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  • 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.

    • I can see your point here, but what is to stop somebody from behaving 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.

    • 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?

      • Ah, that makes sense why people feel so strongly about advocating for self-diagnosis. It also makes sense why some people are really concerned that they weren't autistic enough at their assessments because re-evaluation could be near impossible. That's such a disservice to the autistic community. What do they expect people to do while they wait for assessment? It's not like people are doing great and think, "Maybe all my success is because I'm autistic." If this comes up, there are probably some considerable difficulties going on for someone to consider they're autistic. I was not aware of that and sorry you're in that situation. Thank you for sharing.

        If you have the energy to endure the process, it might still be a good idea to get on the wait-list. Three years are going to go by whether you're on it or not. However, I could see being pretty distraught should the GP be invalidating by denying a referral and potentially having that in your national medical record. Another idea would be to maybe find a way to save up little by little to see a private provider, even if it takes a few years.

        BTW, I want to be clear that I'm thinking of ways you could get assessed only because the diagnosis was very helpful for me to make sense of things and access proper autism services.

    • For the first two things, there's always going to be manipulative assholes that grasp onto anything they think will garnish sympathy. Rather than targeting otherwise innocent behaviour that goes along with manipulation, we should be educating people about what manipulation is and how to avoid it.

      For mental health issues, it comes down to, your mental condition might explain your behaviour but it doesn't excuse it. If your behaviour is causing me harm, I don't need to accept that for any reason. All a diagnosis does is provides you with more information about how to manage your shit.

      If someone uses a diagnosis to justify their behaviour, they are essentially saying that this is the way they will always be, which IMO is even more reason for others to take their own steps to mitigate those behaviours, which might mean cutting them out emotionally, cutting them out entirely, or getting help from others to do those.

      Don't set yourself on fire to keep others warm and stop letting them manipulate you.

    • The term "identified" is used as an insult, particularly when referring to transgender people, to imply that they aren't really correct. I don't think it's appropriate to use that in the context of autism, because many of the people who do believe themselves to be autistic do go on to get professionally diagnosed. I became interested about 20 years ago in the possibility that I may be autistic, as I met all of the criteria, but only recently did I actually get the resources to pay for a diagnosis. It cost me nearly $3500.

      The problem is that self-diagnosis IS valid, when it is valid, and is not valid, when it is not valid.

  • 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.

    • Are you an expert in psychiatric diagnosis? Neither am I, but I have spent enough years with loved ones trying to navigate the so called mental health system or industry. Scratch a little on the surface of psychiatry and you find not science, but snake-oil, pseudo science and lots of abuse.

      There is an enormous gap between a diagnosis made by a medical doctor based on medical exams, and a diagnosis made by a so called mental health professional based on talking to you for ca. 55 min. Or make it even 2 x 55min. The professional might, based on their culture or experience, diagnose you with Borderline disorder (a popular option for teenage girls), Bipolar disease (a favourite for the male midlife crisis), general anxiety and/or chronic fatigue and/or chronic pain (for women who have learned they have to function to have value, hear dearie take another pill!) or a range of other things currently in fashion or in fashion when the person learned their trade ... nobody sits out there in their psychiatric practice and actually measures people's brain functions, like with real science (although there seems to be evidence that in the case of ASD/ADHD one actually could).

      I distrust health and especially mental health institutions because I haven't gotten the support from them they claim they offer. Their medications have consistently made my loved ones and me worse. Their advice was either non-existent or trivial (I could have googled it). Their structures were all built to induce the symptoms they claim to cure (ever saw a bunch of overworked doctors and nurses smoke in the hospital entrance? Ever looked at what's inside of a hospital vending machine? How a psychiatric patient spends their day?

      (Unless you have money to spend on more agreeable mental health surroundings, like you could send your socially awkward child to a nice kind of institution.) /s

      • Just picking out two of your arguments:

        A psychiatrist is a medical doctor.

        During my assessment for ADHD an EEG was administered and the assessment for autism in my country includes on as well.

      • As I said there is lots to find wrong with all our institutions and I understand where it comes from, but does that mean we completely disregard everything now throw the baby out with the bath water? Should you now be able to prescribe medications for yourself now too? Because you have seen the institutional problems does that make you an expert in their field? I get being able to see problems that doesn’t take a degree or training it still doesn’t make you personally an expert (and don’t confused when I say you, I also mean me and everyone else that doesn’t work in that field) You could come to my work and see how poorly it’s run but that doesn’t mean you are gonna be able to jump on a locomotive and operate it.

        Yes you personally have experienced the gaps in the medical field how about tons of other people who haven’t, every job on this planet has people that are shit at doing the job they are in, that doesn’t mean the job is no longer viable on the whole, if you have bad experiences with doctors you try elsewhere if it’s possible and realistic obviously

    • The example you bring speaks much about your non-understanding of what "self diagnosis" means, imo. Seems you think about it as solely applying academic knowledge. From what i read so far, and from own experience, it is first rather an assessment of self perception as questions arise at some point, such as "why do i feel so alien", or "why am I exhausted seemingly out of nowhere". Only then, one may discover that there is a "spectrum" of traits of which one shares a more-or-less large number. So this is about self-knowledge and discovering that so many difficulties one has are apparently atypical. No one external can do that for you. And frankly, i wouldn't trust a neurotypical person who just goes by the clinical book with "diagnosing" autism in someone who for decades trained "adult".

      Btw. I have a degree in Biology, therefore i do understand in principle what the cited abstract is about, and why it may be difficult to accurately map highly repetitive sequences. Of course i have little knowledge in the field of genome sequencing, so the codes therein tell me exactly nothing.

      • And frankly, i wouldn’t trust a neurotypical person

        This is the main thrust of what I'm seeing out of this subreddit. It's concerning.

      • You have a degree in biology which is exactly what I’m talking about, so you actually do understand things in this field.. you have expertise, training and knowledge in biology as opposed to someone who takes an interest in it and googles/TikTok’s all their information about it

        I did say you may feel this way and that’s fine but that doesn’t automatically make you autistic you need a diagnosis otherwise what’s the point of doctors and science?

        Simply apply this logic to a physical ailment.. this is a made up scenario for you, recently I have been having continuously bad headaches… okay there is the self discovery/self diagnosis part done perhaps it’s just a headache, now you need to go to a doctor to actually get a diagnosis pretty sure you can’t self diagnose a brain tumour

        Something I could diagnose is cars, I was a Mechanic for 17 years, what do you do if your car doesn’t start, yes you can check the internet and look for possible answers, sometimes they are correct too and you can even get the basic idea of why it caused the problem, the difference between me and finding info on the internet is I know why your starter isn’t working I know the difference between a starter contact and a plunger I also know how the starter works when you turn the key, I know how the magnetic field is working I know how it physically makes contact thus giving you a car that starts, and on top of that I also know what else out of the myriad of other things it could be to check if YouTube is wrong and it’s not the starter

  • "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

  • 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'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 removed 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.

  • 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

  • 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!

  • 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.

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