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.

Families Fighting for Fair Oregon Medicaid Policy for Extreme Caregivers

Attention friends in Oregon: If you can help advocate for waiver funding to be paid to family caregivers (the norm in many states such as California), please contact Jessa at jessareinhardt@gmail.com.

Below is NCSA’s letter on the matter.

Lilia Teninty
Director, Oregon Developmental Disabilities
Lilia.Teninty@dhsoha.state.or.us

Dana Hittle
Director, Oregon State Medicaid
Dana.Hittle@dhsoha.state.or.us

Sara Gelser
Chair, Senate Interim Committee on Human Services
Sen.SaraGelser@oregonlegislature.gov

May 23, 2022

Re: Urgent Need for Oregon 1135 Waiver to Address “Extreme Caregiving” via Family Caregiver Eligibility

Dear Director Teninty, Director Hittle, and Chair Gelser,

Among Oregon’s families supporting children with disabilities are a subset of families we know as “extreme caregivers.” They support children whose disabilities are so devastating that they must devote 24/7 attention to them, often sacrificing their jobs and income for this purpose.

These families have found that little outside help is available owing to the strenuousness of the labor and complexities of the work, such as challenging behaviors, complex transportation needs, and recognition of medical issues such as absence seizures and respiratory concerns. Families in Oregon have seen unqualified, inconsistent, and potentially abusive workers in their homes, though in many cases outside help is not available, at all — a situation worsened by the pandemic.

Allowing parents and family members to serve as paid caregivers is a win for children, families, and Oregon. Attendant care hours are already determined, approved, and budgeted. The only thing stopping thousands of children from getting the care and support they deserve is a single Oregon Administrative Rule.

This caregiving goes far beyond what anyone would consider normal parenting. This is not remotely like “paying parents for what they are already expected to do.” These extreme caregiving situations include, for example, keeping a nonverbal 15 year-old who hits himself and scratches off his skin safe from self-injury, preventing a severely 8 year-old autistic girl with a cognitive age of 18 months from eloping or ingesting rocks. Diapering a 200 pound young man who suffers violent meltdowns. Careful monitoring of a disabled teen with autism and suicidality. These parents and family members engage in Herculean work to care for Oregon’s most vulnerable and need your support.

National Council on Severe Autism urges you to not cut them off from life sustaining support on July 15th, when the 1135 Waiver ends. These families are desperate for help and are relying on you to extend this reasonable, and cost efficient, solution.

Thank you for your consideration. Please do not hesitate to contact us with any questions.

Very truly yours,

Jill Escher
President

cc: Jessa Reinhardt, jessareinhardt@gmail.com