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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. :)
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.
This is so not the case as on reddit and I'm disappointed to hear someone say that. As the father of an L2 child the majority of autistic and "autistic" people online are the exception not the rule. This is why subreddits like spicyautism came around because of the deluge of asshats who don't represent the silent masses of autism minimizing the struggles of life.
I'm sorry if that comes across confrontational but it's the reason why for many, myself included, the main autistic subs became a toxic cesspool of self diagnosed people invalidating real autistic people because they know better.
From what I've seen, here are some of the arguments against self-diagnosing:
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 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.
I'm currently not sure how I feel about a proper official diagnosis at this stage. With the stigma around mental health illnesses 8 worry it'll just be used against me. My journey with this is still very young (read: days) so a lot of stuff I'm finding out quite fresh and this particular nugget of info was as soon as this very morning.
There are other routes you can go through such as charities, the main one being 'Right to Choose' who support you with how to approach your GP, templates for letters, what to say to the various people you need to speak to and such. They also act as a tool for you to find support groups, specialists etc etc.
Sounds amazing, right? Hell yeah. Except they're so utterly overflowing they've been closed to new referrals/applicants since the end of August.
2 weeks too late. Honestly, man. You can't make this stuff up.
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.
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!
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.
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.
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.
What are these negatives you mentioned if traveling abroad?
Traveling isn't much of an issue, but emigrating can be prevented to some places like Australia and New Zealand.
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.
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.
Who wrote this rubbish? Doctors aren’t willingly recommending abuse, and most of them refer to specialists.
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.
That still doesn’t mean they recommend “abuse.” Every doctor in the US must renew their medical license every few years and that means taking continuing medical education classes. Nobody is recommending therapy from the 70s anymore.
Also, it’s still vague about what this “abuse” is so it’s hard to debunk a vague accusation.
ABA therapy. That is the abuse being referred to.
ABA is abuse and very commonly recommended to autistic people (or more often, forced on autistic kids by parents).
Oh is that what ABA stands for?
I thought it stood for American Bar Association. I still do, since no other definition was offered. I would disagree that the American Bar Association is abuse.
It refers to Applied Behavioural Analysis.
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.
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.
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
It's about knowing myself and how i experience myself in relation to others and seeing the difference. It's not about putting a label on me because of a set of behaviourisms. I don't even want that "disorder" label. Or be seen as defective somehow. Perhaps i should just find it funny that others want to deny me the expertise in knowing my self-experience. This community used to be quite nice and understanding until recently.
Except every single person on this planet feels differently than others do we aren’t a mass lump of sameness, being different doesn’t automatically mean you aren’t normal or have a condition, which is the entire purpose of adding labels to things especially in relation to needing it for any type of medical care or assistance of some kind.
If you personally don’t require a diagnosis or label then good for you, you don’t want or need the label of autistic so you don’t need a diagnosis so you are arguing for what exactly? The ability to self diagnose yourself with a label you don’t even want?
I re-read the replies I made and anyone else that replied and I don’t see anyone being not nice, people can disagree with your opinions that doesn’t make them unkind, if you get upset that others disagree with your viewpoint don’t worry about it just move on with your day
Me disagreeing with you didn’t deny you your own self experience, just like you disagreeing with me didn’t deny me anything either
I think I never claimed "I am autistic". I'm just trying to explain (that's not an opinion but it's trying to clarify indisputable things), that i'm obviously my own authority in seeing that my human being here has an above-average share of neurodivergent traits. I make a distinction between ND and autism, btw. If that would be assessed "autistic", I don't know (but it would be interesting anyway). The more I'm around in places like this the more relatable stuff pops up, and having it all labeled a disability is devastating. There are traits that rather handicap me within my society (but wouldn't elsewhere), and there are certainly abilities that have me stand out. Having strangers who know nothing about how i live and about my path in life want me to get labeled a "disorder" is ridiculous at best and offending actually.
The general vibe of this comment section smacks a lot of hexbearian-style brigading, sorry if you're not part of such a thing.
Having a disorder isn’t offensive at all, you seeing it that way is your own problem, it’s a word, we use words to describe things, if something deviates from the norm then it’s a disorder, no one chooses to have a disorder and having a disorder doesn’t make you any less of a human. You are getting hung up on a word and you personally don’t like the word is all this is.
You saying this place smacks of brigading is also funny, once again just because other people don’t automatically agree with you doesn’t mean there is something going on.. it could just mean people disagree with you. Not like the actual instance matters but I’m from the same one as you..
You disagree with me, I don’t think you are “brigading” or trolling I just think you have a different opinion
Late reply but for those who read this later: careful when wanting to know what is "the norm". It's social ideals, mostly. (And if it were statistics, where would we draw the line and why ... homosexual ... disorder?) -- Yet luckily, "disorder" means illness, while a non-valueing statistical out of the ordinary would rather be called "divergent".
Relevant quote from the article:
Whilst [neurodivergent] traits were celebrated in the modernist era, they increasingly began to show up as problems in the Britain during the 1980s – meaning that something had changed in British social normativity. Interestingly, according to critical psychiatrist Sam Timimi and colleagues, this largely happened in light of the rise of the neo-liberal market system, and in particular the services economy. In particular, this economic shift began to alter the notion of the ideal male: rather than being fixed in focus and obsessive, men increasingly now had to forever shift into new roles and to constantly sell one’s “self” in order to fit in. Members of the workforce, in other words, now had to become increasingly agile, flexed, narcissistic, and hyper-social in order to succeed and be valued – and this economic drive became reflected in social normativity at all levels of society.
So you took all this time to find an article that you liked and this is what proves that it shouldn’t be called a disorder? It’s some guys blog…
Find something in a peer reviewed journal and then maybe you will have something of substance
I'm learning. Do you? This implies it takes time. Glad we can end this breathtaking conversation with a win-win.
I truely have no intention to beat anyone in the domineering game. I'm being snarky, tho.
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.
"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.
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.
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.
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.
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
Then they probably need some attention fr. Like Professional attention. Some need is not being met
Honestly, memes aside, go look for a professional diagnostic.
Otherwise you are not autistic you think you are autistic
A diagnosis doesn't magically turn a switch on, if a person is autistic, they have been all their lives, even if they never get diagnosed. What is this invalidating bullshit?
You're correct, but so is the comment you're replying to. Lack of a professional diagnosis does not make an autistic person neurotypical, but a self-diagnosis is not the same as a professional assessment.
People are absolutely horrid at objective self-evaluation. Even if someone's making a sincere, good-faith effort to describe a set of problems they're having (i.e., not to impress TikTok) and they arrive at "I'm autistic", there are so many overlaps between disorders. Sure, you may have a lot of conditions that overlap autism, but are you sure the core reason is that you're autistic and not that you have avoidant personality disorder, or OCD, or reactive attachment disorder, or social communication disorder, or sensory processing issues, or even lead poisoning, or sociopathy, or a learning disorder, or...?
It is correct to make a distinction between "I believe I'm autistic" and "I am autistic". Self-diagnosis is potentially harmful in many ways, not the least of which being that the self-diagnosed person may have a different and treatable condition that goes untreated because of their self-diagnosis.