severely autistic person in pain

[Sarbjitpahal11]

our daughter is severely autistic. We are having times when she is obviously in pain but we don’t know where. We give her pain medication, but would like some advice on how to diagnose what is causing the pain. We have tried body maps, but she doesn’t understand. She is petrified of needles, so a doctor can’t do any blood tests. We have even tried diazepam to relax her first before a needle, but it doesn’t work so the doctor can’t diagnose the problem. Any suggestions would be appreciated.

[Sage-green]

If she is known to the learning disability team, do contact them. They have different techniques to do medical procedures including sedation or if scans are needed even an anaesthetic.All the best.

[Sarbjitpahal11 in reply to Sage-green]

Hi Sage

Thank you very much. We already contact Disability Children Team they do nothing for her anyway thank you so much

[Badedee]

you might find the Cerebra pain guide booklet helpful- so sorry you can’t get to the bottom of what’s causing the pain

[Sarbjitpahal11 in reply to Badedee]

Hi Badedee

Thank you very send me any link this Cerebral pain guide booklet please thank you very much

[Badedee in reply to Sarbjitpahal11]

I am very sorry but I haven’t found a way of adding links to comments on this forum. If you do an internet search for Cerebra Pain Guide you should find it- it’s free to download. Good luck

[Sarbjitpahal11 in reply to Badedee]

That’s fine i Google i download now thank you so much

[Lucacielle]

Sorry to hear your daughter is in pain..how old is she.

Only going by past experience with my son, when he was in his mid teens...It turned out to be his wisdom teeth coming through, causing pain time and time again.

Luckily and not an easy decision to make he had all 4 removed...the best thing we could have done for him.

Maybe worth ruling this out.

[Sarbjitpahal11 in reply to Lucacielle]

Hi thank you very much to message me. Yes maybe you’re right. We need to do x-ray Wisdom teeth but unfortunately my daughter don’t like to do x-ray She 23-year-old non-verbal we already tried x-ray thank you so much

[Lucacielle in reply to Sarbjitpahal11]

Has she never seen a dentist ...A dentist should be able to look at her teeth... no neeed for an xray.

[Bluey203]

Hi, I know how stressful it can be when they are unable to locate a pain. My adult son is also severely autistic nonverbal, a couple years ago his behaviours escalated obviously due to an unknown pain, we took him dentist but nothing was found and doctors to rule out ear infection etc, he was given lorazepam which actually made things worse, and obviously doesnt treat the root cause of the problem.

Then we kept a daily diary on everything, from what he ate, mood, activities and when he did a poo, we then realised he had chronic constipation, he's now on daily laxatives and is much happier, I still keep a daily diary today, it helps to see any pattern for any behaviours.

As others have said, you should be able to have your daughter sedated in the hospital to do blood tests or scans to rule things out, I would ask the doctor to make a referral.

Hope things improve soon, take care ♥️

[Sarbjitpahal11]

Hi thank you so much. message. It is very helpful. Yes, you are right. We need to make daily big helpful thank you so much. God bless you.

[Greengame]

Hello my son is autistic and verbal so he has been able to tell us. He has severe sensory processing issues which cause him physical pain from household noises like washing machine, kettle, dishwasher, hoover etc. all of which we manage around him and he is also diagnosed with chronic pain condition Fibromyalgia - took years to get this diagnosis due to him being housebound. Receiving this diagnosis and acknowledgement that he is suffering pain was very helpful for him as it was difficult to get doctors to recognise this for a long time.

I am aware of a number of people with autism who have chronic pain conditions such as Fibromyalgia and also Erlhers Danlos Syndrome and I think this is becoming more recognised as an issue for some autistic people.

Unfortunately my sons pain Consultant has advised us that the most recent research says pain medication is not successful in treating Fibromyalgia pain. Although I think SSRI medication may be suggested on NHS website. Sertraline certainly helps my son in managing his severe anxiety.

To manage his pain my son is supported to take baths every day and sometimes several times a day which appear to soothe his pain and associated anxiety etc. His OT recommended putting Epsom salts and essential oil bath salts containing Chamomile and Lavender etc. and these do not seem to cause sensory problems but this is probably very individual so may not be suitable for some. We use Epsom salts and these bath salts together: verde.co.uk/products/bath-s... The baths do seem to help him.

The other thing which is recommended is graded exercise which of course is not easy to support with. Exercise is the main tool. If it's possible to access a warm swimming pool I believe this can also be helpful. My son also uses distraction to try to manage his pain - watching films, playing computer games etc.

I know how hard it is to watch your loved one having to deal with this and I do hope this is at least a little bit helpful.

[Dahlialady70]

I can totally sympathise as my adult Autistic son is non verbal so cannot tell me what hurts and he doesn’t understand what I’m asking him. It’s one of my biggest worries with him that he may be unwell but cannot express it. I just have to pick up what I can from visual prompts such as flinching when swallowing etc. but of course not everything is obvious. If in doubt I give him some soluble paracetamol as he won’t swallow tablets. I agree it’s a big concern.