this post was submitted on 05 Sep 2023
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Autism

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[–] [email protected] 66 points 1 year ago (17 children)

From what I've seen, here are some of the arguments against self-diagnosing:

  • Allistic people using autism as an excuse for their behaviors/difficulties, then denying the difficulties that actually autistic people experience and misrepresenting autistic people.
  • Narcissistic and psychopathic people pretending to be autistic to manipulate others, including actually autistic people.
  • Misdiagnosing themselves when their difficulties are actually related to other root causes, such as prolonged childhood abuse.

In the first two arguments, the problem with self-diagnosing is the social impact it has on others, including the autistic community. I can see why some people are against self-diagnosing since it could make their lives harder, especially autistic people. The last one is more about helping the individual properly understand them-self and developing a proper course of action to improve their lives, so it's an argument rooted in care.

I am not entirely against self-diagnosis. However, I think it could be re-phrased to "self-identified" since "diagnosis" is a medical term. It would be like a person saying, "I'm self-diagnosed with depression." That person isn't diagnosed with depression, though they very well may be depressed. It's really just a pedantic issue from my perspective. Regardless, I don't really care one way or the other because I understand what they are saying and think that an actually autistic person self-identifying as autistic is valid enough. Still, while I wont invalidate someone for self-identifying by gatekeeping autism, I tend to be a little cautious at first because of my experiences with people pretending to be autistic. In this case, I think the issue is that some jerks just can't let us have nice things.

[–] [email protected] 11 points 1 year ago

I can see your point here, but what is to stop somebody from begaving that way and just claiming to have an official diagnosis, rather than a self diagnosis to begin with? There's always going to be people who behave in bad faith in any group, People who are going to lie and manipulate are just going to do that. There's no way to avoid that, that doesn't result in alienating people with systemic barriers to diagnosis. With what we know about the bias in diagnosis to begin with as well as all the other reasons people have pointed out. I think rejecting self diagnosis as a valid means of finding support, and community is going to harm more people than keep out bad faith actors.

[–] [email protected] 5 points 1 year ago (3 children)

I think that the biggest issue is that in many places (the UK is a personal example), the services are so utterly over stretched and overflowing capacity that there is literal years long waiting lists in some parts of the country.

In York area, unless you become a priority case due to being a risk of self/other harm then they have a waiting list of over 4000 people, with the capacity to only process 160ish per year. I'll let you figure out that maths by yourself. It's fucking hopeless. So with an official diagnosis effectively impossible to self 'diagnose' is your only option and you have to hope that the people around you are supportive enough to trust you and help regardless.

Not to mention the difficulty in even getting a referral to an assessment for the diagnosis. The steps in place are practically brick walls to us with the requirements needed to fulfill. You need to get an appointment with your GP (good luck since it's not an emergency), then you need to hope they have some understanding/experience enough to identify if you would be suitable for a referral, then you need to convince them you need a referral, then you have to wait for the specialist to pick you up and be put on the wait list, blah blah blah.

Why go through all that energy when you can just 'diagnose' yourself and carry on with struggling the way you always have. After all, as long as you keep your routine it'll be fine...right?

Except it fucking isn't, but what other choice is there?

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[–] [email protected] 40 points 1 year ago

You need a third party to evaluate it.

It’s almost impossible to be truly objective when looking back at your own actions and how you reacted.

My mother has mental health issues which I personally think are due to BPD. She thinks her problem is just that she pulls her hair and feels stressed, and has absolutely no awareness of her other abnormal behaviours.

It’s kind of on the opposite side of self diagnosis but I think it’s still relevant, because ultimately her internal logic makes all of her actions seem normal to her and she can’t view it objectively.

[–] [email protected] 33 points 1 year ago (3 children)

Who wrote this rubbish? Doctors aren’t willingly recommending abuse, and most of them refer to specialists.

[–] [email protected] 7 points 1 year ago (3 children)

Depends how long ago. There's still an old ped in my city that doesn't believe in autism and ADHD.

[–] [email protected] 5 points 1 year ago (1 children)

Or where geographically. Some places are more backwards than others.

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[–] [email protected] 7 points 1 year ago (18 children)

Doctors aren’t willingly recommending abuse

Boomer doctors aren't dead yet, and haven't learned anything since the 70s.

But seriously, think about whatever industry you're in. Surely there are the 'old guys' who haven't kept up with the progress, but are still around kind of doing a poor job of things. Not all old people, surely, but a fair number. At least, that's how it is in IT.

[–] [email protected] 6 points 1 year ago

Boomer doctors aren’t dead yet, and haven’t learned anything since the 70s.

Apparently you have never heard of required CME's.

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[–] [email protected] 4 points 1 year ago (10 children)

ABA is abuse and very commonly recommended to autistic people (or more often, forced on autistic kids by parents).

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[–] [email protected] 25 points 1 year ago (1 children)

Also on self diagnosis: unfortunately too many people.read a Facebook post and then self diagnose thelrmselves with

Not trying to argue against this image, I'll skip that as I don't know much about it, but yeah. I actually know a few people who self diagnosed with autism, ocd and whatnot and they're just in it for the attention it gets them

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[–] [email protected] 22 points 1 year ago* (last edited 1 year ago) (2 children)

I looked for a diagnosis. Called lots of providers and, in summary, they only providers that could accept me were expensive and lengthy. I don't have light or sound sensitivity (which isn't required) so I don't need accommodations. I don't have trama and have worked through most of my issues so I don't need therapy. There's objectively no benefit to getting a diagnosis for me other than claiming I have ASD. And there's some negatives, especially if traveling abroad. So yeah, with that, I don't want a professional diagnosis. I did lots of research and checked more than enough boxes in the DSM-5 to validate myself. Others' validation isn't worth a couple thousand dollars and hours of consultation over a year. If I needed support, it might be worth it, but personally, I feel I'm in a good place.

I was searching for why I am different and found that it had a name and there are other who have similar experiences that I can relate to. That's good enough for me.

I get gatekeeping and that people may be spreading false information or making the community look bad. Call them out then. Otherwise, an educated self-diagnosis isn't harming anyone. Let people be at peace with their sense of self.

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[–] [email protected] 21 points 1 year ago (30 children)

This is why there is such a trend in misinformation these days, a breakdown of distrust in institutions. I get why there is that distrust.. institutional issues are easy to find in all fields, however that doesn’t stop them from being correct on the whole.

Look at Covid denialism, denying the results of the last election… the loss of peoples ability to believe experts in their fields. Unless people here are actual doctors no one here has the expertise to give a diagnosis. Everyone has become an expert these days and does their own research, reality doesn’t care about your intuitions on this though.

Saying this, you might be right you could be autistic based on your own feelings/observations. That still doesn’t make it a diagnosis.

I saved a pic of an article I was reading, this is a good example of being an expert and being someone that has interest in a subject but not having the training and knowledge to fully understand it, I read this a bunch of times and still don’t actually understand it as I’m sure most people here won’t either.

There is nothing wrong with being sceptical of experts as they can be wrong and wanting second opinions on things however that doesn’t make you an expert because you can google things.

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[–] [email protected] 16 points 1 year ago (10 children)

I‘m a little shocked at the amount of gatekeeping in this community. That was less of a problem on reddit tbh.

We „the autistic community“ have decided that self diagnosis is valid and that is a fact. So lets just not discuss the idea of the boogeyman posing as an autistic person and just accept people.

Thanks and have a great day. :)

[–] [email protected] 7 points 1 year ago (6 children)

A posted picture by an individual is not a community collectively deciding.

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[–] [email protected] 5 points 1 year ago (5 children)

We „the autistic community“ have decided that self diagnosis is valid

You are not the entire autistic community. Accept that people can have different opinions.

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[–] [email protected] 4 points 1 year ago (3 children)

We „the autistic community“ have decided that self diagnosis is valid and that is a fact.

So true and I recommend anyone who spends time in online autism communities just get involved in IRL autism communities instead. I find online autism communities utterly toxic and full of gatekeeping and hatred for self diagnosis, which no one I've met in person has ever had a problem with.

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[–] [email protected] 14 points 1 year ago (3 children)

"Most doctors recommend abusive therapy to kids and teens" I've experienced that first hand and is the reason why I feel that being diagnosed was the worst thing to happen to me and is the reason why I typically try to hide the fact I'm autistic only ever admit it when I feel absolutely safe

[–] [email protected] 6 points 1 year ago

I'm sorry that happened to you

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[–] [email protected] 14 points 1 year ago* (last edited 1 year ago) (3 children)

To be honest, I didn't even know I had ASD until I got my diagnosis for ADHD, which I didn't know I had either. And now that ADHD is, let's say, under some control, my ASD traits are more evident.

EDIT: I was diagnosed 6 months ago, just for clarification, at 35 years old.

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[–] [email protected] 13 points 1 year ago

Living in a country that is still on ICD-10 (Autism definitions from the literal 80s), and professionals refusing to test anyone who isn't a child with severe dysfunction: Screw gatekeeping.

Yes, there are people who claim this or that incorrectly, and are really REALLY annoying about it, but don't let those assholes define how you treat people who have spent a lot of time figuring themselves out and need to not feel like a crazy space alien.

[–] [email protected] 12 points 1 year ago

Happy to to get a formal diagnosis if anyone wants to cash app me $2,500!

My legitimately incredible health insurance doesn't give a shit if I'm autistic despite my doctor and therapist both wanting me screened! Not to mention the ~18 month wait to see the one person that does adult screenings in my state.

[–] [email protected] 10 points 1 year ago

In Australia, our healthcare doesn’t fund diagnosis’ for people over 18. So even if you can find someone that will assess you as an adult, you have to pay out of pocket. I recently (last month) got a diagnosis because I found a psychologist who has a sliding fee scale. I was self-diagnosed for 6 years before that.

[–] [email protected] 10 points 1 year ago

I was diagnosed in my late 40s. And yes my wife and I looked it up, and having that diagnosis can only limit the treatment available to me. But the US mental health system is underfunded.

It's also impacted thanks to the epidemic and lockdown of 2020. So, it's going to be hard to be treated in the US unless you have money.

And then the public serving mental health system is connected to our penal system and has similar abuse issues. One in three inpatients are abused, either sexually or violently, or are put on tranquilizers by the nurse (collaborating with the house psychiatrist) so you won't be any trouble. If you're committed in a public institution expect to not get any better while you're in. And they'll cover up any harm done.

(For private facilities, do research in advance regarding their rate of incidents. If you can have legal council available to you do so.)

So we have to depend on each other for help. So its imporant that we assume everyone else is here in good faith until there's evidence otherwise. Note a lot of us are not good with interpersonal discourse. A lot of us instinctively mask for fear of harm and persecution — a concern in the US, UK, Canada and elsewhere as the rising transnational white power movement gains momentum and expands its list of undesirables.

[–] [email protected] 8 points 1 year ago

an on-record autism diagnosis: can be used to deny you custody of children, to have your kids taken away, to forcibly institutionalize you

Yep. That's why I'm not pursuing one. Also why I'm not looking into transitioning.

[–] [email protected] 5 points 1 year ago (16 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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[–] [email protected] 5 points 1 year ago

When there's hundreds of comments you know it's going to be a trashfire in the comment section. Still make me disappointed in people though, somehow.

[–] [email protected] 5 points 1 year ago* (last edited 1 year ago)

I'm in the "can't find a doctor" camp. I had one doctor diagnose me with ADHD and BPD, but referred me to another doctor to be tested for autism, and had a ton of trouble just trying to get the appointment that now I'm just trying to find another doctor that offers mental health care and takes my insurance; but this was a bitch and a half to begin with with the doctor I have now, and the more I look the more I see just how fucked up this side of health care really is. Overworked, understaffed, full of people who do not give a single fuck about you, etc.

It's harder every day to even want to continue living.

[–] [email protected] 4 points 1 year ago

Reading all the comments I think what's going on is that some places it's tough as nails to even get recognized as autistic much less get assistance for it and other places professionals understand autism and can help and some places you will be abused for being autistic

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