When my nine year old son Otto, who is on the autism spectrum, told me he wanted to go to New York City (NYC) for his birthday I was ecstatic. First, the fact that he shared this wish upon my inquiry with such conviction felt like a moment of blissful connection. Because although Otto can communicate orally, there are some conversational barriers: he's not a fan of small talk; abstract questions are challenging; and he has a ten second processing delay. Typically, open-ended and abstract questions such as “How was your day?” or “What do you want to do for your birthday?” are met with crickets, an indifferent “I don't know” or a barely audible retort - much, much later. As his mom I often feel like an archaeologist, continually excavating to uncover the buried treasure of his thoughts, opinions and preferences. And because I struggle with anxious thoughts and attention deficit, my stream of consciousness brain has constant questions, and craves security through information. But on this particular day, there was no need to dig…the social communication stars aligned. Otto was crystal clear…to NYC we go!
Would visiting the largest, busiest, noisiest city in the world with my deep feeling, highly habitual, sensory aversive kiddo be too ambitious a trip? Maybe. But as a mom to not one, but two children with autism, and a consultant for InfiniTeach - an autism education and consulting organization - this wasn't my first rodeo. From my lived and professional experience I know two things to be true when it comes to visiting a new place as a neurodivergent individual: the quality of preparation combined with the accessibility level of spaces can make or break your trip. At InfiniTeach, we help businesses remove barriers to access by identifying challenges and providing solutions for a more neurodiverse world. So, I approached planning our trip with the same mission-focused gusto - removing barriers such as long lines, tight turnarounds and maximum-level stimuli and arming ourselves with best-practice resources, preempted accommodations and a really good sense of humor. I have taken my knowledge and observations and have distilled them down into a list of pro tips for neurodiverse families who want to navigate a novel urban city such as the Big Apple.
Create a child-led schedule and don't overload
As you create your schedule of events, remember - less is more. For Otto, transitions are overwhelming and he needs down-time in between events to regulate and restore. Together, we selected three attractions, motivated by Otto's very specific vision to visit the trifecta of national treasures: the Statue of Liberty, the Empire State Building and Central Park. These specific requests alleviated the buy-in battles that erupt when I present a seemingly fun idea to my autonomous kid. I built in a few hours of downtime in between destinations for free reign exploration, eating breaks and ipad time to balance sensory input and demands.
Rely on reservations with wiggle room
We used CityPASS® to purchase reservations at timed attractions in advance. I knew this was risky, as it committed us to being present at specific time intervals; which was completely off-brand for my family as we usually need a 15-30 minute grace period to allow for slower processing, push-back and meltdowns. However, because our agenda was built around Otto's choices and preferred activities, I anticipated the transitions to be less anxiety-provoking. One bonus of CityPass is that I could modify our reservations if things went off the rails.
Create and curate social stories
While many kids embrace the novelty of a new experience, my son gets anxious and goes into flight or fight mode when he encounters situations filled with uncertainty. To arm Otto with meaningful information, I got to work on social stories, which are written narratives that have accompanying pictures, made to illustrate certain situations, problems and challenges, and how children can deal with them. First, I scoured the websites of the attractions we booked, such as the Statue of Liberty and Empire State Building for pre-existing social stories. I was disappointed to learn that neither of the biggest tourist destinations in the United States offered their own. But I am happy to report that most NYC museums are fully accessible and offer a wide array of options.
Preemptively request accommodations
Once I knew our travel plan, I focused on making sure our experiences were accessible to reduce anxiety. While it is impossible to remove every stress variable possible, some small accommodations make a huge difference for someone with a disability. And when you come across autism-friendly businesses, it sends a message of hope and solidarity to neurodiverse families.
First, you can call your airline and request to have your child's profile updated with information about their disability. This information then becomes visible to the check-in and gate attendants as well as flight crew. On our flight back via United Airlines, one of the attendants asked Otto if he'd like to say hello to the Pilot and sit in his cabin!
Next, if you have a child with a disability who cannot manage long lines, you can request support services through TSA Cares. I filled out an online form and spoke with a representative who walked me through the steps so I knew what to expect upon arrival. After we checked-in and dropped our luggage (highly recommend checking bags to allow for hands-free airport maneuvering), we alerted the TSA guard at the front of the security line that we requested assistance. We were then personally escorted past the long queue (which is busy even at 6am) and through security.
With thousands of hotels to choose from, I used filters to narrow the search. We opted for the LUMA Hotel, a family-friendly, four-star hotel in the heart of Times Square (and next to a coffee shop). The neuro-affirming staff treated my son with kindness, patience and respect, helping him find some quiet space (sitting on the Bellman's luggage cart) when unexpectedly, our room wasn't ready. One of the bellhops shared his own child's autism diagnosis, and we enjoyed a moment of connection. Another ran down 41st avenue to flag us a cab when it wasn't readily available. We felt embraced, welcomed and accommodated as a neurodiverse family at the LUMA Hotel.
The most convenient (and fun) way to get around is through public transportation. We didn't struggle with transitions as Otto looked forward to riding the subway any chance he could get. And, not to generalize, but trains are embraced by many neurodivergent individuals - from the visual stimulation and rhythmic motion to the predictability of the train schedule and its accompanying maps - and so we downloaded the MYmta App and relied on our own vulnerability and the kindness of local New Yorkers to help us navigate when things got hairy. One businessman during the Monday morning rush directed us to the exit and exclaimed, “tell everyone in Chicago, New Yorkers are good people!”
Pack a sensory toolkit
Make sure to pack a sensory-friendly travel toolkit that contains first-aid materials, preferred toys, fidgets and snacks. And just when you think you have too much, keep packing - there's nothing worse than being in the middle of a meltdown in a packed place with no redirection tools. I wore a backpack that held Otto's iPad (and iPad charger), notebooks, markers, chewing gum, noise-canceling headphones, water bottles and plenty of fruit roll-ups. These came in handy during pit-stops, communal spaces, busy elevators and restaurants. Repeat after me: technology and sugar are your friends during travel.
As intimidating and stressful as it may seem, it is possible to successfully navigate New York City as a neurodiverse family. The variables will range greatly from family to family, and my list is just one personal experience in the universe of possibilities. But if you can commit to setting aside several hours of pre-planning research alongside identifying accessible spaces, you can set your family up for success. For us, Otto's selection of New York City was serendipitous because it is a place where authenticity and neurodivergence is welcomed, understood and respected. The humans we encountered such as subway riders, taxi drivers, servers and tourism guides were helpful and unflinching during meltdowns over failed wi-fi or loud stimming.
So, get planning. Go meditate, take vitamins, hydrate, rest well and breathe throughout it all because you will be exhausted, tested and humbled - but I promise you, it is completely worth it.