Many of the attempts to prevent or cure autism are promoted in humanitarian terms: they are attempts to “end suffering.” Sounds great, right? Who wouldn’t be against ending suffering? What are you, some kind of monster?
…As with so many arguments around autism, though, this one is sloppy as hell in its word choices. Specifically, what it means by “suffering.”
Autistic people who protest cures or prevention are frequently told that the cure or prevention is not for them (who are sufficiently “high-functioning” to lodge a protest). It’s for those “other” autistic people, the “low-functioning” ones, who are “trapped” in their bodies with no way to “communicate,” and so on. Inevitably, the cure/prevention proponents assume that “severe” autism, in and of itself, is a form of suffering – that no one could, say, be unable to form mouthnoises into words or perform the motor skills necessary to daily living tasks and not be suffering. To them, the very fact of these difficulties is suffering.
Viewed from this light, cure or prevention to “end suffering” sounds like the only humanitarian option. But, once again, the lightbulb is the wrong color.
Here’s an analogy.
I have chronic pain. I’ve had it nearly as long as I can remember – since about the age of two and a half. I have exactly two clear childhood memories that are not colored by pain. Today, my daily pain levels average a 4-5 of 10. That is, my pain is always high enough that I cannot tune it out. It is always present. I am always aware of it. But it is rarely so high that I cannot think of anything but the pain. I know what a 10 – the point at which one passes out from pain alone – feels like. I get there a few times a year.
Most people equate pain with suffering. Even many doctors do: this assumption is behind the use of pain as the “fifth vital sign.” When people hear that I live in constant pain that is too high to ignore, they’re generally shocked, dismayed, and sympathetic, because they presume that I must be suffering.
Sometimes I am. I still don’t know how not to suffer at an 8 or above; I doubt anyone does. (At a 9 I become unable to make safe decisions; I will try anything, no matter how extreme, to end my own pain.) For a long time, I suffered at a 4 or 5 – convinced that my life was over, my pain was my fault, and that nothing could ever be done to make it “better.”
Since November, though, I haven’t suffered at a 4 or a 5, even though my pain levels themselves have not changed. I spent November at the Cleveland Clinic. Some people leave the Cleveland Clinic’s Chronic Pain Rehabilitation Program with lower pain scores than when they went in. I did not.
But my suffering has largely been eliminated.
My suffering was eliminated not by curing my pain (it’s still there). Not by reducing it (it’s the same). Not by going back in time and “preventing” it in utero (not an option). It was eliminated by me amassing a wide variety of coping tools and strategies.
Some were physical (lots of PT for my borked shoulder).
Some were psychological (figuring out why I work myself so hard and letting go of the maladaptive beliefs that drive me to do it).
Some were behavioral (getting up and moving around when I notice I’m in pain, instead of staying at my desk to “push through it”).
Some were social (cutting off people in my life who made my pain worse with their criticism, anxiety, or because they had nothing to talk about but their own pain).
Some were nutritional (finding out I was critically low on certain vitamins).
Some were pharmaceutical (In my case, meds actually make my pain worse).
Cleveland worked for me when twenty years of other solutions failed for two reasons:
- It took a multi-pronged, whole-life approach, and
- It sought to alleviate my suffering rather than my pain.
Every other attempt had assumed the pain was the cause of the suffering and had attempted to stop the pain – and failed. When we decoupled the suffering from the pain and treated the suffering as the problem, we succeeded.
If our goal in autism treatment is truly to alleviate suffering, we would do better to stop trying to “stop the autism” and start trying to stop the suffering. Suffering is a problem. No one denies that. But suffering is a problem regardless of the underlying cause, and it can be addressed even if we cannot prevent or cure the underlying cause.
And suffering, unlike autism, can be addressed now, today, with the tools we already have. We still don’t know a whole lot about autism’s causes or functions in the brain, but we know a lot about suffering, adaptation, and accessibility. We know a lot about how suffering is a global life experience, and how multiple facets of one’s life need to be addressed in order to reduce it.
If we focus on suffering, we don’t have to wait for some “cure” or “prevention” to come out of a lab. We don’t have to catch fetal autism signs in utero or else. We can make the lives of actual, already-existent people measurably better. And, as an added bonus, the problem of efficient distribution of resources solves itself.
But first, we have to accept that autism is not the same thing as suffering, and that one can have autism and not suffer. That’s a tall order. But it can be done.