what are the downsides of a diagnosis?
what are the downsides of a diagnosis?
im pretty sure im autistic, or at least neurodivergent in some way. i think getting tested would give me some peace of mind and validation, but it's not extreme to where i would need extra help. so i dont really need to be diagnosed if itll just make my life harder. i heard that if diagnosed, you have to take your driving test every year which sounds like such a hassle. are there any other downsides of a diagnosis i should know about? specifically for the us / california. getting a diagnosis would feel validating but maybe its not worth pursuing for me.
Immigration- Some countries will deny you the ability to immigrate if you are diagnosed at autistic.
Courts- If you have to deal with the legal system, there is the potential for a diagnosis to be used against you.
Police- Police are notoriously ableist, and if they know you're autistic, it could put you in more danger than you'd be in otherwise.
Infantilization- The general public is very poorly informed about autism. Many people in the general public think of autistic people as being severely cognitively disabled. Even many people in medical professions, who would have access to your diagnosis information through your medical records, are very poorly informed and might treat you like a liar or as though you are incapable of making your own decisions.
Workplace discrimination- While you would not need to disclose that you are autistic at work, if your workplace found out, they could use that information to discriminate against you. Yes, it's illegal and unethical, but workplaces do illegal and unethical things all the time. Also, it's possible for workplaces to find legal ways to discriminate against people, and if they know about your diagnosis, they could try to discriminate against you for that. Also, if potential workplaces find out about your diagnosis through other means, like social media, they could use that information to decide not to hire you. Yes, that's illegal, but it's very difficult to prove.
34Even many people in medical professions, who would have access to your diagnosis information through your medical records
This is not guaranteed. OP needs to check how their country stores and discloses medical data.
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To my knowledge there really aren't any downsides to a diagnosis, as a matter of fact you may even have new legal protections under the Americans with Disabilities Act, or ADA: https://autismsociety.org/wp-content/uploads/2021/11/ADA-Fact-Sheet-1-1.pdf
You also have a right to not disclose your diagnosis per HIPAA, so long as you wouldn't need an accomodation.
24Immigrating to other countries can be much more difficult. Lots of countries will put you under a lot more scrutiny if you have any kind of official diagnosis, because it makes you seem less desirable when compared to another equally qualified applicant who isn’t diagnosed.
21How do the other countries find out about the diagnosis? Are you expected to self-disclose?
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I wouldn't even know where to get a diagnosis as an adult. All the resources in my area seem offer evaluations to children only.
16I just got assessed and am going through a divorce with a kid involved, AMA. Jk, uhhh I'm afraid my soon ex-wife will use it against me to get custody at some point.
13Literally also going through a divorce with a kid and just got diagnosed. Pretty sure my wife is committed to 50:50 custody though. Still: solidarity.
3✊🏼✊🏼
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It's expensive.
I've also seen a few people start to mold their personalities after a diagnosis. They'll start exhibiting stereotypical behaviors that they didn't exhibit before the diagnosis. It might be that they stopped masking, but it's something to be aware of.
12I’ve seen this referred to as “skill regression” and can definitely be part of the process of unmasking. It’s like your whole life you’ve been told that you shouldn’t be bothered by the things that bother you and shouldn’t struggle with the things you struggle with. This makes you learn to not trust your own experience or express your needs. You start to assume that what you’re experiencing is what everyone experiences and you just shove all of your discomfort and meltdowns and shutdowns and exhaustion down as best you can, sometimes to the point where you stop being able to notice things like discomfort in your body. When you finally realize what’s going on and start exploring your own experience, it can be overwhelming. You notice all of the small things that affect you and drain you and that are hard for you. It’s really hard to navigate this process, especially if you don’t have access to a therapist to work through these things with. I think this is much, much more common than people just artificially making up autistic traits they have once they get diagnosed or otherwise realize they have ASD.
35Yeah I figure there's more going on here so I didn't speculate as to the cause.
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Can confirm. Got a 20yo roommate, who before the diagnosis was striving to be better, was trying to learn and figure stuff out. After diagnosis turned into total pain in the ass, blaming everything on the disability, stopped cleaning after himself, kinda gave up on himself in general. I agree, it might be because he stopped masking but it was just sad to see such a change for worse, he took it the wrong way.
OP though sounds like a conscious person, weighing their options, asking for opinion from others. Good job OP!
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Getting a diagnosis can be expensive
8i would say the scrutiny of it -- i've never been diagnosed but i'm so weird in ways that match with the memes -- having to describe yourself in that sort of super pathologic language and formally 'label' it feels weird imo
7I felt the same a year ago when I realized I might share some traits described by autistic people. It was first a relief, a convenient explanation to most things I struggle with, and some “strange” traits of mine.
However, a diagnosis is very difficult to get in my country (years of waiting, not even sure I would get it one day). I decided not to do it because I don’t feel it would change anything beyond the validation. I don’t consider myself as truly autistic since I have no diagnosis, but I keep it in mind when I encounter difficulties, and it helped me a few times.
6I don't know about where you are, but here in australia, you don't need to take your driving test every year.
As for downsides, a dx precludes you from serving in the military, if that was what you were wanting to do.
A dx helped me a lot. I got answers for why i am the way i am. It also allowed me some room to move, in terms of allowing myself accomodations that other people don't need. Before i was dx'd i was really hard on myself. But now I've accepted that I am different and as such, i struggle with things that other people do not.
It should be noted i was diagnosed when i was 32, so quite late.
2There are no real downsides to an official diagnosis. Actually, there are more upsides like getting job protections and even assistance through vocational rehabilitation and other community organizations.
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