How can I tell you where it hurts, when I can't talk?

When Liam was small and we didn't yet know he had autism he used to get rampant tonsilitius.
I would take him to the Doctor, get the antibiotics and then fail hopelessly at getting Liam to take them (because he was so sensitive to taste and smell) so bacteria being who they are would then build themselves up and mutate into something even stronger and more painful.

Even with this septic mess of a throat, Liam would continue to run around and play until suddenly he would go  pale and listless.
I would take him back to the Doctor only to see him CRINGE as he examined the tonsils and say

"They are VERY infected" then look at me like I was the worst mother in the world, write a new prescription and say firmly "complete the course" as if I was too busy smokin, drinking cider and playing the slots to ensure that my son took his medicine.

Eventually after many flare ups and visits and hiding of medicines in food (a bad idea) and asking if they could be administered by injection (no!) I was advised by a teacher "that medicine was medicine and it had to be taken as such".

So I stopped hiding it in yoghurt and chocolate pudding and milk (and putting him off all of these) and I wrapped him in a towel like a cat, and gave him the infant drops made up to maximum strength until he did finish a full course and kicked the bug.

And I learned that our kids do not understand how to "Act Sick".

Now kick aside any assumptions about "high pain thresholds". You cannot put yourself in another person's body and count the number of pain receptors they have. If you don't believe me, try googling "Dislocated limb vs Child Birth" and see what comes up.

I've had both and I can say I went back for another go at child making, but I never put my thumb anywhere near a conveyor belt again.

So No, Autistic people are flesh and blood and they feel pain to the same or lesser or greater degree as anyone else.
What they don't do naturally is learn to act like they are in pain.

Wives and Mothers have to learn this from experience. If you have a filthy cold and feel like shite, DO NOT load the dishwasher, make the lunches and lay out tomorrow's school uniforms and then expect someone to bring you a lemsip while they do the baths and bedtime routine.  Because your significant other will assume since you are well enough to do the first chores, it is perfectly okay for them to watch Arsenal defeat Barnsley while children run rampant, unwashed, unbrushed and wide awake; while you cough up a lung.

Nope, you have to take to your bed like a Victorian heroine the minute your partner gets home, and stay there while they cook the wrong dinner, and make strange lunches and put saucepans on the top shelf of the dishwasher and wine glasses on the bottom.

Hold your forehead and cough weakly when you are asked how you are. And when they go out (to McDonalds to get a better dinner probably) THEN you run around with the hoover and make sure everyone has clean socks and undies for tomorrow. Then jump back into bed.

Our kids with Autism, have to be Taught to do this. Because the ability to think like someone else, to imagine how someone else is thinking, is SUPER difficult for our guys - we have to teach them that telling us about something internal, is going to be rewarding.

You start small, you start with something that is obviously and visibly painful; like a stubbed toe, or a bump on the knee. (for ethical reasons you cannot create these opportunities, wait for them to happen)

Stop them and sit them down while you rub the knee or toe and kiss it, apply savlon and comfort them verbally. Give them hugs or pats while repeating "Sore Knee, OUCH!, Sore Knee".

In other words give positive 1-1 attention for the visible injury.

At the same time you should be using separate opportunities to build body awareness.

Show me, Point to, What's This? for Tummy, Forehead, Teeth, Chest, Nose, Eyes, Ears and Groin.

Tutors and Teachers do this by direct teaching, using physical prompts, flash cards and often a doll or toy to point to the relevant body parts.

Parents can just throw these in in tickle and cuddle games, or while dressing.

And the idea is that they would learn to generalise - taking the extra attention they get for showing you a hurt knee, and learning to show you a sore tooth, ear, or tummy/groin.

Which you can then treat with calpol, bongela or a trip to the doctor for further investigation.

This "program" worked magnificently with Boo. Who will demand a Doctor for a hangnail or call for an ambulance if he bumps his funnybone.
But when he did have an ear infection recently, when he told us "The ear is sore" he was right. And the Doctor didn't treat me like a serial killer, because it wasn't that bad.

For Bratty, it is much harder as she does not have the verbal language to tell us her arm, leg or ear hurts. So we rely on visuals like pictures:

You can create your own picture cards using images from these free websites:

But how do you make sure those pictures are where you need them, when they do fall down?

Well now there is an App for that! Go here to learn more.


drwende said…
This is a fascinating and wonderful posting. I'm used to the idea that most behavior is socially learned and still had never thought that "acting sick" isn't a biological function. And of course, you're right. Most of us just pick up the behavior so automatically that it looks "natural."
Jean said…
are you psychic as well as rockin'???
Bob had 3 teeth out 10 days ago and it was very difficult to watch, as he was obviously in discomfort, but was (initially) unable to tell me where it hurt.
Boy, he learned fast!
He has a few words and has now added "mouth sore" to his lexicon.
Knowing how to express pain (verbally or non verbally) is vital, and without being a drama queen, could even be life saving.
I'm with you on the medicine-giving. I'm afraid I'm guilty as charged and am facing a 10 year stretch at the Joy for the crime of Hiding The Junk. It doesn't work, and only makes the kid mistrustful of food. medicine is medicine. I like that.
Truely valuable post hun, and I hope you re-post it often XXX
Make Do Style said…
Brilliant post - I need your help petit garcon keeps having poo accidents at nursery. I think he's got into bad habits and now I need to try kindness to help him really break the pattern (whilst I go mental at nursery in the background)
I would take him out and not work until he's goes to school in Sept but no sure this is good for him ref friends or me!

What do you suggest?? xx
crazy mum said…
hammie i love this. ur timing is as always fantastic. this is something i need to work on.

thanks hammie
Katy said…
A really fantastic post,I think this is one of the hardest parts of the "autism" to deal with,and very recently had the the problems with Jim and his teeth.I totally understand also different types of pain threshold i had 2 kids without any pain relief and this is not a boast i was very surprised my self but given the choice between child birth gall stones and the dentist,show me the way to the labour ward anyday!
Absolutely brilliant and should also be required reading for parents of other non-verbal children who may have severe handicaps. It has taken time for me to realise that Smiley may be so stoical because her severe handicap means that she doesn't know that she should be upset when in pain. Often I only know because she sleeps a lot.
Anonymous said…
This is an excellent post. Roro seems to have a high threshold of pain that the first sign we have that he is not well is that he's not eating. Scrapes are easy enough as he loves the multi-coloured band-aids and know to ask for a kiss for his Boo-Boo's. It's the internal ones that are hard to find out about, so we will take your tips to heart and start working on them. The medicine part is tough is the medicine prescribed is not pink. I just thought of it now and will ask the pharmacist to write down for me the anti-biotics etc that are pink or at least white & add some food colouring maybe. At least half of the battle is done...till he tastes them!
Thanks again for another insightful post.
kathy said…
fantastic blog Hammie you are so in tune with your children its inspirational
Lisamaree said…
DrWende: Thanks. And when we ran with the pack we would have learned to hide pain or weakness. But once we started our social society- I guess some of us evolved to share, in order to be cared for. xx

Jean: I've been thinking of you, of Katy and of another friend whose son was very ill over christmas. I also remember Bratty clinging to my scalp in the recovery ward after she had 7 teeth out. That was an effective way to share pain! I hope Bob is on the mend soon. I know exactly what you are both feeling at the moment. xx

Kate: I will send you some links on facebook now. And can you email me more details about antecedents and consequences for each accident.
While most kids in daycare will use bedtime as their revenge, having No 2 accidents is another effective way of communicating - "i'm not happy here" So we will see what we can do. xx

Claire: glad to be of service. You can do this verbally of course. With Boo I use Elizabeth Arden 8 hour, Tiger balm along with Bongela and other placebos to encourage him to think of me as "a fixer" when he is hurt. Get tactile! xx

Katy: you were on my mind when I wrote it. This was my one goal of a Pyramid consultancy that I fundraised for 4 years ago. And the feckers in the old school didn't see it through for me. Now's my chance to fix it. xx

Candi: there was once a belief that babies felt pain differently - why oh why would they perform circumcision without an anaesthetic? (why perform it at all??)
I think there is still a belief that when people cannot "give out" that somehow they don't feel the same way as the rest of us. You only have to look at the mistreatment of stroke patients and the elderly in some nursing homes.

But as Parents and Carers we can be advocates. So keep it up gel! xx
Lora said…
Griffin used to not be able to tell me when he was in pain and sadly has always had such a high tolerance to pain. Lately though he has been able to tell me that he hurts, thanks goodness. And now he tells me often even though his threshold is still pretty high.
You have made a very valid point though. Great usual! Hugs!!!
Make Do Style said…
Hammie - you are psychic because in my head I thought you can facebook me but didn't articulate this and that's what you did! Plus your remark about 'not being happy' is I believe the crux of the matter. He doesn't get enough or the right kind of attention as other children demand or are given more because he is naturally self contained, quiet and shy in groups.
Jen said…
Great info Hammie, I am on a mission now to become 'a fixer' because we have all of those issues in this house. It is great to get some direction on it, thank you:) Jen.
What I don't know about autism could fill an encyclopedia. As always, your post is fascinating. It is lovely that you encourage the sharing of the pain. Many families discourage it, even if their children don't have autism.
Petunia said…
Another fabulously informative post missus! Thankfully Munchkin rarely gets ill enough for medicine but when she does it generally gets sprayed all over me as I give it to her. No point hiding it as she's like a sniffer dog! Last antibiotic she needed, the doctor on duty made a few samples up for me to taste to see which I thought she might take lol. I always get the pharmacist to make up double quantity to take the spillage into consideration! xx
jazzygal said…
Fabulous post Hammie..invaluable.
And great advice as ever. Whatever about the advice for the kids I'm certainly taking my "medicine" next time I'm feeling unwell ;-)!! What you say is oh, so true! xx Jazzy
Clive said…
A brillant and informative post!
Nan P. said…
I had seen this on the Late Late, and funny how my view of Colin Farrell changed after seeing this: I did not know about his son. He took on a very serious, ok let's say it: mature dimension for me.

The question you raise is true for any new parent with a little baby: How do they tell you, how do you know? But babies grow up and learn to express themselves... most of them.

Thank you for this post. As always you give me a reality check I need every now and again.
Lisamaree said…
Nan: And you know what? Colin actually supported special olympics WAY before he became a dad xx