It’s a warm, sunny afternoon at a small North Carolina zoo. Nine-year-old Luca is driven by his parents to an enclosure to see a very special animal, the result of diligent research and a long drive.
As Luca approaches the fence, recognition sets in and his face lights up. “Capybaras! Capybaras! he cries 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 from South America, which looks like a large guinea pig. Although the term “Asperger’s” is withdrawn somewhat, the level 1 condition on the autism spectrum is described as higher functioning with a propensity to obsessively seek. 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 is autistic, uses the term to describe himself.
Luca’s mother Vivienne emailed me video footage of her son’s exciting meeting at the zoo after our in-depth conversation about his family’s journey with autism. She noticed certain behaviors in Luca when he switched to home learning during the coronavirus pandemic, such as stiffness during games and difficulty transitioning between activities.
Individually, it may be a sign of a strong-willed young boy, but cumulatively they stood out for her.
She also mentioned her photographic memory and math skills. Looking back, she remembered the sting when he was kicked out of two preschools for behavioral issues and the way he walked past his grandmother’s outstretched arms as she greeted him eagerly.
It took a year to get an appointment for an assessment. Her diagnosis came in June and the family left the doctor’s office with a brochure and little advice. As scientific researchers themselves, Luca’s parents got involved, learning all they could and finding local support in the form of an autism book club in which parents and trained people participate. to work with autistic children.
Vivienne sees the diagnosis as a gift. “It explained a lot. … It’s a relief now because we can use tools and strategies that will actually work with it, ”she said. “Understanding that there are things he doesn’t see like neurotypical people has helped him a lot. “
And because of that, she pointed out that anyone who suspects they might have autism is evaluated, regardless of their age, even a senior.
The big picture is how to get a neurotypical world to include Luca and all of our autistic / neurodiverse friends, families and colleagues for successful interactions.
In my last column, I discussed how extremely uncomfortable social norms and neurotypical etiquette rules (“crooked” was the word used by a friend) for people with autism / neurodiverse. An old acquaintance, Kristin, had reached out to me and ‘taught’ me quite frankly that there was no way her autistic daughter could look anyone in the eye, but she was not. rude case. In an effort to bring justice to my friend and educate readers, I committed to writing about autism, a topic I admittedly have no experience with.
This week, I’m including tools to recognize and adapt to unfamiliar situations related to autism. If the essence of the label is the sensitive awareness of others, then this topic surely fits the bill.
It is not uncommon for someone with autism to try to fit in by masking their neurodiverse personality. But it’s a grueling endeavor to pursue, and for some people with level 2 and level 3 autism, it just isn’t possible.
Certain scenarios shared with me by families or autism professionals that the neurotypical public might encounter gave me pause to re-evaluate my first impressions.
- A dentist reports a family to youth and family services because of poor dental hygiene. Some people with autism have difficulty brushing their teeth.
- A neighborhood child acts on the front lawn, and the neighbor calls the police.
- A preschool teacher calls a child “not normal” because he has repetitive movements or cannot sit still in his seat.
- A mother takes her teenage son to the mall’s women’s restroom to help him out as there is no family bathroom.
- A child uses a mobile device or 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 smart coworker who only talks about their own work, never looks you in the eye, or asks you how your day is going.
Some of these often misunderstood scenarios contribute to the masking, exhaustion and isolation of families and individuals. It might be easier to stay at home. The divorce rate is high in an autistic household.
“How can we move towards a more accessible and inclusive form of labeling? My friend Kristin asks.
When traveling abroad, we study local customs to fully understand the culture. For Vivienne, she felt that her son’s diagnosis was just that: learning a new culture.
Here are some tips to consider on your own autism journey:
- Keep your age the right tone. Don’t speak contemptuously or like a child.
- If you’re looking to make a connection, try talking about a hobby or clothing. “Nice to meet you. I really like your shirt”; “This game looks fun.”
- Chattering is confusing and exhausting for someone with autism / neurodiverse. Participating in a conversation can be difficult as it requires trying to learn clues while maintaining focus and eye contact, a tension that may not be evident on the surface. As a neurotypical person, read the clues, check, and adjust accordingly.
- Don’t ask too many questions.
- The interruption is often unintentional.
- Take a break every now and then to ask if the person with autism / neurodiverse is following. Give them time to process what you say.
- Eye contact can be physically painful and embarrassing. There is the extreme sensory attack as well as the emotional intimacy involved in looking someone in the eye.
- If you’re not sure if someone will be comfortable with physical contact, just ask permission before touching them.
- Sitting for long periods of time is difficult. Movement breaks (or brain breaks) provide an opportunity to move around and cool off.
- Parents can guide the interaction
- prefacing an introduction with, for example, “My son has high-level autism” and helpful tips.
- As autism terminology changes over time, ask a parent or person what terms and labels they prefer to use. For example, someone may find the term “Asperger’s” obsolete and prefer “high level autism”.
- Whenever possible, it is helpful and empowering for someone with autism / neurodiverse to advocate for their needs, for example by communicating: “I am autistic and I am unable to make eye contact, but I hear what you are saying Or by taking breaks and moving around.
- Does your workplace have inclusive and neurodiverse hiring practices? Employers should view conditions like autism and dyslexia not as disabilities, but as talents and assets.
- Reserve your judgment if you see a situation unfolding before you with compassion and support.
Despite my best efforts to be thorough and rely on autistic / neurodiverse sources, I have probably blundered here.
Even Vivienne confessed that she needed a lexical tag within the community so as not to offend anyone. But she was hopeful that this generation of children would see differences as something to work with rather than being judged, healed, 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 was appropriate that she closed it: the world with authenticity, ”she said.
Bizia Greene is an etiquette expert and owner of the Santa Fe Etiquette School. Contact her at [email protected] or at 505-988-2070.