The Most Magical Place on Earth? With Autism, Maybe Not so Much

Anxiety and aggression got the best of a boy of a 12 year-old obsessed with Star Wars. But the family would do it again—with some key modifications.

With summer around the corner, NCSA is featuring a series about traveling—or not—with severe autism. This is part 3.

By Fred Marvel

When Disney World opened Star Wars Galaxy Edge on August 29, 2019, my son Aleksander immediately began planning his trip to Florida. Aleks is a huge Star Wars fan, and he also has Level 2 Autism, ADHD, anxiety and Sensory Processing Disorder. We understood the combination of a Disney vacation along with these diagnoses could be intense — for him and for us. 

After begging to go for years, Aleks finally got his wish when we flew to the sunshine state for a five day vacation this past January, and he couldn’t have been more excited. 

Amusement parks make sense to Aleks because there are rides with lines and shows with scheduled times. This environment makes more sense to him than a trip to the beach where he must figure out how to occupy his time; however, theme parks are also very hard on Aleks due to the crowds, waiting, noise, and smells. Because of this, the experience often becomes physically exhausting for everyone involved. 

To prepare for our vacation, we picked our resort based on its transportation options and proximity to the parks, and we watched YouTube videos so that Aleks could familiarize himself with the rides. Disney also offers a disability pass which helped minimize the amount of time we had to wait in lines — always a good perk with someone who doesn’t have much patience. Before we departed, we were confident we had covered all of our bases. Unfortunately, we did not take into account Aleks’ increased anxiety which began on the flight.  

My wife and I were flying for the first time with our three boys: Aleks, 12, and his brothers 8 and 4. Our four year-old requested to use the bathroom when we arrived at the terminal. While my wife helped him, we heard a call that our flight was starting to board. That simple message sent Aleks into a panic. We had plenty of time, but he was convinced we would be late and miss our flight.  When Aleks goes into panic mode,  he will use some colorful language, and this is often our first clue that he is dysregulated and needs a break. Thankfully, we made it with plenty of time to spare, and the vibrations and movements of the flight actually helped calm him down. 

The flight itself was uneventful and everything went according to plan until we arrived at the Magic Kingdom, and Alek’s anxiety skyrocketed. This anxiety combined with his sensory issues translated into a very difficult time for him. Even minimal waits for rides became a massive problem or any complaining from his younger brothers immediately got on his nerves. 

The first day convened with relatively few issues considering Aleks’ anxiety, but the second day was a different story. Hollywood Studios was very crowded, and Aleks became increasingly excited because his dream was coming true. He was finally going to Galaxy’s Edge! As we waited in line, our 8 year-old son began whining. This whining, along with the crowds, the excitement, and the anticipation sent Aleks over the edge, and he hit his brother. Aleks has made great strides over the years, and his aggression has greatly decreased, but he will still become aggressive when he is dysregulated.  

On our third day at the most Magical Place on Earth, it was my turn to be the target of Aleks’ aggression. We were in line for the Pirates of the Caribbean ride when I caught a right hand to the face, but our last day was the worst of all.  We were enjoying lunch at Hollywood Studios, and I could tell Aleks was having a hard time. He and I decided to take a walk and leave the crowded restaurant. We walked into a gift shop, and Aleks saw something he wanted to buy but he had already spent his money. I told him no, and when we walked away, he hit me multiple times. 

In hindsight, I believe Aleks’ diagnoses worked against him — especially his obsessive nature. He had watched numerous videos and had done so much research that he knew his way around Disney World before we even got there. His anticipation for this vacation was uncontrollable, and this anticipation led to exhaustion. When Aleks is tired, it is harder for him to deal with the sensory input that comes with spending a few days at a theme park. To top it off, his anxiety became crippling. Would we be late for anything?  How long are the lines? Would he be embarrassed if his brothers acted out? 

In the end, Aleks and his brothers said they had a wonderful time, but it was a sacrifice due to the amount of stress we dealt with. In hindsight, we would take another trip to Disney World or somewhere similar. Like most families, we learned, and next time we won’t cram so much into one trip. We’ll take more quiet breaks to relax around our hotel, and familiarity is a key to success with Aleks.  Next time, he’ll know what to expect. It goes back to our philosophy as parents — we are going to keep trying and learn from our mistakes.

Fred Marvel is a paralegal and podcaster who lives in the suburbs of Philadelphia with his wife of almost 16 years and three sons. His podcast, The Spectrum Dad, features interviews with members of the autism community and his own stories as an autism parent. You can connect with Fred on Instagram @thespectrumdadpod.

A Voice from the World of Inpatient Hospitalization

VOICES FROM THE FIELD. This is the first in an occasional series featuring stories and perspectives from the world of severe autism.

By Lee Wachtel, MD

Lee Wachtel, MD

On the first floor of the main building of the Kennedy Krieger Institute, locked double doors provide access to the Neurobehavioral Unit, a pediatric inpatient unit dedicated to the evaluation and treatment of severe challenging behaviors. Approximately 75% of the sixteen children, adolescents and young adults hospitalized here carry a diagnosis of autism, with the remainder possessing a range of other neurodevelopmental disabilities. The vast majority of the patients have comorbid intellectual disability; it is the rare exception to have a child with normal cognition. Many of the patients are non-verbal, rely on alternative and augmentative communication systems, or have limited to no functional communication.  Some have comorbid genetic syndromes and medical conditions, ranging from seizure disorders, gastrointestinal conditions to vision or hearing impairment. All have failed multiple treatment initiatives at lesser levels of intensity, often over the course of months to years. 

As I frequently explain to reluctant insurance reviewers, none of the youth are admitted for treatment of autism or intellectual disability. If I had a cure for that, I usually suggest that I would be sunning myself in Tahiti, rather than pleading for coverage of very expensive treatment addressing highly challenging, yet eminently treatable, behavioral and psychiatric pathology that happens to occur at pretty high rates in autism and leads to some devastating situations for my patients and their families. Third party carriers often try to deny coverage for my patients claiming that they do not meet “classic psychiatric inpatient criteria,” as they are not psychotic, homicidal or suicidal, and that “anyways they’ve been like that all their lives and you can’t really change it.”

So I attempt to explain that au contraire, the non-verbal autistic child with severe intellectual disability who detached a retina last month from hand-to-head self-injury, now has an oil bubble and scleral buckle in the back of his eye and could become permanently blind if he continues the behavior, the 6 foot plus, 220 pound autistic teenager without any home or community services who beat his mother so badly that she required hospitalization, or the cute little autistic boy who moves like the Roadrunner, swallows everything in sight and has had multiple items surgically removed from his stomach by Pediatric GI, actually are desperately clinically appropriate for inpatient admission as they are at imminent risk for severe, and at times unfathomable, harm.

If you push me, I might share what happens when an injured eye goes blind, how it shrinks and becomes painful, ultimately requiring surgical enucleation with either placement of a scleral shell, or stitching the socket shut. . . because I have sat in the ophthalmology surgical waiting area with a family whose autistic daughter experienced just that, a family where the father bought his wife a very expensive, professionally painted scleral shell for Mother’s Day, because that was all the mother wanted for her daughter.

I don’t work in a world of neurodiversity where autism is embraced and cherished. Most of the parents on the NBU would be tempted to let loose a barrage of expletives if suggested that their child’s autism is a gift. Make no mistake, ALL of the parents love their children beyond words, and have typically moved heaven and earth in order to gain admission to the NBU, but few like autism. As one parent informed us, “I love my son more than anything, but I hate autism.” Why is this so? In a world of autistic individuals playing the piano at Lincoln Center, giving speeches at high school graduation and moving on to university, how could one not be actively celebrating the unique gifts of each autistic individual? 

The cold, hard facts of the matter are that for many children with autism and their families, every day (and often every hour) is a struggle. As I am so poignantly reminded every time a youngster screams, bleeds, vomits, cracks his head against the wall, slaps, hits, kicks, bites, receives related emergency medical services, pees in the toy bin or wipes feces on the wall, there exist many individuals with autism who suffer from very severe comorbid behavioral and psychiatric pathology that have brought their lives, and the lives of those who love them, to a grinding halt. Survival is the overriding goal.

As much as we might like to believe otherwise, people with autism and intellectual disability do have a higher risk of behavioral and psychiatric disturbance than the general population. This has been demonstrated multiple times in the international medical literature. Honestly, I’ve never quite understood why this is something to hide or of which to be ashamed: if we can talk uninhibitedly about increased seizure risk and sensory needs in autism, why is discussing behavioral and psychiatric pathology taboo, or discriminatory? Certainly the last thing needed in the autism community is more fallout from mental health stigma. 

“Honestly, I’ve never quite understood why this is something to hide or of which to be ashamed: if we can talk uninhibitedly about increased seizure risk and sensory needs in autism, why is discussing behavioral and psychiatric pathology taboo, or discriminatory? Certainly the last thing needed in the autism community is more fallout from mental health stigma.”

But having spent the past fifteen years of my career working on the NBU, I have repeatedly seen how these patients have become the unspoken black sheep of the autism community. Few wish to consider their needs as children, and even less so when they become adults (despite the fact that said children will spend many more years as adults). Judging from the several hundred annual NBU applications and our 100+ patient waitlist, their numbers aren’t insignificant, either. Sadly, wait time for appropriate services is usually directly proportional to the severity of behavioral and psychiatric pathology, with the kids I affectionately refer to as the “heavy sluggers,” ie. the bigger kids who can pound themselves or caregivers into bloody oblivion in seconds, waiting the longest, and sometimes never receiving help. Few psychiatrists, neurologists or developmental pediatricians are trained and equipped to safely and efficaciously manage severe behavioral disturbance in autism. Emergency rooms are afraid, and honestly tell desperate families that they have nothing to offer, and to please not come anymore. Most standard inpatient psychiatric units won’t touch highly aggressive and self-injurious autistic patients with a 10-foot pole, and similarly balk at the mere mention of “autism,” even if the reason for admission is severe depression, psychosis or suicidality, reasons for which any other American could be treated in a hospital!

“Emergency rooms are afraid, and honestly tell desperate families that they have nothing to offer, and to please not come anymore. Most standard inpatient psychiatric units won’t touch highly aggressive and self-injurious autistic patients with a 10-foot pole, and similarly balk at the mere mention of ‘autism.’”

A handful of inpatient units exist across the United States that serve a similar population to the NBU, although my unit is fondly recognized as the end of the train line. Access to other units is also highly limited, and varies widely according to state of residence, age and third-party payors. Many beds are accessed by families “camping out” in the local emergency department for days to weeks until a bed becomes available, with the child often physically and chemically restrained to maintain a minimum of bodily safety. Never mind that if a family chooses to not move into the ED and await a bed (a common circumstance as most parents must work to pay the bills and take care of other family members) insurance might later deny admission, stating that clearly inpatient care is not warranted if the child has “just been waiting at home.”

One of our patients waited nine months in a modified Plexiglass room in the ED, was fed meals through a slot in the wall, and bathed only a handful of times. A truly tragic situation, but one that was quite understandable given the high volume of highly-trained staff and extensive behavioral and psychotropic interventions ultimately required to bring this young man back to better health. 

These patients and those who love them deserve a strong voice in the autism community. There is only so much advocacy they can pursue, as the youngsters do not have the cognitive capacity to advocate for themselves, and their families have their hands full just keeping them safe and getting from one day to the next. They are exhausted. As one parent so aptly told me about 24 hour caregiving “it’s like being a world-class athlete, you have a limited shelf-life.”

I have heard countless talks where people claim that every autistic individual has a voice, can make choices and be included, and if he isn’t included, its society’s fault. I wish that was true, but it’s simply not, because not everyone with autism functions at such a level. It’s like saying that everyone with hypertension can be managed with diet and exercise alone; they can’t, because some people’s biology simply won’t allow such. You can’t trump biology, and biology has placed some people with autism – many more than the autism community would like to recognize – at the very severe end of the spectrum. An Afghan refugee family once asked me if their autistic child could be cured with a brain transplant – a very innocent question from people who had fled the Taliban in an empty petrol truck over the Khyber Pass and had limited exposure to Western medicine – and sadly I had to explain that we just can’t yet change the brain with which a person is born. 

“You can’t trump biology, and biology has placed some people with autism – many more than the autism community would like to recognize – at the very severe end of the spectrum.”

The same family told me that had they remained in Kabul, their aggressive autistic son would likely have been removed from the home by the authorities and left to die in the wilderness.  I’ve heard similar stories from colleagues who have been in Africa, as well as those who worked in Eastern European mental health institutions prior to the fall of the Iron Curtain. Terror and poverty don’t seem to lead to good resources and opportunities for anyone, let alone the most vulnerable.

I do, however, firmly believe that society is judged by how it treats its most vulnerable citizens, and the US is in an economic position to better serve those with the greatest needs. Individuals with severe autism whose behavioral and psychiatric challenges reach severely life-limiting proportions must be served with just as much vigor and dignity as those on the higher-functioning end of the spectrum, and their needs cannot be brushed aside. I “get it” that no parent with a toddler newly-diagnosed with autism wants to imagine that he won’t become a scientist or performer, and that high-functioning autistic self-advocates don’t want to acknowledge that some individuals with autism cannot make any choices beyond what to watch on their iPads or flavor of ice cream to eat. But as I often remind my own children, you don’t always get what you want, and you can’t stick your head in the sand and ignore an entire group of people simply because their needs aren’t necessarily pleasant to consider and don’t fit your agenda.

And if the autism world wants support and understanding in considering how an autistic student could be supported to succeed at university, or enjoy a city’s day spa despite the sounds and lights, then it cuts both ways, and you must show care and regard for the other end of the spectrum, and work actively to find viable solutions to better their lives as well.

Lee Wachtel, MD is physician based in Baltimore, Maryland.