Medical response to an autistic persons pain

I am undiagnosed and usually comment only on my own experience. I will try to highlight this in my posts, as I

 am largely unaware of other peoples experiences, except what I read on here. Thank you for mentioning this. I am still discovering where I fit on the spectrum and how other people are affected.

I took  pain pill but no affect. I tried many typs of wash mouth slept on my teeth and pressing on it.sleeping on teeh or pressing it increase the pain

That's one reason why it is bad at night. Pressure on the jaw and the odd displacements of the jaw when trying to sleep aggrevate the nerves.

Yes.

I do worry that I let my own "manageable end" Aspergers rules what I say on here. I echo what DaisyGirl says about judging issues when your only insight is at the manageable/ "mild" end.

It is also important to point out that being able to post at all on here implies a degree of moderation in the impact of autism. There are a lot of people out there who cannot post on their own account.

I admit I probably don't manage it but I do try NOT to look though "mild" end tinted glasses. But I retired from teaching and disability support in HE four years ago and am losing my touch.

I do do a lot of voluntary disability access assessment. Sometimes I'v got someone with me with a wheelchair, but that isn't always possible. So I have to think wheelchair, even though I'm able bodied, and think in terms of an imaginary envelope around me, at all the known constraints in lifts, toilets, turning circles, surface types.

So it is important to try to imagine the situation if you really were in pain in relation to your surroundings, and really had difficulty understanding people.

Also we are all very different, and one person's experience of autism/aspergers isn't enough.

Hi,

There should be detailed guidance on how NHS staff are supposed to deal with a person with autism and understand the different way in which they will present with pain. This is  a requirement of the NHS, and of individual doctors under the GMC guidelines.

Do you have a diagnosis? If you do you should have a statement of this on your medical record, and every time you go to hospital you should have an autism passport, this is printable from the NAS website. You must take this with you and have the medical staff read it.

I have not been on this site much recently because I have found that there are a lot of people saying stuff about Asperger's and autism who are very very able and do not seem to understand what it is like to have a more serious manifestation of autism. I have no learning disability, but my Asperger's is very pronounced. I have recently had very very bad treatment for a medical condition from the NHS and am still in the process of sorting all of it out, including the was NHS staff ignore autism and the reasonable adjustments they are REQUIRED to put in place to deal with people with autism (go to the BBC website and see what the RCGP are saying about the way autistic people and their families are being treated). I do not think it is helpful for very able people with autism to say things like "you can get used to this or that", the truth is that for lots of us with more severe autism getting used to all the things involved in medical treatment is not an option, for us every "getting used to" is actually a very complex and mentally tiring process, it never becomes natural and eventually leads to a complete mental and physical breakdown as we are required to try and act NT in very very stressful environments with overwhelming sensory overload, and staff who do not know what autism actually is.

The NHS does have guidelines on how they should treat people with autism, and this includes the unusual ways we may present with pain. I would recommend you get the autism passport and use it. If the staff ignore it, then complain, and if that doesn't get you anywhere go to your MP. Hope this helps.

outraged said:

I think there is a real issue here. The medical profession measures pain on the pain scale by comparing facial expressions and body language to a chart. Given that persons with ASVs often exhibit non-standard body-language, such a method is surely unsuitable?

Not sure if they use a chart or if they gain experience from their own lives and during training and when they are doing the job. The biggest variation will come between people who can communicate well and those that can't. The ones that can't communicate get little sympathy because they are frequently drunk or on drugs. You would have been incorrectly classified, alongside the other people who were unable to communicate well, as a troublesome nuisance. If you want to avoid this in future then you may have to seek out an advocate who would help you negotiate any confusion.

Of course, Catch-22 dictates that the people who most need an advocate are the least able persuade someone to give them an advocacy service.

Whenever I have been asked about pain it has been on a scale of 1-10. They always say "10 being the worst pain you can imagine, and 0 being no pain". In my mind, I would guess childbirth is about a 5, as there are plenty of awful things that must be far worse, so most usual pain would probably be around a 1-4 on their scale - if I was going to be totally accurate about it. But saying your pain is 1-4 is most likely to get you booted out of the door as a timewaster. 

I think there is a real issue here. The medical profession measures pain on the pain scale by comparing facial expressions and body language to a chart. Given that persons with ASVs often exhibit non-standard body-language, such a method is surely unsuitable?

One problem with pitching up at A&E is that they will get a regular stream of people who will "demand" very strong pain killers. Many of these will be substance abusers and the A&E staff wouldn't know you well enough to tell you apart from them. I'm guessing that you were very agitated and possibly not the easiest customer they had to deal with?

Put it down to experience and try to avoid getting into the same situation in future.

[quote user="Anonymous"]

 i didn't say it was an easy option. i should know more than anybody. I've tried people/everything, and it's been a horribly distressing experience. going on this forum, gave me hope to be less isolated, but i'm not finding it easy

One leg of the Triad of Impairments shot away "not everybody has rigid thinking".

I agree there are many factors and it is dangerous to blame everything on autism. But pain sensitivity is an autism issue.

I agree also that getting an activity is beneficial. No least because confidence building is vital.

Going for a walk however is not an easy option for many people on the spectrum, and going to university etc., is demonstrated on this furum as a very mixed experience. The trouble with autism, surely, is spending too much time on hobbies, to the exclusion of all else.

One of the problems with having autism is not everybody has rigid thinking. Not everything has to relate things back to autism. Autism can be different for women to men, so not everybody has logical thinking and some women can be emotionally bullied i.e. made to look stupid/belittled by other responses. Not everybody has Autism/Aspergers the same and some people have inattention add/anxiety add/dyslexia and we do the best we can. so not every reply people get will be the same. Somebody told me once that sometimes we can do all the talking in the world, but sometimes we need to stop talking and get practical to our problems, i.e. go for a walk, take up a hobby, go to uni e.t.c

I pointed out, in my last but one paragraph, that autism was a factor in perception of pain, and in responses to pain medications.

I was "a bit surprised THEREFORE", that the autism factor had not figured in the other responses, which is after all what usually happens.

Interpretation of language is also a fundamental problem in autism. I keep trying to assert that it is mainly down to lack of "emoticons" ie supporting body language, but everyone just seems to demonstrate that we have a basic language problem.

Hi Longman. Thank you for drawing my attention to the fact that my reply was  inadequate. My intention was to be helpful, but as they say, "the road to hell is paved with good intentions".  

I often ask my my friends to tell me if I am tactless or insensitive and listen to what they have to say. Feedback is important to me.

Hi outraged. Appologies if I appeared insensitive to your suffering. I was most concerned by the first sentence about fear of waiting rooms and medical facilities and self treatment. I thought the pain aspect was already covered by the previous comment.

I have experienced the severe pain of absesses, on more than one occasion. It would be irresponsible of me to mention what I did to cope with the pain, on this site.

I will add, that when I have dental treatment, the local anasthetic only partially works. It is very slow acting and I frequently need top up injections. The numbing usually takes full effect after I get home.  My dentist is usually aware that he is hurting me because I flinch when he hits a sore spot. He regularly appologises for hurting me before I leave. Lovely chap. My son has this problem also. He has found a sympathetic dentist, who dripped the anathsetic into the tooth during root canal treatment. Most dentists appear unaware that the injections don't always take effect straight away. I hope this does not put you off further, but I think that a small amount of pain during treatment, is better than the severe pain of neglect.

umm....other responses?! i totally sympathised with his agony and stated i have had excruciating pain and i was seriously ill and crying in agony with it

I lost a lot of teeth through abcesses, often after air travel with work before Christmas - it related to sinus problems. So this became a common occurrence - being stuck in the situation with no dentists open until after the holiday.

Yes there are on call services but it is a postcode lottery. Where I was living at the time the services were a total joke. On one occasion I took a taxi to the other side of town to an emergency dentist who just anaesthetised me (not very well) and took out three teeth - the tooth with the abcess, and the ones either side. He was truly horrible to me and mocked my distress. My regular dentist called his actions barbaric and unnecessary. Apparently the emergency dentist that night was well known for his attitude problem.

I too suffered on these occasions like outraged described. Nothing seemed to address the pain. I just spent days (and nights) in constant agony with no relief.

I think the other respondents are forgetting something - autism and sensory perception - hyper versus hypo sensitivity etc. Toothache might well be unduly severe for some people on the spectrum. Responses to pain medication vary for people with autism.

I am a bit surprised therefore by some of the other responses.....

Ive had the corrective work done, and do not intend to suffer dental issues again; Im taking all the usual oral-hygene steps and then some.

When I, later, saw a dentist, they proscribed Dicloflex (a much more powerful NonSteroidalAntiInflammatoryDrug) without prompting based on the condition of the tooth. If this perscription was clinically necessary (which it was) then why was A+E not able to make that assesment based on my description of the pain?

NB Ive since had a molar and its adjacent pre-molar removed and currently have drysocket. I no longer call this degree of discomfort "pain" so radically my definition of the word has been changed by this experience.