What it's like to live with sensory sensitivities
When Roger and Carrie take their family out for a fun evening, they always know the location of the closest exit.
But it's not for the reason you might think.
Their 13-year-old daughter Lily has autism and sensory processing disorder. This means her brain processes senses differently and some senses become overwhelming.
Deseret News has agreed not to use the family's last name to protect the teen's privacy.
Growing up, Lily was sensitive to taste, texture, sound and smell, which would affect the food she'd eat, the clothes she'd wear and the places she could go. According to her mom, Lily would 'know the smells I did not even know existed.'
'Helping Lily to feel safe has become a family project,' Carrie said.
One in 36 children in the U.S. has autism spectrum disorder, which 'equates to about 25,000 children in Utah,' according to Intermountain Health.
Sensory sensitivities are common in children with autism.
A 2022 paper by University of Utah's Huntsman Mental Health Institute found that 74% of children with autism are affected by sensory sensitivity. That equates to 18,500 children in Utah based on the previous estimate.
Sensory sensitivities can vary and are not associated with an individual's IQ, Dr. Deborah Bilder, one of the researchers for the paper, emphasized to the Deseret News.
'It's just a different way of experiencing aspects of the senses. It's not abnormal. It's not bad. It's not impaired. It's just different,' Bilder said.
Some individuals are sensory avoiders, meaning it's harder for them to ignore sensory intake, according to Autism Speaks. This is called hypersensitivity.
Someone who experiences hypersensitivity with bright lights, including the sun, could choose to wear sunglasses or a hat to help avoid a sensory overload.
There is also hyposensitivity, which means individuals seek out sensory intake. That could look like someone spinning and needing to move.
Per Autism Speaks, experiencing both hypersensitivity and hyposensitivity is common.
'It's really about finding that right balance for that person to be able to experience what they want to or need to experience,' Bilder said.
On a family trip to Yellowstone National Park a few years ago, Lily's family was creative in how they helped her handle her sensitivity to smell.
To help cover up the smells of Yellowstone, including the sulfuric fumes from the thermal pools, Lily's parents put Vicks VapoRub under her nose.
Though VapoRub has its own strong scent, it's a familiar smell for Lily and would be more comforting than the strange smells of the park.
The mask she was wearing due to the COVID-19 pandemic also helped, Lily said.
In that moment, she said she was thinking, 'OK, I don't want to smell it. I don't want to fall off. Don't run. Don't push me. I just need to be on the path.'
VapoRub is just one of the many ways Lily's parents, Carrie and Roger, have had to think outside the box to make the world a more sensory-friendly place for their daughter.
Carrie keeps items such as Lily's favorite scented chapsticks, headphones and fidget tools in her purse. Taylor Swift's music has also been a helpful tool for Lily on hard days.
'Taylor Swift helps me get through it,' Lily said.
Carrie added, 'Taylor's really doing more than she knows for our family.'
When they go out, Carrie and Roger take separate vehicles and leave at different times. Carrie joked that that might make some people question the state of their marriage.
'Lots of times, we end up missing half of whatever we're going to because one of us will leave with her if it becomes too overwhelming,' Roger said.
Carrie added, 'There are also family activities that we divide up for because we just know this will not be successful, but we have other kids that need experiences and need time together.'
When Lily was younger, free early intervention and occupational therapy were helpful resources for the family as Lily was introduced to new exposures in positive and safe environments.
But it's been difficult to find activities and events that are sensory inclusive for Lily and the rest of the family, Carrie said.
'I think that the sensory-friendly spaces exist. I don't think that a lot of people know about them, where they are,' she said. 'The challenge for me is that I don't know what exists, and I feel like we just kind of go it alone, you know? And sometimes we take a chance and we hope for the best, and other times, we just kind of say, 'I think we pass on that experience. I don't think it's gonna work out.''
Sporting events and plays heavily incorporate bright lights and loud sounds to create fun and engaging atmospheres. But those features could make it impossible for someone with sensory sensitivities to enjoy their experience.
Multiple organizations are trying to create sensory-friendly events and spaces to make Utah more sensory inclusive for individuals like Lily and her family.
Utah Valley University's Melisa Nellesen Center for Autism is one of those organizations.
With partners in the community, the center organizes autism and sensory-friendly events throughout the year such as Quiet Santa and Moving Mountains soccer camp.
They also collaborate with the Timpanogos Symphony and Orchestra every year for a special performance that leaves the lights on in the auditorium.
UVU's Noorda Center also offers sensory-friendly performances for most of its children's plays.
For communities to create more sensory-friendly events like these, Laurie Bowen, the director of the Melisa Nellesen Center, believes individuals with autism should be included in the planning process from the beginning.
These events can be a great opportunity for families with children who have autism, but Carrie said, 'That exists only if you know about it, and if you're available on this certain day.'
Bowen recognizes that and acknowledges that as a university, the center 'can't do all of it.'
'Our goal really is to make a community of belonging, and with that is arming other people with information so that they can also become part of that group that is addressing and assisting,' she said.
One of the organizations that has stepped up to make more spaces and events sensory inclusive — including some that may have seemed impossible for someone who is hypersensitive to attend — is the nonprofit KultureCity.
Husband and wife duo Dr. Julian Maha and Dr. Michele Kong founded KultureCity in 2014.
A few years prior, Maha and Kong had taken their neurodivergent sons to a local museum in Birmingham, Alabama, when one of their sons experienced a sensory overload.
They were asked to leave after their son started engaging in stimming behaviors to regulate his senses. Stimming behaviors are characterized by repetitive noises, movements and habits.
That experience stopped Maha and Kong from daring to try new public experiences with their sons for years, KultureCity's Meg Raby Kinghoffer told the Deseret News.
When one of their sons pointed out they never went anywhere, Maha and Kong organized a sensory-friendly night with the Birmingham Zoo. Their sensory inclusive vision grew from there and led to the creation of KultureCity.
Utah has over 20 certified KultureCity venues with sensory rooms and/or sensory bags. A map of and information for each of the venues can be found on the KultureCity website and app.
These venues include the Delta Center, the Clark Planetarium, the Discovery Gateway Children's Museum, schools, stores, libraries and even police departments.
The Salt Lake City Police Department was the first police agency in the U.S. to be certified in KultureCity's sensory inclusive training, according to Kinghoffer.
SLCPD officers now carry sensory bags in their patrol cars to assist individuals who may be experiencing sensory overwhelm.
In those sensory bags, you'll find fidget tools, headphones to dull the loud sounds of their environment as well as a visual communications card and feelings thermometer for when an individual may be unable to verbalize their thoughts and feelings.
Those items can be found in every KultureCity sensory bag.
With KultureCity, Kinghoffer travels across the country for the nonprofit's activations and pop-ups, including the opening of the Salt Lake City International Airport's first of three sensory rooms in March and the NCAA women's basketball Final Four in Tampa, Florida, in April.
In Tampa, not only was it special to see children benefit from the sensory bags and room, but Kinghoffer said it was 'really a beautiful thing when you see adults stepping up to request for the accommodations that they need, and seeing them just really kind of, in a sense, being seen and known in a public experience like that.'
Businesses looking to become more sensory inclusive can reach out to KultureCity or the Melisa Nellesen Center for guidance.
Bowen said the center exists to support autism and teach others how to as well.
'The whole reason we're here is to assist families and individuals with autism to get their needs met,' she said.
Becoming sensory inclusive 'doesn't take much' and 'the impact is huge,' Kinghoffer said.
The decision to do so will open the world up to more people with sensory sensitivities, like Lily.
'If people are not in this world, there's somebody you don't even think about. Something like a Jazz game is super amazing, and it's a little smelly — depending on who you're sitting next to — and (has) bright things. It doesn't have to be. There are ways to kind of change environments to make them more accessible, if we think about it, if we're aware,' Carrie said.
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