In light of Autism Awareness month, Josh Heinz of Visit Greater Palm Springs shares his family background, what travel looks like as an autism family, and how the travel industry and greater community can make a difference.
My wife’s name is Linda. We are a blended family. She had three children in her previous marriage. Gillian, 25; Christopher, who is on the profound/severe/level 3 side of the spectrum, 23; and Jimmy, 20.
My son from my first marriage is Harrison, who is also 25. Like Christopher, he’s on the profound/severe/level 3 side of the spectrum.
It was our boys with autism who brought my wife and me together. Harrison and Christopher were in elementary school together. Linda is a music teacher. I am a musician. So, we had music and autism in common. We started dating, she joined my band, and eventually we got married. Together we’ve been doing our local benefit, the Concert for Autism, for 17 years and working on number 18 now.
We have our one son together. His name is Jack. He is 11. He is on the high functioning/level 1 side of the spectrum. Jack should be able to have a job, get married, and start a family someday—if that’s what he chooses.
Harrison has little ability to communicate. Most of his speech is mimicking or repeating what you say, but he understands a lot more than he can express.
Harrison will sometimes have meltdowns and behaviors. Occasionally this will include pinching or going after someone’s throat. But most of the time he just wants to watch cartoons or stem on dirt, rocks, water, bowls of rice, etc.. Harrison is in a group home in Arizona, near his mother. He has a program he goes to every weekday and the head of that program says he does well – as long as his routine isn’t interrupted. Harrison is not able to travel for leisure or recreation.
Christopher has a little bit more communication skills. He can answer simple questions. But does not handle multiple questions quickly very well. He does not like the word ‘No’ at all. He is highly anxious. This anxiety can result in very bad meltdowns when things happen unexpectedly or unpredictably. These can include hitting, screaming, or breaking things. He spends a lot of time on his computer watching Disney. He is in a group home in Moreno Valley, about an hour west of where we live. They tried putting him in a day program, but he had a meltdown the first day and they have yet to allow him back in.
Christopher actually loves outings, but only with his biological father. His father can take him to amusement parks, swimming, movies, out to eat, etc. usually without incident, although every once in a while, he will strike people that get too close to him. His father left California in 2018 and moved to a small Texas town, saying the cost of living was better there. This devastated Christopher. He went from seeing his father almost every-other weekend, to now seeing him only two or three times a year. The change has made his meltdowns more intense. They usually end up with him crying and calling out for his dad.
Until recently, our only family vacations were driving to Texas to see my wife’s family. To make it work, Christopher would stay with his dad. We would have to rent a car that I would drive with only Christopher in it. The rest of the family would travel in our van with Linda. We would drive from here to El Paso, TX all in one day – with stops about a 12-hour drive. Christopher’s dad would meet us in El Paso and take him for the week while we went to visit family in the eastern part of Texas. We’d repeat the same system for our return trip. We’d rent a car in El Paso for me to drive Christopher back. Bathroom breaks were planned around quieter rest stops and we always went to the bathroom in shifts. Everyone else in the van would go in, and then Christopher and I. We would never eat in a restaurant. Any meals were done through the drive-thru.
Last year we were fortunate enough to go on two vacations. We visited family in the D.C. area over the summer and returned to the area in winter. We were able to stop on the way back to see my wife’s family in Texas.
This was Jack’s first time flying, and he did great. We discovered that the Pittsburgh airport has a Sensory Room as a space for regulating away from the noise. We need more places like this – airports, malls, arenas, stadiums, theaters – to create sensory rooms where those on the spectrum and with sensory needs can go to regroup. It was worth it for us to fly into Pittsburgh instead of D.C. to avoid the hustle and bustle of the bigger airport.
The number one thing we need is simply more understanding and empathy.
Because Jack is high functioning on the spectrum, there aren’t many things we find we need when we travel or go to restaurants or events. The number one thing we need is simply more understanding and empathy. Jack can say or do things that are a little bit different. He will interrupt you while you are in conversation with someone about a completely different topic. Sometimes he can get up in your personal space, without realizing that it might be uncomfortable to the other person. Sometimes his volume is a little louder than others or too loud at inappropriate times. Occasionally, when eating, he’ll just eat with his hands instead of using a fork. For example, picking up a fried egg with his hands – resulting in the yellow egg running down his hands. These things go against established social norms and can result in hurtful words and behavior from some people. With more awareness and kindness, we hope people can learn to respond with compassion instead.
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