Ways to Self-advocate in healthcare

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ProfessorWorm

Active member
I’m currently attempting to arrange my own care for a newly diagnosed genetic disorder, and finding many otherwise very kind and qualified doctors/nurse practitioners are unable to accept I’m both autistic and capable of understanding my own body and it’s needs. They’re mostly been amenable to gentle correction of language, but the attitudes behind them have been harder to change. I was wondering if anyone had any suggestions for how to convince them to let go of their more hurtful beliefs, or at least speak to me rather than my emotional support NT without requiring multiple redirections.
 
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aadap

New member
my local Autism 'support' NT suggested ''health passport''

havn received ''health passport'' at the time of writing however potentially helpful in regard to misunderstandings I think,
-and the (for me) stress related to verbalising personal stuff for the medical professional [busy] environment, but yeah my experiences to date appear not dissimilar, sorry to hear of your stuggle ProfessorWorm

; 1, or2x doctors known to me appear misunderstand a lot of my physical challenges to date so I can relate
I'm sorry to say,

-making progress regarding understanding (but) appears to require a lot of "spoons"


Autism ''health passport"
[similar stuff to the 'Australian link' Margot posted ..hope it helps]

https://www.autism.org.uk/advice-and-guidance/topics/physical-health/my-health-passport


In person support appears dream like at the time of writing, but, others [adult autism services] repeatedly speak of 'it' ..

I believe (in-person support) probably beneficial I think, but 'it' seems challenging discovery for adults to date in my experiences