Soon after their sons were diagnosed with Autism Syndrome Disorder, Amy and Jono Opie made a promise - they will not let the condition stop their kids from enjoying life to its fullest. In 2018, they decided to make good on the promise, and have since embarked on a two-year long trip across Asia and Europe with their sons Elijah and Landon. The couple documents all aspects of their travels – the good, bad and ugly - on their website and Facebook page called Opietribe Trekkers to inspire other families.

Routine, set schedules and familiarity are intrinsic to the functioning of those on the spectrum, and travel with its inherent chaos can be quite overwhelming. But, Amy and Jono felt that travelling will not only help their sons see the world but also help them become more independent, and develop stronger social skills.    

“We tell our boys all the time that they can’t use their diagnosis as an excuse. Yes, they are on the spectrum, and their difficulties might be hard to comprehend for others. Yet, it is imperative to try and not give up. Through this trip, we wanted to help our sons build their confidence and improve their ability to tackle problems head-on. We also wanted them to understand that in life plans change, and we have to develop strategies and coping mechanisms to deal with these changes without being overwhelmed,” says Amy.  

In conversation with TAL, Amy who at the time of the interview was in Myanmar spoke about the exhaustive research she had undertaken before the journey, the challenges her boys faced due to the constant changes their travelling demanded, and the emphasis on carrying just seven kilos per person. 

Before we begin with your travel stories, please tell us about your wonderful family. 

We are a family of six. I have four kids, Kiara (19), Hayden (17), Elijah (14) and Landon (13).  We are travelling with Elijah and Landon as our daughter Kiara is serving a mission for our church, The Church of Jesus Christ of Latter Day Saints, in Manchester, England. Hayden finished school last year and came with us for the first six weeks of travel, but now he is back in Australia looking or a job.

Before we left for our South East Asia tour, we lived in an indigenous community in Queensland for five years.  Jono was the head of special education at the primary school there, and I was a youth worker. Before setting off, Jono took a two-year sabbatical, and I resigned from my job. We are arranging homeschooling for our sons through Queensland education, and will be returning to Australia in January 2021 but are keeping our options open.     

When did you find out about your sons being on the spectrum? What kind of changes did the diagnosis bring in your lives? 

Elijah and Landon were eight and nine respectively when they were diagnosed. Elijah has been having appointments with doctors and paediatrician since he was two. It was a struggle initially because intuitively we knew something didn’t seem right, but no one would listen to us! Then his teacher got on board and we found a fabulous new paediatrician who was able to diagnose him correctly. 

It wasn’t easy to get Landon diagnosed either. I knew he was on the spectrum, but Jono disagreed. We were living in the indigenous community, and the nearest GP or a specialist was about two hours’ drive. A paediatrician would visit the community once a month, but he too was in denial. It took nine months of me pushing to get a diagnosis for Landon.

For me, a diagnosis was not about labelling my sons, but to get them adequate support from both the health care system and their schools.    

Honestly, when we heard about the diagnosis, we were neither shocked nor surprised. My sons have always behaved in a particular manner their whole lives, and the diagnosis just gave a name to their behaviour. They already had a lot of assistance in place, so a formal diagnosis didn’t change much, but it allowed the boys to access proper support from their schools. 

Both have been diagnosed with Aspergers. Elijah struggles with communication - reading non-verbal cues and expressing his needs and wants- and socially interacting with others. Landon is more social but does not cope well when corrected, or with change and prefers things his way. 

When did you start planning the travel, and what kind of research did you undertake? What precautions did you take to ensure that the entire experience was comfortable for your sons? 

Jono and I have always wanted to travel and work overseas, but we had kids straight away! We put our plans in the backseat and thought we will wait till our kids have grown up to start travelling again. 

Then in 2015, Jono and I took a week-long trip to the United States Of America, and we were bitten by the travel bug. Post trip, Jono planned to take all our kids to the States for three months, but I wanted to travel more. Jono thought we wouldn’t be able to afford it. 

That’s when I started researching how other families travelled the world. I followed and communicated with numerous travelling families, and their experiences helped us plan our journey.

My planning comprised searching for flights constantly. I found interesting information and travel patterns that helped me figure out how to get inexpensive flight tickets. I also researched various types of accommodations and created a budget around the information I learnt. We didn’t do much research about travelling with Autism since Jono has a Masters in Special Education and works with children with disabilities. We figured we could use his expertise when we hit a roadblock. The main focus was to create a travel plan that was fun and inexpensive. 

We have lived in a caravan on and off for the past six years, so our boys are accustomed to living simply. To be honest, some of the places we have stayed so far in our trip have been similar to living in a dodgy caravan park in Australia! However, we always make it a point to listen to our sons’ complaints and acknowledge their discomfort. At our first hotel in Kuala Lumpur they said they were not feeling safe, so we very quickly cancelled our booking and moved on.

How many countries are you planning on visiting and why were these chosen? How many countries have you covered until now?

We are planning on visiting as many countries as we can! The current plan is to visit Thailand, Laos, Cambodia, Vietnam, Philippines, Japan, USA and a few other South East Asian countries if we can fit them in. The second year we are planning to travel through Europe. 

We stay in one country for as long as we can afford to, or when we want to move on. Some times we leave as soon as possible for myriad reasons - boys not feeling safe, or expensive accommodation, etc. – and sometimes we wished we stayed longer. 

Numerous factors, mostly monetary and personal, were at play while choosing the countries to visit. We visited Myanmar was because Jono’s grandfather was Burmese, and I want to go to Russia because my father was Russian.

As of now (at the time of the interview) we have visited four countries - Indonesia, Malaysia, Singapore and Myanmar. Soon, we will be off to Thailand. 

Why the insistence on carrying just seven kilos per person? 

Money! We all know carrying extra luggage on budget airlines is expensive; sometimes more so than the ticket itself. Initially, that was the primary reason, but now that we are travelling with only seven kilos, we love it!

We are thankful that we don’t have to carry or wheel around big bags all the time. We have a rule that if a given destination for the day is under five kilometres, we walk. Thus, having a lighter load helps us.

Also, we love that we don’t have to wait at baggage claim for our suitcases and we have fewer chances of losing them. We also appreciate the simplicity of not having too much stuff, and it saves us money as we can’t buy anything extra. 

What are the challenges you face while travelling with kids on the spectrum? How do you overcome them?  

Change is the biggest challenge, and while travelling, schedules can alter at the drop of a hat. One way to cope with problems is proper preparation. We plan and discuss our itinerary for the day before leaving the hotel. Any modification of plans is immediately communicated to the boys so that they stay in the loop and are not taken by surprise. 

But, there have been instances when we have had to deal with their meltdowns on the spot, and move on. When such an incident occurs, we wait for the boys to calm down and take stock of the situation, understand the triggers, and make a strategy to counter similar events in the future.    

Going through security is a hassle for us. Elijah will not move fast, and when goaded to, will have a meltdown. We are still trying to sort it out and make the process of boarding comfortable and calming for him by ensuring he goes first and has his belts off and bags ready for the security check.    

There were some extremely stressful situations too. We were supposed to be in Yogyakarta, Indonesia for 12 days. But, after 30 minutes of landing, we knew we had to leave as soon as possible, because four hotels cancelled on us, with three of them already paid for! It was incredibly taxing, and Jono and I made the mistake of making a quick decision to leave immediately without consulting with the boys. Elijah didn’t cope with the sudden changes and started having severe meltdowns. We calmed him and Landon down, and with the help of a map explained where we were, and why we were leaving. It helped, and they relaxed quickly.

In your travels, have you found people to be helpful and cooperative, or were they less accommodating to your sons’ needs? 

Our travelling experience until now has been an eye-opener. We were initially hesitant about other people’s reactions, but soon found out that many are extremely sensitive to our sons’ needs. When we were in Ubud, Indonesia, we signed up for a cooking class with two other travellers. Those conducting the class were so patient with our boys. When Landon tried to flip a pancake, and it landed on the floor, the host patiently allowed him to keep trying till he got the flip right; which was a huge relief. Otherwise, Landon would have had a colossal meltdown. 

We have also realised that many Asian countries are not aware of Autism and its accompanying characteristics. However, we have met many people who have been incredibly patient and willing to help the boys out without any reluctance.    

What experiences have stood out till now and made you feel that embarking on the journey has been rewarding?

There have been two such experiences. In Singapore, we visited Gardens By The Bay at night. It was a stunning sight! We’d heard about their famous light show, but didn’t know where to go to see it. We were about to head back to our hotel when we chanced upon it. Watching the lights was so surreal, and I had to pinch myself to believe that my family and I were actually travelling the world.

We were also utterly enamoured by the sheer beauty of Bagan, Myanmar. Natural beauty aside, exquisite pagodas stretched as far as eyes could see! Seeing my boys overcome hurdles and fall in love with these places and their rich history made us realise that the trip was the best decision we had ever made. 

How have your sons’ reacted to the journey, and how are they dealing with the constant changes in the environment, food, places and people? 

Our boys are enjoying the journey and have coped reasonably well with the constant changes that crop up. But if we don’t take the time to sit down and keep them abreast of the upcoming changes, it does become hard for them to manage. Having said that, travelling can be unpredictable, and sometimes plans change, and there’s nothing much we can do. In situations like that, we just have to sort it out with them, calm them down if they have an attack, and quickly move forward. 

At other times, if we become aware of an issue beforehand that can be irritating for the boys, we try to take precautionary measures. For example, our sons don’t like the idea of squatting toilets that are quite popular across Asia. So before booking a hotel, we ensure that they have western style toilets. 

We have tried to keep our morning and night routines the same and include the boys in planning our daily activities. We regularly let them email or call family back home in Australia, as they miss their interaction with their siblings. Initially, food was an issue with Landon. He was reluctant to try anything different and would stick to the same thing (chicken) as much as possible. With some encouragement and experimenting, he has now started trying other cuisines. 

How do you and your husband calm yourselves down when faced with overwhelming situations? 

Frankly, sometimes we don’t manage well either, and this impacts our boys’ ability to cope. When this happens, we take a step back and give ourselves a little room to breathe. Usually, one of us is calmer than the other and will take the boys for a walk or distract them with games, allowing the other parent to cool down. 

What advice would you give to other parents in similar situation who would love to travel but are afraid to do so?    

Just give it a go. Start small by going to a place near home. Do your research on the countries you would like to visit- do they have the necessary support services, is the awareness adequate in those countries, etc.

Prepare your child by including them in the planning discussions and educate them about the places you will be visiting, and the activities you will be doing. Let them know that things could change and help them with strategies that they can resort to when stressed or anxious. Always have an alternate plan ready in case the primary one doesn’t work. When you get home after the day's travel, reflect on what worked and what didn’t and utilise the learnings for the next time. 

We didn’t wake up one morning and decide to travel the world! We prepared ourselves by planning day-long, weekend and holiday trips to areas near our home, and slowly began touring farther. It takes time and immense planning, but it is not unachievable.

Read how they fund their travels.

To learn more about the Opie family, hop over to their website

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Terminology to use while describing Autism.