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Autism and Illness: Our Last Frontier?

Autism and Illness: Our Last Frontier?

By Mir Kamin

At 16, my son finally appears, at least at first glance, to look just like the majority of his peers. He wears humorous t-shirts under one of his beloved hoodies atop jeans and sneakers. His hair and glasses are similar to the other kids at school. He is well-groomed, other than often needing a shave. Sometimes he has a few rogue pimples. He’s neither short nor tall. He doesn’t stand out. He’s a perfectly average kid.

Of course, he’s not average, and in our family we’re fond of saying that normal is a setting on the washing machine, but for him, this is a small triumph. The politics and ramifications of “passing” aside (because sometimes appearing to be neurotypical presents additional issues when you eventually present as the non-neurotypical person you truly are), for a sensitive, autistic teen, blending in is a hard-won achievement. Years of wearing shirts with the collar or cuffs chewed to shreds lay behind him. Years of being the smallest kid in the class (but talking like an 80-year-old professor), too. If he just wants to be inconspicuous, now—a survival skill in a large, public high school—he can. At the same time, he’s more comfortable just being himself, too. If he wants to hold forth in a class on a topic of interest to him, he no longer feels self-conscious about it. He goes places without us and tries new things among strangers more often than I’d ever dared to hope. If he needs to work out some energy by moving his body around at an “unexpected” time or remove himself from a stressful situation to calm down, he’s okay doing those things, too. We have tried to stress over the years that he’s perfect just as he is, but we all sometimes adapt our behavior to certain surroundings just to make our lives a little easier. I feel like he’s finally in a place where that’s all clicked for him. He’s still himself, but he can also adapt to situations which call for a bit of change without it stressing him out too much.

The last frontier, however, still has me worried, because I’m his mom and that’s my job.

For years, “I don’t feel well” was not a part of his vocabulary. I determined he was ill in one of three ways: 1) If he insisted on lying down or otherwise behaved oddly in the middle of the day, 2) if he was burning up with fever, or 3) he vomited. And I’m not just talking about when he was a toddler, either. I’m talking all the way up through middle school. “Are you feeling okay, buddy?” has always, always been met with a bewildered, “I don’t know.” We knew from an early age that he has what they term proprioceptive impairment, which is basically a fancy way of saying that his sensory issues make it harder for him to be aware of where his body is in space and how it feels, but as he grew into the teen years and still seemed incapable of identifying pain and discomfort, I began to wonder if he would ever develop this awareness.

Last year, he got the flu. As I sat with him at the pediatrician’s office, waiting for the doctor to come swab him, he turned to me and said, “Mom, I feel awful.” It took all my strength not to get up and do a little dance. I didn’t want him to feel awful, you understand, but to be able to identify and express that, was, for him, huge. Random fears I’d had of him breaking bones and being unaware or heading in to work with encephalitis someday were quelled with those four simple words.

Per usual, he is proceeding on his own timeline, slowly figuring out some of those skills which come much more easily to the neurotypical. The flip side of this phenomenon, though, is that this year—arguably at the pinnacle of his ability to cope with all the things which can be difficult for him—he is suddenly complaining of various aches and pains with alarming frequency. Given his former propensity to barely notice a fever of 104, I’ve been alarmed and vigilant, only just recently realizing that I may need to adjust how I handle these complaints. (We’ve been to the doctor a bunch, including a full slate of blood work to make sure there wasn’t anything serious underlying these issues.) Now, it appears, he’s figured out how to “tune in” to those body signals, and he’s feeling eeeeeeeverything he never did, before. He has joint pain (he’s in the middle of a rapid growth spurt) and headaches (noise sensitivity has always been part of his world, but it seems to be worse now) and stomachaches (show me a sensitive person who doesn’t get stomachaches and I’ll show you a bridge I have for sale). Instead of trying to figure out when he’s unwell but unaware, I’m left trying to figure out when he really does just need to do some deep breathing or a little exercise or take a few minutes in a dark room.

The day before yesterday was a rough day at school, for him, and he came home dysregulated and clearly in pain. I was left trying to play detective, had something with his body thrown off his mood, or had his mood sparked physical symptoms? I gave him some medicine for the headache. I encouraged him to go lie down under his weighted blanket (that thing is a miracle, by the way) for a while. I peered at him while he picked at his dinner, trying to conceal my own anxiety and determine what he needed. By bedtime, he felt warm to me. I sent him upstairs with directions to turn his alarm off and plan on staying home from school the next day. He agreed, and yesterday he slept almost the entire day. Physical stress or mental stress? I kept trying to figure it out, until I finally had the epiphany that it doesn’t matter. Whatever it is, whatever the source, he was unwell and needed rest. That’s it. If I’d told him to go to school he probably would’ve gone (and probably had an awful day), but if staying home resulted in him sleeping an extra six hours, I’m going to say that was the right call no matter what.

This morning, I asked him how he felt. “Not great,” he admitted. “But I need to go to school. I think I’ll be okay.” He has a presentation to make and doesn’t want to miss it. I admire his conscientiousness. I worry he’s not really well, yet, but I want to follow his lead as much as is reasonable. Now I cross my fingers and wait to hear how it went.

It’s all progress, right? Tell me that when he leaves for college in a year and a half that he’ll be able to figure out when he needs to power through and when it’s time to get his butt over to the health center. He will, right? Lie to me, if you have to.

Mir Kamin
About the Author

Mir Kamin

Mir Kamin began writing about her life online over a decade ago, back when she was a divorced mom trying to raise two regular little kids and figure out what she wanted to be when she grew up. Now ...

Mir Kamin began writing about her life online over a decade ago, back when she was a divorced mom trying to raise two regular little kids and figure out what she wanted to be when she grew up. Now her life looks very different than it did back then: Those little kids turned into anything-but-regular teenagers, she is remarried, and somehow she’s become one of those people who talks to her dogs in a high-pitched baby voice. Along the way she’s continued chronicling the everyday at Woulda Coulda Shoulda, plus she’s bringing you daily bargain therapy at Want Not. The good news is that Mir grew up and became a writer and she still really likes hanging out with her kids; the bad news is that her hair is a lot grayer than it used to be.

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Comments

  • Jodie

    He will.  He totally will.  And per usual (for us all) he’ll get it wrong a bunch before he gets it right, but that’s how he’ll learn.  I run a large organization and the number of people who are *still* learning this skill as an adult is pretty high.  But, he’ll get there.  If anything of Monkey’s journey is clear, it’s that he’ll find his way down this road.

    Somewhat related – a skill (need?) I only recently came to terms with is that sometimes my emotional state absolutely requires me to shut down and hermit up….even if there is little in the way of physical symptoms.  Once I acknowledged this was OK, I bounce back a lot faster.

  • Kate

    My son is a lot younger (about to turn 7) and he’s the same way. Luckily his teachers and support staff know so a few weeks ago when he complained *once* that his throat hurt they sent him straight to the nurses office where thanks to telemedicine he got a strep test. Three days of a low grade fever and answering “no” to at least 20 versions of “does your throat hurt?” later the strep test came back positive.

  • Meg Murry-ish

    Ok, so only half joking – can you help him make a flow chart? So he can go to -> not feeling well -> take temperature – > over X, call an ambulance, between X and Y stay in bed, if same next day call a doctor, etc. Or lots of if-> then statements.

    I’m an engineer, so that’s just how my brain works, but its also how I quiz my pediatrician for my kids. Ok, its probably just a bad cold, but at what point do we need to come back (fever of X degrees or over Y for Z days, rash develops, etc), at what point do we need to go to the ER if its the middle of the night, etc.

    Eventually you’ll also have to get into the baby steps with him of dealing with missing class/assignments/exams and negotiating with the professor – but you’ve still got some time for that.

    • This is a fabulous idea, thank you! Now to figure out what all to put on it….

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  • Meri
  • It sounds like he’s on the way already.