It’s a warm and sunny afternoon at a small zoo in North Carolina. Nine-year-old Luca is led by his parents to an enclosure to see a very specific animal, the result of a diligent search and a long drive.
As Luca walks up to the fence, recognition sets in and his face lights up. “Capybaras! Capybaras!” he yells with the joy of a child on Christmas morning. His euphoria is palpable.
Recently diagnosed with Asperger’s syndrome, Luca is a young expert on the giant rodent native to South America, which resembles a large guinea pig. Although the term “Asperger’s” is somewhat retired, the Level 1 condition on the autism spectrum is described as higher functioning with a propensity for obsessive research. Luca’s parents and doctor choose to actively use the term because it is recognizable and more widely understood by those unfamiliar with the autism spectrum scale.
Even Elon Musk, who has autism, uses the term to describe himself.
Luca’s mom, Vivienne, emailed me the video footage of her son’s exciting encounter at the zoo after our in-depth conversation about her family’s journey with autism. She noticed certain behaviors in Luca when he moved to at-home learning during the coronavirus pandemic, such as rigidity when playing games and difficulty transitioning between activities.
Individually, these may be signs of a strong-willed young boy, but cumulatively they stood out to her.
She also mentioned his photographic memory and aptitude for math. Looking back, she remembered the sting when he was kicked out of two preschools for behavioral issues and how he would run past his grandmother’s extended arms as she eagerly greeted him.
It took a year to get an appointment for an evaluation. His diagnosis came in June, and the family left the doctor’s office with a pamphlet and little guidance. As scientific researchers themselves, Luca’s parents dove in deep, learning all they could and finding local support in the form of an autism book club attended by parents and those training to work with autistic children.
Vivienne views the diagnosis as a gift. “It has explained a lot. … It’s a relief now because we can use tools and strategies that will actually work with him,” she said. “Understanding that there are some things he doesn’t see the way neurotypical people do has helped a lot.”
And because of that, she stressed that anyone who suspects they might have autism get evaluated, no matter their age, even a senior citizen.
The big picture is how to get a neurotypical world to understand Luca and all of our autistic/neurodiverse friends, family and colleagues for successful interactions.
In my last column, I addressed how neurotypical social norms and rules of etiquette are extremely uncomfortable (“tortuous” was the word used by a friend) for autistic/neurodiverse people. An old acquaintance, Kristin, had reached out and very candidly “schooled” me that there was no way her autistic daughter could look someone in the eye, but she is by no means rude. In an effort to do right by my friend and educate readers, I committed to writing about autism, a topic with which I admittedly have no experience.
This week, I include tools to recognize and adapt to unfamiliar situations related to autism. If the essence of etiquette is the sensitive awareness of others, then this topic surely fits the bill.
It’s not uncommon for an autistic person to try to fit in by masking their neurodiverse selves. But that’s an exhausting effort to carry on, and for some of those with Level 2 and Level 3 autism, simply not possible.
Some scenarios shared with me by families or autism professionals that the neurotypical public might encounter gave me pause to reevaluate my first impressions.
- A dentist reports a family to youth and family services because of poor dental hygiene. Some autistic people have difficulty with brushing teeth.
- A child in the neighborhood acts out on the front lawn, and the neighbor calls police.
- A preschool teacher calls a child “not normal” because he has repetitive movements or can’t sit still in his seat.
- A mother brings her teenage son into the ladies room at the mall to assist him because there is no family bathroom.
- A child uses a mobile device or fidget toy in a restaurant or church to stay engaged so the family can get out of the house.
- Not knowing when it’s not a good time to laugh.
- A whip-smart colleague who only speaks about his own work, never looks you in the eye and doesn’t ask how your day is.
Some of these often misunderstood scenarios contribute to masking, burnout and isolation for families and individuals. It may just be easier to stay home. The divorce rate is high in an autistic household.
“How can we move towards a more accessible and inclusive form of etiquette?” my friend Kristin asks.
When traveling abroad, one studies the local customs to fully understand the culture. For Vivienne, she felt her son’s diagnosis was just that: learning a new culture.
Here are some tips to consider in your own journey related to autism:
- Keep your tone age appropriate. Don’t talk down or like a child.
- If you’re looking to make a connection, try talking about a hobby or clothing. “It’s nice to meet you. I really like your shirt”; “This game looks fun.”
- Small talk is puzzling and exhausting for an autistic/neurodiverse person. Participating in a conversation can be challenging because it requires trying to learn cues while maintaining focus and eye contact, a strain which may not be evident on the surface. As a neurotypical person, read the cues, check in and adjust accordingly.
- Don’t ask too many questions.
- Interrupting is often involuntary.
- Pause every once in a while to ask if the autistic/neurodiverse person is following. Offer time for them to process what you are saying.
- Eye contact can be physically painful and awkward. There is the extreme sensory onslaught as well as the emotional intimacy involved in looking someone in the eye.
- If you are unsure whether somebody will be comfortable with physical contact, just ask permission before you touch them.
- Sitting for prolonged periods of time is difficult. Movement breaks (or brain breaks) offer an opportunity to move around and refresh.
- Parents may guide the interaction
- by prefacing an introduction with, for example, “My son has high-functioning autism” and helpful tips.
- As autism terminology evolves with the times, ask a parent or individual what terms and labels they prefer to use. For example, someone may find the term “Asperger’s” outdated and prefer “high-functioning autism.”
- When possible, it’s helpful and empowering for an autistic/neurodiverse person to advocate their needs, such as communicating, “I have autism and am unable to make eye contact, but I hear what you are saying” or taking breaks and moving around.
- Does your place of work have neurodiverse inclusive hiring practices? Employers should view conditions like autism and dyslexia not as disabilities, but as talents and assets.
- Reserve judgment if you see a situation unfolding before you by showing compassion and support.
Despite my best efforts to be thorough and rely on autistic/neurodiverse sources, I have likely made gaffes here.
Even Vivienne confessed to feeling she needed lexicon etiquette within the community so as not to offend anyone. But she felt hopeful that this generation of kids is viewing differences as something to work with rather than to be judged, cured or fixed. There is a place for everyone at the table.
Since this topic was introduced to me by my childhood friend, Kristin, I thought it fitting that she close it out: “I feel like the ultimate expression of etiquette is affording everyone the grace of their honest expression of self and the permission to move through the world with authenticity,” she said.