When your autistic child gets sick

I feel it necessary to add a couple of disclaimers:

1. If your child is sick, call the doctor. I’m not a doctor or nurse. They know your children better than I. Don’t underestimate your own instincts. You are the expert of your own child.

2. I have 2 autistic children, but that by no means makes me an expert. What works for me and my kids may not work for yours. Use your best judgement. Use what works.

Ok, that’s out of the way. Butt covered.

This week both of my autistic children came down with different illnesses. It’s possible they’re the same bug but presented differently, but for all intents and purposes, they were different.

My oldest came down with some sort of 24 stomach flu. Vomiting and diarrhea. Thankfully, once everything was out of her system, she was fine.

Warning: graphic description of bodily fluids. If you’re squeamish, skip to the numbered section further down.

If your child is anything like mine, getting sick freaks them the heck out. Complete panic. My oldest usually makes it to the bathroom but not always. And (sorry for being graphic) this one came out both ends. Lacking executive function, a main component of autism, means that new situations or rare situations or situations that haven’t been prepped for lead to confusion and panic. We’ve had incidences of running vomit. Not fun, let me tell you. Our kids just don’t understand what is happening to their bodies and they don’t have the ability to communicate their needs or hurts. This is especially evident in my 4 year old. He just cries. A lot. If you ask him anything, he breaks down. If you offer him anything, he breaks down.

Dealing with a sick kid is no fun. Dealing with a sick autistic kid can be downright miserable. But don’t despair. You aren’t alone and this doesn’t last forever. And I have a few tips we’ve learned over the years that I can share.

1. Don’t let it catch you by surprise.

I say this knowing that so many parents are instantly going to object, but hear me out. If all of a sudden your child regresses back from a hard earned skill, or suddenly falls asleep in random places, or tantrums over something he doesn’t normally have issues with, your child is communicating that they aren’t feeling well. It’s SO hard to keep things together when you aren’t feeling well. This is a pretty universal person thing, not just for autistic children. Think about how edgy and crabby you can get when you have a headache. Neurotypical folks can just say they hurt, take some Tylenol and lay down.

Can you spot the sick child among the mounds of laundry?

I think it’s in the mythical handbook that every caretaker will be suddenly thrown up on out of the blue, but if you’re aware of your child’s sickness cues, you’ll be less likely to be caught off guard.

2. Gather more information

You’ve now suspected that your child might be coming down with something. They can’t tell you if their head hurts or their tummy hurts. My oldest is able to communicate her hurts, but can’t communicate well the severity. Small hurts are life altering. Large hurts are ignored. I wasn’t paying enough attention once and a broken arm went far too long without medical attention. (Oops).

There are some ways to gather more information. This chart works great for my daughter, but would be useless for my son.

If your child is non-verbal or us incapable of showing you where it hurts, this scale can be helpful.

Taking the temperature of an autistic child can be a little like giving a cat a pill. Under the tongue isn’t possible. Under the armpit requires restraining. I’m too cheap to get an ear one, but I doubt I’ll get a better response. For me, I go by behavior over temperature. I very rarely take a temp. If you feel you need to, please do. You know your child best.

Again, if your child is sick, use your best judgement on calling the doctor. I’ve always found that it’s better to err on the side of caution when it comes to special needs kids. A call to the nurse can be so helpful in providing direction and/or whether or not a visit is warranted.

3. Prepare for the worst.

Without knowing exactly where it hurts or how your child will react, prepare for the worst. At the first sign of sickness, we set up the sick couch. I’m not super fussy about stains on my furniture. With 4 kids, I won’t be joining the white couch club anytime soon. But I also don’t want to clean puke out of the crevices between my cushions either.

Having birthed 2 babies at home, I have an abundance of extra mess catchers. Chux pads are the best parenting invention ever. Unfortunately, chux pads make a crinkly noise that neither of my kids will tolerate. So they go on the floor. You can put a towel over the pads if the sight makes your child freak out.

If your child will tolerate it, putting down a shower liner over the couch can help contain messes. You can get them at the dollar store and throw them out if they get soiled. We usually drape the shower liner from the top of the couch all the way to the floor. That way messes flow downstream. We put a bath towel down next, followed by a softer blanket.

If your child will not tolerate the sound or texture of the bath liner, there are several softer options. This is the one we use.

Even for a young child, you’ll also want to keep a bucket or bowl nearby. I laugh at the little kidney shaped ones at the hospital. How anyone can ‘hit the bucket’ when the bucket is that tiny is beyond me. Find a big bowl. The wider the better.

Finally, keep plenty of towels and/or paper towels nearby. We also keep an empty laundry basket handy so you can collect the dirties and throw them right in the tub or wash. (We rinse them in the tub first because our washer won’t even handle sand).

Sounds like overkill I know. But the worst case scenario is you don’t use them (or the best case). I’d rather have to clean up the sick couch than have to clean sick off the couch.

4. Pick your battles

Your child is sick. Now is not the time to be worried about screen time or setting them on the potty every 1/2 hour or trying to get them to eat something other than their preferred food.

Now I feel the need to add another caveat. This only applies if your child is genuinely sick. If it means getting out of their preferred food, I’ve found my children to resort to any kind of manipulation. I wish there was a magic detector for true or faked sickness. For now, let’s assume it’s a real illness. Now is not the time to be pushing therapy techniques.

If your child will tantrum if they don’t continue with their routine, do as much as you think they can tolerate. Mine absolutely refused to keep his pajamas on, which is part of our daily routine and on his chart of responsibilities. Rather than making him do as much as he’s capable and pushing him to do more, I dressed him. Now is not the time to work on skills.

But won’t they regress? Won’t they use their illness to manipulate you later? I’ve never found this to be the case. When they are sick, they aren’t working out complex manipulation. Blankie isn’t allowed out of bed (we’ve been working in this skill -it’s his comfort item) but when he’s sick, blankie stays with him.

5. Distraction and background noise

This is the point where I haul out the secret weapon. The Kindle. I can’t express how much this little square of technology has saved my life. We don’t have a TV in our main living space (there’s one in my bedroom because my husband managed to coerce my while I was on painkillers, but that’s another story).

Distraction will be your child’s best defense to the onslaught of new and unusual sensory input they’re dealing with.

If you’re worried about it getting puked on you can put some Saran wrap over the front (not on the sides where it vents). The Kindle also comes with a 2year no questions asked return policy. So if it gets zapped by some projectile, it’s replaceable.

Blankie, bucket, shower liner, Kindle show

6. Lower sensory input

Because your child’s body is shooting a barrage of new sensory experiences to your child’s brain, overload is inevitable. One way to help your child cope is to remove or reduce other sensory input.

Lights can be especially difficult to cope with if any kind of fever or headache is present. If your child uses sunglasses to cope with lights, try using them in this situation as well.

For us, the biggest sensory issues come from siblings. They touch him or make loud noises or run around or try to cheer him up. They’re sweet kids. They just want to be helpful. If you are able to, keep them away. We are occasionally able to employ a grandparent to take the healthy ones for the day. But when we can’t, they go into the other room. Usually I put a movie on in my bedroom (on the TV I never wanted, but now can’t live without). For me, this is also not the time to limit television usage. I’m pretty strict about screen time normally, but when our autistic children are sick, the neurotypical kiddos get extra screen time. Lots and lots of extra screen time. I promise, it won’t fry their brains. But it’ll save your sanity and keep your autistic child from having constant overload.

7. Hover

When my autistic children are sick, they don’t want to be held, they don’t want to be touched and if they had their way, they’d retreat to a dark cupboard. But because they aren’t the best at hitting the bowl and they panic from time to time, I hover. But I’m stealthy about it. I face away. I don’t talk or make noise. I read a book or work on my phone. But I’m listening very carefully for that pre-puke cry or a change in behavior. Stay close, but don’t let them know you’re hovering.

At night, I put the baby monitor close or I sleep near him on an extra mattress. Yes, we still have a baby monitor in the kids’ room. It just seems like a smart thing to do even when the kids are healthy. I can hear if they aren’t sleeping or if they’re getting up at night. But especially when they are sick, it’s super handy to be able to monitor without them feeling the hovering.

Hopefully that gives you at least a couple of things to try. Having a special needs child with an illness is exhausting. Please please get help if you can. The laundry can wait, the dishes can wait. Dinner can be take out. Allow yourself some grace. Now isn’t the time to try to do it all. Any help you can get, take. And hang in there. Little dude’s fever broke and now he’s back to acting like himself again.

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