Reduction of Severe Behaviors in Autism— Slides from Special Interest Group at INSAR 2022

Here are the slides (in PDF) from the Special Interest Group on Severe Behaviors in Autism, held at the International Society for Autism Research on May 13, 2022, in Austin, Texas. They contain contributions from many of our presenters including Dr Lee Wachtel, Dr Imtiaz Mubbashar, Dr Matt Siegel, Dr Deborah Bilder, and others. There are 69 slides in the deck. We regret an audio recording is not available (per INSAR policy) but we will post more information about follow-up efforts from this SIG.

Some highlights from the slide deck:

From Dr. Lee Wachtel

From Dr. Lee Wachtel

From Dr. Lee Wachtel

From Dr. Matt Siegel

From Dr. Deborah Bilder

From Dr. Imtiaz Mubbashar

From Dr. Audrey Thurm, Dr. Alycia Halladay


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.

In Crowded AutismLand, One Issue Truly Stands Out

#AuthenticAwareness means we understand that not all autism problems are created equal

By Jill Escher

Every day I feel fairly bombarded by media, messages, and research articles about The Latest Terrible Thing in autism. Last week I heard about how terrible it is that parents speak out about their children’s disabilities how terrible it is to use the term “special needs,” the terrible terrible puzzle piece (of course!), and terribleness of autism studies not conducted by “autistic researchers.”

I admit my jealously. How I yearn for the luxury of such superficial moral quandaries.

Here’s what’s truly terrible. A muscular nonverbal 23 year-old autistic man who spends his days ripping and throwing things, and can’t leave the house without at least two strong people safeguarding him. A young autistic woman who ingests toys, soap, rocks, and even light bulbs. An 8 year-old autistic boy who has been kicked out of every school program available in his state due to his aggression. A bedroom smeared with poop. A mother who needs to pad the walls of her house because of her adult son’s history of pummeling sheetrock. A family that spends $80,000 a year that they don’t have on therapies, in-home support and home repairs. A family on the brink of sanity due to acute sleep deprivation. A severely autistic boy locked in the ER, in a helmet and arm limiters to prevent self-injury, with nowhere to go. A family that cannot take their daughter anywhere owing to her constant screaming and history of elopement. A mother who regularly turns to 911 calls to save her when attacked by her 280-pound adult son.

These are the true priority issues in autism. What the professionals call “severe, challenging behaviors,” or “externalizing behaviors.” These are things that ruin lives, break bones and homes, and impose astronomical financial costs and families, schools and care systems. No amount of wishful thinking about neurodiversity, inclusion or “autism acceptance” can make even the slightest dent in these overwhelming, calamitous problems that have tragically become commonplace across the U.S.

The number one job for autism research and practice today must be the reduction of severe behaviors. Compared to this, everything else strikes me as a luxury.

I have two children with profound “Level 3” autism, one who has severe behaviors, and one who does not. Their daily functional realities are so dramatically different that it seem preposterous they have the same exact diagnosis. I would give anything to transform my son’s version of severe autism into my daughter’s.

My son’s behaviors are so severe that not a single agency in our region will accept him as a client. My daughter’s behaviors are so mellow that she can go anywhere and do almost anything with minimal assistance, even a fancy fundraising gala, or skiing challenging slopes. My son cannot attend any family functions; my daughter enjoys all of them. The financial bill to care for my son is many times that for my daughter. My son is on five medications to help address his behaviors, my daughter is on none.

While the idea of curing autism is out of the question (you can’t cure a disorder arising from dysfunction of early brain development), finding ways to mitigate the severe behaviors may be in our grasp. At this time we see practitioners and parents throwing darts at the problem using any tools that might help, including behavioral therapy, a wide array of medications, sensory therapy, cannabis products, and in rare cases electroconvulsive therapy. Occasionally an underlying medical problem like a rotten tooth, is found to be at the root of the behaviors. Typically today’s therapies help somewhat but often they lose effectiveness or have unwanted side effects. Sometimes they are too expensive, or families can’t find a doctor to treat their children. Waitlists at the best clinics can be more than a year long.

We must do better. We need a Manhattan Project of Severe Behavior in Autism to identify better therapeutics for these patients so they can have a semblance of quality of life and to reduce the enormous toll on families, care providers, and systems. How truly terrible that we see so little research on severe autism, the area of greatest need.

But a bit of good news. At the INSAR conference (International Society for Autism Research) next month, NCSA will be working to intensify research in this area. We are co-sponsoring a special interest group, Reducing Severe and Challenging Behaviors in Profound Autism, with many leaders in the field. We see this as a starting point to make tangible differences in the lives of those with profound autism. Nothing in autism is more important.

Jill Escher is president of NCSA.

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