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
Latest posts by Russell James (see all)

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?