where I’m sleeping, what time I’m supposed to be where for a show, and even seemingly innocuous information like where I’ll be spending the morning hiking, or what coffee shop I may go to to get some work done. It’s all there on the itinerary, all on my phone and also in hard copy so I can reference it regularly.

Uncertainty is a thread that can unravel the whole sweater.

The third and maybe the most important step is going over the itinerary during my morning check-in times with my wife. We go over details that may not be on my lists, we go over what I will do in every conceivable situation I may find myself in.

I picture myself driving, setting up my camps, playing my shows, and interacting with people. I picture myself running out of gas or breaking down and exactly how I would handle the situation. I picture myself having a meltdown and what I would do to comfort myself and keep safe.

I do this over and over again, picturing success each time, paying attention to minute detail, until it’s ingrained in my head. By going through this process a few weeks before the actual trip, I’m able to eliminate some of the unknowns that would typically cause anxiety.

One of the most important understandings of traveling with autism is we’re inevitably going to have some type of difficulty, so we want to reduce the situations where that could happen.

Maintenance

The day is here! I’m in the car having made my traumatic goodbyes to my wife and dogs as I enter the relative unknown of a tour. Anything can happen, and I’ve prepared myself for as many of those anythings as I can think of. Before leaving, I have tea with my wife and we go over each item on the list, and I recite exactly where I packed it.

If something is missing or I can’t remember, we address it. Dogs get loved and hugged, tears are shed. But finally, I put my foot to the gas and head out. Now the important task of maintenance is underway, and I have a few tips for how to do this.

Routine Sheets

First, I like to have what I call a “routine sheet.” This is a hard copy printout that I fill out every day, and it lists the things I’d like to accomplish. Here is where I get very specific: I organize it by morning, noon, and night, and I try and fit in as much as possible.

I have a section for my menu, a section for info I will need if I’m playing a show that particular day, and two special sections: One where my wife leaves me a note (she meticulously plans these weeks in advance), and one where I leave a note for myself. I fill these sheets out in the evening before bed, and I keep them on a clipboard where I can see them at all times.

Traveling Soundtrack

Second, I am very mindful of what I’m listening to while driving. I will often go on hours-long stretches where I listen to nothing but the hum of the highway. I try and keep to mellow music, and there are some good choices out there that fit the “mellow-but-energetic” profile (Tycho is a favorite).

Most of the time, however, I’m listening to an audiobook. There are apps out there where you can connect to your library and download audiobooks for free. I stick to Stephen King, mostly. It’s entertaining and the time goes by much quicker.

It’s important to remember the assault constant music or words can have on our hearing. If I’m listening to music for six hours on my drive to San Francisco, my ears are shot even before I get to the club.

This is practically begging for a meltdown on the following day, which could lead to a cancelled gig, and could snowball into multiple days of meltdowns, multiple cancelled gigs, and eventually complete disaster.

Accommodations

Another sensory consideration is where I decide to stay at night. As I mentioned previously, I like to camp because I’m really into ecopsychology as treatment, and nature is definitely a special interest. I now have a pop-up camper in the bed of my pickup, which is a serious upgrade from The Gray Haven.

There are nights, however, where I can not sleep in the open for whatever reasons, and I have to seek more traditional accommodations. I have found hotels to be problematic due to their level of unpredictability. Thin walls make lousy neighbors, and most hotels have thin walls. If I’m on any floor but the top, I’m going to get noise from the ceiling, too.

Every time some kid jumps off the bed upstairs, I’m jumping out of my skin. I find renting an AirBnB often eliminates the predictability problem. I always get a property where I don’t have to talk with the owners or walk through their house, and it has almost always worked out.

I have complete control of the environment. If you must get a hotel room, call ahead and ask if you can get a corner room on the top floor. Explain you are autistic, and they usually try their best to accommodate.

Meals

Food choices are incredibly important. A lot of autists experience digestive concerns due to the high level of stress we live with. Foods that may not bother neurotypicals often bother us. It is incredibly important to learn your digestive profile and avoid those foods that would cause any discomfort.

Fried foods, beer and alcohol, gluten, dairy, and even sugar can cause bloating and gas, and these incredibly uncomfortable feelings will contribute to sensory overload, not to mention the gut microbiome-mood connection, which I won’t get into here (oversimplification: inflammation in the gut can lead to depression). Again, the goal here is to reduce the number of stressors.

Toolbox

Finally, have your toolbox within arms reach. I have an “aspie bag,” which is a misnomer because Asperger’s isn’t my diagnosis– because it’s not a diagnosis anymore. I’m trying to come up with a better name, but so far nothing has stuck.

It’s a bag with all my tools in it: my iPad for watching cartoons or reading comics, my noise-cancelling headphones, my journal, a book with word searches, various stim items, cannabis and other medication, and anything else I might need. I can access this from the driver’s seat.

An interesting inclusion in my bag is a set of notecards on a ring that have my options written on them. If I’m in a meltdown and can’t think straight, I have these cards to remind me of what to do. They are invaluable and I recommend everyone make some. In addition to telling myself what can be done, I can also show a card to someone else if I need help getting a need met.

Decompression

The final step I want to talk about is the vital process of decompression and debriefing. After a day of traveling, my senses are completely fried, and I am a piece of toast. I’ve been driving, hiking, and exploring, and most likely I’ve just played a show (although I’m smart about spacing my shows out to give me time for this decompression).

What I need is solitude, silence, and the resting embrace of my home on wheels. I have many decompression activities, but my reliable go-to’s are the same television or cartoon shows ad nauseam, comic books, or whatever audiobook I’m in the middle of.

I use cannabis to wind my mind down, which is especially necessary after shows when my brain is completely wired. I put my show or book or comics on and let them lull me to sleep.

Each morning I have to make a conscious effort not to rush around. My natural tendency is to get all my stuff together and get on the road as soon as possible, but generally speaking this is completely unnecessary.

I force myself to make my tea and drink it in contemplation of the previous day, as well as the day ahead. I debrief by writing in my journal. I go over my routine sheets, and then I do what has become the most important part of my road routine:

I walk.

I walk for at least twenty minutes to ground myself and get my endorphins moving around. I’m generally camped in a beautiful spot ‚so I can also soak in the healing of the natural world, engage my special interests, and let my mind go where it wants.

__________________________

I can’t let being autistic keep me from experiencing this part of my life. I struggle with the creation of meaning ever since going on disability, and these tours– which are anything but lucrative– help me feel like I have something to give, and something to look forward to.

Honestly, I wouldn’t get out of my small area barely at all if I didn’t have these tours to motivate and push me. Traveling has been such a boon for me as an autistic person by giving me these two things I sorely need. I’m quite grateful for the privilege to do what I do.

IMG_2810
A good day on the road in Anacortes, WA. Photo: John Ellison
Russell James
Follow me

2 Comments

  1. Wow, THANK YOU! If only we had step by step guides like this for everything from when we can start reading… we might not all be so traumatized. This makes me feel like it’s possible to do something I love some day!

    1. Kira,

      that’s what NeuroGuides are for.

      Half the art of a guide like this is to get it to the right person in the right time and the right place.

      What do you love?

Talk to us... what are you thinking?