I cannot recall a time as a child or a teenager when I was not acutely aware that my friends were afraid of my father.
I was also afraid of my father, but when I was faced with the fact that my friends also felt that way, it made me feel very sorry for him. “Your dad is mean,” neighborhood kids would say to me when I was as young as four.
He was imposing-looking, tall, with a black beard and moustache, and black hair slicked back from a very high, protruding forehead. He wore frameless glasses, big lenses shaped like car windows, and he had very little to say – unless it was to correct others. “How would you like it if I stepped on you?” I remember him saying, quietly but tonelessly, to one of my playmates who was happily stomping a swarm of ants with her new Easter shoes. She and her sister had come to show me their new Easter dresses and bonnets, before they went to church. We did not go to church. I was embarrassed that my father was threatening to stomp my friends to death.
My childhood was not without happiness, and some of that can be attributed to my father. He loved being Santa Claus, and made elaborate – considering our modest household – displays of toys on Christmas morning; like a set-up in a department store window. All unwrapped, because “Why would Santa Claus waste that much wrapping paper?” This, and the poorer quality of gifts my neighborhood friends received, is what eventually tipped me off to the reality of Santa.
It had been embarrassing in my childhood to be punished physically by my father, but in my late teens, I no longer felt sorry for him when my friends reacted in horror. I was eighteen and standing with the refrigerator door open, looking for snacks and laughing with my friend. My father walked into the kitchen, and without a word, grabbed me by my hair and beat my head into the freezer door repeatedly, then walked calmly out of the room.
In my twenties, my father and mother divorced. She had been having an affair for years, and he finally threw her out. Once, again, I began to feel sorry for my father. He no longer hit me. He told me that he had no idea what people meant when they talked about “being in love with someone”, but that he supposed the closest he had ever come to it was how he felt about my sister and me.
It was around this time that he was made aware of a condition called Asperger’s Syndrome – it was relatively new diagnostically, and one of my father’s brothers had sent him some articles about it, because he was sure that both himself and his brothers had it. The uncle who had sent the article seemed least affected, while my father was in the middle. My other uncle had never moved out of my grandparents’ home, and was an obsessive vintage comic book, horror film, and toy collector, which had made him a fun uncle, but one with whom I still cannot recall making a single moment of eye contact.
I had never seen or heard of my father going to a doctor in my entire life, and he sought no formal diagnosis for Asperger’s. My father was a registered nurse, and knew his diagnostic codes. He worked for Blue Cross, and his job was to get claims denied. Due to his black-and-white thinking, and to his even tone of speech – he did not seem to get upset even when doctors, social workers, or family members were screaming at him for getting services denied – he was known, he told me once, as “The Dayslasher”.
Whatever his job might have given him insight into as far as therapies or interventions for people with Asperger’s Syndrome, he did not seek them. He identified with the low tolerance for small talk and social interaction, and the need for strict routine. After my parents divorced, my father ate the same meal, from the same kiosk, in the same food court, for over five years; when he decided to “switch it up”, it was only after months of talking about it, and he stayed with that dinner for another five-plus years. He identified cheerfully with the “obsessive” interests of people with Asperger’s Syndrome; regardless of the time of evening or how many times he had seen the episode, if NYPD Blue was airing on any station, my father would stop everything he was doing and watch it. To him, these were the traits of Asperger’s Syndrome with which he identified, and there was nothing that he wanted to do about them.
Shortly before my father’s father died in hospice, he told my father and uncle that he had a Do Not Resuscitate order, which he wanted to rescind. My father and uncle told him, practically, that he couldn’t. Whatever would be resuscitated was not something either of them had the resources to take care of. And, after all, there was my third uncle, still rattling around in my grandparents’ old house, which the siblings were now preparing to sell.
My grandfather understood what he had been told, and died. His house was sold, and my aunt enrolled my uncle in life skills classes, where he learned to shop for himself and balance a checkbook. He found an apartment, and was looked in on frequently by one or more of his nearby siblings.
My father continued on living alone in the house I had grown up in.
My contact with my father became less comfortable, and decreased, throughout my thirties. My husband and I saw him once or twice a month, for a meal or to visit an art exhibit, but not much else.
During this time we had begun the process of adopting a baby. While my father seemed excited about this eventuality, he seemed to have no understanding of the wear and tear the waiting process put on us, and me in particular. Because he seemed so unsympathetic and dismissive of my need to talk about how I was feeling, we saw less and less of him. Even our e-mail and telephone contact decreased. There was very little for us to say to one another.
By the time we were matched with a newborn baby in 2008, we had virtually no contact with my father, but left messages on his machine and with other family members so that he knew the baby had arrived. He did not respond to any of them, nor did he send a note, a gift, or a card. He did not acknowledge her arrival at all, and after five months of our attempts to contact him, I sent him an e-mail telling him that our relationship was officially over and I did not wish to hear from him again, ever.
There wasn’t much to miss. Being around my dad had only gotten more and more difficult over time. He had hated his job, which he had begun to do via “telecommuting” — working from home, so he had even fewer people to interact with. Much of his conversation with my husband and me, when it was not railing about the intolerability of others, was minutely focused on his food choices, and how if he went to the Bob Evans’ restaurant closer to his house it cost eleven cents more for the same meal at the Bob Evans’ five miles further away, but when you figured in the gas…
My father was no longer part of my life and had never been a part of my daughter’s. We adopted a son when our daughter was seventeen months old. Our babies grew into toddlers, and our life as a family of four felt very complete.
When our children were two and three, we were in need of a new babysitter, and asked around at the coffee shop we frequented. A nineteen-year-old young man was recommended, and he became our regular sitter. We liked him a great deal, and the kids loved running into him in the coffee shop, and were just as likely there to run into one of his three brothers.
One day, while getting my coffee, I had a conversation with one of the younger brothers, whose name was Tucker. It wasn’t much of a back-and-forth conversation; I did a lot of nodding, and eventually, had to just smile vaguely and wave goodbye. Our sitter was hanging out at a table outside the café. “Does your brother Tucker have Asperger’s Syndrome?” I asked.
“My mom thought he did,” our sitter said. Their mother, I knew, had then been dead for about three years. Everything about Tucker – a round-faced, light-haired, seventeen-year-old – reminded me of my father. His phrasing and intonation. The way he would sit awkwardly, saying very little, up until the moment I put my bag on my shoulder to leave, at which point he would launch into a diatribe — where my father’s would have been about television, Tucker’s was about chemistry. I would watch him solve a Rubik’s Cube, then politely ask someone to mess the cube up for him, and watch him solve it again.
Certain that if he once got a taste for it, he would become an adept and enthusiastic knitter, I offered to teach him. He looked as horrified as any seventeen-year-old boy would. I began carrying needles, and grey yarn – I was certain that it should be grey – in my bag, just hoping to find him bored enough one day that he would actually allow me to show him how. I had to replace the yarn twice, because of how fuzzed and matted it had gotten being carried in my bag. (He eventually gave in; it took two years.)
As we had become friendlier and more familiar with the other siblings and father of the family, I continued to ask this question of each of them: “Did you ever think maybe Tucker has Asperger’s Syndrome?” and the answer was always vague but seemed to suggest Sure – but isn’t there enough else to worry about?
When one of his brothers or his sister would complain to me about Tucker’s “obliviousness” – and even lack of “feeling” over their mother’s death – I would ask, “Have you thought about this being a real possibility for him, having Asperger’s? And that may be something with which he needs help?”
One of Tuck’s brothers once rattled off the list of grievances about Tucker by text, and I questioned, “And who would you rather be today – you, or Tucker?”
“Do you even have to ask?” he answered.
My husband and I both turned our focus from asking anyone else who knew him to validate our concerns about Tucker, to talking to Tuck himself about it. Yes, he said, he’d remembered his mother saying that she thought he had Asperger’s. It had never come up in the context of diagnosis, or intervention, or services. From what he had seen and read, it had long sounded to him like he had Asperger’s Syndrome, and he recalled having told people so in the past. But nothing had ever been “done about it”.
I had, for as long as I had known Tuck, told him that he reminded me of my father. He knew that we were estranged, and that there was good reason to be, and I was careful in my emphasis that it was just the manner of my dad – a comfortable quality – that Tucker carried. And this was true; if you asked Tucker if he wanted to do something with you, you could be sure his answer was honest. There was never any second-guessing or social “politeness”. I knew what I was getting with Tuck, and knew what it was okay, or not okay, for me to give. The first time he had housesat for our family while we went on a weekend vacation, I had brought him back a star-shaped paper lantern; he returned it to me, saying that it seemed only to have “sentimental value” and that he didn’t have the room for it. Even this felt safe and homey to me – this disregard for my gift, and inability to see how it might hurt my feelings, reminded me of my unsentimental father.
My husband and I offered to pay for the diagnostic process to find out if he had Asperger’s, if it is what Tuck wanted to pursue. I wanted to know. It would “explain” so much about Tucker. It had about my father, and he’d never even stepped in a doctor’s office.
But, unlike I had ever done with my dad, I now wondered what the next step was – if Tucker had Asperger’s, what happened next? What was he going to get next? And from who? Would there be a pamphlet, a book, a support group?
We had not even begun to answer the question. Tucker was home from his first year at college and spending a lot of time at our house. One morning we got the kids to preschool, I meditated and checked my e-mail, and found from a family member that my dad had been diagnosed with dementia. He was still driving his car, and doing some things independently, but the prognosis was obvious.
I called my husband and told him, and continued using my phone to grab every shred of a lifeline I could. I did not want to be alone. Within minutes I had lined up three meet-ups with friends for that day, but the first did not begin for a few hours. I knew I could get through that much time, but… I realized, Tucker, who had open-door privileges at our house, could walk in at any moment. I was shaky and crying, and thought that even if I didn’t see him until later, I’d be shaky and crying then, too.
I knew it would confuse him to see me upset, so I texted him. I said I had just gotten some big and bad news, and when he came over later in the day, could he sit down with me for a little while so I could fill him in?
He asked if he could just come over right away.
And so Tucker was the first responder, in person, to the news of my father’s dementia diagnosis. I did not even tell him; I handed him my phone so he could read the e-mail I had received. I cried on his shoulder, and I thought, What a creep I am – putting all this on a nineteen-year-old.
But he was Tucker, and so when I put it on, it didn’t really stick. “Clinical”, “robotic” – these were words that had been used to describe Tuck, by people who knew and liked him. Tucker was the friend who was there for me when I found out about my dad, and he was empathetic, but not emotional.
I had coffee dates with friends to get to, and spent the day telling and retelling, and when I got home that evening, Tuck was hanging out here as expected. It was Tucker, in the long run, who was easiest to talk to about the ambivalence of losing a very difficult parent, and it still is.
Meanwhile, no one had forgotten our family agreement to put Asperger’s “on the table” at home. We were novices; all we had decided to do was to let Tucker know when he was doing things that made communication difficult, or made us feel left out or underappreciated. Beginning to talk about these things – how important it was to us to have him come in and greet us before going back to his computer, or to stop at some point during his six-to-ten hour gaming sessions and chat – made a big difference.
But as much as we believed we were going to educate ourselves and Tucker about Asperger’s Syndrome and whether or not he “fit” its mold, it was Tucker who began to tell us things we never knew. We had until that point viewed it solely as a social and communication issue – the “price” he paid for his high intellect. We had few clues about the sensory issues Tucker faced on a daily – hourly – basis. (He had once complained about watching “Breaking Bad” because it was “too orange”.) He told us how sounds, light, and the pace of the world in general affected him. I certainly understood more about why his puzzles and games were ways to cope with social and family pressures, not just mindless retreats. I taught him to knit, and he took to it very quickly, and with great interest.
I saw now how frustrating it was for him to be asked a question, and then a follow-up question and another follow-up question – something I did regularly – before he’d been able to answer the first question at all. (Now I know about the “eight-second rule”, and anyone who communicates with an autistic person should, too.) When his skin-picking and scratching at his arms and legs became something we felt was not too delicate to mention (by this time, had transferred schools and was living with us full-time), we found sensory substitutes – small “fidget” toys with moving parts – that helped him leave his fingers and legs alone long enough to heal.
I began searching for parents of children, adult children, with Asperger’s, and was given “tips” that sounded bizarre and severe – and yet, they would unlock hours of calm and openness where Tuck might otherwise be tied in knots, whether from academic pressure, the new challenge of living with two five year-olds, or anything. “Surgical brushes,” a mother had told me, giving me the link for where to buy them. I put them in Tucker’s Christmas stocking. He had rubbed them on his arms, and shrugged.
Two weeks later, after too much computer game time and the harsh realization that the kids were home for another snow day, he seemed to just stall out; his eyes got distant, his face blank. “Let’s try the surgical brushes,” I said, and winced as I watched him rub them, slowly and with a lot of pressure, against his face. When he opened his eyes minutes, later, I did not have to hear a word from him to know what they had accomplished.
“Where did those come from and what else do they sell, because I want it,” he said.
It was a gift, I’d dare call it a blessing, to be able to communicate with Tucker about what Asperger’s felt like for him, and what we could do as a family to make things easier – to understand, and to be understood. It was also a hard slap in the face to recognize that all of these sensory battles that Tucker had waged – rooms that made him want to disappear, conversations that happened too fast to participate in, intolerable textures in food and clothing and scents that lingered on the skin – were all things that my father had experienced. My father had identified with certain aspects of Asperger’s, but he had never mentioned any of the sensory ones. I believe now that he must have been experiencing them. And, knowing my father, they had made him feel weak and confused, but he never would have sought help.
Clearly, like any autistic person, my father had meltdowns. Like Tucker. Tucker’s meltdowns, as with many autistic people, were characterized by anger turned inward. There were times, he had told me, when he looked at a room and saw every surface upon which he might bang his head as “lit up” in red, as though beckoning to him. It was heartbreaking to think of Tucker feeling this way, but also terrifying to realize that I knew exactly what my own father looked like when things were “lit up” for him, and what would happen to me when they were.
Through living with Tucker, I was been able to, in retrospect, better understand my father. The answers for so many questions became apparent. I do not think he was ever able to understand, manage, or forgive himself for his own coping behaviors, but watching Tucker cope and survive, and thrive – and feeling the full range of emotions towards Tucker, from admiration and love to irritation and fury and forgiveness — allowed me to experience empathy for my father where I might otherwise not have been able to.
Slightly more than a year after I had received notification about his dementia diagnosis, I received word that my father had colorectal cancer. While initially given treatment, he was combative, and so a court hearing took place declaring him incompetent. He was appointed a guardian. It was decided that the cancer would go untreated but for palliative care, so that my father’s now seemingly endless life might end sooner.
As of this writing, my father’s cancer seems to have taken on his personality; quiet, unmistakably present, and sucking all the fun out of everything, but with no intention of leaving. The last I heard any news of him was an itemized expense report sent to my by hand courier, detailing his very modest yearly expenses. It arrived Christmas Eve morning.
And on Christmas morning, Tucker was here – and is here – home. I spend more time reading articles about autism than I do anything else on social media. Tucker, pursuing an undergraduate degree in neurochemistry, has just been offered the final co-op position of his five-year degree program, at the University of Pennsylvania’s Mindfulness, Stress and Health Lab, where he will assist in investigating the benefits of mindfulness for people who need those benefits. Like people with Post Traumatic Stress Disorder – a diagnosis I have carried for eight years, and have been earning for forty-six.
I hope this is the year that my father dies.
A few weeks ago, taking our kids to a new comic book store, we drove past one of Tucker’s childhood homes. As we idled outside, he pointed to windows and doors, describing what was inside. “Is this the house where your mother died?” I asked. He seemed to have to think about it for a moment. “Yeah,” he said.
At home later that evening, I said that it had been hard for me, seeing that house. “Why?” he asked, genuinely surprised. “Because it’s the house your mother died in!” I said. And he thought again. (I counted to eight.) “Yeah,” he said, “but a lot of other stuff happened there, too.”