the boy who loved too much

The Boy Who Loved Too Much: A True Story of Pathological Friendliness is a good book, the kind I wish autism warrior parents would read. It’s about Eli and Gayle, a boy with Wililams syndrome and his mother. Here’s someone with Williams syndrome explaining what it is:

The book covers a lot of the same territory as a book like The Anti-Romantic Child: mortification in public and worries about the child’s future in private. The difference is that the book was written by a third party who tagged along, Jennifer Latson.

She manages to say what blunt autistic people have been saying about these parents: the main problem is that they haven’t worked out their issues with disability, and their frantic warrior-ness is making their kids worse. It’s all done very delicately, as a revelation that emerges gradually from early diagnosis to high school. She never comes out and says it.

Except for the phrase “Williams syndrome,” this could easily be the beginning of an autism warrior parent book:

On a brisk mid-March morning in 2000, Gayle hurried to her cubicle at work. She was in a rush to boot up her computer, to search the internet for a medical term she had just heard for the first time.

“Williams syndrome” meant nothing to her–nothing specific–and yet something about it filled her with dread. In the short drive from Eli’s day care center to the office building where she’d worked an administrative job since she was just out of high school, the dread had risen to a level of near panic. Her hands shook as she typed the words into a search engine. She clicked on the first website she saw, an online medical dictionary, and scanned the screen quickly. She read as much as she could before her eyes filled with tears and blurred the words. Then she ducked her head over her trash can and threw up.

I get it, but it’s never fun to read a story like this and the tragedy is that someone like you came into being…and Jesus wept. That’s harsh. That’s how much people really think it’s not ok to be you.

Still, she felt rattled. The pictures of older people with Williams pushed her over the edge. The adorable elfin faces looked uncannily out of place on adults. They don’t look as cute anymore, Gayle mused. Feeling guiltly, she instantly tried to unthink the thought.

It would’ve been better for her to sit with it, think about where it’s coming from, resolve to catch herself doing anything biased in the future. Instead, she spent years not getting over it. That’s longer than it took for me to come to terms with knowing I’m autistic myself.

For several years after Eli’s first appointment with Dr. Pober, Gayle couldn’t talk about Williams syndrome without breaking down in tears. Some mornings she would wake up to a fresh wave of sadness, as though she were learning the diagnosis for the first time. She would open her eyes and feel a vague heaviness, a generalized dread. It felt as heartbreaking after a year as after a day. She started taking antidepressants.

She couldn’t curb the nagging question: Why me? Why did I have a child with Williams? She started taking antianxiety medication. For a while she and Eli both took the same prescription. His, in lower doses, treated his hyperactivity and repetitive behaviors: rocking back and forth, kicking his legs, picking the skin around his fingers. Hers treated her endless worry for Eli’s safety, and for his future.

After learning that their son had a genetic disorder, both she and Alan worried that they had caused it somehow. Alan blamed the various drugs he had experimented with in the past. Gayle wracked her brain for any bad karma she’d accrued, or–more practically–any family history of intellectual disability. But none of it could have given Eli Williams syndrome, as they later understood. This was some consolation, but it still left the question unanswered: why them?

She had massive anxiety, which gave her son massive anxiety. The root causes weren’t addressed, but they tried to medicate the stims away.

Alan had shame about using drugs, which had nothing to do with the situation, and self-pitied over it. I understand. It took me a while to be ok with the fact that I take multiple drugs to get through the day. You have to unlearn things society wants you to believe about yourself. The shame interacts poorly with a poor understanding of biology and how drugs work. Whatever drugs he was taking, he thought it was plausible that they’d mutate cells in his balls. Epigenetic changes? Probably, but not a deletion from chromosome 7 in germ line cells.

Meanwhile, Gayle has just-world hypothesis issues. It doesn’t say what she was deeply ashamed about, but there was something warranting cosmic punishment. Like Buddha said, ignorance and delusion causing needless suffering.

Looking back at her initial dismay that Eli’s disability would cramp her rock-and-roll lifestyle–that her son might not grow up to be cool–Gayle cringed at her own shallowness. Who, God or otherwise, would ahve entrusted that tough-talking young woman with the care of this uniquely vulnerable little boy.

She sometimes thought of her sweet, cheerful son and almost couldn’t imagine how their paths had crossed. It seemed lie a cosmic clerical error.

I think it’s interesting how this implies that the values of the “rock-and-roll lifestyle” are hostile to disabled people. The previous few pages had described her music, fashion sense, and cultivated image as a badass, followed by the respectability needed to work with bureaucracies. I’m congenitally awkward and uncool. It must be nice fitting in, though, because most of the stresses are about threats to fitting in. My impression is that normal people are massively insecure from always being in status competition with each other. The cure for this anxiety is to accept being different.

Here’s an example of bad acceptance. There’s an anecdote about Gloria, who meets another mom whose child with Williams syndrome is the same age. She starts asking her a bunch of questions about the classroom inclusion, etc (the kids were 5).

“She’s retarded,” the woman said nonchalantly. “There’s nothing I can do to fix that.”

Gloria, horrified, never set up another play date. She didn’t see the woman again until a chance encounter in the grocery store a few years later. There the woman’s daughter was running wild in the dairy section, licking the lids of the yogurt containers. The woman did nothing to stop her or to discipline her, as if she simply expected this kind of behavior. Gloria’s own daughter watched with wide eyes, bewildered by the scene. She knew these antics weren’t acceptable; she’d be in trouble if she tried anything like it. In comparison to the other girl, she was a model of decorum.

Kids respond to expectations and take after their parents.

This next anecdote is interesting, too. Eli asks for a snack. Gayle makes it conditional on him putting on pants. He puts on pants:

“I did it, Mom! I did this for you!” Eli insisted, standing and pointing to his pants proudly. “Mom!”

“Eli, I’m in the middle of something,” Gayle said, finally looking up.

“She’s not being nice to me!” he said in an outraged voice, referring to his mother in the third person, as he tended to do when he had harsh words for her. He thrust his head forward, head-butting the air to emphasize his frustration.

“Oh, you need a pill, don’t you?” she asked rhetorically, looking at the clock. It was time for another Ritalin. He took three doses a day to help curb his distractibility. Gayle gave the pill to Eli with a glass of water. Then she poured him a bowl of Chex and set it at the edge of the dining table, where the milk wouldn’t slosh onto her records.

Eli wasn’t wrong to feel rejected. Most people would feel hurt by a loved one half-paying attention to them.

It’s a big problem that people medicate their kids into compliance without understanding what the drugs are like. The Ritalin is for “distractibility,” but, in that moment, he was jumping through the requested hoops and staying on task. He just took offense at being given hoops she apparently didn’t care much about, either.

If I take a stimulant, I stim less and I stay on task. That doesn’t mean I’m not tweaked out. I feel the sympathetic activation in my chest. My shoulders are tense. I can feel the underlying tiredness after a while. Some of the “problem behaviors” sound like being high on uppers to me. Any kind of behavior loop is going to get worse harder to switch off. Anxiously asking a million questions. Listening to the same song on repeat a million times. Irritable agitation. Hard time switching tasks. Over-excitement at things.

People worry about their disabled children never marrying. Gayle’s mother is the reason it’s hard to date, pretty much:

On one of these occasions, Mimi had accompanied Gayle to an event hosted by the Williams Syndrome Association and been shocked to see two people with Williams, both in their thirties, ordering drinks at the bar.

“Do they let them drink?” Mimi whispered to Gayle.

“Does who let them drink? Gayle answered. “They’re adults. They can drink if they want to.”

Mimi told Gayle about a woman with Williams she had met at the gathering, who was about Gayle’s age and wore a wedding ring.

“See, I wondered if they had sex,” Mimi explained. “But then I met that woman, and she said she was married. I said, ‘For how long?’ And she said, ‘Seven blissful years.’ So I guess they must, right?”

“Why would you wonder that?” Gayle said. “Like, even if they were in a relationship, you thought they wouldn’t have sex? Why not?”

“I guess I didn’t think they knew how,” Mimi said, turning her palms up noncommittally.

“Oh, I think they can figure it out,” Gayle said.

“I wonder if they ever get pregnant?” Mimi asked.

“Sure they can. Of course they can. They really shouldn’t, but it’s certainly possible.”

Mimi shrugged.

Disabled people are so Other that we might as well be a different species.

This passage is about her reaction after confronting someone for saying stuff about retards, but it could also be about the feeling of autistic people confronting autism warrior parents.

What?? My ‘sensitivity’? Seriously–GRRR. But sometimes I end up feeling worse when I confront someone, mostly because I am not satisfied with their response. Anyone been in this situation?

Yes. LOL.

Neurodiversity in olden times:

Apart from inspiring folktales [elves], people with Williams syndrome and other intellectual disabilities are believed to have played a prominent role in the courts of medieval and Renaissance Europe, as court jesters or “fools.” Their musicality and good humor, their way with words, and their eagerness to please would have made them popular as entertainers. Although these roles were exploitative, the historian Suzannah Lipscomb points out that they were also a place of privilege that gave people with intellectual disabilities a much more visible role than they occupy in contemporary society. Throughout history, many have seen “natural fools” as exceptionally holy, closer to God in their simplicity and essential goodness. And while they might have been mocked, they were also well cared for in the royal court. Historians believe Henry VIII’s beloved court jester Will Somers was intellectually disabled because records show that Henry paid a caretaker to look after him. Somers, a consummate punner and a gifted storyteller whose witticisms were recorded in popular books of the time, was known for a verbal dexterity that is one of the hallmarks of Williams syndrome, although of course it wouldn’t have been identified as such in the sixteenth century.

I guess I relate to this next passage because everyone is different than me, and I’m wary of them:

The problem with the suspicion shown to the elves of folktales is that it, too, has a real-world corollary. Gayle has seen people approach Eli with similar wariness. They don’t understand why he is the way he is, and this triggers the innate caution the rest of us feel when we encounter someone different. We are hesitant, skeptical. His openness closes a door in us.

The reason nothing gets fixed is that it’s ok for Jennifer Latson to write this passage. The normals just shrug amongst themselves. “Yeah, the Others are scary.” Any given individual’s xenophobia is treated like a quirk or foible, instead of the root cause of a WHOLE lot of the world’s injustices. That cowardly entitlement to a feeling of safety brought by keeping the Others at bay, violently.

In human societies, peer groups typically form around shared interests, abilities, and appearances. It can be hard to join a group unless you look, talk, and act like the others in the group. If you’re different from everyone else, you may find yourself excluded everywhere.

Can confirm.

Eli didn’t seem to be facing this existential crisis, or at least not yet. But others his age, and some even younger, were already struggling with it. One eight-year-old girl with Williams came home and broke down crying after her classmates shunned her at school. “I know I’m different,” she sobbed to her mother. “Why am I different?”

Another girl with Williams–Chelsea, who was the same age as Eli–performed so well academically that she took the same classes as typical students, although her assignments were modified. But this didn’t mean she was any better integrated with her peers. While she easily charmed adults with her warm, gregarious personality, she, too, often came home in tears after being rebuffed by her classmates.

It’s not uncommon for people with mild disabilities to suffer more social angst than people with severe disabilities. According to one study, those on the high-functioning end of the autism spectrum were abused by their peers more often than those with profound autism, partly because they were placed in less protective settings where social expectations were higher. Compared to people with severe autism, those with fewer autism symptoms and a higher IQ were also more likely to suffer from depression and anxiety, partly because of their heightened self-awareness…

Her father understood, from a developmental perspective, why Chelsea’s classmates distanced themselves from her. He didn’t see it as deliberate cruelty and tried not to take it personally.

“So much of it is tied into their own identity,” he said. “At this age, they’re trying to navigate these social systems for themselves, to find their place. And as soon as they recognize something in her that doesn’t fit in, they want to dissociate before it becomes part of them.”

Knowing that, and keeping it from breaking his heart, were two different things.

This is exactly the problem. Normal people identifying with their little groups instead of the human condition, taking exclusion for granted as normal. If the normal people decided it shouldn’t be normal anymore, it would change. The adults would see it happening and intervene, modeling what it’s like to be decent and respectful to everyone. The kids learn to behave that way from the adults.

Interestingly, Greek people don’t describe the overfriendliness in Williams syndrome as a problem. Japanese people do, though:

Zitzer-Comfort’s study found that while people with Williams were more social than their non-Williams peers in each culture, both groups were less social overall in Japan. In fact, American children without Williams showed the same level of social behavior as Japanese children with Williams, whose behavior was considered wildly inappropriate by Japanese standards.

Returning to the “holy fool” issue:

Most of us aren’t born with the same capacity for indiscriminate kindness that is innate to Williams, but many believe we should aspire to that standard. The precept “Love thy neighbor” is common to all major religions, from Hinduism to Islam to Confucianism to Judaism. The story of the Good Samaritan, illustrating the godliness of showing mercy to strangers, is among the most popular of Christian parables.

…And many Christians make an effort to embrace the same openness, trust, and wonder found in Williams syndrome, following Jesus’s admonition, “Unless you change and become like children, you will never enter the kingdom of heaven.”

Even the most modern seekers of enlightenment strive for a state of Williams-like openness. This quest partly explains the popularity of the drug MDMA, better known as ecstasy or Molly, which is classified as an “empathogen” for its ability to elicit feelings of empathy and intimacy…One of the ways the drug elicits this sense of connection to others is by increasing the amount of oxytocin in the brain, just as Williams syndrome does.

…Even non-autistic people who take ecstasy sometimes describe it as a spiritual experience because of the feeling of universal kinship it inspires. Like Williams syndrome, MDMA obliterates inhibitions and creates an overwhelming urge to connect with other people. Unlike Williams, however, its effects only last for a matter of hours. The drug takes users on a kind of vacation in a Williams-like state of raw vulnerability and harmony with humankind; then it wear off, returning them to the real world and their ordinray inhibitions and defenses. Glimpsed in this way, the world of Williams can be magical, even though–or more likely because–the experience is fleeting. It’s a nice place to visit, but most of us wouldn’t want to live there.

I think everyone who’s tried to prolong their roll with more pills would disagree. I’m a stoner, because I’d prefer to live my existence in a more psychedelic state (cannabis increases oxytocin release, too). The point of a meditation practice is to change these kinds of states to traits. Increasing access to these states and traits is vital to any kind of social progress. The black girl understands:

Because the focus of their textbook was on genetic engineering and the possibility that in the future, disorders like Williams would be eradicated, a number of students had asked the same ethical question: “If you could have made Eli different, would you have?”

Gayle answered honestly. “No one wants a child who’s going to have difficulties. If I could change it to make his life easier, I would.”

One girl, a relatively recent transfer into the school district and one of its few black students, raised her hand high.

“I wouldn’t change anything about him,” she said emphatically. “He’s so friendly. He’s the first person who ever said hi to me when I came to this school.”

…Gayle had been convinced that she needed to protect Eli from his peers, and all the while they had been nurturing him in their own ways. She had worried that, without the sophistication required to climb the middle school social ladder, he’d be trampled underfoot by the popular crowd. But his sincere warmth, antithetical as it was to coolness, had upended the normal rules of popularity, making him a nearly universally beloved figure in his class. The power dynamics Gayle had envisioned had been inverted: instead of seeing his openness as a weakness to be exploited, his classmates had been drawn to him and driven to defend him from the same threats Gayle herself feared. She’d underestimated the power of his compassion to bring out the compassion in others.

Here I am thinking these are rotten kids, and they’re so supportive–so kind, she thought when her long day of lecturing had ended. She’d been afraid that Eli would never make a friend. But he’d had friends all along.

Reminds me of this essay.

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