Tuesday 25 April 2023

Trying to tell if my pre-verbal autistic son is in pain?

David is not like most other twelve year old boys. He's not got a favourite football team, he doesn't eat pizza and he's never played a game of Fortnite. But that's not surprising.  David is autistic and part of this means he's also never tied his own shoes, independently brushed his own teeth or used spoken words to tell us anything other than his basic wants.  One of my greatest concerns is that David will need to tell me something and he can't.

And one of the things I worry about him not being able to tell me... is if he is in pain. 

I've read some many news items on research that shows people with autism or ADHD are more likely to die early. Or maybe more specifically earlier than their peers. From my own experience as a parent to autistic and ADHD I'd likely think this is to do with a couple of things.... so this is not based on anything scientific. 

But I'm guessing my kids understand less about danger and can be impulsive and so there is a greater risk of injury or accident. David has a very restricted diet like many people with autism and this means he's not getting all the vitamins he could be or the nutrition.  It's no doubt one of the reasons why he is so small for his age and doesn't seem to have a lot of muscle.  But this probably means he's just not as strong or healthy as others his own age either. 

But more often I'd think it would be to do with not understanding something was medically wrong or even if they do.. not being able to figure out how access or how to get help.   Like in my last post, I can tell they have a cold or maybe hayfever if they have a snotty nose and can try and help them.  But pain is not always that obvious.

Pain is our body’s way of letting us know something is up. Sometimes, it can a lot more serious than others. On most occasions, we will find that it’s just a small ailment that needs our attention. But ultimately, our body is trying to signal to us that something is wrong in a set area and that it wants us to address it. So if your body isn’t feeling right, it tries to tell you.

But I don't know if David can understand what his body is trying to tell him.  And I don't know that even if he understands it, if he is able to tell me. 

Is David falls over, bangs his knee or gets soap in his eyes it's often relatively easy to figure out.  We've taught David to say 'ouch' when something happens and he echos this back to us usually.  He is also pretty good at labelling parts of his body and we can ask 'where ouch'.  But when even a person who is able to communicate effectively is in pain their ability to do just that is diminished.  

We will often have to guess where is hurting and try to deal with it.  It’s one of those things to really use your judgment about.

We can look for physical signs of injury such as red marks, grazes or maybe even a carpet burn if he has slipped.  Is David trying to get to a part of his body?  Some children even hit at an area of pain to try and bash it out or rub it away. 

David will often try to 'inspect' an area but I don't know if this is learnt as it's the first thing I do when he comes to me and he is hurt. I think it might be his way of seeing if it is different... he doesn't like different. But this can indicate he is unhappy with the way he is feeling.

When David feels sick he tries to put his hands in his mouth.  At first i found this really concerning as it looked a little bit like how you would make yourself sick and I was worried where he had learnt it.  But I think I've figured that he feels likes he is going to vomit and doesn't like the feeling in his throat.

There are times when I think he might have a headache but I honestly don't know why.  I think it's that he seems more sensitive or more grumpy than usual.. like I am when I have a headache.    

If David goes to the loo often or spends too long in there again this can indicate he's having pain in his abdomen.  I can check how his trips to the toilet go and I can feel his tummy to check if he tries to pull my hand away indicating that pressing it may hurt.  

It's worth mentioning that David can also be struggling with something mentally and this can also cause his tummy to feel unsettled. If he has had a meltdown or is very stressed he can feel this in his stomach and will ask me to rub his tummy. 

These are the things I look out for, but I honestly still feel like I could easily be missing something... and it could be major.  It's the whole idea that what if he's always been in pain and thinks that's how he should feel.  How would he know any different? 

Helping David with pain is possibly even more challenging.  There are some things we can do to help him but there are few times that we are asking ourselves is paracetamol a painkiller because it's so hard to give medication to him unless it's really necessary.  

When he was about five he went into surgery to have teeth removed.  He must have been in pain before the operation as he had several cavities and afterwards the bottom half of his face looked like he'd been a boxing ring with Rocky Balboa. 

It was awful.  He hurt and cried but didn't know why he'd been made to feel like this. But he actually got over it very quickly like he does most things. I can only hope that as he grows I can help him and spot when he's not acting like himself and advocate for him when he needs it.  He already struggles in the world, I don't want him suffering in silence too.  

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