Medical gaslighting?

Sorry to read this

If someone says they are in pain then from a whole load of practical and pragmatic reasons one has to take their word for it.

Not sure what the person means by the pain being "sensory" either

It might be that they are implying that they do not consider it to be of physical origin but that's not clear from what you write.

It might be possible after making a subjective and objective assessment that for one skilled in observation might be able to detect whether the physical demonstration of the pain comes and goes when the person is being observed or not... But then who's to say that the person notices the pain more when conscious of being observed...

Anyway before concluding that the pain is "psychosomatic" (e.g. of no physical cause - possibly in conjunction with autism in some way) it's crucial to rule out any physical causes.

The leg pain, numbness and tingling would be reasonably easy to map "dermatomall" and "myotomall" patterns if nerves are being squished somewhere along the way e.g. as TheCatWoman suggests from a back problem (for example what is commonly called "sciatica") for someone who knows what they are doing  Before the specialist starts labeling the cause as autism there's a whole load of other stuff to consider - including ruling out "red flags" e.g. any other symptoms that might go along with the presentation which would require further investigation.  I wonder if the health care professional involved did this and/or whether they talked thro' having done so before reaching the conclusion they have?

if you don't think that a thorough assessment was made for what ever reason then asking for a second opinion (this would be your daughter doing this if she is an adult in medical terms) seems to be a sensible thing to do.

Anyway, even if it is eventually concluded that the pain etc is of a "non physical" origin that still leaves your child reporting pain and behaving in a fashion that is less than healthy and they need help with that still... So I wonder then if that is the ultimate conclusion of clinical assessment where they recommend your daughter is supported next?

Best Wishes to you and yours.

I don't think you're being gaslit; it's possible your daughter has a high sensitivity to pain. Speaking from personal experience, this can be a nightmare when it comes to trying to accurately describe your problems to a doctor; sensations which others brush off take far more out of me. I can't even stand exercise as, to my body, there's no difference between regular "exercise agony" and just plain agony.

There does need to be more medical staff specially trained to work with autistic people due to some having a higher or lower pain sensitivity than most people. I think, in the meantime, do what others have suggested and get as much data on your daughter's pain as possible, then pass that info on to the doctors to help give them more context.

I doubt it's just autism, but autism is linked to other health issues, even autoimmune disorders. I'd suggest like others you get a second opinion, or a third..... etc. I've had this happen to me countless times because I don't say the right words about pain or can't explain it. I find it helps to tell the doctor what you want (which is difficult since you are not a doctor) ... he should be doing a neuro exam to rule out nerve problems and asking about diet. Did the blood test include vitamin D, iron and electrolytes? autistic people often struggle with having a good diet which can cause odd symptoms... might be worth asking about that. 

I empathise with you, I'm having similar issues with the NHS now trying to get to the bottom of symptoms and having to advocate for myself when I don't know what I'm doing. Very confusing. 

Prayers for you

Had the same with my son for years, dismissed over and over. Only at an appointment for something unrelated they found out he had autonomic problems with blood pressure regulation. Then still had to push for referral to cardiac/POTS/syncope clinic. Pots/syncope can cause leg pain due to pooling of blood in legs. Can be checked at home, some tutorials online how to do but basically checking for changes in blood pressure/heart rate from laying to standing. I felt he'd been really let down. Would probably have had better support in school if known. Unfortunately happens a lot with invisible disabilities. If you feel something not right, don't be dismissed. Tell them exactly what you want and stick to your guns. Good luck

Deepthought said:

technically speaking, autism as a condition is not the cause of particular symptoms

I agree with this. With autism there are often sensory issues for those who are autistic and this includes those who have low or high sensitivity to pain, so it is quite possibe that a level of pain that may be mildly annoying for you could be excrutiating for your daughter. The pain is not caused by the autism but it is felt more intensely because of it in some cases.

There is an interesting article on this subject here: https://neurosciencenews.com/asd-pain-22394/

If it were me in your shoes I would get advice about establishing a pain index with your daughter so she can more accurately rate it from 1-10 as to how severe it is. There is an article on this here: https://www.verywellhealth.com/pain-scales-assessment-tools-4020329  Note that this should be done with the help of medical professionals as I'm sure you know better than to take the direct advice of a random from the internet.

The tingling sensations, numbness and collapse are more concerning and could have a range of other causes. If they are recurring then if it were me, I would ask for a cardiologist referral to get a professional to check it out. Again ask for medical advice from professionals before doing any of this.

Before doing this I would get as much data as you can on when the symptoms happen (eg after exercise, what was she wearing, was she on any medication, what had she eaten / drunk in the day beforehand, what environment was she in etc - this will bring any common factors to light to help narrow down possible external causes and give the cardiologist something to work with.

Also gather any details of exercise activity in the run up to these events - encourage your daughter to keep a detailed journal for a while to see if this helps.

You are being a good parent by not allowing the doc to fob you off without proper consideration but they will need this info on the context to be able to do more than wildly guess at the moment.

Good luck.

[edited to avoid the impression of offering medical advice]

I'd seek a second opinion, the problem with these sort of pain conditions is that they often have no direct diagnosis and are a diagnosis of exclusion, when you've tested for eveything else the only things left are things that theres no direct test for.

Could she have a back problem?

Mother.of.demons said:

Is chronic pain caused by autism??

Well, technically speaking, autism as a condition is not the cause of particular symptoms, for if it were ~ all autistic people would suffer from them ~ rather than a larger percentile per capita and all that. Hence, as such, your daughters condition might more accurately be described as being a co-morbidity, involving whichever causation is in fact involved.

Mother.of.demons said:

At the end of the consultation he said he thought the pain was sensory (isn't all pain sensory??) And a result of her autism. I was too taken aback to question or ask about management. Was this just abject gaslighting? Is it a thing?

No you have not been gaslit, as your GP was most likely referring to a range of conditions described as being Sensory Processing Disorders ~ which have a much higher incidence rate in autistic patients. 

Mother.of.demons said:

Im at a complete loss, dd already has zero faith in the medical profession after being gaslit for 8 years. I feel like a fraud insisting she should see a Dr only to be dismissed.

Please help.

The following article could well be of some use quite possibly:

The Unexpected Connection: Autism and Leg Pain