This article was co-published with Curbed.com.
It’s a beautiful Sunday in July. We’ve already taken our son Finn to CVS to buy him his favorite Tic Tacs, and now we’re at Trader Joe’s. On the usual Sunday line at either store, he’ll rock from one leg to the other, bounce in place, or stim, flapping his wrists up and down. He has autism spectrum disorder, and patiently waiting isn’t a skill he’s mastered, even though he’s almost 12 years old. He’s rocking now, further agitated by the level of activity and noise. His behavior draws curious stares, but I’m used to these, and am frankly past the point of caring what others think. Nevertheless, I’m on guard, my senses at attention. I’ve had enough outings with Finn to know what’s possible. While I’m unloading the grocery cart he might suddenly bolt to the back of the store or out the front door, forcing me to abandon my spot in line in order to chase him. He might vigorously open and close his bent arms at chest level, how he communicates “all done,” a desire which if not immediately met may prompt sudden aggression, as it did last Sunday, when he hit me in the face, knocking off my glasses and cutting the bridge of my nose.
Today we’re okay. Our cashier sees his impatience, the way he keeps touching the cart ahead of ours, and when it’s our turn she lets him help scan the items and load them into the cart, activities that ground and calm him. Nevertheless, I know where we’re going next. It’s the only place where all of us—my husband, our neurotypical daughter, our dog, and I—can truly relax as a family: our local park, Fresh Pond.
When Finn was still very small, I spent more time taking him to public places—cafes, restaurants, open-air concerts, stores. He didn’t walk until he was 2, and when he was in a stroller, I could always wheel him out if the environment prompted a tantrum or a fit. “Bad” behavior also seemed more publicly acceptable coming from a toddler or small child. (Kids will be kids, right?)
But as Finn got bigger and louder, and faster and stronger—and he’s all of these now—our choices for safe public outings narrowed. One time in Target, I turned my back and he was gone. He’d run so far, so fast that it took three floor reps on walkie-talkies to locate him. Another time, we were at Petsi Pies, a favorite local bakery, waiting for a pie I’d ordered in advance. On this day, the cafe was loud and crowded. One moment Finn was with me at the counter and the next he’d overturned a glass of water at someone’s table. I rushed over, offering explanations and apologies, before I took him out of the cafe as fast as I could.
The park is an environment where a range of sensory input is available but is not overwhelming; it’s something children with sensory disorders can manage on their own. My son’s unusual movement, his noise, his yelping, all can be as loud or as wild or as strange as he’d like. My son is rarely the spectacle he would be in other spaces, even playgrounds. The openness of this mixed-use space simply surrounds us.
When we think about making public spaces accessible to disabled people, we usually think about making those spaces accessible to people with physical disabilities. But the fact is that for many families like mine—with members who are on the spectrum or have other sensory or mental disorders—parks and playgrounds are vitally important, an affordable mixed-use space that can be valuable for every member of the family.
Title III of the Americans with Disabilities Act of 1990 requires that all public spaces, including public parks and playgrounds, be accessible to all people with disabilities. But in Massachusetts, where I live, the Architectural Access Boards (AAB) regulations contain only a limited number of sections on playgrounds. These require “an accessible route to all play equipment” and nothing more. For families with children on the spectrum, safety is a prime concern that isn’t addressed in the ADA language. Those children need enclosed spaces where they can be seen by caregivers. And given how closely people on the spectrum may interact with the materials and plants in parks and playgrounds, those spaces should be free of toxic plants, thorny plants, or rash-causing plants.
“Usually in a park, there are things for every level of capability,” explains Susan Gilroy, director of Autism Support Center in Danvers, Massachusetts. “Whether it’s playing in the dirt or swimming or going on a slide. Whatever the activities are. It’s endless what kids can do.” She says that while special-needs families are often fearful of participating in community activities because they’re concerned about disrupting the community or attracting unwanted attention, that time is really what’s best for parents and children alike.
And for struggling families—families who can’t afford residential schools, endless nannies, bigger apartments, or backyards—public parks and playgrounds are an oasis of relief, the only affordable and safe space where they can take their disabled child without having to be constantly on guard.
According to the U.S. Department of Agriculture, the average cost of raising a child to adulthood is roughly $240,000. Autism Speaks estimates that the lifetime cost for an individual with autism and/or intellectual disability is $1.4 million to $2.4 million. Special equipment, occupational therapy, at-home therapies, specialized caregivers, and one-on-one aids all add to the cost. Some expenses are covered by insurance. Many are not. Available social services also vary widely state by state. On top of that, often a parent will have to forgo career opportunities in order to dedicate themselves to care or advocacy for their child.
Tina Winslett has a 22-year-old daughter with autism who still lives with her in their Texas home. Unlike Massachusetts, where I live, Texas doesn’t offer much in the way of public services for children and adults with special needs. “For her level of disability, there’s just so little,” Winslett says. “For the foreseeable future, she will be home with me.” Her daughter Brooke is on a waiting list for a two-day-a-week program, but needs 24/7 attention. As a result, Winslett’s job opportunities are limited to activities she can do with her daughter inside their home: catering and sewing.
Having a park, Winslett says, is a “godsend,” especially when Brooke starts going “stir crazy” in the house. “She’ll start going to the front door, bringing me my purse and my keys. There have been days that she stood at the front door for two hours. If it’s raining, I have to redirect her.” Like many people on the autism spectrum, Brooke is soothed by routine and the familiar, and she’s “really comfortable” at the park, where she can go off on her own. For Brooke, who’s too big for the equipment at the local playground, the public park is a great alternative, and a way to safely exercise.
“The good thing with the neighborhood parks,” explains Winslett, “is that people get us and we don’t have to be stared at, or have to explain.” Parks are not only safe spaces for children, but because they are often bordered by landscaping or fencing, they can also be safe spaces for parents. “Normally, you never can let your guard down,” says Winslett. “You never know when she might spot something across the street that catches her attention. It’s really such a nice thing to be able to take a breath, to grab a cup of water.”
Chaka Gordon found local playgrounds and parks absolutely necessary for her youngest child, who was diagnosed with ADHD at the age of 5 and anxiety and sensory processing disorder (SPD) at 7. Living in Portland, Maine, and then Asheville, North Carolina, she took her daughter to the park every single day. “She was a crazy cat in my house. She was always stomping. Climbing everywhere and climbing everything.”
Because Gordon was car-free while living in Portland, she relied on the parks within walking distance of her house, strapping her daughter to her body to keep her safe as they walked there. But she had to make sure that the park was fenced. “Otherwise, she’d just run off.”
Gordon’s daughter wasn’t diagnosed until age 5, so she wasn’t eligible for the early-intervention services provided by the community that so many families depend on. Her daughter’s severe anxiety often kept her home. Like Winslett, Gordon, who is divorced, has had to look for jobs where she could either bring her daughter or work from home. She’s worked as a house cleaner, an after-school teacher, and a freelance writer and editor.
The playground was a great place for Gordon, not only because it allowed her daughter to work off her considerable energy, but also because she could be her “loud self” without Gordon having to worry about neighbors. “Trying to control her to meet social norms and expectations, I started being embarrassed. I had to learn how to see her differently. It was good for her to get her needs met, and for me to be someplace where it didn’t stress me out.”
“When the children become older, their peers start to notice more,” explains Gilroy. “A 3-year-old doesn’t notice, but an 8- or 9-year-old will notice any subtle difference. It does fall on the families or the adults around to facilitate, to be interpreters for their children, both interpreting the outside world for their child or interpreting their child for the outside world.” Parks can offer a respite.
Winslett and Gordon both benefit from local parks, but not everyone can access well-maintained public green space, especially in cities. The Trust for Public Land maintains a database evaluating park access and quality in the 100 largest U.S. cities. Adrian Benepe, the Trust for Public Land’s director of national programs, says that while “the majority of public parks in America are funded with public funds,” many communities don’t invest in local parks, even if they have the funds to do so. “Some cities don’t pay for parks because they have no money. Other cities don’t spend money on parks because they are tax averse. They don’t adequately fund the public sector.”
The fact that parks and playgrounds work well for people with autism and other sensory issues is often an accident, not the result of city planning committee efforts. But in the United Kingdom, there’s a growing interest in designing spaces with autistic people in mind. According to Katie Guirdon, a designer working with the Helen Hamlyn Centre for Design who co-authored a research paper called “Green Spaces: Outdoor Environments for Adults with Autism,” in the United Kingdom, autism is more widely considered “another way of being,” not a “disease that can be cured.” It’s not unusual in England to find mainstream supermarkets with certain hours that are neurodiversity friendly, along with sensory rooms in sports stadiums and police officers trained in recognizing and dealing with people on the autism spectrum.
The aim of Guirdon’s paper, part of a series developed with the support of the Kingwood Trust, was to research and design “housing for adults with autism spectrum disorder (ASD) through better understanding of their needs, aspirations and the physical environment.”
Matthew S. Goodwin, one of the experts Guirdon consulted on her paper, and associate professor at the Bouve College of Health Science and the Khoury College of Computer Science at Northeastern University, lauds the U.K.’s emphasis on inclusion and thinks a change of cultural attitudes would go a long way in the United States. “We’ve not done as good a job educating society as we’ve done educating people with autism,” he says. “When we keep autistic children and adults hidden away, society never encounters them. But if we see them in the community, we learn they’re atypical but not dangerous. Society can only become more accommodating through exposure.”
But few public spaces are truly welcoming and accessible to autistic people. “It’s really hard to write guidelines for people with sensory issues,” says Denise Arnold, a Chicago-based designer, founder of the nonprofit Architecture for Autism, and mother of a 17-year-old on the autism spectrum. “It’s really easy to prove a threshold greater than an inch to a half-inch [which impacts wheelchair access], but there’s nothing in the ADA that says you can’t have glare issues higher than X lumen. There’s no study about the impact of high volume.”
Even playgrounds are designed for kids up to age 15, or up to age 5. “My guy is attracted to the little-kid stuff. But he’s just too big to be in there. It doesn’t mean he doesn’t need that swinging, that vestibular input,” says Arnold. “We need to think about open-space planning for life.”
If requirements are not built into the ADAG (Americans with Disability Act Accessibility Guidelines), budgets for public spaces vary widely from community to community. “If it costs more than a basic playground,” says Arnold, who’s worked with the mayor’s office in Chicago, “Then there’s no park district that can afford it.”
Even though the United States isn’t where it could be with regards to making public spaces truly inclusive to all disabled people, progress is being made. Pittsburgh International Airport recently opened a suite of sensory rooms to help travelers with sensory issues. It’s the fifth international airport in the U.S. to have such a space for travelers. And this summer, Showcase Cinemas launched a Sensory Sensitive Movie Program, joining Regal Cinemas and AMC Theaters in offering autism-friendly screenings at select theaters across the country.
Past the parking lot and the bike paths, deep into the bowl of the park, where dogs play fetch and wrestle each other into submission, my son Finn can finally freely explore. He might run in circles, delighting in the sound of the dogs barking, or wander into a cluster of high grass. Fencing prevents him from leaving my sight, yet allows him enough space to run off his energy.
I follow him up the path from the parking lot to the hill overlooking the pond that gives this park its name. As we walk, Finn pulls leaves from the nearest bushes and runs them along the fence, delighting in the sound and rhythmic sensation. In the fall and early spring, Finn’s favorite thing to do is to grab big armfuls of dead leaves and lift them up for the wind to blow back into his face. I never tire of this activity, because the laughter it prompts exceeds anything we could produce elsewhere.
At the top of the hill we see Ranger Jean checking dog registration with some nearby owners. Jean has a reputation for being tough, but she softens when she sees Finn approaching her ranger cart. He’s rocking with excitement. She calls out his name and invites him to sit beside her. After he’s settled and gives her a thumbs up, she rides him around the bowl. From the distance I can see his wide smile. He doesn’t even know how lucky he is.
There’s something to being truly seen as we are—a special-needs family—in the outside world, and yet accepted. It’s because of moments like these that I know our family belongs in Fresh Pond. We are known here. This is our community park.