Q&A with John Brown of Camping with Autism across America

November 3, 2010February 18, 2021 Margalit Sturm Francus

What inspired you to travel with Devyn across the 50 states?

It was in response to a promise I had made before he was born.I knew he would be a teenager when I retired, and I planned to spend our summers touring our great country.When he was diagnosed with autism, I thought “Well, there go those plans.” Little did I know that not only would the trip still happen but could turn into a dual purpose venture.

As Devyn was growing up, I realized he had a tremendous love of the outdoors. It didn’t make any difference if we were in the woods, at the beach or walking in a downpour, as long as he was outside. He also proved early on, at the tender age of four months, that he was a good traveler.

At 10 1/2 months, he went on a 3500-mile journey from Florida to Washington and experienced his first two flights. So, as our travel advanced to camping, backpacking, and various roads trips t I decided to reinstate my original promise to him.
In 2009, when we started, I decided to call our adventure, “Camping with Autism across America” and to use it as an autism awareness trip.

First, looking at the particular portion of the mission, I had made a promise to my son and the time had come to fulfill that pledge. Autism, in most instances, is not a reason to hide one’s child.

The autistic child can enjoy the outdoors, scenery, and travel as well as other children. In a lot of cases, they can do it better.Second, our mission to autism and all parents of children within the autism spectrum is to show that our kids can go on trips, to museums, caverns and other places of historical or entertainment value. These children can get as much enjoyment value from these travels like any other child.

They may not react or show this pleasure the same way but parents, you know your child, their likes, and dislikes, what makes them happy and what makes them sad. Plan your trips with these things in mind. It will make an enjoyable trip for the entire family.

How many states have you covered so far and which one was your favorite?

We had been to many other states before 2009, but since the official tour began we have included the eight southern and western states of Alabama, Mississippi, Louisiana, Texas, New Mexico, Arizona, California, and Nevada.
We spent the longest time in California at the Marine Corps Recruit Depot, visiting various air museums, two presidential libraries, parts of the historic Route 66 and Death Valley.

However, the state we enjoyed exploring most was Arizona (and we still have to return to the Grand Canyon) as the people were most welcoming and drivers adhered to the speed limit!!!
We visited the Hoover Dam, Oatman- home of the Gold Rush burros descendants on Route 66, the’ transplanted’ London Bridge, as well as the Biosphere Two, Pima Air Museum and the aircraft “boneyard” in Tucson. We even got to meet Sheriff Joe Arpaio of Maricopa County/Phoenix.

Describe the planning and preparation for a typical trip.

For us, I’m sure our training is quite different from the planning done by most people.
We traveled this first stage using a tent, sleeping bags and a two burner stove. So instead of planning for a motel or hotel accommodations, we stopped where we were and spent the night. We did our best to stay off the interstates and were quite successful. We did make it a point always to contact the police/fire departments when we were going to ‘bed down’ in their area since we didn’t want to be pitching a tent where it wasn’t allowed.

This travel method also proved to be handy as far as places to stay was concerned. We ended up spending one night in the interrogation room of a city police department because they didn’t want us pitching our tent due to an incoming storm. In the Texas panhandle, we were given a motel room as the weather forecast said the temperature would drop down to zero during the night.

Another time, a retired sergeant major let us stay at a house he had in San Diego for four nights so we could spend time at MCRD. At interstate rest areas, we would set up a lean-to with tarps and bed down (we weren’t hassled, not even once) while during the times when we weren’t close to a town we would just find a spot and set up “camp”.

So I guess I can say that as far as lodging planning went we just sort of “winged it” according to the map. With all things taken into account, I guess we’ve been fortunate that change does not seem to be a significant issue with Devyn, as it is with other autistic kids.
In fact, I think he handled the different sleeping arrangements, the constantly changing scenery, and weather variations(we went from 75 degrees in San Diego in January to 3 below zero in Missouri in February), quite well.

I do realize some children have a difficult time with change, but I feel that can be somewhat overcome if parents would introduce change to them from the beginning. Of course, I’m not a professional.
The best advice I received at the time of diagnosis from the doctor was to treat my son just like I did my other children! While realizing that he won’t ever have a driver’s license or be entirely self-sufficient, I was and still am determined to treat him like I did my kids. I wish my other children would have been as trouble-free as Devyn has.

When stage two resumes (hopefully by 2011), there will be more planning involved, such as locating RV parks that we can use as a home base for a time. We are also getting ideas of where we want to go to cover the 50 states (Hawaii being the most difficult to plan for.)
We plan to park our trailer and spread out a 150-mile radius, see what we’re interested in and then continue to another park. Weather will also become a factor as we don’t want to explore Alaska in January with a 33′ trailer!There will have to be much more planning involved, and we will have to take general ideas and turn them into solid plans as we go.

What is Devyn’s diagnosis?

He’s considered non-verbal. He can repeat words and does come out with phrases occasionally, but there isn’t any conversation involved.He was diagnosed as TMH; trainable mentally challenged.

He does things around the house, etc. He can use the microwave with guidance such as telling him what numbers to push, walks our new family member Rufus, and can follow directions. He sets the table, puts the dishes away as I dry them, and things of this nature.

He has no problem operating the DVD/VCR player. He can do things with that, and I can’t figure out how to straighten it out! He does understand pretty well when he is talked to, though.

Does he actively participate in deciding sites to see?

He doesn’t participate in deciding where to go and what to see. The length of time we spend at any particular place is dependent upon his interest. If he is getting bored, we usually pack it in and get back on the road

Sounds like he has little or no sensory issues?

The only recurring sensory issue I have noticed is loud, shrill noises. If we are in a crowded or noisy place such as a restaurant, he will plug up his ears.The same goes whenever he hears a baby crying or a brat kid throwing a fit. He does the same when I yell at him once in a while. He also will not eat eggs, so I have to slip them in with French toast once in a while.

Now that he’s a teen, does he have any meltdowns that would affect your travel?

He hasn’t had any meltdowns. One can tell he’s in the teenager range, though. Once in a while when I ask him to do something he will give me “the look”! The look says, “Surely you aren’t talking to me!”
I think all parents are familiar with this. I guess if he melts during stage 2 we’ll just find an RV park and settle in until he un-melts (is that a word?). I probably come closer to melting down at times than he does. Or maybe that’s called the onslaught of a depression moment. I’m able to pick up on it and ride it out and thank goodness they are few and far between.

Where would you like to be in five years? Also, do you have any international travel plans?

Depending on the success of our autism awareness program I would like to continue going for autism awareness. I would like to give presentations describing our unique adventures in the context of autism. I honestly feel that we can become great ambassadors for autism awareness.

International travel? I haven’t given it much thought. If we were to travel internationally, I think New Zealand and Australia would be first on our list. We will just have to wait and see what the future holds for both of us.

No good trip is complete without bad stories.
Care to share any such stories?

That statement is so right!
Fortunately, our sad stories always had good endings.
On one trip, after touring the Carlsbad Caverns, we headed south to Texas around five o’clock in the afternoon. Shortly after crossing the Texan border, I noticed the truck was getting hard to steer.
I pulled off the two-lane road and raised the hood. We had a damaged fan belt. Since my cell phone had zero bars showing, I decided my best bet was to start waving; hoping someone might stop to help. Four cars zoomed by us heading south before one going northbound did a U-turn and came to see what our problem was.

He was from California and was on his way to visit his brother-in-law who lived about forty miles away. After making numerous phone calls and an astonishing number of additional trips, to fix not only the torn fan belt but an idler pulley as well, we were finally able to get back on the road about 9:30 PM.
These gracious people did not even consider taking any payment for their trouble since they thought it was such a great idea for me to be traveling with Devyn. We eventually spent the night in a picnic area where it was a balmy 22 degrees when we got up.

On our California trip, we spent a couple of weeks in the high desert just west of Twenty-nine Palms. As we got ready to tuck in our tent, one evening, I noticed the weather was beginning to look a little rough. During the night, the wind gusts reached 50plus mph as we remained in our tent. By 7 AM the wind had picked up again and I when I looked outside, the rain and sand were blowing almost horizontal to the ground. It was blowing so hard that Devyn’s side of the tent was lying on top of his sleeping bag.
At the first break, we got in the truck and used it as temporary shelter, until we could hold the tent down. You haven’t lived until you try to get a tent down and put away in a 35 mph wind. Devyn was a big help during this time as he had been learning his duties when it came time to break camp.
In Kingman, AZ we set up a tent on a side road, off the I-40 about 8 miles east of Kingman. It took about three days, but we eventually turned a three season tent into a four season tent when about 4″ of snow covered us. This was the storm that almost closed down Flagstaff and the Grand Canyon in January 2010. But we did live to tell the tale., so as I previously stated, our bad times always ended up well when all was said and done.

I would like to conclude this interview with my favorite tip,” Always be proud of your children and NEVER apologize for them being autistic. A man once told me Devyn was not “right.”
My answer was very simple and stated in a kind manner: “For Devyn, he is right” or whatever term one wishes to use it. Our kids’ love is unconditional as ours should be for them.
Plan your trips and enjoy not only seeing your child’s eyes light up, but also our beautiful country. ”