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 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.
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.
That sounds incredibly frustrating. Feel free to reach out to the community if you want! There is a hunch of helpful people on here, and we even have a chat going that you can reach via the sidebar.
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.
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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.
The term “identified” is used as an insult, particularly when referring to transgender people,
I haven't heard that before. Is the current progressive trend to avoid using the term "identify" entirely? If so, let's say I was completing an interview, and I needed to ask someone what ethnicity(ies) they identify with, how would I ask that?
It varies in practice. Most people I see using identify, including many trans people, are well-intentioned and think it's the preferred polite language without thinking too hard on the implications of it.
However there are definitely anti-trans people who will use it pejoratively, which I presume is where that wording originated.
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I've never once heard of it used like this. Could you provide an example please? I'm not sure I understand.
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Bigots commonly insist that trans people use "I identify as" rather than "I am" when the transgender people are giving their gender, because the intention is to deny those people the ability to be seen as their preferred gender and instead give the impression that those people are impostors, implying that "identifying" is more akin to "relating" instead of categorization.
Insisting that an ostensibly autistic person use "self-identified" instead of "self-diagnosed" would have the same effect.
If you want to use a proper word that's not "diagnosed", "self-assessed" would be more accurate.
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Thank you for sharing your perspective. Does the distinction between "identify" and "self-identify" make a difference to you?
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I don't know about the other people involved in this discussion, as I know that obsessive interests are part of different communities, but I am someone who studies languages and word meanings.
The information that I am sharing is not my perspective. Those words do have that context in common spoken English in the year 2023.
That would not have been the case many decades ago, but the word "identify" tends to be used ironically and sarcastically and with derision. It doesn't matter if the word is used by itself or paired with the word "self".
I'll point out the definitions on Urban Dictionary, to point this out(and not just on the first page, but on pages beyond that):
https://www.urbandictionary.com/define.php?term=identify
Insisting that people who have not been professionally diagnosed use "self-identified" will lead to even more bullying and social abuse from neurotypical people who already use that context when trying to justify their bullying and social abuse.
"Self-assessed" would be a phrase which is more exact and does not have that additional context of being tied to groups that have been targeted for bullying and social abuse.
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Most of us here don't seem to hear it that way so I don't think it's so cut and dry. I know, you study word meanings, but I'm a descriptivist, and if enough people take a certain meaning from it then that's what it means to me.
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The issue is not what meaning we(those of us who are autistic) take from it. The issue is that the people who will bully will use it as further justification to bully and to socially abuse people.
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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.
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.
Boomer doctors aren’t dead yet, and haven’t learned anything since the 70s.
Apparently you have never heard of required CME's.
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.
This article is really really good, I think it deserves to be a post of it’s own. This quote is the best description of the way I experience being verbal that I’ve found:
When you are autistic, talking can be exhausting. Even if you are extremely verbal like I am – adults praised my precocious vocabulary as a child, and I have often been called a “chatterbox” – vocal speech is draining. My well of words may be deeper than that of most other autistic people, but it is not bottomless.
Also, it’s still vague about what this “abuse” is so it’s hard to debunk a vague accusation.
So you've already made up your mind that it's something that needs to be debunked before you even know what "abuse" refers to?
It's shit like this that keeps hurting credibility of anyone defending established practices, right or wrong.
I have a distinct recollection of professors at a UNC Chapel Hill department cocktail party comparing notes on their psychoanalysts in the late 2000's.
Psychologists are not the same as physicians or psychiatrists. Your 20 year old anecdote isn’t proof of anything, sorry.
It was a poor attempt at humor. Sorry. EDIT: oh, it’s you. Hello Newman. Destroyer of humor. Psychoanalysts can have MDs. They’re a relic of one aspect of health that mainly and rightly died out in the 70s. There.
Ahh yes old people are dumb and bad, what a highly enlightened take you have there, you spend way too much time online
Anyone who willingly lumps a bunch of people into a one size fits all category tells me all I need to know about that person
Anyone who willingly lumps a bunch of people into a one size fits all category tells me all I need to know about that person
Not sure if intentional, but hilarious either way
Okay so mostly all old people.. got it.
And only in your limited worldview in your profession.. somehow that didn’t seem to make it any better of an argument for me
You work in IT yet seem to know the training levels and requirements for doctors or perhaps you are just generalizing once again
I hate that I'm annoyed enough to provide receipts for something so obvious as "skills and ability decline with age"
Do I need to have receipts to show that pre teens and teens generally have less knowledge than 30 year olds? Pretty sure I don’t because I wasn’t arguing what you are posting receipts about
Of course aging affects skills and abilities and when you start to get to the end of lifespans, memory and knowledge can also fall off, I’m not saying that doesn’t happen I replied to the idiotic statement that “Boomer doctors aren't dead yet, and haven't learned anything since the 70s.”
A blanket statement of idiocy is what that is.
Ah, well, I can't exactly force you to understand hyperbole. The fact that the next phrase was "but seriously" should have indicated the lack of seriousness of the first statement.
Damn, it sounds like you're lumping a bunch of people into a one size fits all category, telling me everything I need to know about you. (I believe that 70% of people are liquid, so that should tell you everything you need to know about me)
Just got around to replying and I’ll use this as my reply to you and Cryo..
If an individual person (not a group of people in case that’s not obvious enough) makes statements like all the black people I know are criminals, all the Jewish people I’ve ever met only care about money, every woman I’ve ever dealt with is emotional, boomer doctors aren’t dead yet and haven’t learned anything since the 1970s
Then yes in general I kinda think that tells me all I need to know about that person, they are using blanket statements about groups of people which is pretty idiotic, they later said they were being hyperbolic, okay fine still a dumb statement however
Depends how long ago. There's still an old ped in my city that doesn't believe in autism and ADHD.
For real. The "works for me so you are a liar" vibes in this comment section is making me sad.
If he or she is still licensed, report them to the state medical board. They should be referring people to a psych specialist anyway.
I am not in the US.
And no, that's not our system, a ped will consider the information provided by a psych, but generally someone from allied health or a GP will have already referred to various professions before they see the ped.
ABA is abuse and very commonly recommended to autistic people (or more often, forced on autistic kids by parents).
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's funny that someone is so triggered by implications that ABA even exists that they downvoted you for factually pointing out what the acronym stands for.
I just searched "aba therapy near me" and "aba therapy clinic" and got dozens of results. They're not close-but-not-exact matches, either. These are places that literally describe themselves on their home page as focusing on delivering ABA services to children.
Considering referrals issued by a licensed doctor are considered confidential, and illegal to share without patient consent in many areas, the ability/inability to present such a referral as evidence is not a good criteria for whether it happens or not. But the prevalence of specialists that offer these services certainly indicates that specialists are finding it a profitable business model. I suppose it is possible that the vast majority of their business does not come from doctor referrals, but that seems unlikely.
A lazy google search you didn’t even bother to cite is not proof. You’re not going to find licensed MDs or DOs endorsing this practice, because it’s outdated and warned against in CME (ergo anyone who has a current medical license had training on what the actual therapies are), though I can’t speak to psychologists as they run the gamut of modern medicine to neo-Freud.
You’re letting your prejudices against doctors override the reality of todays healthcare.
What you say is probably true for your country or region. It is not global. Variations are extreme.
Way to double down on your hypocrisy.
As I pointed out, your demand for examples of licensed doctors providing formal referrals as the only acceptable proof is ridiculous. In the US that is covered by HIPAA, and illegal to share without permission from the patient. You're essentially saying "the only proof I will accept is anecdotal evidence provided by a patient willing to share their confidential medical records." The fact that you skipped right over addressing that when it was pointed out suggests that you are operating out of a position of emotional investment, rather than actual interest in discussion.
The fact that I actually provided you the google searches I used, then to have you not only refuse to bother trying then but also pretend that I never supplied them in the first place (pro-tip: "I googled the phrase 'aba therapy clinic'" is functionally the same as "https://www.google.com/search?q=aba+therapy+clinic") just makes it more hilariously clear that you started with a position (that doctors are reliable and would never do anything abusive), and are simply approaching discussion by looking for ways to immediately discredit and dismiss any and all statements that don't agree with your preconceived worldview.
The funny part is that I don't even know if ABA is "abuse". There's certainly a lot of literature about how it was, but more recent material claims that the most egregious elements of abuse have been removed. I only chimed in to point out that ABA is absolutely a current thing, despite your hilarious attempts to insist otherwise. Your imaginations of my own "prejudice" mixed with your mewlings about "the reality of today's healthcare" only add to the humor of your clownish responses.
Picking a random location (New Haven Connecticut), here are some clinics advertising ABA therapy: https://www.achievebeyondusa.com/locations/connecticut/ https://cultivatebhe.com/locations/connecticut/new-haven/ https://www.autismlearningpartners.com/locations/connecticut/new-haven-county/new-haven https://www.autismspeaks.org/provider/proud-moments-aba-new-haven (of course the ultra-shitty "Autism Speaks" currently endorses ABA!) https://www.abrandnewdayaba.com/
Here's a couple of "top 10 ABA therapy providers in New Haven": https://beaminghealth.com/aba-therapy/new-haven-06510/all https://m.yelp.com/search?find_desc=Aba+Therapy&find_loc=new+haven%2C+ct
But yeah, let's just go with "ABA doesn't exist any more because no one is showing me an actual physical referral from a doctor specifying ABA on it" so you can pat yourself on the back and feel safe from being wrong on the internet :D
Did you even bother to read your own links? The first one has no physicians and doesn’t need a referral by one, they said ABA is given by “Board Certified Behavior Analyst (BCBA) and highly trained Behavior Therapist (BT) or Registered Behavior Technician (RBT).” Those aren’t doctors.
Once again, your anger is misplaced; I never said ABA doesn’t exist but I said you don’t see licensed physicians referring people to it. Go back and read again since you must have missed that in your anger. You’re insisting on a Google search without understanding what you’re looking at. HIPAA is not an excuse when the therapies are publicly advertised, and you have failed to prove your claims. Have a nice day.
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
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.
Traveling isn't much of an issue, but emigrating can be prevented to some places like Australia and New Zealand.
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
You still don't get it. It's not about experts in a scientific field. It's about 'experts' who literally made up the entire field out of mostly nothing. Psychiatry is not a science.
There's more hard science in driving a locomotive than diagnosing a person with a made up mental condition.
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I mean, technically you're correct. Psychiatry isn't a science, because Psychiatrists are just Psychologists that can prescribe medicine.
Psychology is a soft science, which means that yes it is constantly subject to change.
That being said, if you think they're made up conditions then why are you still adhering to their terminology? Or are you trying to say that psychiatrists will wrongfully diagnose someone for the sake of selling drugs? Because those two things are very different and you've done nothing to show that you're aware.
Made-up conditions or drug-selling motive? Why can't it be both? If I described my inner experience in my own words you might not understand me. Read again: I don't think autism is made up. I don't think ADHD is made-up. But I don't like the 'disorder' connotation of those terms. I'm not disordered, I function differently.
I think a lot of other conditions are made up, or rather they are just descriptions of symptoms with the word 'disorder' attached to it. Recently the whole idea of the brain chemical imbalance as cause of depression has been questioned, but Psychiatrists keep medicating people all the same. Probably most don't want to sell drugs, they just try to help people the best they know and both pharma and academia tell them that's the way. But really, we have no idea what causes autism, or ADHD, or depression. The treatments offered are experimental at best and have often shown to be harmful in the long term. Between a stranger who doesn't know me and doesn't know very much, and myself who knows me and doesn't know very much - who should I trust?
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I have always said that seeing Psychiatrists is a mistake, and that if you want real help you should seek a psychologist first. However, like with cases of people who have bi-polar disorder, (which absolutely is real, you wouldn't even think to claim otherwise if you'd experienced someone on a manic high) they need the drugs because otherwise they will destroy themselves.
I gave up on trying to seek help from those types a long time ago, mainly because I decided that I couldn't find answers from people who couldn't even tell that I was lying.
However I also stopped using their words on myself. If you conflate "self diagnosis" with "soul searching" then yes self diagnosis is ok.
Not everyone does. Some people see it as an easy ticket to manipulate others. As far as who to trust is concerned, regarding doctors, the line for me has always been "do they try to get me to take drugs?".
If yes, fuck off, if no: I'll probably find another reason to stop seeing them.
Okay well here’s where I have no idea what you are going on about then, if that’s how you see them then why did you go to them for mental health advice and why did you take medications they prescribed? Makes zero sense
I see them like this after experiencing their service. Are you sealioning or was that a real question?
I had to look up sealioning since I had no idea what it meant, no I’m not, and since you decided to frame your question that way maybe you just need a thicker skin, you engaged me in the convo, not everyone is going to automatically agree with you in life
So you personally had a bad run in and you did believe in them but no longer do.. okay I guess you are right then may as well invalidate the entire profession cuz schmorpel got bad service.. that is some flat earth type reasoning
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.
There's a pretty significant difference between "I don't trust neurotypicals" and "I don't trust a specific neurotypical person who diagnoses without extensive hands-on experience in the relevant target population, particularly when the population in question tends to intentionally learn to hide their defining characteristics as they get older."
In what way? That people here aren't trusting NTs or that NTs are giving reason to not be trusted?
I understand that it might be an uncomfortable feeling that if difficult to put into words, but can you elaborate on that?
From my perspective, the differences in experiences make it very difficult for NTs and non-NTs to relate to each others' mental experiences. In the past, it's had some very violent and abusive results, and while things have very much improved from then, that gap between experiences still exists and won't likely ever go away. So I guess my real question here is why should non-NTs trust NTs in this specific area?
I can understand being concerning if you're just talking about a lack of trust in general, which I do think is the case, too.
I am in fact referring to the general space, not any particular topic. There is a lot of othering and tribalism that I've observed. It's a dangerous precedent for a community to set, regardless of what the community is focused around.
If leaving away the main context of what i typed is concerning you, then yeah ...
Or do you want to say that ND people are disentitled from knowing themselves best?
Just to make sure you "concerned" people know what i am talking about (and i speak for this whole community, for they are diverse): I'm talking about people with special sensitivities and special abilities which are very much needed in this kind of "civilisation". Such people used to fulfill special tasks within their tribes, back in the times when humans were still living in more natural societies. I'm talking of a low percentage of human populations (well, it's >15% if we count all HSPs) that evolved having certain qualities which turned out to beneficial for those populations -- not of people who have some kind of "disorder" that would require clinical attention or what would naturally get selected out in the course of evolution. What constitutes a disorder/disability is IMO the consequence of all the trauma which such people receive by not being properly recognised and given their special tasks within today's society. No doubt many of them are suffering from it, but it's also very understandable if they were to say that they wouldn't want to be clinically handled by the methods said society usually has to offer.
fwiw, here is an essay that speaks about exactly this same thing but it does take some more words and referances to get a message against pathologising across. It's a whole series of essays.
I agree 100% with it, would just have chosen a somewhat different language.
post in this forum: https://lemmy.world/post/4802441
direct link to the essay: Autistic people – The cultural immune system of human societies
if you like that one, I suggest to continue with this one, as it plays well into the context here (at least that's what I read next): Autistic people are not for sale
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.
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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. :)
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I know and I wasn’t specifically addressing that picture but also multiple comments stating that someone might abuse self diagnosis, which to me is just gatekeeping.
That's not gatekeeping
This is gatekeeping:
We „the autistic community“ have decided that self diagnosis is valid and that is a fact. So lets just not discuss
Gatekeeping is specifically excluding people for arbitrary stated reasons. You're keeping the gate closed when you gatekeep
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No, it is not.
From oxford languages:
the activity of controlling, and usually limiting, general access to something. "Wal-Mart's cultural gatekeeping has served to narrow the mainstream for entertainment offerings"
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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I never said that. But I am part of it and I am happy that we accept people who self diagnose since it is tremendously difficult in certain circumstances to get a diagnosis.
Additionally, I find it unfair to not state „the autistic community as a whole has decided but my opinion is different“. People will get the wrong impression and we further empower aba and other anti autistic measures if we allow gatekeeping.
I‘m not trying to fight here. I just want people not alienated. Make any sense?
Your view makes sense and you're free to believe it.
But many others have different views.
For example the comment of whoisearth described a negative experience with overinclusion. Their view is valid and to be considered.
You answered with "let's just not try and gatekeep and we're on the same page", simply ignoring their point and asking them to unconditionally adopt your view.
You are free to only consider your view and ignore or even discredit others (as "gatekeeping").
But do not act like you represent us.
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Thanks. I just want to clarify on some things which might be obscure since autism and all:
- I accept that whoisearth made these experiences but I don’t come to the same conclusion.
simply ignoring their point and unconditionally adopting your view
No. That is not what I said. It just does not make sense to me to draw a conclusion like that from this experience. Also, the „silent masses“ is not an argument, no sources have been cited and it is an anecdotal fallacy. (I.e.: I made this experience so this is representative)
If you google „autism self diagnosis valid“ you will find many articles stating that in general, self diagnosis is a way of dealing with the very limited resources in autism healthcare and considered a more helpful strategy at this point.
We are talking about people harming themselves or worse because they are helpless and don’t know what to do. Gatekeeping cost’s lives.
Also, if someone wants to challenge me, attack the idea that invalidating self diagnosis is gatekeeping (which will probably fail) and not me personally because it shows lack of character.
The summary of this imo is that the experience of parents to autistic children to late/undiagnosed autistic adults could not be more different and we should probably just leave our pent up emotions at home and try to find common ground and accept eachother. What happens otherwise (which we have seen) is two sides usually living in their echo chambers and disresprecting the other side when they come in contact.
It’s pretty impossible for me to explain autistic thinking of an adult to anyone not on the spectrum because it’s night and day from allistic thinking.
I made this experience so this is representative
That is not what they claimed. They claimed to represent "many", not everyone. Only you made that claim.
You can tell them that their argument is "an anecdotal fallacy" for which "no sources have been cited" and ask them to provide further evidence. That is not what you did. (You responded with your own sourceless anecdote, followed by the aforementioned.)
attack the idea that invalidating self diagnosis is gatekeeping (which will probably fail) and not me personally
You seem to have misunderstood my intent.
I don't really have a strong opinion about people who self diagnose. It does not matter to me whether or not they're freely included. As such, I do not intend to "attack the idea that invalidating self diagnosis is gatekeeping". As I said, you're free to have that opinion, I won't challenge it.
The thing I do have an issue with is how you presented your opinion as without alternative, claiming to represent the autism community as a whole and disregarding others' points of view.
You can try to invalidate my point, insulting me by saying that criticising your way of presenting and discussing views "shows lack of character".
But that won't stop me from telling you to please stop unreasonably misrepresenting and disregarding others in the future.
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You‘re splitting hairs now and I wont go along with that.
I do accept that I could have phrased it better, my core point was correct though.
Have a good day.
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.
No problem. I remember talking to my friend who works in autism support before my assessment, and I was shocked when he said it's still valid to identify as autistic even if you get a negative diagnosis. I said "they wouldn't like that on the autism forums" and he just rolled his eyes. The online community really isn't what the community is like!
My assessor said the same thing. There's a spectrum of symptoms and no objective test, and ultimately for low support needs, whether yours reach the clinical significance for a diagnosis is a judgement call. You wouldn't have passed the preliminary meeting to get a full assessment at all if you didn't have autistic traits.
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Thanks for elaborating. I mean, I would say someone who thinks they are autistic would most likely have a reason for that. Mostly that is more than one or or one very strong autistic trait. Without that I would ask how they concluded they might be autistic.
An then there is the somewhat tinfoil hat style idea that you have trolls and non autistic people in online communities to an extend who can make the majority if a group is very small and not moderated enough. That way you can end up with people preferring to judge if others are valid instead of blanket accepting everyone.
There are a lot of factors that can contribute to this. Also, I have met people who pretty sure are on the spectrum but who are ableists par excellence since they were molded to fit society’s standards. So, there is a ton of stuff to take care of in a sub like this.
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.
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It really comes off confrontational. As an autistic adult with an autistic wife I can vouch for the exact opposite. It took me years to get a diagnosis, same for my wife.
We don’t have any resources for autistic adults, doctors don’t know shit about autism in adults and if someone has an abuse trauma, they get institutionalized for that instead of looking at the bigger picture.
I don’t wan to fight you. Your feelings and experiences are valid. Let’s just not try and gatekeep and we‘re on the same page, deal?
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@Haui @whoisearth
I don't understand your "It really comes off confrontational." What is it in your words.
I had one visit with a pcp, and then read his session notes because I could. It was obvious that he really didn't get what I said and instead reported that I was flakey, rather than consider that there was more depth than he could recognize. I wrote to correct him. I may have to teach him that diferent is not bad or dumb or a disability, it can also be a superpower. Just because I stim behind my back, doesnt mean that I can't understand particle physics and ask hard questions, or sometime overload and need to leave the room. Medicine is dumb.
You are right, yo don't want to fight me. As a camo I'm not exactly sure that my feelings are valid, even though my memories are sharp, and I know what I did would piss some people off. I mean, the past is the past and i'm not denying it happened. The reframe is comfort. Every day, millions of 'Oh yeah's.
I'm working on figure it out.
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I‘m having a hard time finding the source of the miscommunication here but I get you. It is insanely frustrating to talk with the uninitiated about autism in adults.
My therapist stepped on my feelings so many times I can’t count them. „Do you really think you‘re autistic?“ well, the diagnosis says so and I also stimm a lot, have selective mutism, lack facial expressions, don’t understand body language, cant read or remember faces, am mindblind and countless other things I can’t think of rn.
I‘m not stupid either but it turns out I‘m very easy to take advantage of if I trust someone. Bad combination.
Spicyautism came about as a troll subreddit for non-autistic parents of autistic children to talk about how much they hate low support needs autistic adults. They only posts there that get more than 20 upvotes are "Here's why I don't think L1s really have autism"
Proving my point? You're a non-disabled person trolling a disability forum with ableism, but you think you have some righteous justification because you know somebody with a more severe disability. And you'll never self reflect on it. Spicyautism in a nutshell.
"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
This sounds terrible. My daughter recently got an autism diagnosis which we’ve been able to use to help get her better accommodations in school. Would you mind clueing me in to some of this abusive therapy stuff so that I can recognize it if she ends up in a situation like that?
Well when I was first diagnosed my school would just occasionally lock me in a room separated from the rest of my class and it only somewhat ended when my parents found out what was happening and even then the extra help I got was just doing my school work in a different room and when I tell them it's not helping my teacher would simply lock me up again all the extra help did was just preventing me from having a social life and all of this was happening even after changing schools and all my folks could do is find a psychiatrist that would undiagnose me Edit: in hindsight I recall seeing a reddit post I'm to lazy to dig back up on r/Vermont talking about how a pedophile was fired from a daycare and the comments were talking about how it turns out child abuse is commonplace in Vermont daycares and that very same predator got a job at a different daycare so I guess the moral of all this is if you're a parent keep your kids far away from Vermont the schools have abousers and the daycares have predators
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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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 feel you!
I'm on my fourth year and third attempt at even getting access to a professional. My current open options would be to travel abroad and pay $2500 to get a diagnosis that isn't medically valid in my country.
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.
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.
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.
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 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.
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 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.
Because a diagnosis can tell you what you are, it's not a supposition anymore, and you don't have to convince yourself as it becomes an objective truth. I used to think I was autistic, and while I wasn't that far, autism wasn't the right diagnosis and that new information allowed me to act on the right things. I live a much better life now than when I was relying on my self-diagnosis
Diagnoses aren't objective. Sorry to break that one to you. Obviously they can help, but let's not overstate what they are.
Yes, but you are answering on the experience that diagnostics are available to you, and what sounds like an assumption that this is universal.
The biggest point of contention is people who want to be assessed properly, but can't get a professional to sniff their brains. They still are who they are and need help and support.
Of course, if it isn't available to people, my point falls apart completely and I was in an ideal situation that isn't as accessible to most people. (I live close to a mental health center specialized in autism)
Still it helped me tremendously and I want to encourage people to seek a diagnosis.
For people who don't/don't yet know, support groups like this one or ND friends are invaluable
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"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.
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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.
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I would wager that not everyone that claims to have diagnosed themselves has the capacity for understanding that you seem to.
You seem like you actually tried the system, then used it as a sort of guideline for defining yourself. I'm a little confused why you would continue to use their terminology, but I also accept that it's not really my business what you call yourself.
I don't know you, so I don't use definitive terms. But I accept that there are merits to self-diagnosing, if you are truly seeking to understand yourself.
I'm sorry you've gone for so long without the help you need.
Thank you for your patience in responding to hurtful and dismissive ignorance. The "it works for me so you're lying!" attitude towards the medical system here is maddening.
Well, I do kind of understand the position. I'm bothered by all those people saying "everyone is a little bit ADHD" as well.
I just think there needs to be an open dialogue about self diagnosis and that there is a difference between people just claiming something and people who did their research and "soul searching", maybe even have professional opinions but no official diagnosis.
In "Unmasking Autism" Devon Price called my generation the lost generation. Women and minorities who grew up during a time when autism was being diagnosed but the criteria were based on behavior of a Caucasian young boy. We were overlooked and had to fight for ourselves. When I went to elementary school Asperger's syndrome wasn't even in the DSM yet.
Tbh, I'd much rather be neurotypical or at least have resources to actually help me. Unfortunately that's not an option so I'm doing the best I can.
Tbh, I’d much rather be neurotypical or at least have resources to actually help me. Unfortunately that’s not an option so I’m doing the best I can.
I'm so sorry you're wishing to be someone else. YI imagine you must experience significant difficulties to get there. Still, I'm happy you have the motivation to continue making changes in your life so you could be happy. If you find anything useful, please share so that us other autists can learn about it :)
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That wasn't my point, in any way shape or form.
I gave up on psychologists and psychiatrists when I was very young. I decided they were worthless, and that I would define myself and find what works for me.
I don't claim to have "autism" or "adhd" or anything else because labels do not matter.
That being said, I also recognize and have seem firsthand through my friends that therapy and treatments can help.
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