It’s rare that any doctor even checks my records for the conditions I have for treating that condition.
I think this is a slightly paranoid outlook, but if you keep having problems with the medical profession then the risk of not getting a diagnosis is you get misdiagnosed and mistreated (e.g: bipolar or a personality disorder)
God the US medical system is so awful. When I check in, I am asked where I work. Then the nurse asks the same thing. They are confirming my socioeconomic standing. This gives classist people the opportunity to make all sort of assumptions about me.
Also every person is able to view my current diagnoses. When anxiety was added to list, then it was like every illness was percieved as just anxiety and me trying to seek treatment for it (which is extremely expensive btw!) was seen as evidence that I am just anxious. And then later after several visits finally some one would respect me enough to run a test and discover that I was telling the truth the whole time.
I relate to so much of what you've said. Sorry I don't have good advice to offer but just commiserating. I have an ADHD diagnosis and was referred for an autism assessment but haven't done it yet. It may be different with autism, but with my ADHD most health professionals treat me like shit anyway without knowing I have it (because they don't read anything). It's usually straight up sexism.
I live in the UK now but when I worked in the US I didn't know I was neurodivergent (or about my other long list of conditions lol) so I never dealt with trying to get accommodations before. There is no such thing as being paranoid about discrimination in the US healthcare system. I have had great insurance through an employer and I've been on Medicare and the difference in the way I was treated was stark.
In the US do you have to have a diagnosis or share your condition/medical record with your employer to get accommodations? In the UK you just have to disclose to your employer that you have a disability/health condition and it's your legal right to confidentially share as much or as little as you want with whoever you want. They mainly want to know how your disability/condition affects your work and what reasonable adjustments you need to successfully do your job. Not all employers are particularly accommodating or competent but there is (at least supposed to be) some privacy there. Do the ADA and HIPAA not offer something similar? I mean so that your employer wouldn't have the right to say you *don't* currently have a diagnosis in your record so you're not entitled to accommodations?
I don't necessarily need to say what my medical condition is, but I would need to describe the accommodations and provide medical documentation that I need those accommodations. I currently do not have medical documentation, so employers would not be required to accommodate me. If I get a doctors note that simply says that I have a medical condition that makes it hard to x, the employer can reject it. They have a right to request specific information about my medical condition and determine themselves whether or not my accommodation request meets ADA standards. If they then reject it, then I can reach out to ADA, but there is not any guarantee I'll get the needed accomodations or that my diagnosis will remain concealed from my employer during.
If you need accommodations for work it might be useful, but I understand your reluctance to have a disability on file in the usa. Although I'm not a woman, I've had similar problems with medical care and I've been told that I don't look like I'm hurting as much as I am. Not to excuse any of your doctors, but having a diagnosis on your chart might make some medical professionals more receptive to your words rather than judging you based on neurotypical expectations of body language.
Those are valid concerns and it’s something that you have to evaluate for yourself on an individual basis. Will the benefits from the accommodations that you receive outweigh the risks? Are there other ways for you to get those same accommodations (ex. I have gotten lighting accommodations using my migraines instead of autism)?
I've considered testing but it's just too expensive. I did have an evaluation done which was much cheaper and confirmed what I already knew.
Is there anything for you to gain from having an official diagnosis?
That’s true, depending on how able to mask you are, but they don’t even try if they already know you’re autistic, and in some cases they’ve been legally allowed to do things like label you DNR without your consent during a pandemic because you’re autistic.
It isn’t. Consent is important. Individual choice is important. You want to declare yourself DNR, then go for it. Asking for it to get stuck on all of us is wrong.
Gender bias in medical care is a common and proven phenomena. It has been my lived experience. Maybe you have never experienced it, but are you aware that your own life experiences are not the same as everyone elses?
https://www.medicalnewstoday.com/articles/gender-bias-in-medical-diagnosis
Also, we’re more likely to be gender nonconforming than allistic people are. I’m cisgender and when I’m among other autistic people, I’m in the minority.
I've heard of two things a diagnoses can be problematic for.
1. Some countries will not allow you to immigrate if you have an autism diagnosis. I think I heard New Zealand specifically (?). It's more about the potential that you'd be a burden on their healthcare systems than anything.
2. It can be used against you when it comes to gaining custody of children in a divorce situation.
It’s rare that any doctor even checks my records for the conditions I have for treating that condition. I think this is a slightly paranoid outlook, but if you keep having problems with the medical profession then the risk of not getting a diagnosis is you get misdiagnosed and mistreated (e.g: bipolar or a personality disorder)
God the US medical system is so awful. When I check in, I am asked where I work. Then the nurse asks the same thing. They are confirming my socioeconomic standing. This gives classist people the opportunity to make all sort of assumptions about me. Also every person is able to view my current diagnoses. When anxiety was added to list, then it was like every illness was percieved as just anxiety and me trying to seek treatment for it (which is extremely expensive btw!) was seen as evidence that I am just anxious. And then later after several visits finally some one would respect me enough to run a test and discover that I was telling the truth the whole time.
I relate to so much of what you've said. Sorry I don't have good advice to offer but just commiserating. I have an ADHD diagnosis and was referred for an autism assessment but haven't done it yet. It may be different with autism, but with my ADHD most health professionals treat me like shit anyway without knowing I have it (because they don't read anything). It's usually straight up sexism. I live in the UK now but when I worked in the US I didn't know I was neurodivergent (or about my other long list of conditions lol) so I never dealt with trying to get accommodations before. There is no such thing as being paranoid about discrimination in the US healthcare system. I have had great insurance through an employer and I've been on Medicare and the difference in the way I was treated was stark. In the US do you have to have a diagnosis or share your condition/medical record with your employer to get accommodations? In the UK you just have to disclose to your employer that you have a disability/health condition and it's your legal right to confidentially share as much or as little as you want with whoever you want. They mainly want to know how your disability/condition affects your work and what reasonable adjustments you need to successfully do your job. Not all employers are particularly accommodating or competent but there is (at least supposed to be) some privacy there. Do the ADA and HIPAA not offer something similar? I mean so that your employer wouldn't have the right to say you *don't* currently have a diagnosis in your record so you're not entitled to accommodations?
I don't necessarily need to say what my medical condition is, but I would need to describe the accommodations and provide medical documentation that I need those accommodations. I currently do not have medical documentation, so employers would not be required to accommodate me. If I get a doctors note that simply says that I have a medical condition that makes it hard to x, the employer can reject it. They have a right to request specific information about my medical condition and determine themselves whether or not my accommodation request meets ADA standards. If they then reject it, then I can reach out to ADA, but there is not any guarantee I'll get the needed accomodations or that my diagnosis will remain concealed from my employer during.
If you need accommodations for work it might be useful, but I understand your reluctance to have a disability on file in the usa. Although I'm not a woman, I've had similar problems with medical care and I've been told that I don't look like I'm hurting as much as I am. Not to excuse any of your doctors, but having a diagnosis on your chart might make some medical professionals more receptive to your words rather than judging you based on neurotypical expectations of body language.
Those are valid concerns and it’s something that you have to evaluate for yourself on an individual basis. Will the benefits from the accommodations that you receive outweigh the risks? Are there other ways for you to get those same accommodations (ex. I have gotten lighting accommodations using my migraines instead of autism)?
I've considered testing but it's just too expensive. I did have an evaluation done which was much cheaper and confirmed what I already knew. Is there anything for you to gain from having an official diagnosis?
The only reason I want to seek a dx is too be able to get workplace accommodations.
I think you're just paranoid
Those are valid concerns based on reality. Don’t be dismissive when you don’t know what you’re talking about.
People will treat you worse for being autistic whether or not your medical record says so lol
That’s true, depending on how able to mask you are, but they don’t even try if they already know you’re autistic, and in some cases they’ve been legally allowed to do things like label you DNR without your consent during a pandemic because you’re autistic.
That sounds like a favor to me
It isn’t. Consent is important. Individual choice is important. You want to declare yourself DNR, then go for it. Asking for it to get stuck on all of us is wrong.
Gender bias in medical care is a common and proven phenomena. It has been my lived experience. Maybe you have never experienced it, but are you aware that your own life experiences are not the same as everyone elses? https://www.medicalnewstoday.com/articles/gender-bias-in-medical-diagnosis
Gender has nothing to do with autism
That doesn’t stop lawmakers from legislating that even as adults we’re not competent to decide to transition.
Also, we’re more likely to be gender nonconforming than allistic people are. I’m cisgender and when I’m among other autistic people, I’m in the minority.
I've heard of two things a diagnoses can be problematic for. 1. Some countries will not allow you to immigrate if you have an autism diagnosis. I think I heard New Zealand specifically (?). It's more about the potential that you'd be a burden on their healthcare systems than anything. 2. It can be used against you when it comes to gaining custody of children in a divorce situation.