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.

Welcome to (De Facto) U.S. Policy: "Autism Housing for Rich People Only"

#AuthenticAwareness requires that we see the near-complete absence of realistic policy addressing the housing needs of the rapidly growing number of adults disabled by autism.

(Stock image)

By Jill Escher

Ten years ago, when I started giving presentations about housing options for adults disabled by autism, my characterization of U.S. policy on this most urgent matter boiled down to one phrase, it’s “Autism Housing for Rich People Only.” I said this because adults with autism whose income was limited to Supplemental Security (about $900/month) could not afford rent anywhere in our region, because it was nearly impossible to obtain rental subsidies, sometimes called Section 8, from the local Housing Authorities, and because California was failing to produce more licensed homes even as it shuttered developmental centers.

But in these talks I would express some hope that considering everyone recognized the tidal wave of disabled autistic adults, within a decade we should see a shift toward a more rational and fair system, a system that allows for an array of viable and affordable options for ASD adults incapable of earning a living and caring for themselves.

Now that we’ve time-traveled to this point, I can only say that, instead, things have become worse, much worse, with many factors conspiring to move the autism housing crisis from downright terrible to an absolute nightmare.

Housing costs are soaring, with rents and home prices more than doubling in my area. Concerns about freakishly bizarre Medicaid rules beloved by “disability advocates” stunt desperately needed cost-effective development for people with I/DD receiving HCBS waivers. The federal Department of Housing and Urban Development (HUD), which ostensibly provides needed subsidies, suffers a history of outright discrimination against I/DD-focused developments. Intermediate Care Facilities (ICF) continue to decline in number. The uber-ideological federal Administration for Community Living has turned its back on severe autism, lavishing its attention on the needs of the high functioning sector. Many local resources have diverted to the mentally ill and addicted homeless. And all the while the population of young adults disabled by autism continues to escalate, living with ever-older parents hobbled by ever-more ailments.

The result? An intensifying of our repugnant national policy of Autism Housing for Rich People Only.

So what can we do about it? I think we can make progress toward sensible, equitable housing opportunities for our severely disabled and vulnerable autistic adults, no matter what their family income, via the following:

As a threshold matter, prominent voices in the autism advocacy community must stop mythologizing autism as a mere “difference” to be “celebrated” and instead act like grown-ups and speak truth to power about the dire lifespan needs of this often devastatingly disabled population. Certain organizations sow complacency exactly at a time we should be stoking flames of urgency. Further, we must boost recognition that severe autism should not be lumped in with every other disability category when it comes to housing — these individuals often need indoor space, outdoor space, staff areas, security elements, materials and amenities absent in almost all generic “low-income” housing.

Second, we need HUD programs devoted to prioritizing housing subsidies for the autistic and I/DD, without arbitrary restrictions (such as limiting any new development to a maximum of 25% with I/DD), and without lumping the severely autistic in with every other low-income contingent. Too often new Section 8 vouchers for I/DD are restricted to those exiting institutions, and precious few adults with autism reside in institutions — in California it’s less than .05%. Thousands of HUD vouchers go unclaimed, which is absurd given the desperate need.

As a landlord who over the years has served many tenants with autism and I/DD, including several with severe autism, I can attest to the power of Section 8 vouchers, which cover rental costs over the tenant’s contribution of 1/3 of the tenant’s income (which is usually about $900 in SSI, so the tenant pays only about $300 of the total rent). These tenants are all extremely low-income and able to break through the national policy of Autism Housing for Rich People Only via the wonders of Section 8 subsidies. But they are the lucky ones, as most ostensibly eligible adults with autism in our area don’t stand a chance to obtain vouchers anytime soon.

Third, we must stop the madness about the Centers for Medicare and Medicaid Services (CMS) Home and Community Based Services (HCBS) “Settings Rule,” which has created a culture of fear among those striving to create disability housing. People are reluctant to create new housing opportunities if there is a chance that a state Medicaid agency will withhold services and supports based on arbitrary litmus tests around size and character of the buildings, or the presence of disabilities among the other inhabitants. Disability activists’ zeal for a one-size-fits-all type of setting has effectively resulted in the de-funding of viable and affordable housing options. And of course, we need more HCBS vouchers available to our population, paying rates that attract and retain competent service providers.

While certainly there are other mechanisms to expand housing options, from a more robust approach to Intermediate Care Facilities (ICFs), to more family-oriented solutions such as legacy homes and accessory dwelling units, substantial changes at HUD and CMS federal level could go a long way toward the policy we need: Autism Housing for All Adults Disabled by Autism, Period. I realize this is all easier said than done, but it’s a conversation we must be having at the federal level if we are ever to address this mounting crisis.

Jill Escher is President of the National Council on Severe Autism.

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