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.

Disclaimer: Blogposts on the NCSA blog represent the opinions of the individual authors and not necessarily the views or positions of the NCSA or its board of directors. Inclusion of any product or service in a blogpost is not an advertisement, is not made for any compensation, and does not represent an official endorsement.

"I no longer have patience for toxic autism ideologies"

#AuthenticAwareness from an outspoken autism mom: “We have to keep fighting. We have to be the ones to stand up and say enough is enough. You aren't allowed to change my child's diagnosis. “

The author’s daughter with severe autism.

By Seasons of Autism

It's 1:45 a.m. P is wide awake. There's nobody else here to take care of my daughter. Nobody out there in the community that has come to despise parents of autistic children so much is here caring for her. None of those people who say I'm not an advocate. None of those people who call me a horrible person. None of the people who claim to know her better than me are here right now. It's just us.

When you walk this journey please don't let anybody tell you what's best for your children. Especially don't let some random person on the internet who claims they know your child because they claim they share a diagnosis. Sometimes I have tried to just stay out of the fights or ignore it. But the other day I saw just how toxic the rhetoric has become. And over the past couple months my view has changed. I can't sit by as an advocate and allow parents to be treated this way. As caregivers we don't have it easy. This is a hard path. The reality for some of us is that our children will grow up and become adults who will continue to need lifelong care. Frankly I just no longer have the patience for the toxic ideologies being pushed.

My daughter is autistic, it is not her identity. It's her diagnosis. Autism and autism alone is my daughter's disability. Due to her autism she will profoundly be impacted her entire life. If you are autistic and have gone on to have children and live a life outside of a caregivers careful watch that is wonderful, but you aren't like my daughter. There's a reason why autism is a spectrum. Call it severity. Call it support needs. Potato, potato. Same difference.

I'm tired you guys. I'm so dang tired.

Being a mother to P has helped me to understand that autism is different in different people. For us, it's changed our lives. As I sit here listening to my beautiful teen script to herself and watch young children shows I'm acutely aware that we are different from those who rail so heavily against parents instead of supporting them. We are different because we understand the difference. So my page is a place to hear people, to understand that severe autism still exists, although in hushed tones. We wouldn't want to offend those who don't understand it. Don't recognize it because it doesn't fit their version of what autism looks like.

I am so darn tired.

So we won't bow. We won't break under the weight of pressure to conform or be canceled. We won't bend to the mob. I refuse to stop advocating for autistic children and their caregivers. I refuse to remain silent out of fear. I refuse to give up and hide in the shadows where they prefer children like mine stay. Voices who certainly can't speak for themselves so if you silence the parents then you've silenced every story of those who cannot tell their own story. Scary thought, isn't it? If we don't speak up the meaning of autism as a diagnosis of a disability will someday change. I've been saying that for quite a few years now. Never did I fully believe it could happen, now I'm not so sure.

We have to be their voice. We have to keep fighting. We have to be the ones to stand up and say enough is enough. You aren't allowed to change my child's diagnosis. Please understand me when I say I have wonderful autistic friends who do understand severity levels exist. They do understand the difference. They understand that stories like P's deserve to be heard, just like their own. So please don't be fearful of all autistic adults because I have wonderful friends who have been great help to me and my family. Friends across oceans who I know I could call on at anytime. Friends who also have had their voices squashed because they dared to disagree with the cult like mentality that has formed in some parts of the autism community. Just be careful who you allow in your circle.

“Stopping the bullies is vital. Stopping the threats is vital. Protecting caregivers is vital.”

I believe there's hope, but stopping the misinformation is vital. Stopping the bullies is vital. Stopping the threats is vital. Protecting caregivers is vital. When someone is saying something is abuse that needs to be looked at through a clear lens. Not a murky one where some people had a bad experience twenty years ago. The world of psychology is about learning and understanding. And it'll never be without some bad apples who probably shouldn't be therapists. But with any profession some people don't belong there. That doesn't mean you toss out all of it.

After all that has been said to me, some of the horrible things, I'm the one that's here for P. These people no longer deserve my respect, or even a response from me. They are no longer allowed to take my energy or my peace. Someday I'll stand in front of my Lord and Savior and I don't believe He'll shame me for saying parents can decide what therapies their child should have. I believe that beautiful day where I finally no longer suffer from chronic pain, where I finally no longer feel tired, or scared, or overwhelmed by anxiety. I believe that day He'll say well done, good and faithful servant. I don't believe we are here by accident. P was no mistake. P is beautifully and wonderfully made. And her home, her peace, her comfort is church. There is a reason she's so at peace there. It's reassuring to me because I know she has a connection to our Creator I probably won't ever understand.

So this is us. Take it or leave it. Seriously. I used to never ban people, and I always tried talking things out. But I'll no longer tolerate hateful people who spew ridiculous garbage. So if you've hung with me I think it's clear my mental health is suffering due to this mess. It has been rough. I have no tolerance for foolishness.

“Take us or leave us, this is our autism journey.”

This is our life. Sometimes it's extremely difficult. Other times are full of great victories. One thing is for sure Autism alone changed my daughter's life. As well as everyone else in our family. And while we've learned to appreciate the beauty, we also accept the emotional drain from the hard parts. And unfortunately for me, even physical pain is part of that equation. Take us or leave us, this is our autism journey.

Thanks for listening. It's 2:45 a.m. now and P is still not back in bed. It's going to be a long night.

#autismjourney #youcansitwithus #norestfortheweary #mentalhealthawareness

Seasons of Autism is the blog of an autism mom based in Nebraska. You can find Seasons of Autism here.


Disclaimer: Blogposts on the NCSA blog represent the opinions of the individual authors and not necessarily the views or positions of the NCSA or its board of directors. Inclusion of any product or service in a blogpost is not an advertisement, is not made for any compensation, and does not represent an official endorsement.