Evidence for Humility

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On Facebook, a colleague of mine once listed her religion as “evidence-based medicine.” I recoiled at the outright declaration of idolatry. . . but I secretly admired her dedication, and through my actions, I assumed the same stance. While medical giants of old founded their practice on theory and the ways of revered mentors, I earned my scrub cap in the era of randomized controlled trials, guidelines, and systematic reviews. Dogma, my adherents and I espoused, was dangerous. Nurses and trainees would watch with mouths agape any time I, at the towering stature of 5 feet, would resist a doctor’s suggestion that wasn’t backed by studies. “Thank you for the thought, but no, we won’t be transfusing blood,” I would insist, amid protest. “I understand your concern, but there’s no indication for antibiotics.” Nurses called it my Mama Bear mode, and I relished the title. I felt like my patients’ defender, an advocate for truth and for optimal care.

Then, God gave me Pip.

We noticed his intensity and his sensitivities immediately. The hours of screaming as an infant, without ever sleeping. The howling whenever we bathed him. The panic in response to clapping. The inability to use napkins, have a tag in his shirt, or to hear the sound of a toilet.  The half-hour meltdowns after every grocery store trip.

The signs were all there. I saw them. But I dismissed them. Because there’s scant randomized, controlled data for sensory processing disorder. And therefore, I haughtily decided, it couldn’t be real.

The American Academy of Pediatrics published a caution against diagnosing SPD in 2012. A year later, the 5th edition of the Diagnostic and Statistical Manual of Mental Disorders — considered the authoritative reference on psychiatric disorders — excluded it from its list of recognized diagnoses. Those two blows were enough for me. As I pored through stacks and stacks of books on autism, ADHD, oppositional defiant disorder, and other conditions (none of which fit Pip, by the way), I just skipped past any mention of SPD.

It took my own poor kid, weary, exhausted, troubled, and only four years old, to actually tell me what was going on.

“Mum,” he said through tears one night, after a horrid day of meltdowns and irritability, “noises, busy places, and scratchy things make me anxious, Mum. I feel anxious all the time.

His words struck me cold. I’d rejected the possibility of SPD because I’d decided the data were insufficient. Yet here was my own child, describing to me sensitivities so severe they impaired his ability to handle daily routines.  What I’d discounted as quirks, prohibited him from doing life. Even if the studies didn’t convince, what he described impaired his ability to function. . . which is the definition of a disorder.

The evidence was right in front of me.

To be clear, I am not criticizing evidence-based medicine. Especially where critical care is concerned, it literally saves lives (the Surviving Sepsis campaign leaps to mind). If you read my book, you will find it chock full of study references, all of them illuminating and helpful in understanding end-of-life care.

What I caution against is the hubris I myself slid into: the lie (and the blasphemy) that any method, or protocol, or ideology supercedes the complexity of God’s work. The arrogant presumption that we have all the answers.

We should follow, with careful discernment, the path that the best data paves for us. . .but we cannot stalwartly close our minds to the possibility of alternative routes beyond our perception. We may not have the numbers and statistics to describe a condition. . . but that lack of data, a failure on our part, does not by necessity mean a condition does not exist. Science guides us toward a deeper understanding of God’s creation, in all its wondrous nuances and intricacies.  But our methods are man-made. They are imperfect, and prone to error (the recent retraction of a dozen articles by a researcher at Cornell provides just one example. . .events leading to the opioid epidemic offer many more).  Statistics do not always convey truth. Evidence-based medicine is not righteousness. It certainly cannot give us the Gospel.

I regret that it took the struggles of my own, suffering little boy to unveil my idolatry. And yet, I am oh, so grateful. God does this with our sin. He reveals our waywardness not always with fire and tempests, but often in simply giving us over to the corruption of our minds and hearts. In the book of Hosea, God gives Israel over to the false gods whom she pursued, knowing she will discover only misery. He withdraws His gifts from her, and so as she chases after prostitution and bounty, she reaps only infertility and hunger.

And yet, He pays the price for our redemption — in Christ’s blood — and forgives us! How awesome, how gracious and merciful is this Lord of the universe, that even in our stubborn retreat from Him, He pursues us? (Luke 15:20) How steadfast is His love for us, that when we were dead in our sins, He made us alive again in Christ? (Eph 2:1-10)

The most compelling evidence in the history of the world, follows no statistics, but instead takes the shape of a cross. It guides our path. It steers us toward truth. It points us to the One in whom we have ultimate trust, and hope, and assurance of steadfast love.

No data can alter that message, or diminish its power.

 

2 Comments Add yours

  1. allison425 says:

    Thank you for publishing this. It is an encouragement to a weary mother today. I have three sons. The oldest has Asperger’s, the middle I almost suspect has ADHD and is perpetually in trouble in 2nd grade. My youngest is 4, and I just got a call from the preschool that he is acting up too — again.

    It’s been a ridiculously hard season of parenting. It feels like we’re doing everything right, but our little boys are still so challenging. I don’t want to excuse their sin, but there is an extent to which some of their behaviors seem driven by their neurological makeup. Yet like you, I don’t want to jump to call it a disorder because I’m not fully convinced by the evidence that there’s reason to do so.

    Interestingly enough, I’m a nurse, so I totally get evidence-based practice. Maybe that’s one of my hang-ups. I hadn’t thought of that before. My oldest I totally believe has ASD, but my younger two remain to be determined. Still, disorder or not, I’m learning that compassion for their struggles is vital to making any headway in helping them.

    I think sometimes in the Christian community, there has historically been a huge focus on child training. While that’s not entirely a bad thing, I do think it has had some unintended consequences because it sets up a level of expectations that not every young child is capable of meeting. Then, when little Johnny can’t follow directions, sit still, and control his impulses by age 5, he is viewed as a bad kid, and the spiritual state of his parents is called into question. In my church community, I have seen a great deal of progress in this area in recent years, and I am encouraged by that. But I also feel that as a broader Christian community, we still have room to grow in understanding the needs of more challenging children.

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    1. Katie Butler says:

      Amen, Allison! Thank you so much for sharing your own struggles. I identify with much of your own path — the doubting, but the understanding that there is a very real, neurobiological underpinning to the behaviors we see. When my son is doing well from a sensory standpoint — i.e., when we’ve done everything right in terms of his therapy, and have limited his challenges — he’s a sweetheart, and so effusive in his love for people. When he’s struggling, he becomes controlling, mean-spirited, and appears viciously defiant. To outsiders, that looks like “bad kid syndrome.” But his apparent misbehavior actually stems from extreme irritability and panic. It’s been a difficult line to toe, supporting him and realizing what undergirds his behavior, while still reinforcing that his struggles do *not* mean he’s free to mistreat others or be disrespectful.

      And I do agree that we need to dialogue more about invisible needs, not only in kids, but in any member of the church family. God creates us all unique, with our own challenges and gifts. What better place than the church — a body founded on GRACE — to rear up our children? But, this side of the fall, we are still all afraid of our own brokenness, and eager to cover it up.

      I pray for strength and solace for you in this tough season, as you shepherd your boys to know the God who so loves them.

      Like

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