If someone asked me how they can accommodate my needs I'd struggle to know, but your answers are spot on. And I would cope much better if any needs WERE accommodated. So maybe I might try to run myself through an imaginary appointment and check in with what might help. Maybe?
Maybe we should workshop this?! At Wellington Hospital they had a passport thing for parents to fill in that explains all the supports a disabled/autistic patient may need to cope.
What would help me cope is them having a system where I don’t have to pour out my heart at every appointment rehashing everything from my first ectopic pregnancy and all the trauma that has followed until the present day.
Actually. Perhaps I’m taking their questions too literally and oversharing? Argh. It’s a minefield!
Thanks for sharing your experiences. So important that medical professionals get to hear feedback like this. As you say, a few simple tweaks can make all the difference.
Thank you, I just thought I can write a piece to doctors to explain what our needs are as autistic patients and how best, for me personally, to meet our communication needs and reasonable accommodations. Thanks for prompting this thought 😃
Ugh I feel this, even without living kids to complicate matters. I'm so sorry you have to deal with both the garbage of the appointment itself and then all the downstream fallout that is so BLOODY UNNECESSARY (sorry for yelling). Thank you for breaking down how much is contained in "sorry I'm late" as well, mouth words don't come close to conveying all the baggage they are tied to in the best of circumstances.
It takes so little for a provider to accommodate my needs - written communication if the environment is noisy, a less busy time/space when scheduling, time to process and respond, warning before physical contact, accounting for the fact that I'm going to be close to tachycardia from overstimulation and the condition you're seeing me in at the office is not necessarily reflective of my quotidian condition outside of that environment...
I love that you point out we are essentially paying customers (and not getting our money's worth in my opinion) - it's also very frustrating when you can't even find out the price of the visit or procedure ahead of time! (And for providers not to know what the insurance has decided the allowable-charge-of-the-month is? Ridiculous! Nobody can reasonably operate a business in those conditions!) I certainly wouldn't go back to any business that treated me like that if I had a choice. And that's the catch - there isn't a choice, at least in my area or for some specialties.
Another PS... LOL... As I read further and further my rocking increased. Your experiences and explanations are uncomfortable but also validating and educational. As you know, I'm through the extremely difficult phase of taking ALL my children with me to appointments, but we still have much navigation and organisation to perform with each trip out.
It’s like an operation trying to get to all these things, sit through them and recover afterwards. The least they can do is make it easy for us. They just need to do their job as usual and we take care of the rest!
This was such an interesting read.. thank you for sharing so honestly what life is like for you ❤️ I'm sorry you had to go through this awful experience 😔 Some people are such dicks! 🙄
Thanks, yes, it was remarkably unremarkably awful. Standard stuff and nobody in the waiting room blinked an eye! Actually, I might take my referral elsewhere 🤔
If someone asked me how they can accommodate my needs I'd struggle to know, but your answers are spot on. And I would cope much better if any needs WERE accommodated. So maybe I might try to run myself through an imaginary appointment and check in with what might help. Maybe?
Maybe we should workshop this?! At Wellington Hospital they had a passport thing for parents to fill in that explains all the supports a disabled/autistic patient may need to cope.
What would help me cope is them having a system where I don’t have to pour out my heart at every appointment rehashing everything from my first ectopic pregnancy and all the trauma that has followed until the present day.
Actually. Perhaps I’m taking their questions too literally and oversharing? Argh. It’s a minefield!
The manager of your doctors surgery needs to read this piece, and have all their staff read it x
Thanks, I’m thinking the same - but only if I can take my referral elsewhere 😆
Thanks for sharing your experiences. So important that medical professionals get to hear feedback like this. As you say, a few simple tweaks can make all the difference.
Thank you, I just thought I can write a piece to doctors to explain what our needs are as autistic patients and how best, for me personally, to meet our communication needs and reasonable accommodations. Thanks for prompting this thought 😃
Yes! Good idea. An open letter to the medical professions perhaps?
I felt this so much. ❤️
Ugh I feel this, even without living kids to complicate matters. I'm so sorry you have to deal with both the garbage of the appointment itself and then all the downstream fallout that is so BLOODY UNNECESSARY (sorry for yelling). Thank you for breaking down how much is contained in "sorry I'm late" as well, mouth words don't come close to conveying all the baggage they are tied to in the best of circumstances.
It takes so little for a provider to accommodate my needs - written communication if the environment is noisy, a less busy time/space when scheduling, time to process and respond, warning before physical contact, accounting for the fact that I'm going to be close to tachycardia from overstimulation and the condition you're seeing me in at the office is not necessarily reflective of my quotidian condition outside of that environment...
I love that you point out we are essentially paying customers (and not getting our money's worth in my opinion) - it's also very frustrating when you can't even find out the price of the visit or procedure ahead of time! (And for providers not to know what the insurance has decided the allowable-charge-of-the-month is? Ridiculous! Nobody can reasonably operate a business in those conditions!) I certainly wouldn't go back to any business that treated me like that if I had a choice. And that's the catch - there isn't a choice, at least in my area or for some specialties.
Another PS... LOL... As I read further and further my rocking increased. Your experiences and explanations are uncomfortable but also validating and educational. As you know, I'm through the extremely difficult phase of taking ALL my children with me to appointments, but we still have much navigation and organisation to perform with each trip out.
It’s like an operation trying to get to all these things, sit through them and recover afterwards. The least they can do is make it easy for us. They just need to do their job as usual and we take care of the rest!
PS I call them 'Shouty Youtubers' 😝🤣
Oh they are so shouty, beyond belief!
Well, that receptionist was a job worth as we say here. What harm could two completely immersed boys be in your consultation?
Thanks, Tamsin! They wouldn’t have even looked up 😭 😆
This was such an interesting read.. thank you for sharing so honestly what life is like for you ❤️ I'm sorry you had to go through this awful experience 😔 Some people are such dicks! 🙄
Thanks, Eva 💕
Excellent article. That receptionist is gross. Does reinforcing a bullshit policy and being a dick bring her joy? Sheesh.
Update: I’ve rebooked this appointment at a different clinic that happens to be open this Saturday! Thank you for all your supportive comments 💕
Thanks, yes, it was remarkably unremarkably awful. Standard stuff and nobody in the waiting room blinked an eye! Actually, I might take my referral elsewhere 🤔
Thanks, yes I agree with everything you’ve said. There was no point in me kicking off in reception, even if I weren’t approaching mutism 😆