Day #306 – Hot in Here

It’s true.  Summer in Iowa has arrived.  It is currently in the mid-90’s with a heat index over 100 degrees.  We don’t live in ‘dry heat’ though – it’s like a sauna out there.  It literally feels like you could cut through the air.  Thick. Hot. Steamy.

It’s too hot to swim.  I know – it sounds bizarre…but it is.

On day #116 I wrote about the dangers of cold due to the troubles with Tucker’s interoceptive sense.  As anyone could imagine…if he has troubles recognizing cold, he has troubles dealing with the heat.  Obviously, he needs to live in San Diego where I’m told it is about 75 degrees year round.

Just as Tucker was born hungry, he was also born hot which is why he can ‘take’ the cold.  However, he cannot take the heat.

His interoceptive sense stands in the way of regulating his body temperature.

When he was 18 months he fell ill. I was giving him alternate doses of Tylenol and Advil and I still could not get his fever to come down.  I know that fevers are natural.  I know that fevers are necessary to kill the germ that is causing the illness, but this was different.

I tried everything.  He hadn’t felt good for a couple of days and was laying on top of me, listless.

He seized.  As I scooped him up to get to a vehicle I noticed his eyes rolling back into his head.  Tears were flowing down my face as I begged his dad to drive faster.  His tiny body was limp in my arms.

We rushed into the Emergency Room where he received an IV and meds to get his fever down.

I told the ER Doctor the entire story and how I had been religiously alternating the medications.  I told him about the cool (not cold) baths, about teas, about soups, about pushing liquids – I had done just about everything I knew

The Physician gave us Tylenol Suppositories and told us that if we had any trouble keeping his fever down that we should come back. His fever didn’t return to normal for a few days but it was manageable with the suppositories.

Every fever from that point on had to be treated with suppositories – the oral options never worked.  His fevers simply spiked high…and fast.  (As an FYI – you can buy Tylenol Suppositories at your local pharmacy counter without prescription – you simply have to ask for them.)

When he was four it was a beautiful June day –  sunny and 85.  We were at t-ball practice when he came to me and said, “Something not okay mommmy.”  Then he went down – fell to the ground.  His eyes were glassy, his cheeks puffy and red, his speech slurred.

But, no sweat.  None.

His coach reacted quickly recognizing the sign of heat exhaustion – but neither of us could figure it out.  It was hot…but not THAT hot.

Soon after we began trying to figure out what was going on with him.  He was diagnosed with anhidrosis, which is the inability to sweat.  We were told that eventually he would grow out of it – but in the meantime we needed to help him stay cool…

By spraying his skin with water when we were outside.
By getting him to drink more, more, and more water.
By filling him full of electrolyte drinks when he came inside.
By paying special attention to how much time he was outside.
By never allowing his internal temperature to get too hot.

Why?  His body is unable to regulate cold AND heat.

A year later we had the Sensory Dysfunction Diagnosis and I happened to stumble across a research article about the noticeable size difference in the hypothalamus between neurotypical and ASD children.  The hypothalamus regulates body temperature and is an integral part of the interoceptive sense.


I am not a physician, I have not conducted my own referred research, but I happen to think there are too many connections to ignore.

So, this summer – pay special attention to those kiddos on the spectrum – they may be hotter than they appear.  As for Tuck, he is spending the day in the basement where it’s nice and cool.



One thought on “Day #306 – Hot in Here

  1. Pingback: Day #327 – Indexing | 366 Days of Autism

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