I remember my dad advising me about doctor’s visits, especially to be as specific and thorough as possible when describing symptoms — good, solid and maybe obvious advice.
Like so many things with severe autism, “obvious” is a luxury unbestowed. When sick, our 22 year old son Ben’s symptoms, unless they include gaudy, multi-sensory displays (i.e. puking), are typically hidden. We have to be detectives, sleuthing out signs any way we can.
Ben’s life-long extreme difficulty with communication is responsible for, I believe, pain tolerance far beyond most typical mortals. Maybe there are other reasons we don’t yet understand involving Ben’s neuro-wiring, but if you have to grow up with a range of painful maladies, like chronic gastrointestinal “issues,” and have no way to ask for help or simply tell somebody, then the pain and suffering simply become parts of life. Even as a baby, Ben was colicky in the extreme thanks to, at least we think, something like acid reflux. It’s a nightmarish thought.
A story I’ve told a thousand times to illustrate Ben’s idiosyncratic pain tolerance involves him being stung by a bee, but my not noticing until seeing him look at his shoulder, before casually flicking something away and returning to his task. It turned out he was receiving a bee sting that produced a half-dollar-sized welt. It received less reaction than a mosquito bite.
So if Ben doesn’t tell you when he’s getting stung by a bee, more subtle discomforts, like a fever, don’t stand a chance.
At least, they hadn’t. This week, Ben’s had the nasty bug that has been going around, with a fever and, as always with poor Benny, gut problems. But there was a big upside. Near the beginning of the bout, Ben said to an aide, “Are you sick?”
Bingo! That was a clear way of Ben telling her he was sick. Despite the question mark, he wasn’t making inquiries. It’s what he’s been asked countless times, and now we know he’s understood what was being discussed.
This is huge. Autism itself does not appear to affect longevity, but the side-orders of comorbidities do (“Mortality risk among those with autism was nearly twice that of the general population“). Though communication issues are technically not “comorbidities,” not being able to say what’s wrong is dangerous to one’s health.
We are left with the usual autism communication strategies, such as assessment tools with faces depicting a scale of pain, or questions with different answer options.
But those don’t always work because of Ben’s lack of buy-in. After a lifetime of suffering in internal isolation, a visual Q&A has no value to him because he doesn’t connect it to feeling better.
Then again, developmental delay is not developmental cessation. At a relatively glacial pace, Ben does develop, and he certainly loves to learn, and communicating, directly, that he was feeling sick is a heartening example of positive changes that will help him through his life. It’s the kind of thing we, as parents, take immense comfort in, knowing that Ben will likely outlive us by some years. With continued development, especially in communication, Ben’s old age without us should be, not just longer but, far more critically, better.
~~~~~
Also on Huffington Post: With Severe Autism, Just Getting Sick is Complicated
