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On Self-Diagnosis (lemmy.dbzer0.com)
submitted 2 years ago by to c/autism@lemmy.world
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[–] 5 points 2 years ago (2 children)

I still don't understand why so many people are against self-diagnosis. Someone is suffering and trying to find help, a lot of people, especially minorities and women, can't find it professionally. What's wrong with those people looking for help themselves? Having a word for what is different with you helps finding this help.

I'm not talking about people claiming to be autistic and demanding attention and accomodations, that's a whole different story but trying to keep people from finding help themselves seems to be very wrong to me.

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  • [–] 1 point 2 years ago (2 children)

    Because a diagnosis can tell you what you are, it's not a supposition anymore, and you don't have to convince yourself as it becomes an objective truth. I used to think I was autistic, and while I wasn't that far, autism wasn't the right diagnosis and that new information allowed me to act on the right things. I live a much better life now than when I was relying on my self-diagnosis

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  • [–] 3 points 2 years ago (1 child)

    Yes, but you are answering on the experience that diagnostics are available to you, and what sounds like an assumption that this is universal.

    The biggest point of contention is people who want to be assessed properly, but can't get a professional to sniff their brains. They still are who they are and need help and support.

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  • [–] 2 points 2 years ago

    Of course, if it isn't available to people, my point falls apart completely and I was in an ideal situation that isn't as accessible to most people. (I live close to a mental health center specialized in autism)

    Still it helped me tremendously and I want to encourage people to seek a diagnosis.

    For people who don't/don't yet know, support groups like this one or ND friends are invaluable

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  • [–] -2 points 2 years ago (1 child)

    "I still don't understand why so many people are against liars"

    When you create an environment in which nothing has to be empirically proven then you attract liars. Liars will actively make things worse for people who are actually neurodivergent.

    It isn't that much of a stretch.

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  • [–] 3 points 2 years ago (1 child)

    It's not like you can prove that someone is autistic. It's not like there's a blood test, an x-ray, an MRI etc. that can be administered and the results be reproduced.

    It's diagnosed based on observed behavior and doesn't really take into account what life feels like for the individual. So getting diagnosed can be very difficult for people who can mask well and on the whole don't represent like a young boy. Those people can just go on and suffer further then in your opinion?

    I'm going to repeat myself, I'm not talking about people who demand accommodations and attention. I'm talking about people who look for ways to make their life livable. Those people are not liars, they are suffering and searching for help.

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  • [–] -2 points 2 years ago (1 child)

    searching for help

    No I'm not saying they should suffer, I'm saying they should actually seek help.

    Declaring you're neurodivergent and associating with other people who claim the same is delusion.

    Yes there are bad doctors. When you see a bad doctor you go to a different doctor. Otherwise all you're successfully doing is ensuring people treat you differently. Which, in my opinion, is actually the point.

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  • [–] 4 points 2 years ago (2 children)

    Well, I live in central Europe. In the second largest city in my country. There are two places that diagnose adult females. Waiting list says it takes 3-6 years to even start the process. I'm 42 and I'm not going to waste more years on fighting my brain until they finally have the time to diagnose me. And the most important thing is even when they do diagnose me there won't be any help that I don't have to find myself. It will simply be a note in my medical file.

    I already know I'm neurodiverse. I've been diagnosed with ADHD last year and the neurologist who diagnosed me strongly suspected autism as well. She's just not licensed to diagnose me officially.

    So I went to look for resources, for books to help me understand why I might be the way that I am. For communities who might understand my struggles.

    People in my life don't treat me differently because I don't demand accommodations. I might say that I need a short break to clear my mind, that I need some space or that I don't really feel like talking but that's it. I don't demand they do anything differently, I simply learned more about myself and know how to react differently to things. And that's what self diagnosis is about for me. Finding ways to make your life easier for yourself and not demanding others to accommodate you.

    There are certainly people out there who claim to be neurodivergent or to have this or that mental health issue and demand to be treated differently. That is a problem and I acknowledge that. Especially with the rise of TikTok videos etc. it's getting worse. There is a difference between those people and people who are just looking for ways to understand themselves better, finding ways to help themselves and taking the responsibility for doing that on themselves.

    Criticizing the first group of people is one thing but telling the latter one their experiences are not valid is very hurtful and doesn't help anyone.

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  • [–] 1 point 2 years ago (2 children)

    Thank you for your patience in responding to hurtful and dismissive ignorance. The "it works for me so you're lying!" attitude towards the medical system here is maddening.

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  • [–] 4 points 2 years ago (1 child)

    Well, I do kind of understand the position. I'm bothered by all those people saying "everyone is a little bit ADHD" as well.

    I just think there needs to be an open dialogue about self diagnosis and that there is a difference between people just claiming something and people who did their research and "soul searching", maybe even have professional opinions but no official diagnosis.

    In "Unmasking Autism" Devon Price called my generation the lost generation. Women and minorities who grew up during a time when autism was being diagnosed but the criteria were based on behavior of a Caucasian young boy. We were overlooked and had to fight for ourselves. When I went to elementary school Asperger's syndrome wasn't even in the DSM yet.

    Tbh, I'd much rather be neurotypical or at least have resources to actually help me. Unfortunately that's not an option so I'm doing the best I can.

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  • [–] 1 point 2 years ago (1 child)

    Tbh, I’d much rather be neurotypical or at least have resources to actually help me. Unfortunately that’s not an option so I’m doing the best I can.

    I'm so sorry you're wishing to be someone else. YI imagine you must experience significant difficulties to get there. Still, I'm happy you have the motivation to continue making changes in your life so you could be happy. If you find anything useful, please share so that us other autists can learn about it :)

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  • [–] 1 point 2 years ago (1 child)

    Thank you! I don't really wish to be someone else. I just spent the first 20 years of my life being told and thinking I was stupid, lazy and incapable of making friends. The next 20 years were spent masking extremely well and passing for "normal", except for those total breakdowns every couple of years when I couldn't really eat, sleep or communicate for a few weeks. I was diagnosed with depression, anxiety, PTSD etc. but the meds and therapy didn't really help that much. Finally I got a new therapist, a young one, fresh from uni and full of new information and ideas and after reading my file she made me take tests for ADHD and autism. Both were pretty conclusive but she's not licensed to diagnose it. I got diagnosed with ADHD almost two years ago and got meds and better help but there's still a lot of grief for all the years that could have been better and that's what makes me wish to be different sometimes.

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  • [–] 1 point 2 years ago

    That wasn't my point, in any way shape or form.

    I gave up on psychologists and psychiatrists when I was very young. I decided they were worthless, and that I would define myself and find what works for me.

    I don't claim to have "autism" or "adhd" or anything else because labels do not matter.

    That being said, I also recognize and have seem firsthand through my friends that therapy and treatments can help.

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  • [–] 1 point 2 years ago

    I would wager that not everyone that claims to have diagnosed themselves has the capacity for understanding that you seem to.

    You seem like you actually tried the system, then used it as a sort of guideline for defining yourself. I'm a little confused why you would continue to use their terminology, but I also accept that it's not really my business what you call yourself.

    I don't know you, so I don't use definitive terms. But I accept that there are merits to self-diagnosing, if you are truly seeking to understand yourself.

    I'm sorry you've gone for so long without the help you need.

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