I was so frustrated I could scream (this is a very sensitive topic)


We’re sitting in the doctors office. All of us are crammed into a tiny room because she sees everyone at the same time and it’s easier that way. Anyway, before the doctor came in, Gavin starts squirming in his seat. He’s getting agitated and making strange faces. I asked him what was wrong and he said I don’t want to talk about it.

When Gavin says something like that, it’s a safe bet we need to know what he doesn’t want to talk about.

I took him out into the hallway, because he didn’t want to talk in front of everyone else and I can understand that. I asked him again what was wrong and he went somewhere I wasn’t expecting.

He told me his butt hurts. After going back and forth, trying to figure out what he’s talking about, I finally got him to tell me that the problem was that his rectum hurt. He used the word butthole, but I figured I would try and make it a bit more clinical.

He explained that it’s been hurting and driving him crazy. I tried to get more information but by this time, he’s crying, so we go back into the room.

Soon it’s Gavin’s turn with the doctor and he’s already worked up and on the verge of a total freak out. In the most awkward way imaginable, he told the doctor what was going on. Kudos to him for doing that, regardless of how awkwardly he did it. Those kinds of things aren’t easy to talk about. Unfortunately, we weren’t at the right kind of doctor for this to even get looked at.

By this time, Gavin’s hysterically sobbing because he says it hurts so bad. Gavin gets hysterical about things like this and it’s hard to know what’s pain vs what’s freaking him out.

We’re trying to get an idea of what’s going on and for how long it’s been going on. Turns out he’s been dealing with this for three days and just never said anything to us about it. For that matter, he never showed any signs that anything was wrong. It’s for this reason that I suspect he was more frightened than in pain. He said he was afraid he would have to go to the hospital and get an IV.

He finally told us that it started out being really ichy and that he tried everything he could think of to make it stop. The way he worded that caught my attention and I asked him what he’d tried. I was concerned he’d done something that could lead to major problems.

He answered that he’d tried lots of things. I asked him what lots of things meant but he either couldn’t or wouldn’t answer.

At this point, we’re talking about running him through the ER because that’s the only way to know anything for sure. We let it go until we got into the car and headed home. As I’m walking to the car, I’m psyching myself up because I needed to have a difficult conversation with someone who can barely hold a conversation. I knew it was going to be frustrating and I just wanted to survive it without losing my cool.

As we’re driving home, I’m trying to get as much information as possible because I want to have some idea of what’s going on.

I noticed that when I asked Gavin things like how long has this been going on for or how many times a day are you pooping. Anything that required a time-frame, he simply answered by saying three. How long has this been going on? He replied three days. How many times are you pooping each day? He replied three times.

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CC Me

Is it possible that Gavin picks up on tension around him and that makes it difficult to divulge a problem? Speaking from my own experience as an autistic adult, I remember my dad used to get annoyed and upset if I said I needed to go to the bathroom while we were out at an activity, so I trained myself to stop saying it and would hold it to the point of pain and only go if he went. I got yelled at if I threw up or complained of not feeling well. I learned to hide it if I was sick until I couldn’t hide it anymore. I didn’t speak up if I was in pain.

So I was taught that needing to use the bathroom when somebody else doesn’t have to is bad and I have a hard time speaking up when I need to go. Fortunately I haven’t had any accidents, but I’ve sat in pain with diarrhea cramps before and nearly messed myself to avoid having to say I was having a tummy problem.

I’m not saying you do that. It’s just…if you look annoyed he might pick up on that annoyance and feel guilty about saying he had a problem. I know you are under a lot of pressure in your household, so sometimes that steam escapes in ways we’re not aware of. Autistic people are very good at sucking up the tension in the room and then getting tense themselves and may not be aware they are doing this. It’s like walking into a room where people are arguing and feeling like I’m upset for no reason.

Moving on, an idea to help Gavin with his sore butt might be baby wipes, if he’ll tolerate them. They’re moist and wet which might help him clean up better after a diarrhea episode.

CBDad

I completely get this. My son had been having some tooth pain that he described as “minor”. We saw some gum irritation and set up a dentist appt which was about a week away. We intermittently gave him some Tylenol when he asked for it. Two days before his appt., he went to bed and because so agitated about the pain that he actually went downstairs after we were in bed and tried to pull his own tooth with pliers. He almost got it out and ended up killing the nerve. We were lucky enough to save the tooth with a root canal and some bracing, but it just highlights how these poor kids don’t have a relative sense of what they should report.

Lindsay

It sounds like hemorrhoids. If he is also having diarrhea, the (not to get too gross) residue, is probably not getting cleaned up completely and that causes the itching. Add the overwiping and your going to get swollen down there. Pain and itching are classic symptoms of this, even if you can’t see anything popping out it might be internal. I would give him wet wipes that have witch hazel in them and some Preparation H although that might be a bit of an adventure to apply properly. If they are external, then get a sitz bath and some Epsom salts or even an ice pack can help if the pain is super overwhelming. I wouldn’t jump straight to omg it’s a fissure. Hemmerhoids can be super debailitating. I would have thought that would have been picked up in the colonoscopy but if you have a couple of good sessions of straining to go or bad diarrhea, they can develop very quickly.

It could be something else completely of course, but it sounds pretty classic.

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