Perhaps the most notable trait seen in autism is what I call the “loop.” Lacking the flexibility and florid connectedness of normal brain wiring, autism minds often get stuck on a narrow neurological track. This can lead to repetition of certain behaviors, or obsessions over certain topics, maybe trains, movies, or animals of Tasmania, sometimes for days, weeks, months, years, or decades at a time.
For my 18 year-old son with nonverbal autism, loops have included repeatedly listening to Elton John songs (tell me, grey seal, how often do I have to listen to you?), throwing iPods over the fence (ka-ching…), eating nothing but kale chips, shredding books, mushing toothpaste into carpet, plucking keys off my laptops, and countless other patterns involving varying degrees of allure and ruin.
His latest loop, though, is a doozy.
Forget all the myths about people with autism lacking emotion. My Jonny is a born love bug. Ever since he was little, we called it “Getting the Treatment”: Jonny would plop himself on us, smile broadly, utter a low giggle, and plant an extended smooch on our heads, shoulders, or backs. Then he was “The Lamprey,” affixing full mouth on our upper arms in an unusual and fairly hilarious display of affection.
Well, lately this playful brand of Jonny love has overflowed its usual family banks, engulfing complete strangers we may encounter on the street, on hiking trails, or at the grocery store. Jonny will dash ahead of me, happily skip along while tapping at his iPad (latest looping song is Bridge Over Troubled Water, by the way), and plant one on the shoulder of an unsuspecting stranger.
When he darts away I of course try to contain him, yelling, “Come back to Mommy!” “Stop, Jonny!” “Wait for Mama!” Or “No kissing, Jonny! No touch!!” Unfortunately, owing to a bum knee I can’t keep pace with his sprints. And since he’s built like a hunky quarterback, I am powerless to physically restrain him. So when a surreptitious kiss ultimately gets planted, I can only let the apologies flow. “Sooooo sorrrrrrrryyyyy, sir, he has autism.”
And I am genuinely sorry— if I knew nothing about this mental disability, I’m sure I would be rather startled by a sudden smooch from a young man who by all appearances could be the local Homecoming King.
The majority of the time people are very understanding. Responses have ranged from, “Oh he’s so cute,” to “Yeah, I figured something was up with him.” But sometimes people are clearly flustered and stunned. Again, I can’t blame them.
So, I ask, what is a mom like me, living with and caring for a man with immensely complicated behaviors and extremely impaired cognition, to do? Let’s walk through the options.
First, I could keep him at home, sort of in house arrest, away from the public. Well, that’s not viable. Jonny is energetic and loves going out in the community. And he’s entitled to it. He loves our walks, hikes, trips to the playground, and heading out for his favorite smoothie. The era of hiding our developmentally disabled in institutions or basements is long, long gone. Like most autism parents I have no intention to condemn him or his younger sister, who also has a severe form of autism, to a life of hiding.
Second, I could hire a fleet-of-foot muscle-bound guy to accompany us everywhere we go. Again, not a realistic option. The logistics would be impossible and the expense immense.
Third, I could train Jonny to not kiss or touch other people. Believe me, I wish this were easy. We and his teachers and therapists work on his behaviors continuously, but lessons can take years to sink in. Entire treatises and courses have been written about teaching socially acceptable conduct to people with severe forms of autism, but success often eludes even the most expert people in the field. There’s no magic bullet.
I was recently talking with a USC Law School professor friend about how impulsive behaviors like Jonny’s seem to be increasingly landing people with autism in the muck of law enforcement. We see more police encounters, jail holds, and prosecutions of people with autism for acts that involved minimal consciousness, choice, and control. My professor pal understood these cases as more akin to someone having a seizure than a master criminal plotting to rob a bank. A revered legal maxim sprang immediately to his mind. “People need to understand,” he said, “that sh*t happens.”
And he’s exactly right. Sometimes volcanoes erupt. Sometimes hurricanes swirl. Sometimes meteors fall from the sky. Sometimes people with seizures flail and hit. Sometimes people with Tourette's tic and yell. Sometimes people with autism engage in behaviors that scare, startle, or confuse others. The puzzling acts that sometimes arise from the short-circuited neuro-loop of autism require acceptance, understanding and patience.
A lot more patience. Our world is very different than it was 20 or 30 years ago. In 1990, Santa Clara County, where we live, saw 147 strictly-defined autism cases in the Developmental Services system. Today, the county has experienced a staggering increase, to about 3,800 such cases. Similarly, the state has seen an explosion from about 3,000 cases in the early 1980s to nearly 100,000 today. Though we may debate the sources of this increase (no, it’s not vaccines), we can all agree that the data show autism is now part of every neighborhood and school district, and has become part of the fabric of all of our daily lives. Behaviors that were once rare are now abundant. Now, I would fully agree that when inappropriate behaviors pose a danger to others (let’s say, a man obsessed with lighting matches, or kicking people), supports and treatments should be put in place to keep everyone safe. But those cases are the exception, and not the rule.
So welcome to the New Normal, which may involve the occasional encounter with a random kissing bandit. Know that the alternatives are few, and parents, caregivers and people with autism are almost always doing their best. An extra smooch never really hurt anyone, anyway.
Jill Escher is president of Autism Society San Francisco Bay Area, founder of the Escher Fund for Autism, a housing provider to adults with autism and developmental disabilities, and the mother of two children with nonverbal forms of autism.
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The opinions and assertions stated are those of the individual authors, may not reflect the opinions or beliefs of SFASA, and do not reflect the opinions of the Autism Society of America. SFASA is an independent affiliate of the Autism Society of America, the leading grassroots autism organization.