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Medical response to an autistic persons pain

outraged

I have recently been suffering dental problems. Because I have difficulty with waiting rooms and medical facilities in general, I was attempting self treatment untill the pain exceeded my pain tolerance threshold. I took every pain pill I could find to no effect. This happened in the early hours of the morning shortly before the new year. I was alternating between running up and down my flat punching walls and siting on the floor crying. I walked five miles across the city to A+E to seek help. Before I could enter the hospital, I struggled for maybe twenty minutes to achieve a calm demeanour. I waited there for three hours and all the help I recieved was a Ibuprofen which I had already taken to a near overdose and found ineffective. I believe I had a genuine clinical need for serious pain relief, but was unable to persuade the staff to take the severity of the pain seriously or to elict empathy for said pain and as a result recieved profoundly insufficient treatment.

Has anyone else had a similar experience?

Are there in existence or planning guidelines for accurately assessing an Autistic persons pain?

Parents

  • 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.

Reply

  • 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.

Children
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