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.
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.
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. :)
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.
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.
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.
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.
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.
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.
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.
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.
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.
Well I am feeling more lost again with this post. Discovered 4 months ago Asperger Syndrom from someone that had it talking about it online and I found their words surprisingly near me. Went on a trip online curious and read about it, felt more lost because not everything written is present but a lot is there. Decided to look on Reddit. Did the Raads-r test seriously, got a 131. But papers online say it's effective but finds some false positives. So I did the Clinical Partners Adult Autism Test and the results where strongly positive. Did the recommended Aspi-Quiz, and I got a 150 on 200 for broader autism. I'll be moving very very soon and taking rendez-vous with a specialist would take too long, so I am in a grey zones. Posts like that make me feel like maybe I could get an answer, and maybe learn more about myself, even if it's a "Well no you are not, you are just simply different" or a "Here, there is a word for what you feel you are living, go learn about it". But reading comments remind me simply I'm just there floating in ignorance for now, and a bit feeling lost about how I work, or think I work
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.
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.
Does this mean I'm normal now?
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
So I'm someone who's very involved with the autistic community in my country (at least used to, taking a break now, not sure when to come back). I'm just gonna pitch in and say that self-diagnosis is more of a symptom of a larger problem: which is lack of access to proper, official diagnoses. It's not perfect, in fact it can be harmful. For example, I know someone online who thought they were autistic and through a doctor who specializes in autism, they turned out to have BPD. Now, imagine if a self-diagnosed autistic who actually has BPD doesn't and/or can't go through a proper ASD assessment (and to an extent isn't aware of their BPD either, because as I said, lack of proper assessment), and they enter the autism community, manifesting their behavior in less than ideal ways, which does more harm and good. This is one possible, and perhaps damaging result of the emergence of self-diagnosis. But at the same time, the system doesn't provide the assessment, and so self-diagnosis is the only pathway to understand what may be wrong with us. The thing we must collectively fight for is to make official diagnosis more accessible and affordible, the methods vary depending on the country, of course.
Full disclosure: I was officially diagnosed as a toddler. But I know many adults who resorted to self-diagnosis or get diagnosed remotely (by people who may or may not be qualified to do such assessment) because assessment for adults is difficult here. The local psychologists have not proven that they use the proper diagnostic tools to assess autistics in adults; a big hurdle is the lack of local translations.
I got myself onto a waiting list in my native country to get an official diagnosis. Would have had to be paid out of pocket, plus the flight back home (adult autism diagnosis in my residential country? Never heard of such a thing, so my native country was the only place to even try). But when I first started entertaining the idea that I could be autistic it was quite the revelation for me and of course I wanted it proven and on paper!
When they finally called after three years with a date for a first assessment I politely declined. Psychiatric diagnosis is one of the most trial-and-error processes we have in medicine. I do believe some brain difference exist that account for the differences between people like me and others, but all that Psychiatry has done is they attached some acronyms to it. Beyond that? They don't know why, how, or what to do with us other than reeducate us to appear more normal. There is no better support for me out there than what I've built for myself over the years. I live remote with little human interaction. I work remote. I have self-built ergo stuff for my fucky joints so I can continue working. I choose my own medication. I allow myself to be weird and will not finish any day without a good wiggle or making a few weird sounds. Hey I even found an equally weird partner, lucky me!
It's of course entirely possible that I'm just making the whole thing up in my mind and could do fine in a presence type job, and that I could do fine without wiggles and noises. But at this point I don't want to know, I'm fine.
If self-diagnosis helps you set up your life to be more easy for you, go for it!
