fandomsecrets | [ SECRET POST #3592 ]

[ SECRET POST #3592 ]

⌈ Secret Post #3592 ⌋

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What is your opinion on this?

I have a Facebook friend who is kind of an advocate for autism (and to a lesser degree, other disabilities). Thing is, she's never been diagnosed with autism. I know there are reasons why someone might suspect they have autism (or some issue) and not seek a diagnosis, but I don't get why this person doesn't. She has access to doctors (she's mentioned seeing doctors often for her physical disabilities), and she seems to consider being autistic a major part of who she is.

Also, she has this major thing about whether you call her "autistic" vs saying "[he/she]has autism/[people]with autism" I know what her preference is, so I'll use it, but if she'd never mentioned it, I'd have probably just used whichever one came to mind first, because they seem interchangeable to me. But she seems to think that if someone phrases it "[name] has autism" they're making a point of saying it that way, and sort of dehumanizing autistic people (not quite sure how). I think someone tried to push saying it that way for a while, but still, I'd assume most people aren't even thinking about how they phrase it.

Self-diagnosed is shorthand for bullshit. You give people a basic psych textbook and list of symptoms and 99% of them will diagnose themselves with something. First year med school is the hypochondria year for a reason.

I think a professional diagnosis is going to be more accurate, and I'd encourage people to seek one if they're able. But I'm not, like, personally offended by self-diagnosis, especially if it's framed in terms of self-understanding and stuff like that.

Also, practically speaking, in a case like this, it's not like you can force her to get a professional diagnosis or talk her out of her self-understanding, so it's probably not much point in pushing on it, you know?

OP - I've never tried to push it on her. It's just something I was curious about.

I hate people who self-diagnose. They fill me with a towering rage so that I can hardly speak. I go to the roof of my house and I scream at the sky. "Why is anyone so arrogant and awful to think they can self-diagnose? Why would they do this? Don't they know that self-diagnosis pollutes the ocean? Don't they know that it makes birds' eggs weaker and the air harder to breath?" I scream this into the sky every day and then collapse exhausted and dehydrated from all of the tears I've wept because of people who self-diagnose.

two very different issues but I will start by saying Person First language is not new or exclusive to autism. Its commonly taught in relevant fields (such as special education which my girlfriend is studying and that's how I know this) that it is good practice to use "person first language" - so you say for example "a person with autism" or "a person with emotional disturbance" rather than "an autistic person" or "an emotionally disturbed person" because it can make people feel like they are being reduced to one condition otherwise. Of course everyone has their own preferences, and there has been some push against he concept recently(blind and deaf advocacy groups generally advocate with "blind person" or "deaf person" for example), but the idea of person first language is a real concept that is taught as a default in many fields, so your friend isn't getting that out of thin air.

As for self diagnosis, I have mixed feelings cause of course it can be an important tool in actually getting a diagnosis, but I don't understand why people with access to doctors and who aren't fearing stigma causing them to hide stuff would choose not to

Your thoughts on self-diagnosis sounds a lot like my thoughts. Mum sometimes looks up stuff online when she's worried, but she always takes it to her doctor to discuss and get a professional opinion. If one stops after just looking it up online, one may be wrong.

Basically as I've had it explained to me, years ago the negative was "an autistic" and the positive was "A person with autism"

Then culture and language shifted, as it does. Autism Speaks really started pushing "Person with autism, cure the autism and save the person!" and pushing the narrative of autism as a disease that steals away healthy babies. So person-first got associated as the bad, and the current trend is to use "Autistic person, like blind person, deaf person." to try and normalize it as part of the person instead of a disease affecting the person.

And so you get two sides of the fence on which is better depending on which someone learned as the negative term and which was learned as the positive term.

That makes sense! I knew there was some contention with it re: autism and person first language but I didn't know as much. That makes since though! It does make sense to me that it would be more akin to, say, the Deaf community. Thanks for the explanation!

If you have a mental illness, how can you know what truly is wrong with you? Self diagnosing is stupid AND dangerous.

But if you can't know what is wrong with you how can you ever know you are mentally ill?

NAYRT-

Knowing something is wrong without being able to pinpoint the exact cause isn't unusual.

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The same way that I know I have a sharp pain in my stomach but I don't try to diagnose the cause.

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She sounds like an asshole, and self-diagnosis for autism is a really tricky thing. With a mental illness like, say, anxiety or depression, diagnosis really isn't such a big deal imo: if you do go to a doctor, essentially what will happen is you say "doctor I'm anxious all the time for no reason" and the doctor will say "you have anxiety." With autism, I don't know exactly how it's diagnosed, but I think there are a lot of people out there interpreting their social awkwardness or whatever as autism, which is a dangerous thing.

At the very least, if someone's self-diagnosed, making autism a "major part of who they are."

I've been diagnosed with Aspergers, and let me tell you, the testing was extensive. Examining my past medical history and behaviors, neural testing and exams on my intelligence/thought patterns/how I interpret information, and tons of psychological analysis through surveys and discussion. It took me a week to be diagnosed properly, and I sit on the verge of the spectrum so to an outsider it could have appeared I had only anxiety or bipolar disorder. In the end I got a multitude of different diagnoses(spelling?) that I never realized all worked in conjunction to affect why I act/think the way I do. OCD/Anxiety/Social Anxiety/Aspergers/math anxiety and slight ADHD. It was empowering to know all those things but if I had self diagnosed them I don't think I'd be near as far along in dealing with them as I would be with the doctor's help. It's confusing as fuck and not just something you can figure out on your own.

I had a very good friend like this. Took an online quiz and diagnosed herself with Asperger's, then used that as an excuse for her shitty behavior. I stopped being her friend. I think she probably was legitimately depressed, not autistic/Asperger's, but she wouldn't see a doctor.

yikes. Probably a good thing you ended that friendship :/

Yeah, it was awkward and sad. I missed her a lot for awhile. But she was manipulative af and I had to nope out of there.

As someone with actual diagnosed mental illnesses, I think it's bullshit. Doctors exist for a reason; they have years of schooling and practical experience in diagnosing and treating things. With mental illness especially, a lot of different things can have overlapping symptoms, so it's easy to misdiagnose yourself with one thing when it turns out that what you have is actually something completely different that happens to share some of the same symptoms.

I don't take anyone seriously if they self-diagnose because, in my experience, most of the time they're wrong.

This. I thought I had depression, finally went to a doctor and found out it's PMDS.

Haveno opinion on whether or not your friend has autism because I have no way of knowing. But, as someone said above, I do know that 'name who has autism' is actually considered the more respectful way of phrasing it in the community, because it doesn't reduce the prrson to their condition/disability.

She can definitely have opinions on how people refer to her condition. But she is going outside the community's standards (which is telling of the fact she hasn't been officially diagnosed). And you also have the right to decide for yourself, after weighing up everything, whether the bullshit she is putting people through is reasonable and/or worth it.

Using the label online is a lot more convenient than being tagged with it in real life. You can ditch the online label just as you can ditch a username, persona, whatever. It's cherrypicking the advantages the label can give you while avoiding any of the actual burden.

If your friend actually went to a doctor for a real diagnosis, that opens her up to a great deal of uncertainty. What if she doesn't meet that diagnostic standard for autism, for example? What if it turns out she's wrong and it's something else? The more entrenched she becomes in being an autism advocate, the less likely she's going to want to do anything that risks that identity. It might be bullshit, it might not be... but she's got too much at stake to find out for sure.

I think in some cases self-diagnosing it can help people seek help.

tl;dr Sibling was "self-diagnosing" in high school, mom waved it off, sibling got help on their own in university.

For a while in high school, my sibling was saying they thought they had depression. I was only there to hear them say it the last time, when our mom chuckled and said, "Self diagnosing again, honey?"

Honestly, I was really shocked and pissed. Our mom has clinical depression, and for her to dismiss it out of hand really upset me. I saw the moment my sibling shut down about it, too, and it broke my heart. I was too young to know what to say or be brave enough to speak against my mom, and to this day I regret not saying anything.

Nonetheless, my sibling managed to find help in university, seeking help for anger issues and insomnia, and I think also the underlying depression. At least there's been a mellowing since university, through all the ways the counsellor recommended dealing with the energy built up around the rage and lack of sleep. (I was super proud of them, and tried to be encouraging of them, especially because they felt kinda weird talking to someone about it, because they weren't sure it was "real thing" for them.)

*Disclaimer: Our mom is really very supportive and loving, but like all parents (read: people) she isn't perfect. I think part of it stemmed from being in denial that one of her children would be burdened with the struggles she's faced her whole life, even with meds to help balance her brain, but not realizing how much that off handed comment could impact the next 15 years of my sibling's life.

Also, my sibling doesn't hold it against her, but I'm sure it hurt more than they'll say...

I'm glad to hear that your sibling is doing better, and I definitely agree with you about the broader point with regards to self-diagnosis.

On the self-diagnosis part like all things it can be good or bad.

On one hand a lot of mental illness does lie. I have a friend who's pretty much textbook "I know one of the symptoms of depression can be thinking you don't have it and you just feel bad because you're an awful person. But... but what if I DON'T really have depression and I AM an awful person?"

On the other, when I'm laying awake at night with my brain screaming all the Bad Things that might be happening. "What if your aunt just woke up and decided to get something from her car and someone jumped her and killed her? Meanwhile you're just laying here snug and safe in your bed. What if..." I don't need someone in a labcoat to tell me that ain't normal, and there's no harm in whatever breathing exercises or meditation or whatever to help relax.

Also personal story time. Someone I know has a husband with mental health issues. Years and years ago they went to doctors, the doctors went "He had X, lets try these therapies and these medications." and for YEARS that was the game plan. They moved, new doctors, they looked at the diagnosis and went "Sounds right, lets keep going as things are." and everything continued on. Until the wife read about Y on the internet, frequently misdiagnosed as X, and started researching it. Noted that it fit exactly, including that the medications that were cross prescribed for X and Y had always worked much better than the ones just for X. Brought it up to the new doctor, they reviewed everything and went "Huh! You're totally right. Y fits much better." And now he's on more specific treatment for Y and is doing worlds better than before.

Doctors are just as likely to try and hold onto a diagnosis. I know people who've talked about how frustrating it is once you get diagnosed with an anxiety disorder because lots of doctors will happily ascribe any and all symptoms to it. "My chest hurt and it's hard to breathe" "Anxiety can cause that" "My leg hurts" "Anxiety! It causes all sorts of weird pains." "My skin just turned yellow." "Anxiety's weird, huh?"

So... yeah, basically I feel diagnosis should be a two-way street. Doctors should value patient input, patients should respect doctors' input.

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