For neurodiverse people, pushing rules of etiquette is anything but nice
There was a buzz about mega-entrepreneur Elon Musk’s latest venture last week. Musk’s private aerospace enterprise, SpaceX, launched an all-civilian crew of four into orbit Wednesday.
Inspiration 4, as the mission was called, was the first time private citizens embarked on a spacecraft unaided by professional astronauts.
Musk’s name might be familiar to New Mexicans as a recent attendee of Richard Branson’s July space launch near Truth or Consequences and as the founder of Tesla, an electric vehicle manufacturer, whose sales and service center recently opened in Nambé.
The say-anything CEO is both loathed and revered for his bold and arrogant style. His appearance on Saturday Night Live last spring was a rare and revealing opportunity to understand him better.
In his opening monologue, Musk revealed he has Asperger’s syndrome, a developmental disorder affecting the ability to effectively socialize and communicate. People with the condition, which is on the autism spectrum, are described as generally higher functioning, with great intelligence and a propensity for obsessive research.
Socially — and this is what I think Musk often gets called out on — Asperger’s traits include honesty, an inability to understand emotional issues and abnormal responses to sensory stimuli.
Some of these characteristics inform what are perceived to be his shortcomings.
In his monologue, Musk mentioned his lack of intonation and inability to make eye contact. I have spent a decade and a half teaching my clients the importance of tone and looking people in the eye.
But it is important to stress that certain lessons are simply too generalized to be one-size-fits-all.
Through my research and personal experience, I have strived to share American-specific etiquette sensitive to the nuances of different cultures while covering diverse and inclusive topics such as gender pronouns, sexual orientation and disabilities. Within my own family, there’s cerebral palsy, Alzheimer’s, Down syndrome and seniors from their 80s to their 100s. Each person has a unique set of needs, and this exposure has instilled in me a sensitive awareness of others and likely informed my career path.
If the essence of etiquette is to adjust our behavior for the people and places we encounter, then finesse, flexibility and sensitivity best be in your tool kit.
Recently, one of my grade-school friends kindly “schooled” me on my lack of inclusion on a particular topic. “For many autistic and other neurodiverse folks, the etiquette rules that you encourage are exhausting and tortuous.”
I receive my fair share of criticism from the public. However, hearing this from someone I used to have sleepovers with felt deeply personal.
“You may not realize that your enumeration of the expectations of polite social behavior (for kids or adults) are specific to neurotypical interactions … which is why they do not work for my child, nor will they ever. Being autistic, her inability to conform to the complicated rules of social norms is why she is often labeled ‘rude,’ though it is the furthest from the truth,” my friend said.
Point well taken. While etiquette must change with the times, I clearly needed to get with the times.
This was a topic I had not written on before, and I knew I had a lot to learn. On top of reading numerous papers my friend, a molecular biologist, emailed me, I booked an interview with local autism center Prism within hours of receiving my “wake-up call.”
Opened at the beginning of this year, Prism is one of two autism centers in Santa Fe offering individualized treatment programs for children ages 2 to 10. Registered behavior technicians use applied behavior analysis. Communication and social skills training are addressed in collaborative sessions.
Upon my arrival and throughout my tour of the 6,300-square-foot former Art Smart building near Meow Wolf, several young students looked me in the eye, said hello and smiled. Understanding eye contact and small talk can be uncomfortable for those diagnosed with autism spectrum disorder, I was impressed with how they engaged with me.
Co-directors Topa and Shane Augustine said one of their goals is to increase social skills from a young age to help children make the transition into public school more smoothly. In incremental steps, behavior technicians work individually with students on greetings, introductions, asking questions and using eye contact. They’ll introduce the word “please” as a student’s language development progresses.
Early intervention is key, and Prism has high expectations for successful outcomes. Students are engaged in sensory activities for the length of a traditional school day.
It’s remarkable support if you can get in.
Although services have increased statewide in recent years, wait lists for treatment are significant, disproportionately affecting rural families. The good news is New Mexico passed landmark legislation in 2019 guaranteeing coverage of the diagnosis and treatment of autism for people of any age, without limitations. That means no copays or dollar caps.
For families experiencing similar journeys, support groups are key when it comes to developing community and sharing resources, especially for those waiting for evaluation and treatment. Outside of the accepting environments of autism centers, special education programs and support groups, the world can be a place of misunderstanding.
The irony is that when it comes to etiquette, neurodiverse and neurotypical people are both adjusting their behavior for their environment. But for someone on the spectrum, how far must they socially camouflage their authentic selves to meet the rules and expectations of a neurotypical world? Etiquette typically puts the onus on the autistic person.
Join me next time, when I discuss the social challenges often faced by people with autism spectrum disorder and tools we can use to recognize and adapt to unfamiliar situations.
Until then, when you look up at the heavens and envision the journey of the Inspiration 4 spaceflight, remember its brainchild proved autism spectrum disorder and the sky are not the limit.