My son has autism.
For the past 22 years, since adopting and bringing him home from Romania, my primary occupation has been raising him to “grow into a man,” as he says. He has done that magnificently, with help and guidance, to be sure. But for the most part, he has made his strides by his own strength of will and his desire to be independent.
Today he lives in his own house with one roommate, who is also a delightful young man and who also is on the autism spectrum. They have 24-hour staff support funded under a federal and state Medicaid program.
His name is Nathan. He was born nearly 25 years ago in Brasov, Romania. His given (now middle) name is Florinel, a diminutive of the common name Florin. It roughly means “little flower.” (The Italian equivalent is “Fiorello,” as in “LaGuardia.”) I later learned that his family name is related to the Hungarian word for apple. So, it seems his original name means something like “little apple flower.”
Before we met him, we chose the name Nathan, the Hebrew word for “gift.” After 19 years of marriage with no children, we could think of no better name for this miracle child being given over to our care.
We picked up Nathan on Jan. 29, 1999, from an “orphanage” (really, institutional foster care) in Brasov, Romania. This is in Transylvania — Dracula country. We heard him before we saw him, crying his eyes out as his caregiver escorted him from the back part of the facility (which we were not allowed to see) to the hot little parlor where we were waiting.
He was wearing the clothes we had brought for him, along with several other layers they had added. I guess they judged we had not brought sufficiently warm things for him. Well, it was below freezing outside with several feet of snow on the ground.
For about a week, I carried little Nathan Florinel everywhere we went. At nearly 3½, he weighed slightly more than 20 pounds. He could walk but not well, having spent most of his time sitting in a crib rocking back and forth. His was an uncertain, straight-legged, robotic gait. When he came to a visual change in the floor surface, even just a change of color, he would stop and slowly push one foot forward to discern whether there was a change of level. He still has depth perception issues of this sort. Steps are not his favorite things, especially coming down them.
He didn’t speak and the only language he had heard was Romanian. We had learned only a very few words and phrases in that oddly Slavic- sounding Latinate language. The most important of these was “te ubesc,” which means “I love you.” We whispered that to him again and again.
His autism had not been diagnosed, though all the observable symptoms were present. We did not consider autism, since the behavioral symptoms are also present in many children raised in impoverished, institutional settings. We assumed he would “grow out” of these behaviors. Of course, he didn’t.
Rather, his has been a lifelong journey of growing into them, making them his own, using them for his own benefit. We have been exceedingly blessed to take that journey with him.
After eight days in Romania, with visas and passports secured, we began our journey home. When we boarded the plane in Romania, Nathan Florinel was terrified.
As we awaited takeoff, he screamed like a banshee, or whatever equivalent they have in Romania, and we just could not calm him. A kind flight attendant with KLM Royal Dutch Airlines brought over a little stuffed duck wearing a KLM uniform. Nathan grabbed it and immediately tried to bite its head off.
Seated in the row in front of us were a young man and woman, not a couple, it turns out. They assured us the crying baby was no problem. The man was Romanian and the woman was an American who spoke the language. At one point, the man said something to the woman. She turned to us and said, “He just said that you are this child’s salvation.”
The truth is, had we not brought Nathan home with us, he likely would not be alive today as the state protections under which he lived in Romania run out at a certain age. With no one to care for him, Nathan would have been put out on the street, as many young people are. He would have had little chance to survive. We really don’t like to think about that.
Nathan works 15 to 20 hours a week bagging groceries. He is extremely good at his job, which he loves dearly. He is surrounded by co-workers who encourage and protect him. Just before he started there, one employee told me, “Now don’t you worry. We’ll look out for him so nobody bothers him. And if they do, they’ll wish they hadn’t.”
Sadly, not all workers with disabilities have such a loving, nurturing community of co-workers.
On May 30, a letter to the editor published in the Charleston Gazette-Mail contained the following lines:
“I am disappointed ... that the Gazette-Mail employs Phil Kabler. He specifically used his Twitter platform to boast about tormenting an [individual]. Kabler mocked the individual’s obsessive tendencies, as if autism is a joke ... No one should have to work in an abusive environment and no one should be bullied.”
I felt as if I had been punched hard in the gut, as if this thing had happened to my own son.
Below are the texts of Mr. Kabler’s Tweets (edited for protection of the individual):
“I noticed he had aligned the cans of pop on the snack table into two neat rows. I messed them up, and sure enough, after his next visit, they were back into two neat rows.
“So this time, I simply moved the 11th can from the back row to the front, and after his latest visit, the can is now back in its original spot on the back row. I’m going to hell for this, right?”
Profound sadness and intense anger overwhelmed me.
I have communicated my pain and anger to the editors of the Gazette-Mail and to Mr. Kabler. I found it necessary that he be made aware of how far-reaching his mean-spirited, adolescent behavior has been. Every boy and girl, woman and man on the autism spectrum who ventures away from the places where life is at least familiar, to go to school or work or just “out” is a victim of Mr. Kabler’s little “joke,” along with all those who love and care for them.
This essay was written at the invitation of the regional executive editor for HD Media, and the publisher of the Gazette-Mail. Given the nature of the Kabler incident, I have tried to focus on the vital importance of order in the life of a person on the autism spectrum. I hope you will come away from reading this with a better understanding that autistic behavior, like the “obsessive” arranging of objects, is far more than just idiosyncratic, compulsive behavior. The behavior is necessary to the health and well-being of the individual. It is therapeutic and self-regulating. Behaviors such as this enable a person on the spectrum to get through the day without falling apart.
Order and dependable routine mean everything to people on the spectrum.
When Nathan sits down to eat, at home or at a restaurant, he almost always gets the same things to drink: some kind of juice (maybe milk or a smoothie) and “plain water,” that is, with no ice. The juice also has no ice, unless it’s a smoothie made of ice — though he also typically orders the smoothie with no ice. He really doesn’t like ice in his drinks.
When his drinks arrive, he carefully places them in a very specific arrangement, aesthetically pleasing to him, indecipherable to us. And there they sit, until he has finished his meal at which time he will drink the juice first, often in one continuous “chug” and then the water in the same way.
Why are order and dependable routine so important?
I’m no clinician. I don’t study autism. Instead, I live with it and in some ways have learned to love it. I don’t apply the adjective “autistic” to people because autistic is not what my son is. Nevertheless, autism is an important and integral part of who he is.
I know that every time he goes somewhere, even places he enjoys like the grocery store where he works, every sight, every sound, every touch, every smell comes at him full force, like buckshot from a shotgun. He can’t escape. He has nowhere to run or hide from this painful barrage of sensory input.
Bagging groceries for five hours, he must stand and do his work and try to hold it together through grumpy customers, crying children and the occasional loud balloon pop (a particularly traumatic and painful thing for Nathan). His world is always in danger of spinning out of control. All he can do is try to endure the constant sensory assault.
With all this going on, we have been told by more than one of his co-workers how much joy Nathan brings to their lives when he is at work with them.
Nathan only recently returned to work after a 2½-month medical leave of absence for stress and anxiety. There was some fear of the coronavirus. But the main stressor was that literally overnight everything at his beloved—and familiar—store had turned upside down. “His” Kroger had ceased to be the safe, dependable work environment he had known and come to trust and love. Order was gone, chaos reigned, routine was impossible.
I commend and thank management for granting Nathan’s leave and assuring him he would always have his job there.
On the rare occasions at work that he is not actively bagging groceries, he can be seen standing upright, legs shoulder-width apart, rocking side-to-side. He might be quietly vocalizing rhythmically as well. This behavior might strike you as odd. But he’s not doing for your benefit. He’s doing it for himself. It is called “self-stimulation” and, for most people on the spectrum, regular “stimming” is necessary to maintain an equilibrium of emotion and endure the pain of the environment. It’s just an exaggerated form of drumming your fingers on the table or tapping your foot while sitting still.
People on the spectrum crave anything to ameliorate the chaos, to impose a little bit of order on the disorderly world in which they must try to function.
Things such as lining up 12 soda cans in two pristine rows on a table in a space that people on the spectrum have been charged with keeping clean and neat, a task they are well-suited to do because doing it gives them a sense of achievement, is a source of pride and self-worth. It is enjoyable, maybe even therapeutic, because it creates an orderly sanctuary — a safe place away from the sensory assault that is always lurking.
Early on, we learned that most times it is easier and more effective to change the environment than it is to expect Nathan to change his behavior. The former can be done, usually without too much difficulty. It typically involves slight re-arrangement of space or adapting our own behavior. The latter is often not possible. Please understand that, while behavior modification is possible and often desirable (we try to practice what is called “positive behavior support”), much autistic behavior is as autonomic and necessary as breathing.
They’re not making funny noises to annoy you. They’re doing it to keep themselves in balance.
Scientist and autism advocate Temple Grandin writes that when she worked in an office full of other people, she never knew what anyone thought about her because she could not interpret facial expressions or body language. A co-worker could be fuming mad at her and she would have no clue.
I am not an expert on autism. I’m only an expert on my son. His mom and I, steadily heading towards our dotage, struggle daily to encourage and enable his independence while continuing to be closely involved with his life.
I cherish every moment with Nathan. Sometimes, I go into Kroger just to see him at work, even if I don’t speak to him. He’s dedicated to his work and does not spend time fooling around. He treats me like any other customer when he bags my groceries, even asking if I want my gallon of milk in a bag.
He is my life, my heart. He is, as Joni Mitchell sang, “the air my flowers breathe.”
He is also among the most vulnerable members of our or any community for all the reasons I’ve mentioned and many more, as many as there are individuals on the spectrum.
If you want to learn more about autism, get to know someone on the autism spectrum.
As the late, great John Prine implored, “Don’t pass them by as if you didn’t care. Say, ‘Hello in there. Hello.’”
And, don’t think they don’t notice the stares.
Don’t think they don’t hear the whispers.
Don’t think they don’t recognize derision.
Don’t think they don’t think, or feel.
They do both deeply and in mysterious ways that transcend our understanding.