Before I begin it’s an important disclaimer that I am NOT a medical professional,and although I help boards of a social and medical nature ,this is a ponder and insight sharing of my professional support and advocacy life and my personal insights from a personal perspective...
When we see higher risk lists ,We often see Leraning Disability as higher risk . Many Autistic people have no LD but also many also have LD . Many have great abilities /jobs and areas of LD , the term LD isn’t black and white for Autistic people as our profiles are “Spikey “ ...
In both personal and professional experience I have seen a stark pattern of the hurdles for Autistic people to safeguard their own health , not through lack of intelligence but through lack of understanding their brain and therefore body works and reacts differently to others ...
...and that lack of understanding isn’t just our own self awareness of how being Autistic can /could affect us ,but also the understanding/training /awareness of Autism in those who may care for our health ...
I am going to share some anon cases studies that have happened to be repeated to me ,by many families ,many times over the last decade or so which has health implications, The idea behind this is not to cause moral panic or unwarranted fear but to help create understanding...
...if you are however feeling particularly anxious at this time it may be better to read when feeling less so ,nothing here is “new news “ it’s what the Autistic community have known and experienced life long ,it’s a case of highlighting how this could effect us now ...
Many #Autistic people struggle with regulating their body temperature, either because they are hypo or hyper sensitive to temperature (wearing shorts in snow or hoody in summer ?) but this isn’t just sensory differences ,some Autistic people have reported different baselines ..
Ive heard of (many ) Autistic families (mine included) taking their child to the GP as “somethings not right “ to be told their child had a raging ,long unnoticed ear /throat /mouth /kidney infection but displayed no fever - none leaving GP puzzled ...
And different baselines to pain too ,Many experience pain differently. Again being hyper or hypo to pain . This profile being spikey , for eg a woman could cry having eyebrows plucked but not understand she has appendicitis until it’s almost burst (thats me by the way ) ...
..the appendix one is incredibly common, so is woman not knowing they are pregnant until late, this is due to differences with intereoception (likely misspelt , I’m a Lay person here guys !) basically we have differences in understanding/ processing what is happening inside ...
Intereoception can effect knowing if we are
Hungry
Thirsty
In pain
Full
Need to use the loo
Changes inside us
And more ...
Hungry
Thirsty
In pain
Full
Need to use the loo
Changes inside us
And more ...
When we use the bathroom we wash our hands after ,if we aren’t using the bathroom as often due to not feeling we need to go ,we are washing hands less often ,we may need alarms on our phone /prompts at this time to wash hands regularly...
...If we rarely feel thirst , yet are trying to stay healthy and hydrated (particularly at this time ) we again may need alarms on phones or prompts to drink water at regular intervals...
If we have a history of struggling to report pain (all types of pain - keep spikey profile in mind ) the standard pain scale used isn’t going to communicate our experience, we may need to have loved ones or ourselves look for other signs ..
...They could be behavioural or could be emotional, you may need to think of your /your loved ones reactions when last injured or unwell and look for the same patterns of behaviour to recognise pain ...
..Many families (mine included !) have reported their child breaking a limb and not crying but going non verbal hiding away or stimming more , each individual will have their own pain response pattern ...
It’s worth remembering too that being Autistic often means your “baseline “ of pain is different. If everyday school lighting hurts like a migraine ,how bad would a migraine feel ? By comparison? ...
Part of our very diagnosis of Autism is our differences in social imagination, this isn’t like traditional imagination many Autistics are great poets ,writers ,inventors etc , it’s about understanding what may happen next in a social context ...
So even if you have a fever , feel the issues inside of you , recognise the pain and haven’t gone non verbal would you seek help ? Would you report this timely ? Maybe not ...
..because to report it you have to understand that asking for help has an advantageous consequence, you need good social imagination for this ...
We need to either explain (often ) to those we care for how “help” works , how others can help unless they communicate what they need from us and and as Autistic adults remind ourselves daily to ask for help also ...
I hope in some small ,throughly well intended way this helps someone out there ❤️🧼 ,stay well , off to wash my hands now -Carly xx 🏡
If we use the body temperature as a singular indicator of illness are we at risk of leaving a Autistic persons treatment delayed ? Do we need to look at more indications? ( Just a ponder )
@threadreaderapp UNROLL
