At first glance, Carson looks like any other “normal” 11-year-old boy standing in line to get into a minor league hockey game with his parents.
Try to strike up some small talk, asking him his favorite player or where he goes to school and you’d realize something is different.
But you’re working the security scanner, too distracted and hurried to pick up clues.
You see this boy with what looks like an iPhone hanging around his neck, and you think, ‘These kids and their devices, can’t even put them down for a second!’
Now your frustration grows and blood pressure rises as Carson moves slowly, as if he is disobeying your non-stop request to “Place everything in the bin before going through the scanner.”
Now the boy and his parents arrive at your scanner. The parents seem to be enabling this kid!
Dad tries to say something as he is first through the scanner. But it’s crowded, you’re in a hurry and you don’t have time for excuses. You bark, “He can’t come through with that thing on!”
Next up, Carson freezes when the alarm goes off as he enters the scanner.
Mom, who was silently dreading this moment, fights back a combination of tears and fury, saying through gritted teeth, “Let’s just leave.”
Dad goes back through the scanner and starts trying to take the device off the boy. Now things really go haywire.
Carson begins to howl. Then he starts to HEADBUTT his father.
You’ve had enough and while you think ‘What is wrong with this kid?’ you lose it and scream at the parents to “GET CONTROL OF THAT KID!”
Eventually, things calm down. The three make it through the scanner, and you can finally hear Carson’s mother, Amy, explain, “My son is autistic and ‘that thing’ is his speech adaptive device.”
He’s wearing a special iPod with with a Bluetooth speaker that is critical to him. It helps him communicate with those around him.
Oh, by the way, it was “Autism Awareness Night” and all 70 families from Carson’s school were invited.
Talk about a Guest Services worst case scenario.
Carson Belles, now 13, was diagnosed with autism spectrum disorder at age two. His autism includes intense apraxia, basically meaning his brain-to-mouth connection malfunctions. Speaking, swallowing, blowing bubbles and smiling are all very difficult, if not impossible, for Carson.
Like Carson, most autistic kids don’t “look disabled.” Without an obvious physical handicap, Amy Belles can tell you that an autistic child’s outburst at a store, park or movie draws stares and scoldings from onlookers.
You know, just like what happened at Quicken Loans Arena (now Rocket Mortgage FieldHouse) for that Cleveland Monsters game in Feb 2016.
Thanks to Amy tweeting in frustration at Dan Gilbert (the owner of “the Q,” Monsters, and Cleveland Cavaliers) with that tweet landing in the lap of Gilbert’s SVP of Facility Operations, Antony Bonavita, Carson is no longer part of an “invisible” audience to teams and venues.
Just by chance, that same week in New Orleans, Dr. Julian Maha was at the same tech conference as Cleveland Cavaliers front office staff.
And soon, all the different parties would be coming together for all of us to “see” Carson and many, many more kids like him.
After Amy, Jeff and Carson made it to their seats that fateful game night, Amy beelined to Guest Services. She was worried more families from Carson’s school would arrive and have an issue at the gates.
The staff were very nice, took a detailed report, apologized and offered free tickets to another game.
In Amy’s mind, that was the last thing she was going to do. She had no desire to come back and endure another ordeal like that again!
The kind staff thanked her and let her know, “If someone doesn’t call you within the week, here’s the number to call us.”
She was flabbergasted – a week’s wait seemed illogical. What if there was another problem that night?
Then when she didn’t hear the next day, or into the next, she took to Twitter — including Dan Gilbert’s handle to blow off some steam:
Treated very poorly by The Q security last night for Autism Awareness night… I think some sensitivity training would go long way @cavsdan
— Amy Belles (@amy_belles) February 28, 2016
“My phone rang 17 minutes later from a Cleveland number, and I thought ‘No way! This Twitter thing is pretty cool,'” she recalls with a chuckle.
On the other end of the line? Bonavita.
Antony was devastated. Determined to make things right, he explains, “Personally I have a son with autism. I’m the guy in charge, so it is ultimately my responsibility and my fault. It was a humbling experience.”
Patrick Scanlan, Sr. Director of Guest Experience for the arena, joined the group and the three set out to be the first NBA team — and first sports arena — to figure out how to become sensory inclusive.
In separate conversations with Amy Belles, Bonavita and Scanlan – all three mentioned the same thing to TMR. They were all committed to “taking a bad situation, learning from it and making something good out of it.”
Julian Maha was in New Orleans sharing how he had developed an inexpensive Bluetooth device to alert parents if their autistic child started to wander off. Autistic kids are often fascinated with exploring water, and drowning is a all-too-real threat.
Maha and the Cavs execs at the event struck up a conversation. They discussed a wildly successful sensory inclusion initiative at the Birmingham (Ala.) Zoo that Kulture City, the non-profit the Mahas started after Abram was diagnosed, had worked with the zoo to develop.
The Zoo’s annual month-long October Trick-or-Treat celebration was a great family event. Except for families with sensory issues – the flashing lights, screeching witches and startling ghosts were too much.
What if they could have just one evening dialed back? Maybe they’d get a few dozen families attend and enjoy a night out for the whole family. Instead, well over 1,000 families impacted by sensory issues showed up.
Zoo staff were delighted and worked with Kulture City to create permanent, sensory-friendly elements going forward.
Dr. Maha, an emergency medicine physician, and his wife, Dr. Michele Kang, a pediatric intensive care physician, have two children. Their oldest, Abram, now 11 years-old, is like Carson — autistic and non-verbal.
Between two and four years-old, Abram first stopped speaking, then his eye contact dropped and he began showing further signs of autism. The two physician parents searched the country for the best doctors to help them understand what was going on with their son.
Finally, they met with the top U.S. sensory expert and within the first five minutes their fears were confirmed. Abram was on the spectrum and would never be able to function as a normally developed boy.
“It feels like you’ve lost a child and everything comes crashing down,” describes Maha. “There was a period of mourning and then we realized something liberating. The world had written Abram off. No one held him to any standards. It became very liberating emotionally.”
Drs. Maha and Kang poured themselves into finding inclusive solutions and building Kulture City. They attacked the issue with a start-up mentality. View Maha’s amazing TEDx talk here about why inclusion matters:
The stats are staggering and only increasing.
Per the Center for Disease Control and Prevention’s Apr 2018 report (based off a 2014 study), 1 in 59 children have autism spectrum disorder (ASD), with boys affected more frequently at 1 in every 37.
The American Academy of Pediatrics put the number of children affected at 1 in 40 overall in their Dec 2018 study published in Pediatrics.
What that tells sports venues and teams is that this is a population that must be addressed.
How did the team at the Q go about changing the fan experience? Methodically.
They had calls and meetings with Kulture City and the Cleveland Clinic.
They worked with fan services supervisors and staff to be more cognizant of people experiencing sensory overload, scouted space in the Q they could dedicate to being a quiet space, started assembling elements for sensory kits (noise-reducing headphones, fidget toys, lap pads) and mapped out a budget to pay for it.
Rather than rolling out everything quickly and widely, they made sure they were ready to handle any increased demand, without any slip in customer service and fan experience.
“We couldn’t afford to mess this up,” explained Scanlan.
The incident with the Belles family happened at the end of Feb 2016. By summer, the facility had a plan in place, a training program, and a space identified (an auxiliary storage room near elevators). When staff returned to work the new Cavs or Monsters season, they were trained thoroughly.
When the 2016-17 seasons started, the Q waited to announce or promote their sensory inclusive status. They talked to local groups and parents and made sure every element was ready. They waited to announce the sensory room until Spring 2017.
In the case of the Q, they were fully-committed to building out a sensory room and spent about $25,000 on the renovation and build out.
Teams with limited (or no) budgets have successfully used an unsold suite, office or even available conference rooms. Some arenas simply set aside — and clearly mark — quiet spaces in concourses.
Fortunately, there are many ways to make a facility inclusive.
Today Kulture City has signed approximately 250 venues for Sensory Inclusive Certification. (See our list of all sensory-friendly sports venues here.)
Their certification process is simple – you sign a three-year agreement. The cost is $399 for year one, then $199 for years two and three. That includes your training materials, all online training components and five sensory kits. The only other cost is covering the airfare and hotel for the Kulture City trainer(s) who come to train key staff.
Once more than 50% of staff have completed the training, you are eligible to be certified. Then there is regular online training checks and updates to maintain certification status.
There are no excuses now.
What you hear over and over speaking with parents with children with ASD or other sensory issues, is that you become isolated or splintered. It’s exhausting to go out, and even if you do get out any kind of “episode” creates a combination of despair and humiliation.
Amy and Jeff Belles are big sports fans. They grew up going to Indians and Browns and Cavaliers games.
Then came Carson, and between Carson’s discomfort from being overloaded and theirs from being shamed by others around them, they stopped going.
“We have a picture from an Indians game when Carson was little,” says Amy. “We didn’t make it past the first inning. Same thing at the movie theater – we wouldn’t make it through the previews. Soon you become isolated. And split up. Jeff and I would take turns doing things with our older son, and the other would hang out with Carson. It’s hard”
“But that’s why what Kulture City does is so incredible,” she continues. “Sports are such a huge part of the community — our community — this means the world to us.”
Fortunately, because of venues and teams embracing inclusivity and organizations like Autism Inclusion Resources (AIR), Autism Speaks, Kulture City and many others educating all of us, there is a new sense of hope.
And it is inspiring to watch the sports world lead the way.