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Autistic responses. Doctors.
I've been watching some popular TV shows from time to time. One was a medical show, with various medical specialists explaining how they investigate a set of symptoms. Many times, we were told that they look at the patient's responses & expressions/
I've been watching some popular TV shows from time to time. One was a medical show, with various medical specialists explaining how they investigate a set of symptoms. Many times, we were told that they look at the patient's responses & expressions/
If a patient doesn't respond in the 'right' way, they become fairly sure that they're not really in pain, they said (paraphrased). A sign of a psychological disturbance rather than there being a physical problem.
Autistic people have too many catastrophic health outcomes/
Autistic people have too many catastrophic health outcomes/
Our average life expectancy is lower because of these. We have good research on it. Obviously a good number of autistic people live a long time, being clear. But far too many die young through preventable causes.
In some cases, because they weren't believed/
In some cases, because they weren't believed/
There's a dilemma.
Do people disclose that they're autistic, and risk someone assuming that they are a collection of 'bad behaviours', thanks to myths? Or being utterly disbelieved if they don't 'perform autism' for the doc?
Or do they hide it, and get misread?/
Do people disclose that they're autistic, and risk someone assuming that they are a collection of 'bad behaviours', thanks to myths? Or being utterly disbelieved if they don't 'perform autism' for the doc?
Or do they hide it, and get misread?/
...that subtle lag in responses, that subtle difference in eye contact messages etc that is just enough for a Doc to end up making a wrong conclusion perhaps. A difference in pain responses that doesn't match what it says in the diagnostic textbook & the Doc's experience/
What if someone struggles to even get to the appointment, because of the sensory hell? Or the endless randomness and obstacles for those unable to use phones etc?
What if they are in a care setting and appear 'angry' but in fact are in terrible pain?
So, what can we do, here?
What if they are in a care setting and appear 'angry' but in fact are in terrible pain?
So, what can we do, here?
We can get that good training on autism, from teams led or co-led by autistic individuals who can give an authentic real-life experience & deep knowledge.
We can think about how to make appointments accessible.
Accept text, letter, email, etc. Not just phone/
We can think about how to make appointments accessible.
Accept text, letter, email, etc. Not just phone/
We can ask autistic teams for a view on how to adapt buildings to make them more autism-accessible, in the same way we would for wheelchair access.
We can give appointment at a doable time, and keep on time for that person if it's their only way to access it/
We can give appointment at a doable time, and keep on time for that person if it's their only way to access it/
We can be really clear about what's going to happen.
We can be aware of our own responses when faced with a different social communication system. Realising it will 'read' differently. So rely on what's said/written. Ask clear questions & have time to wait for responses/
We can be aware of our own responses when faced with a different social communication system. Realising it will 'read' differently. So rely on what's said/written. Ask clear questions & have time to wait for responses/
We can know that there's no way autistic people are going to come to a medical appointment to waste someone's time. If they're there, by heck this is serious. Start with that assumption. Investigate.
Be aware many of us have very different pain responses. Don't assume/
Be aware many of us have very different pain responses. Don't assume/
I have autistic relatives who are regularly given vague pieces of paper to 'just ring this number' and wait vague lengths of time for a vague specialist appointment with a random stranger who will do unknown things.
They
Can't
Do
It
And that worries me so much/
They
Can't
Do
It
And that worries me so much/
Be an ally.
Realise when you're asking the impossible.
Be that autistic patient's champion.
Find out that detail.
Get the appointment for them if you can. Get the team at the other end to take autism seriously too.
Save that life.
It really is that serious.
Thank you for reading
Realise when you're asking the impossible.
Be that autistic patient's champion.
Find out that detail.
Get the appointment for them if you can. Get the team at the other end to take autism seriously too.
Save that life.
It really is that serious.
Thank you for reading
PS - want some real life examples?
OK.
(with permission of son...)
He was a rugby player for years.
Foot injury.
No pain. Bruising.
Physio - fine.
Doc - fine.
Played for many more weeks. Bit of pain.
X ray - oh, broken foot - heck!
Pain response - about nil.
Next...
OK.
(with permission of son...)
He was a rugby player for years.
Foot injury.
No pain. Bruising.
Physio - fine.
Doc - fine.
Played for many more weeks. Bit of pain.
X ray - oh, broken foot - heck!
Pain response - about nil.
Next...
Me: Bit of pain.
Saw doc 1. I wore my Cheerful Face and asked the doc how they are, as I do.
Got dismissed as having minor IBS flare up.
Bit more pain next day,
Given doc 2 that day.
Examined.
Heck - Ambulance.
Ectopic pregnancy.
Nearly lost my life.
Know about autism.
Saw doc 1. I wore my Cheerful Face and asked the doc how they are, as I do.
Got dismissed as having minor IBS flare up.
Bit more pain next day,
Given doc 2 that day.
Examined.
Heck - Ambulance.
Ectopic pregnancy.
Nearly lost my life.
Know about autism.
