It’s a warm, sunny afternoon at a small North Carolina zoo. Nine-year-old Luca is led to an enclosure by his parents to see a specific animal, the result of a careful search and a long drive.
When Luca goes to the fence, recognition kicks in and his face brightens. “Capybaras! Capybaras! ” he cries with the joy of a child on Christmas morning. His euphoria is palpable.
Luca, recently diagnosed with Asperger’s Syndrome, 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 Although the term “Asperger’s” is somewhat withdrawn, level 1 of the autism spectrum is described as higher functioning with a tendency towards obsessive research. Luca’s parents and doctor choose to actively use the term because it will be recognized and better understood by those unfamiliar with the scale of the autism spectrum.
Even Elon Musk, who suffers from autism, uses the term to describe himself.
Luca’s mother, Vivienne, emailed me the video footage of her son’s exciting encounter in the zoo after our extensive conversation about her family’s journey with autism. She noticed certain behaviors in Luca when he switched to home study during the coronavirus pandemic, such as rigidity when playing and difficulty transitioning between activities.
Individually, these may be signs of a strong-willed boy, but cumulatively, they stood out for her.
She also mentioned his photographic memory and math skills. In retrospect, she remembered the stab when he was kicked out of two preschools for behavior problems and how he ran past his grandmother’s outstretched arms when she greeted him eagerly.
It took me a year to get an appointment for an evaluation. His diagnosis came in June and the family left the doctor’s office with a booklet and little guidance. As scientific researchers themselves, Lucas’s parents delved deep into the subject, learned everything they could, and found local support in the form of an autism book club that was attended by parents and trainees to work with autistic children.
Vivienne regards the diagnosis as a gift. “It explained a lot. … It’s a relief now because we can use tools and strategies that actually work with him, ”she said. “Understanding that there are some things he doesn’t see the way neurotypical people do, helped a lot.”
And because of this, she stressed that anyone who suspects they have autism will be screened, regardless of their age, even a senior.
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 mentioned that neurotypical social norms and labeling rules are extremely uncomfortable for autistic / neurodiverse people (“twisted” was a friend’s word). An old friend, Kristin, got in touch and “trained” me very openly that her autistic daughter cannot look anyone in the eye, but she is by no means rude. In an effort to please my friend and educate readers, I pledged to write about autism, a subject that I admittedly have no experience with.
This week I’m adding tools to help you identify and adapt to unfamiliar situations related to autism. If the essence of etiquette is the sensitive awareness of others, then this topic is certainly spot on.
It is not uncommon for an autistic person to try to adapt by masking their neurodiverse self. But that’s a strenuous effort, and for some of those with level 2 and 3 autism, just not possible.
Some scenarios told to me by families or autism experts who might encounter the neurotypical public made me pause to reevaluate my first impressions.
- A dentist reports a family to Youth and Family Services for poor dental hygiene. Some autistic people have difficulty brushing their teeth.
- A neighborhood kid is playing in the front yard and the neighbor calls the police.
- One educator calls a child “abnormal” because they have repetitive movements or cannot sit still.
- A mother takes her teenage son to the mall’s ladies room to help him because there is no family bathroom.
- A child uses a mobile device or fidget toy in a restaurant or church to get engaged so the family can leave the house.
- Not knowing when it’s not a good time to laugh.
- A smart colleague who only talks about his own work, never looks you in the eye and does not ask how your day is.
Some of these often misunderstood scenarios contribute to masking, burnout, and isolation for families and individuals. Maybe it’s easier to stay home. The divorce rate is high in an autistic household.
“How can we achieve a more accessible and inclusive form of etiquette?” Asks my friend Kristin.
When traveling abroad, one studies the local customs to fully understand the culture. For Vivienne, her son’s diagnosis was just that: learning a new culture.
Here are some tips to consider in your own autism journey:
- Keep your tone age appropriate. Don’t talk meekly or like a child.
- When you want to connect, talk about a hobby or clothing. “Nice to meet you. I really like your shirt”; “This game looks funny.”
- Small talk is puzzling and exhausting for an autistic / neurodiverse person. Participating in a conversation can be challenging as it involves learning cues while maintaining focus and eye contact, an effort that may not be visible on the surface. As a neurotypical person, read the clues, check in, and adjust accordingly.
- Don’t ask too many questions.
- The interruption is often involuntary.
- Take a break every now and then to ask if the autistic / neurodiverse person is following. Give them time to process what has been said.
- Eye contact can be physically painful and uncomfortable. There is the extreme onslaught of the senses as well as the emotional intimacy that comes with looking someone in the eyes.
- If you’re not sure if someone will be comfortable with physical contact, just ask for permission before touching them.
- Sitting for long periods is difficult. Exercise breaks (or brain breaks) provide an opportunity to exercise and refresh.
- Parents can guide the interaction
- by prefixing an introduction, for example, “My son has highly functional autism” and helpful tips.
- As autism terminology evolves over time, ask a parent or individual what terms and names they prefer. For example, someone may find the term “Asperger’s” obsolete and prefer “highly functional autism”.
- Whenever possible, it is helpful and empowering for an autistic / neurodiverse person to represent their needs, such as communicating, “I have autism and cannot make eye contact, but I can hear what you are saying” or taking breaks and yourself to move.
- Does your workplace have neurodiverse, inclusive recruitment practices? Employers should view conditions like autism and dyslexia not as disabilities but as talents and benefits.
- When you see a situation unfold before you, by showing compassion and support, hold back your judgment.
Despite my best efforts to be thorough and relying on autistic / neurodiverse sources, I’ve likely made slip up here.
Even Vivienne admitted that she felt she needed lexicon etiquette within the community so as not to offend anyone. But she had the hope that this generation of children would see differences as something to work with instead of being judged, healed, or corrected. Everyone can find their place at the table.
Having been introduced to this topic by my childhood friend Kristin, I found it fitting that she should rule it out: “I feel that the ultimate expression of etiquette gives everyone the grace of honest self-expression and permission to move the world with Authenticity, ”she said.
Bizia Greene is an etiquette expert and owns the Etiquette School of Santa Fe. Contact them at [email protected] or 505-988-2070.
Comments are closed.