when drama queens have autistic children

I suspect that some of the tragic consequences of autism are iatrogenic, i.e., caused by the treatments and parents themselves. These parents have trouble empathizing with their children for narcissistic reasons. These are the parents that need their children to be normal and care what everyone else thinks, and it’s a widespread issue.

The Anti-Romantic Child is a perfect example. I came across it while researching an earlier post about hyperlexia. I argued that “hyperlexia III” was a fancy way of saying “but you’re too high-functioning to be autistic.” The Anti-Romantic Child is a mother’s memoir about raising a hyperlexic son, and it fits that pattern. The author, Priscilla Gilman, starts by describing her own childhood. She’s one of those people who had a hard time growing up, but they’re afraid of ever saying their childhood wasn’t idyllic.

I had always had an unabashedly romantic attitude toward children and childhood, and idealized what I saw as my own romantic childhood. My father was a drama critic, professor at Yale Drama School, and author; my mother a literary agent; and their friends were highly creative people–artists, actors, writers, directors. I grew up in a rambling prewar rent-controlled apartment on the Upper West Side of Manhattan in a family that encouraged me and my sister to revel in our creativity and the freedom of unstructured play, to be physically exuberant and affectionate, emotionally and imaginatively extravagant.

She goes on to explain that it was her dad’s second marriage, and the new family was supposed to be his “redemption” and a way of “finding that place of transcendence and bliss, of uncomplicated and pure happiness, that had proved so elusive.” She quotes a letter her sister wrote about their father:

My father BELIEVED in childhood. And he infected my sister and me with this belief, leading us to develop the rich, imaginative life that we had as children…My father understood that imaginative creations were not secondary to real life but fundamental to a rich and fulfilling existence. Throughout his life, my father sought something higher, something beyond the dross of the everyday…My brother, sister, and I provided him with that. We were more than just his children. We represented all that was good in the world.

Then she describes all the problems and the divorce and reading to escape. Lots of taking care of her dad emotionally. An earlier post noted that this kind of parenting, where the parent needs a happy fantasy land, produces white fragility as a side effect. The Anti-Romantic Child is an illustration of how the dysfunction plays out across generations. From Stephen Johnson’s Humanizing the Narcissistic Style:

When the parent has herself been narcissistically injured in childhood, she looks to her child to provide that narcissistic understanding and mirroring that she herself did not receive. As a result, she cannot be used by the child in negotiating the powerful issues of rapprochement; rather, she uses her child for the mirroring she still requires.

The classic archetypal mothering figure who narcissistically cathects her own child is the “stage mother.” This typically pathetic character lives through the artistic expression of her offspring and loses her boundaries in that identification. Typically, the child of the stage mother is used in hope of remedying the disappointments and deficiencies in the mother’s life; as a consequence, there is a desperate quality to the overseeing of the stage mother…

When the child fails to provide the necessary echoing or fails to live up to the exaggerated expectations, the mothering figure may withdraw her love or display the kinds of outbursts of temper that characterize the child’s rapprochement subphase. The child, vulnerable and dependent, will then deny his real self in order to hold onto the mother…In this etiological formulation, the narcissistic injury exists in the parents’ inability to accept, understand, and love the child with all of his real conflicts, vulnerabilities, and magnificence. To feel again the rejection of one’s real self is to reexperience the very chaotic and overwhelming emotions of the rapprochement period without the necessary parental support to negotiate the crisis. A confrontation of that state, labeled “abandonment depression” by Masterson (1976), emerges in every treatment of the narcissistic issue.

Clearly, an autistic child isn’t going to be good at intuiting the emotional needs of a parent like this. Those needs must have been great for Priscilla Gilman, because she deliberately had a child that was supposed to fix all her problems in the middle of grad school, a place known for emotional problems.

I was aware of the ominous studies and statistics showing that having children dramatically reduced a woman’s chances of receiving tenure, but on some level I was deliberately embracing risk, because doing so would affirm my commitment to the life of relationships and feeling over and against the competitive, solitary, cerebral world of academia. The arrival of a baby would serve as a welcome reminder of the primacy of emotion over reason [!], family over career, love over argument. And doing it at an inopportune time–when I was supposed to be hard at work polishing my resume for job applications the following year–was part of the point. Also, I wanted to prove that I could do both…[I] ended up getting an offer from Yale [where her dad taught]. Most important, getting pregnant in my circumstances was an inherently romantic gesture, throwing caution and common sense to the winds, a defiance of convention. Children were going to be the antidote to the aridity of scholarship: they would put me in touch with deep feeling and essential values and restore me to myself.

I think it’s bad that there’s a taboo on telling people that that is not a legitimate reason to have children. The child is being created to serve as an emotional support object, when they couldn’t possibly understand that and didn’t sign up for it. Being autistic, her son had his own ideas. Later, they conceived a second, non-autistic child as a romantic gesture in response to 9/11.

When reading accounts of parents, I think it’s a good idea to assume that the parents were worse-behaved than they’re letting on. There are many places in the book where she’s sure her son wasn’t picking up on something because she hid it so well. I’m not so sure. The point I was making in an earlier post is that events like what she describes in the next excerpt, about breastfeeding, are known to cause symptoms that overlap with autism, for attachment theory reasons.

There was nothing symbolic or spiritual about what we were doing. I felt again and again the crude physicality of it. He was a voracious breast-feeder, but it wasn’t a loving act of connection. It was a desperate physical need to suck something, anything; he sucked Richard’s finger or the pacifier in exactly the same way. Whenever he was sated, I handed him off to Richard with intense relief. I remember after one especially difficult session pulling Benj off my breast forcibly and thrusting him into Richard’s hands, saying “I just don’t get him,” and walking, or rather stalking, out of the room…I felt a strange detachment from Benj, an inability to know what he was feeling or thinking or needing that baffled me…Would he ever connect with me in a sustained and meaningful way?

Of course he does. This is a recurring pattern in the book. Her son isn’t meeting some milestone on a schedule set by other people, leading her to catastrophize and do something that makes the situation better or worse, and he can eventually figures it out. It’s unknowable whether that would’ve happened without so much intervention.

Eventually she discovers hyperlexia on the internet, and of course she and her husband are devastated. Note that she went on to describe hyperlexia as a form of autism, and her son as autistic:

In the book itself, there’s a lot of hand-wringing about the reductiveness of labels. Hyperlexia at least sounds more unique than “Asperger syndrome.” I think she proves my point that hyperlexia exists to exclude (their idea of) high-functioning people from autism. High-functioning adult autistic people that credibly disagree have to be defined out of existence.

The book is marketed like it’s about the author’s journey of acceptance, but really it’s about her fretting that her son will never be a “real kid” if he turns out to be autistic. She really uses that phrase, multiple times. For example, in a journal entry:

Can Benj ever be a real kid? Will he ever have a friend? I can’t imagine him acting in a little play or wanting ice cream or looking forward to Halloween. I can’t imagine him having a sleepover or camping out under the stars or sharing a conspiratorial laugh with a buddy. I can’t imagine him saying “I love you” in a spontaneous, heartfelt way.

We’re supposed to believe she didn’t communicate any of this to him, because it would be bad if she did, right? For the record, the magical climax of the book is that her son plays guitar at a school concert, after telling her it was demotivating to keep hearing how it would be OK if he screwed up in front of everyone. The autistic adherene to rules makes it easier for him to turn down ice cream, because of his gluten-free/casein-free diet. He writes haikus about the beauty of solitude in the winter among the birch trees.

Dr. B turned to me again. “What’s your deepest, darkest fear about Benj?” he asked, in the kindest, most respectful voice imaginable. “That he’s autistic,” I replied. “Why does that scare you more than anything else?” he asked gently. Again I felt tears coming into my eyes and I gazed imploringly at him. “Because that would mean his brain was fundamentally askew, that he couldn’t improve or get better or that if he could, his life would be essentially constricted and limited, and that he wouldn’t have what I believe matters most in life: loving, intimate relationships with other people.” Dr. B smiled, “This child has been given to you, Priscilla, for a reason,” he said, gazing straight into my eyes with a look of steadfast belief and absolute confidence. I jumped up and hugged him for a very long time. His words felt like a benediction.

Transference much?

When she divorces her husband essentially for having autistic traits, she shows that she’s aware of what neurodiversity people have been saying: the way you treat autistic adults sends a message to your autistic child.

I felt, however illogically or misguidedly, that to reject or abandon Richard would be in some way also to reject or abandon Benj. For in many ways my son was someone who was going to be the man I could no longer be married to. Crippling perfectionism, social awkwardness, rigidity about routines, and difficulty with physical expressions of affection, emotional immediacy, cognitive flexibility–all of these traits and qualities Richard shared with Benj. I feared that divorcing Richard would be sending Benj a message, however obliquely, about his own undesirability. My own son would be very difficult to be in a romantic relationship with–would I want a woman to turn away from him? Wouldn’t I, in effect, be saying that Richard and Benj were not worthy of someone holding on, hanging in there with them, being patient and forgiving and understanding of their quirks and their limitations? Wouldn’t I be implying that they were not valuable despite their issues, that they were not deserving of unconditional and infinite love? Just as I had with Richard, I wanted a gentleness of heart and a gentle hand for Benj. I wanted Benj to have his spirit recognized in the tangled thicket of his difficulties and opacities. I wanted people to look beyond the superficial oddities and potentially frustrating and confusing behaviors, to work hard but with tenderness, patience and perseverance to understand him and bring light to his shade. Would my “giving up on” Richard be in some way an acknowledgment that this work had been, was, or would be in vain?

While it’s true that the husband and grandmother are in denial, and it’s her worrying that gets any attention to her son’s problems at all, they’re also more accepting of his basic personality. The husband, because he’s the same way. The grandmother for more interesting reasons. She’s baffled that her mom would have the “stamina” to spend an hour tossing a ball back and forth with a few stock phrases. “[I]t seemed that the repetitive motion and lack of emotional demands were pleasant and soothing to both of them.” Of course, she makes a lot of emotional demands. The grandmother reads to the boy, but “she would never make up stories or enact pretend scenarios with him as our grandmother, her mother, had done with us.”

The grandmother ends up liking the kid because he’s so good at following rules, meaning he knows how to behave in public and is good at saying the normal courtesies at the right times. That’s my memory of childhood, too. That’s part of why I’m struggling to understand all these issues with public meltdowns that so many families complain about. No, of course the child freaking out inconsolably isn’t always the parents’ fault. However, I think it’s too generous to automatically give parents credit for instilling the value of politeness into their children. Rude, inconsiderate adults are everywhere, and some of them also have autistic children. People judge because it partly is a matter of values. If the kid weren’t autistic, would the parents believe that manners were only inhibiting their child’s spontaneous creativity? Parents like that also have autistic children.

I emphasize the grandmother bonding with the kid because it shows that he can bond, and that Gilman’s problems come from her mindset.

And his relationship with his Grams continued to deepen. My mother’s impatience with dreamy idealism, her need for structure, her pragmatic nature meshed perfectly with Benj’s personality and temperament. After two outgoing, verbal, emotionally expressive daughters who would chat into the wee hours of the morning with her if she’d let us, she was relieved by Benj, who’d say, “Uh-oh, seven fifty-seven, three minutes till bedtime,” and abruptly stop whatever activity he was engaged in. She saw his practical, rational, literal bent as refreshing in a family of dreamers and idealists. She encouraged his interest in the stock market and accounting; “Maybe someone in this family will actually go into business!” she’d say smilingly. She relied on Benj for technological and technical assistance; he fixed her BlackBerry and computer for her, and always knew how to get the television working again and which kind of battery each remote needed. She loved the fact that he leaned toward the pragmatic rather than the imaginative; “We need this in our family!” she’d often say. Benj’s insistence on and pleasure in routine and ritual both gratified and delighted my mother.

“Dreamers and idealists” is Priscilla’s self-description. How would her mother describe it when her daughter’s needy “emotional expressiveness” is keeping her up and throwing off her whole next day, unlike the socially retarded yet still considerate grandson? Gilman has a form of extreme, self-indulgent individualism, but it looks like her grandmother recognizes that family members can complement each other as part of a larger unit.

Speaking of lifelong dependency, note that Gilman always had the fallback option of working for her mom’s literary agency. Her social circle included Woody Allen. She and her husband were East Coast English grad students. She thumbs her noses at the commoners with their “practicality” and “pragmatism,” i.e., respect for potentially irreversible consequences. They buy a multi-story house next to Vassar with her husband’s “little inheritance.”

At one point, she applies to 20 or more exclusive mostly-private schools, and of course they reject her son for doing autistic stuff. Over and over. I don’t know if she dragged him to all 20 schools, but she quotes him saying one was his 7th favorite. Did he really not understand what was going on when she’d bring him to a brand new place with brand new people, he’d have a meltdown, and they never went back?

At one point in her quest to find the perfect school, not one of those public schools like the commoners, only something that costs tens of thousands of dollars will do, she puts down a deposit on a house in the right neighborhood. Then she just walks away from the deposit when she changes her mind for some reason.

I noticed at one point she said her son was too weak to lift off her lap, and she was also working as an aerobics instructor at one point, while constantly keeping herself busy with far too many things at once. It made me wonder if she might’ve had some kind of eating disorder going on, which wouldn’t be out of character for Ivy League Achiever.

I think her kind of romanticism is life-denying and world-rejecting. I’m not trying to transcend this world and visit an imaginary magical place and then be sad when it disappears. I’m trying to be open to the wonder in everyday situations. In the next passage, consider that mystics often live as monks, where their whole life is routines and rituals, but they experience all the rapture she finds in her poetry.

One of the large challenges of my relationship with Benj has been integrating working and feeling into one act of dedicated devotion: figuring out how to rise about the relentless daily demands, the need for predictable schedules and structured tasks and meticulous planning and hold on to a sense of boundless possibility and exuberant unpredictability. How could I as a parent be both pragmatic and romantic, realistic and visionary, precise and focused in my attention to his needs and yet able to be “surprised by joy” (Wordsworth). The epigraph to the “Intimations Ode” begins: “My heart leaps up when I behold / A rainbow in the sky,” and it is just this capacity for leaps, for surprise, for being carried away by strong feeling that I have striven so hard to preserve.

Well, “exuberant unpredictability” is and will always be aversive for some people. A major problem autistic people have is that they have so much enthusiasm for something other people think is mundane. This is initial her reaction to her son’s poetry, when it’s about something he’s into:

Can be updated
Often come preloaded with DirectX
Memory is space available for programs and processes
Play sounds when events occur
Use user accounts to separate people’s files
The brain is the CPU
Easy to use to manage files
Restart in “Safe Mode”
Store personal information

As Benj read quickly in a rather monotone voice, glancing up and out between every few lines, my initial reaction was “This doesn’t sound like poetry! How could this be considered a poem?” Sensing my befuddlement, Richard leaned over and whispered to me: “It’s an acrostic!” (a poem in which the first letters of the lines together form a word). I nodded and smiled. While the computer acrostic wasn’t very “poetic,” it was very Benj, and it was a great example of him dipping his toe into something unfamiliar or uncomfortable (being creative, reading aloud to a group, sharing his work) while anchoring it in something very familiar and comfortable.

Fuck, it must be hard to write grade school poetry when your mom is an English major, and a stodgy old-fashioned one who hates theory at that. Other people without those self-imposed limitations invented things like digital humanities, which sounds perfect for her son. She recognizes the issue, but very late in the book:

Moreover, his experience of numbers and letters was quite close to fantasy play. It’s true that the fantasy took unorthodox objects, but imagination was nonetheless playing a role [the world’s mathematicians just rolled their eyes at the condescension]. So while in those first days of realizing that Benj had serious developmental problems it might have seemed that he lacked a “poetic spirit,” I know now that he never really did. My experience with Benj has, in fact, exploded all kinds of stereotypes and misperceptions I had about what it means to be poetic, about imagination, about romanticism. Watching him write his own songs and poems has changed the way I think about inspiration and the creative process.

Benj was recently given a homework assignment to write a poem of at least eight rhyming lines using as many suffixes and spelling words as possible. I sat with him while he pieced it together–tapping out rhythms, looking up synonyms and words in his rhyming dictionary–and there wasn’t one moment of panic. For him, it was like fitting the pieces of a puzzle together–a creative task he saw as challenging and fun. And this is what he came up with:

The Reading Boy

There was a boy who was good,
And on a big ladder he stood.
He pulled a small book off the shelf,
And started to read it himself.
The boy enjoyed reading the stories
That were full of excitement and glories.
And after reading he spent
All his money to buy a play tent
Where he could enjoy a good book
Alone in his own private nook.

Picking up the theme of what to do instead of empathy based on identification, she quotes Rilke:

Once the realization is accepted that even between the closest human beings infinite distances continue to exist, a wonderful living side by side can grow up, if they succeed in loving the distance between them which makes it possible for each to see the other whole against the sky.

She says she didn’t understand the idea before having her son.

What initially felt to me like a bewildering distance now feels like a beneficent space…The distance, space, gap between me and my child is no longer a terrifying void, an unbridgeable gulf, a yawning emptiness, but rather a capacious and blessed opening, an aperture of respect and marvel. Being at arm’s length from Benj is what’s enabled me to see him truly, to accept and appreciate his irreducible otherness. Benj had taught me both how to be alone with myself and to recognize that the space between us is something to cherish.

Measuring the space or distance between Wordsworth’s radiant visions and the reality of my experience with Benjamin initially heightened my “sense of wrong” and my feelings of betrayal and disillusionment. I had an image in my mind, a sense of what my child and my experience of parenting him would be like, that had both drawn me to and been intensified by Wordsworth. As a lover of Wordsworth, I was more vulnerable to experiencing the situation as poignant, heartbreaking, even tragic, because I was invested in a certain mythology of childhood.

OMG thank you. Yes, her son is autistic, but a major part of the problem was her own childish ideas about childhood, which are widespread and heavily-promoted. “The primacy of emotion over reason” makes you act like a histrionic annoying person. Quitting grad school to leech off your mom in a publishing job people would kill for, because you had a poorly-conceived child is not the same thing as romantically throwing caution to the wind. At worst she was in danger of having experiences unbefitting of her social class.

Rich people’s concerns are taken more seriously than other people’s concerns, even when they’re stupid.

It’s a very well-reviewed book. The problem is that its “poignancy” depends on the reader having a very negative view of autism. Otherwise it’s a book about preconceived notions leading her to reject her son and be anxious around him all the time, which couldn’t have been optimal.

She eventually came to a kind of spiritual realization, but could we accelerate that? The problem is that self-inflicted survival mode isn’t the right state for learning to slow down and think and appreciate life. Popular culture is against it. Being emotionally riled up all the time, without reason to level things out, is a bad idea. It leads to chaos, not to life as never-ending transcendence. It’s not like someone is going to reevaluate their whole attitude to life in the middle of meltdowns and coordinating a multidisciplinary team of professionals. It would’ve been better if they waited to outgrow adolescence before having children.

So what are the chances of getting other autism parents to have the same realizations?