The California Zephyr: Train Ride to Reno with Hunter
By Don Mariacher

My godson, Hunter, has always been fascinated with trains. Over the years he responded with great enthusiasm as he was often given videos, games, and books that focused on that subject. One of his favorite activities for a long time was starting, stopping, rewinding, and then replaying a video of a train going through tunnels. I can still hear his sounds of his enjoyment.

As he grew older, he was taken on short train rides and responded with excitement at the start of the trip but then would fall asleep as the movement and sounds seemed to calm and comfort him.

Recently, his mother and I decided to try a longer trip. We booked in Amtrak coach for a roundtrip from Emeryville, California, to Reno, which is approximately a 7 hour ride. Admittedly we felt some anxiety because you can’t stop the train and go home if there is a behavioral problem. There are unknowns such as Hunter having to interact with unpredictable attitudes and behavior from conductors and other passengers, while at the same time, we would be hoping the range of Hunter’s behavior would allow others to enjoy their trip. At home, Hunter had his familiar room with his personal items such as his own computer and video player that he could use at any time and often calmed him. Equally important, he could eat when hungry. His environment at home was controlled, safe and familiar to him. The long train ride could be a real challenge in a number of ways.

Hunter and his mother drove up from Aptos and I arrived from San Francisco early in the morning. He seemed excited but had evidently told his mother, “No more trains. Whew, I am tired of them.” We knew somehow this train ride would be different so choose to calmly talk of our excitement and he seemed OK with this.

As the train arrived, he seemed to get genuinely excited by the larger-than-life presence of the e engines and all the passenger cars. We walked along the tracks until we came to our car, the very last one. We were lucky to get onto a somewhat empty car, and because we were among the first to arrive, we were able to take seats toward the back which we hoped would minimize unnecessary stimulation from contact with other passengers and crew. The conductor came by for our tickets and seemed somewhat abrasive, like he was a bit burned out on his job or perhaps had an argument with his wife earlier this morning. In any case, Hunter immediately picked up on this and made several “No” comments to express his reactions. We knew what this meant but the conductor seemed oblivious.

The train moved past the usual local scenery, by stretches of Delta waterfront, over rivers and assorted bridges, and secretly through backyards of small towns. Hunter was glued to the windows and made some appropriate basic comments about what he was noticing.

After the Central Valley, we passed the foothills beyond Sacramento, and finally headed higher into the often breathtaking views of the Sierra. While these views are generally a joy for adults, we know children, especially children who have autism, can be easily distracted and not focused on what we think they should enjoy. To our surprise, however, Hunter remained fascinated with what he saw. And, we were certain that the train’s constant movement at varying speeds with the constantly changing views also seemed to calm him.

We took him to the observation car but he didn’t seem to need the enhanced view. We also wondered if this might have been his discomfort getting from car to car. In any case, we had our lunch back in our coach seats and looked forward to our arrival in Reno. At one point, I offered him my laptop to play a Luxor game and he learned to play within minutes and scored easily. No surprise!

We booked a hotel just a few blocks from the train station which was a good idea. It was very warm and we were tired. Walking through the slot machine area to get to the hotel registration was hard. So much stimulation! We were pleased that no longer do the winning coins clank in those trays as that might have been too much for him to handle. Once in a room, Hunter was able to play a movie/game on the t.v. A brief rest and then we were off to dinner at a nice restaurant where we asked for a table in the back which in the end wasn’t necessary. Hunter was just fine.

Up early for breakfast, checkout and then to the train station to greet the California Zephyr as it arrived on time to carry us home. It was another pleasant trip for all. There was a fellow passenger who insisted on talking a lot which Hunter didn’t like, but he was able to cope as good as his mother and I did under the circumstances.

Hunter now wants to take the train again, perhaps next time to Disneyland. While I am not certain why Hunter loves trains so much, I guess it must be a universal response as my own childhood delight with a train ride left me so satisfied. So, over these past two days a good time was had by all!

Researcher Spotlight: Dr. Paul Shattuck

Dr. Shattuck is a national expert on disabilities, specifically autism.He has published a number of articles on the prevalence and course of autism as well as on policies and services for people with autism and their families. The Journal of Autism and Developmental Disorders recently published his article on how autism symptoms can improve with age.  We interviewed him about this study for our Research Spotlight.

Can you describe what you were looking for in this study and what prompted the investigation?
When I was a graduate student at University of Washington I worked with Dr. Marsha Seltzer, who was conducting a large study that followed adolescents and adults with autism over time.  This project presented the opportunity to look at what happens to people with autism as they age.  I wanted to answer a very simple question, “What happens to the core symptoms of autism over time.”   We studied a group of 241 adolescents and adults with autism over four and a half years.

Tell us about your findings.
Although some individual’s symptoms remained the same, a greater proportion of those studied showed that the core symptoms of autism improved over the time period examined.  Adults over the age of 31 showed the greatest improvement and the least maladaptive behaviors.  

We also found that during the stages of live we were studying, there was a greater prevalence of impairment in non-verbal communication and social reciprocity than in verbal communication or repetitive behaviors and stereotyped interests.  This lends support to the idea that impaired social reciprocity is more central and more persistent than the other core symptoms of autism.

Did this study look at variables such as medication, placement, or quality of services?
No.  The study was not designed in a way that would allow us to test the impact of interventions. 

What do you attribute the improvements in the older age groups?  Do you feel that it could be because they are in less demanding environments?
I can’t really say based on this study.  I am just getting ready to start a new study that should help us figure this out.   A few things to keep in mind.  Number one is that developmental delay is not synonymous with developmental arrest.  You have to think about human development on a life span – from birth to death, even though so much of what we hear about is focused on infancy and early childhood.  People generally develop new or improved skills in response to a challenge, they don’t just spontaneously improve.

What are you working on now that you are excited about?
I am just preparing to start an NIH-funded study that will look at some of the things you have asked about.  It will be a five year study following 1,000 adolescents with autism as they age into young adulthood.  The study is piggybacking on an existing longitudinal study following 12,000 adolescents as they age out of Special Education and enter young adulthood.  It is a very diverse and nationally representative sample that is richly characterized and has participants who have received a wide variety of services. 

Transition to adulthood can be very difficult for people with autism and their families.  Is there anything you could share to help families with this process?
As a society we do a horrible job of supporting families who are entering this time.  When a young adult exits high school, entitlements run out and it can be like driving off a cliff.  All of a sudden a family is faced with what to do with their child and the person with autism is experiencing what they hate the most – a huge change in routine and/or environment. 

My number one piece of advice would be to start planning for this time immediately.  I know that parenting a child with autism is very demanding and that by the time adolescence rolls around families may be exhausted.  Families have spent the early years learning about different therapies and IEPs and now they need to start all over, learning about the special education transition process.  But you just have to buckle down and do it.  The best predictors of positive outcome in young adulthood are parent engagement with the transition process at an early age.  You have to pace yourself – it’s a marathon and not a sprint!